©2008byCathleenLewis

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ISBN 978-1-59555-208-2 ( IE) Library of Congress Cataloging-in-Publication Data Lewis,Cathleen,1957–Rex:amother,herautisticchild,andthemusicthattransformedtheirlives/CathleenLewis.

p.cm.ISBN978-1-59555-150-41.Autisminchildren.2.Autisticchildren—Familyrelationships.3.Parentsofautisticchildren.4.Music therapy. 5. Creation (Literary, artistic, etc.)—Therapeutic use. 6. Autism—Treatment. 7.Autisticchildren—Biography.I.Title.RJ506.A9L492008616.85’270092—dc22[B]

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Inlovingmemoryofmymother,Fauvette,thatyoucouldhavelivedtoknowtheblessingofRex.

IfIcanlovefullyandcompletelyasamother,it’sbecauseyoulovedmefullyandcompletelyasachild.

ContentsPROLOGUE

CHAPTERONEBeginning

CHAPTERTWOIntotheDark

CHAPTERTHREEAWorldUpsideDown

CHAPTERFOURTheMeeting

CHAPTERFIVESearchingforUnderstanding

CHAPTERSIXMiracles

CHAPTERSEVENTheRippleEffect

CHAPTEREIGHTTheRealWorld

CHAPTERNINESavant

CHAPTERTENASystemOutofTouch

CHAPTERELEVENI.E.P.

CHAPTERTWELVEAftermath

CHAPTERTHIRTEENMusicallySpeaking

CHAPTERFOURTEENBeyondtheMusic

CHAPTERFIFTEENMeetingDerek

CHAPTERSIXTEENRex’sTime

REFLECTIONS

ACKNOWLEDGMENTS

ABOUTTHEAUTHOR

PrologueI walked into the room holding my son’s hand. He was excited andbuoyant,andhisspringystepsshowedit.Asheapproachedthewomanwho stood waiting to greet him, his body was almost electric, a grinstretchingacrossthewidthofhisroundface.Shewaselegantasusual—perfectly dressed and perfectly coiffed. She was smiling as heapproached.

Hisenthusiasmprecededhim,announcingbeforeheevenreachedher,“It’snicetoseeyou,Lesley.Areyouhavingagoodday?”

Lesley asked if they could shake hands. He extended his hand outlimply, a notably odd contrast to his otherwise vigorous and exuberantbody movements. It appeared so fragile. But the woman’s handshakewaslikeashotofadrenalinetohim,andhishandsuddenlywenttautinhergrasp.Onpulling itaway,hebeganjumpingupanddownforafewseconds, and when he stopped jumping, his body seemed unable tocontaintheemotion.Hisarmssuddenlybentattheelbows,hisforearmsmoving up and down in a rapid flappingmotion,while his head beganshakingfromsidetoside,likeawindupdollsuddenlygonehaywire.

Lesley didn’t appear fazed by this sudden and extreme display ofexcitement and erratic body movements. A consummate professional,she insteadmerelysaid, “Rex,whyyou’vegrownso tall in the last twoyears.”LesleyStahlhad recordedher firstprofileonmyson twoyearsearlierwhenhewasonlyseven.Nowshewasbacktoseehowhewasdoing.

Istoodbehindhimand laidahandoneachshoulder,applyingsubtlepressure,whichhelpedhisbodyregaincontrol.

“Howoldareyounow,Rex?”Lesleyasked.

Nineyears old!” he said, as though it was a proud accomplishment.“Buthedidn’tlingerthere,histhoughtprocessalreadymovingforward.“Ilikeyou,Lesley!”

WhenLesleyrespondedinkind,perhapshopingtothenmoveforwardintheconversation,Rexsaid,“Ilikeyousomuch,Lesley!”

“SoRex,whatgradedoesthatputyouinnow?”Lesleyasked,referringbacktohisage,whileignoringwhathehadjustsaid.Ididn’tsayaword—I’d been asked to refrain from speaking asmuch as possible—but Iknewwhatnotinterveningwouldmean.

He repeated eagerly, “I like you so much, Lesley,” and awaited herresponse, like he was stuck in gear. Again, she refrained fromresponding,presumablywaitingforhimtoanswerherquestionabouthisschoolgrade. Ibitmy lipashesaidagain,automatically, “I likeyousomuch,Lesley.”Abrokenrecord.Andastalemate.

Finally,anotherwoman in the roombroke in.Shariwas theproducer,supervisingthecamerasandsound.TheCBStelevisionnewsmagazine60MinuteswashereinforcewithcorrespondentLesleyStahl,whohadarrivedthatday,headingtheteam.Theproducerhadspenta fewdayswithusprior to this interview,andsheexplainedthesituationtoLesley.“He’swaitingforyoutosay,‘Ilikeyousomuchtoo,Rex.’”

My son had his scripts . . . indeed he broke them with difficulty ineveryday conversation. Until Lesley responded in kind, “I like you somuchtoo,Rex,”hewouldbelockedinplace,unabletomovehisthoughtprocessforward.Itwasasifhewasanautomatedphonemenu,which,notgettingaproper response, loopsbackendlessly to theoriginalcue.Herlikeresponsewouldprovidethecompletionheneededtofreehimtoanswerherquestions.

“Ilikeyousomuchtoo,Rex,”Lesleysaid,complying.

Itwas instantaneous.Hisbodyvisiblyrelaxed.Andthoughitwas lessnoticeable,minedidaswellashebegantoanswerherquestions.

AlthoughshehadstooduptogreetRexasheentered,Lesleywasnowseatedwithhimstanding in frontofher,putting thembothateye level.Rexhadrelaxed foronlyamoment,butnowhisbodyhad turnedonceagaintoextraneousmovementsandexcitement.Sheaskedifshecould

supporthimwithoneofherhands,buthecouldn’tseemtoholdhisarmsstillenough for that.Again, I tried thebest Icould todrainsomeof theexcessadrenalineoutofhimbyputtingacalminghandononeelbow.Itwouldbehardtoday—Rexwasjusttooampedup.

Lesleycontinuedtointerviewmysoninwhatwasalaboredprocessforhim. He sometimes maintained his silence, seemingly confused by aquestion,orsimplyansweredyesornowithoutfurtherexplanation.

“Haveyoueverbeeninaswimmingpool?”Lesleyaskedhim.

“No,” he answered immediately. Shari had asked me not to jump inunless itwasnecessary.TheywantedRex toansweronhisown,but Icouldn’t let this onegobecause I felt his answer to oneof his favoriteactivitiescalledforalittlenudge.

“But Rex, we have a pool at home. You love swimming,” I promptedhim,tryingtofocushismindonthequestionathand.

“So,youdoswim?”Lesleypressed.

“Yes,” he said. His body was calm now. Hewas trying so hard. Thecamerashadcaughtthewholething.

Hehadn’tbeenexpecting thequestionaboutswimmingpools.Maybethatwasit;thecontexthadconfusedhim.Ormaybeitwasthewordever.DidRex understandwhat thewordevermeant? Itwas such an open-ended,abstractword.Surely if she’daskedhim ifhe’dbeenswimmingyesterday,hewouldhaveansweredwithahearty,“Yes,Lesley!”Maybeevenadding, “And Ihadagreat timeswimming.”Aquestionneeded tobeconcrete, limited in timeandspace, inorder tobeansweredbymyson.

Wewerehittingdeadendswithtoomanyquestions,untilLesleyaskedhimabout anautobiographyhehadwritten for somestudents inNorthCarolina who had mailed him letters. In answer, he recited the wholeautobiographyverbatim,unabletocontainhisenthusiasm.Itwasascript,merelyrotememorization,soitwaseasycommunicationforhim.Ashe

finished by saying, “I’m learning to snow ski. I like to ski full speedahead!”hewaseverybitachildwholovedhislife.

When the interview mercifully finished, Lesley walked ahead to thestage as I gave Rex a guiding arm. I was happy to be done with thearduous process we’d just completed. “It was an interview-issimo,” hetoldmeaswemadeourwaydownthebackstagecorridor.“Thatmeans‘little interview’ in Italian,” he explained in a conspiratorial way, like hewas imparting a treasured piece of information. I wasn’t sure, but Isuspected “issimo”actuallymeant theopposite—big. Iwondered ifRexhadunderstooditwassupposedtobealittleinterview,butforhim—andforme—ithadturnedouttobebig.

I was just glad to bemoving onto the stage for the other part of theinterview. This would be much easier for Rex. We had been in thistheateronmanyoccasions,butonlyintheaudience.Todayithadbeenreserved for our group, and the auditoriumwould remain empty. I wastakenabackbythecontrastintheclotheswewerewearing,casualandcolored,with the black, dramatically lit setting on the stage.Butwhat Inoticed even more was Rex’s smallness against the backdrop of themassive instruments that awaited him. There they stood, side by side,twinSteinwayconcertgrandpianos,daunting in theirmajestywith theirsleek lacquered finish. Rex, however, wasn’t intimidated. In fact, hiswhole body seemed to relax the moment he touched the familiarinstrument.

My little boy felt the piano bench, then maneuvered his body intopositioninfrontofthekeys,hissmallfeetstretchingtoreachthepedals.He played middle C and then touched his belly button with the samefinger.“I’mrightinfrontofmiddleC,”heannounced,whichmeant,“Yes,I’mperfectlycentered.”

Hispianowasawash in light,but fortunately,noneof theglareof thespotlightshithimintheface.Iknewwellhowsensitivehiseyesweretolight.Hewasveryfamiliarwiththispiano,althoughhe’dneverplayed itonstagebefore,only in therehearsal room.His fingerscameto lifeonthe keys, attacking them, no longer seeming fragile; theywere insteadinfused with dexterity, strength, and speed. As they had during the

interview, the cameras caught it all. But here there were even morecameras, and they covered every angle. Nothing Rex could do wouldescape CBS here—the 60 Minutes cameramen were poised to catcheachnuanceofhisfingersandbody.

“What is that you’re playing, Rex?” Lesley asked. It sounded likeMozart,orwasitBach?Morelikelythannot,itwasjustvintageRex.Or,more precisely, Rex was weaving together classical influences withothers,moreromantic,intohisownimprovisations.

He confirmedmy assumptionwith his answer, “I don’t know, Lesley.”Thatwashiswayofsaying,“I’mmakingitupasIgo.”

“Well,it’sbeautiful,”LesleysaidasshesatdownattheotherSteinway.The real interview would be here. That was fortunate, since this wasRex’sturf.

“Rex, I have a new song to play for you. I’m going to play it for youonce,andthenI’dlikeyoutoplayitback.Isthatokay?”Lesleyasked.

“That’sokay,Lesley,”Rexsaid.

“This is called ‘Try to Remember,’” she announced as she beganplaying.Shehadgottenthroughmostof thefirstversewhenherhandssuddenlyfrozeonthekeys.TurningquicklytoRex,shesaid,“Imadeamistake.CanIplayitagain?”

“Yes,Lesley,”hesaidsimply.Shegaveitanothergo.Thistimeshegotalittlefartherintothepiece,butherhandstrippedupagain.Beforeshehadthechancetoacknowledgeit,Rexcoveredhisears,exclaiminginaloud,moaningvoice,“It’samess,Lesley!”

It’samess!Hehadbeensofloppyandchaotichimself, justmomentsbefore,asheansweredherquestionsverbally,yetnowhewascryingoutforprecision.Indeed,anythinglessseemedtoliterallyhurthisears.

“You’reabsolutelyright,Rex.It isamess.I’msorry,I’mnotasgoodapianoplayerasyou,”sheapologized.Shedecidedtotryadifferentsong.Withthepressureon,sheplayed“I’veNeverBeeninLoveBefore”from

starttofinish.Butshedidn’taskRextoplayitbackverbatim,asshehadwanted with “Try to Remember,” or as she’d done for his first profile,when he’d played back “Do You Know the Way to San Jose?” afterhearingitonce.Instead,shethrewinatwist.

“Rex,couldyouplaythatinthestyleofMozartforme?”sheasked.

Hisanswerwasimmediate—hedidn’thesitateaninstant,nottoreflect,nottomeasure,nottocalculate.Instead,hishandsjumpedtothepianokeys, filling the theaterwith light notes, cheerful notes, lotsof trills andflourishes,Mozart-like runsupanddown thekeys to fillout themelodyline.Lesley’spiecewasinstantlytransformedintoclassicalMozartunderthemasteryofmyson’stinyhands.

Itwasawe-inspiring towatch,aswasshownonLesley’s faceasshetookitin.Asalways,Rexclappedforhimselfwhenhefinished.Therestofusonthestageapplaudedinsync.Instant,rotememorizationwasoneremarkable skill, but immediate creative transformation was anotherdimensionaltogether.Nowthe funbegan!Lesleyaskedhim ifhemightbeabletoreplaythesong,butthistimeinthestyleofChopin.RomanticChopin!

“I’llplayit likeaChopinwaltz,”Rexannouncedashislefthandbeganjumping up and down the piano in three-quarter time.One, two, three,one, two, three . . .his lefthandmade flawless leapsashis righthandpickedupthemelody.Andtherewerethoseunmistakablelibertiestakenwith the tempo—now speeding it up, squeezingmore notes in, only tolaterspreadthemoutlanguidlyasChopinhadintended.Thelistenerwasdrawninandtantalized,onlytobepushedawaylikearejectedlover.

Lesleybeganshakingherheadindisbeliefasshewatched.Thefloppy,overexcited child, who seemed unable to control his body, was heremasterbothoftempoandmelody.Howcouldhemanipulatemusicwithsuchease?AsIwatched,Iwonderedwhymysoncouldn’tfindthatsamecomfortwithinhisownbody.

“Rex, do you think youcouldplay it in onemore style?Maybe likeaRussiandance?”Lesleyasked.

“Yes,Lesley,IwillplayitlikeaRussiandance,”heanswered.Andthen,as thoughFiddlerontheRoofwasbeingrehearsedon thatverystage,“I’veNeverBeen inLoveBefore”wastransformed intoachoppydancebeat, romanticism replaced by driving power.Rexwas having fun, andwhenweapplaudedagain,hebecamemorethangiddy—helookedlikehewaselectrically charged.His bodywent slightly rigid in his passion,forcing him to tilt backward on his piano bench. I could seemy son’slaughbuildingup insidehimuntil abigbelly laughbroke free. Itwasasoundasstunningasthemusicinitsabandonandresonantpurity.Itwasalaughthatcausedlaughter

“You’reamazing,Rex!”exclaimedLesley,chucklingherself.

“Yes,Lesley,”hesaid.Spontaneous,guileless, joyful—Rexwaseveryinchaninnocentchild.

“Theredoesn’t seem tobeanything I can throwat you that youcan’tdo,Rex,”shesaid.

“No,Lesley,”heresponded,simply.

MysonhadjusttoldLesleyStahlthattherewasn’tanythingshecouldthrow at him that he couldn’t field—musically anyway. Not with hisprodigious talent. The 60 Minutes cameras caught it all for a secondprofileonmylittlenine-year-oldboy,onlytwoyearsafterthefirstone.Butwhywere the cameras back so soon? Theworldwas filledwith giftedchildren—so many child prodigies.But there weren’t many like Rex, Ithought,withacatchinmythroat,notmanywhohadbeenputtothetesttimeandtimeagain,whetheratthepiano,performingfeatsofwonder,orjust going about the simple daily tasks of life. Rexwas an exceptionalchild, no doubt about it. He was exceptionally gifted and exceptionallychallenged.ButwhyhadRexbeengivensomuch—onbothendsofthespectrum?AsIwatchedhimbeamingwithprideathismusicalabilities,Icouldn’thelp thinkingabouthowmuch lifehad thrownathim. Itwasallsummed up in the opening lines of “Musically Speaking,” his first 60Minutesprofile, filmed at age seven and airing three months after hiseighthbirthday.CorrespondentLesleyStahlopenedthesegmentsaying,“Oneofthemostfascinatingandmysteriousfeaturesofthehumanmind

is its capacity to house striking abilities and profounddisabilities in thesameperson,aswediscoveredinaneight-year-oldboynamedRex.”

Fascinating.Mysterious.HowcouldRexplaymusicwithsuchmasteryandnotbeable toanswerasimplequestionor tiehisownshoelaces?How could his inability to control his body be so contradicted by theabsolute control he has playing the piano? These questions, and somanymoreI’daskedmyselfsinceIbroughthimintotheworld,wereallleadingmetowonderwhatbeautifulmysteryhadcreatedtheremarkablecomplexitythatisRex.

CHAPTERONE

BeginningFearnotthatthylifeshallcometoanend,

butratherfearthatitshallneverhaveabeginning.

—JohnHenryCardinal

Iwaspregnant—verypregnant.Ilookeddownatmybellyandhuggedit...andhim.Weknewitwasahe;rather,“he”wasaboy.I’dgetitright.We’dgivehimanamesoon,butithadtobetheperfectname.Anythinglesswould be, well, not quite perfect.My husband,William, and I hadboth wanted a boy, William being South African and macho, and mebeing—or ratherhavingbeen—a tomboy.Admittedly, Iwasstill quite inlovewithsportsandmyhusbandand theworld! Iwasgiddy, that’s theword. I was foolishly, schoolgirlishly giddy! Three weeks from delivery,and I was in this growing state of excitement, of anticipation that wasgrowingwithmybelly,growingwiththelittleboywhohadmyprofile.Theultrasound had captured the image of my pug nose—it wasunmistakable.That’swhenthebeautifulrealityhadreallystruckhome.

IknewthatmuchofthiseuphoriawasbecauseIhadwaitedsolongtohaveachild.Thirty-sixisnotoldinabsoluteterms,butitfeltsoinbaby-bearing years. And it was inmy thirty-sixth year that the ticking ofmybiologicalclockhadbeguntoresoundlouderandlouder,grippingmelikeso many women around my age. Fortunately for me, I was also anewlywed.Afterbeingwrappedup inmyprofessional life inFrance fortwelveyears,Ihadmovedhometheyearbeforeandhadmetthemanofmydreams.Hehad just arrived fromSouthAfrica, here for aweekonbusiness;andbecauseI’dlivedabroadforsolong,itfeltinawaylikewewereboth foreigners.Meetingona typicallysunnyday inLosAngeles,therehadbeensomethingfatefulinourinstantbond.Ithadthesmackofdestiny.Iknewthatwasthestuffofromancenovels,notreallife,butinaworldthisbigandrandom,thatkindofchancemeetinghadtobewritteninthestars.

Isighedacontentedsighandhuggedmytummyagain.

Ithadbeensuchaneasypregnancy.Nomorningsicknesstospeakof,andmyLamaze traininghadme fullyconfident thebirth itselfwouldgojustassmoothly.

That’swhy the phonedropped frommyhand as I heard the doctor’swords through the line. “The ultrasound shows the presence of asuspiciousmassinthebrainofthefetus.”Ifeltasharppaingripmybelly.Orwasitjustinmymind?I’dhadmyappointmentthatmorning,andthedoctorhadreviewedthescanright in frontofmeandhadsaidnothing!No, theopposite, in fact—he’d beenall smiles. That’swhy I’d beenonsuch a new mother’s high all day! And now he was dropping thisbombshelloverthephone?Thedoctorexplainedthathe’dwantedtolookat the film more closely before advising me. That was the reason hehadn’tsaidanything.

ThephonedroppedfrommyhandasIheardthedoctor’swordsthroughtheline.“Theultrasoundshowsthepresenceofa

suspiciousmassinthebrainofthefetus.”

“Itwasn’tthereamonthago,”hewenton,asthoughthatmightconsolea soon-to-be first-timemother about the fact that therewas something“foreign” in her baby’s brain. I knew it hadn’t been there amonth ago.Whatdidhethink,thatIwouldhaveforgottenthatlittlebitofnews?ThatIwould have remembered my baby’s upturned nose but not the“suspiciousmass”?ItriedtocalmmyselfdownsoIcouldjustlisten.Buthedidn’thaveanythingmoretosay.Hecouldn’ttellmewhatthe“mass”might be. More extensive ultrasounds were needed to determine that.Andtheyneededtobedoneimmediately.

After a battery ofmore detailed imaging, a conclusive diagnosis wasmade—themasswasananachroidcyst.That’swhattheysaidwasinmybaby’shead—agigantic,fluid-filledcyst.“It’sbenign,”anewdoctorsaid,this one in charge of high-definition imaging at Cedars-Sinai Hospital.Theword“benign”wasmeanttobeareassurance.Iknewthat,butIwas

only partially relieved because I was confused by the terminology. Istruggledwiththatwordbeingusedtodescribesomethingthatfilledupaquarterofmybaby’sheadandwasn’tsupposedtobethere.Inpractical,nonemotionalterms,thedoctorstoldmeitmeantitwouldn’tendangerhislife.AlthoughIneededtodeliverhimquickly,thedoctorscouldwaitafewweeks to operate—critical weeks that would allow him to gain someweight, some resistance,beforeundergoingwhatwouldbean invasivesurgery.

I consoledmyself with the fact that the problemwas repairable. Thedoctors had even toldme there are adults who have lived their wholeliveswithcysts in theirbrainswithoutevenbeingawareof them. Iwaslulledintotheideathatthethingreallywasinnocuousafterall.Aproblemthatsimplyhadtobedealtwith.Oncethesurgerywasover,wecouldgeton with our lives—our “broken” son would be fixed, andWilliam and Icouldgobacktodreamsandplansforourfuture.

Rexcameintotheworldsoeasily,bypassingallthetrialsandtraumasoflabor.DeliveredbyC-sectiontoavoidanypotentialtraumatohisbrain,hisfacehadthelookofanangel—baldandpureandperfect,notthelookyou associate with typical newborns in their ruddy, rough-and-tumblestate. Tiny feetwith crooked toenails—certainly they’d straighten out intime—and perfect hands. Long, slim fingers adorned by exquisitelysculptednails. I didn’t knowanewbornbabycouldbesomagnificentlyformed. And then there was his crowning glory in William’s book—hisshoulders! They’d caused quite a stir when the delivering doctorexclaimed,“Wouldyoulookattheshouldersonthisboy!”asWilliamandI awaited a first glimpse of our son. There he was, our little boy. WewouldnamehimRex.Short,tothepoint,tough.Agoodboy’sname.Anditmeant“king.”Rex.

At eight weeks, weighing in at ten pounds, our baby was deemedstrongenoughtowithstandthesurgicalprocedure,whichnecessitatedafour-inchincisiondownthecenterofaskullthatwasn’tmuchbiggerthanthat.Theneurosurgeonwasgoing tocutholes in thecyst innumerousplacessothatitwoulddrainanddeflatelikearubberball.WhenIaskedwhytheycouldn’tjustremovethewholething,thedoctortoldmethatthecystwassolargeitwascompletelyenmeshedinbraintissue;totakeit

out,they’dhavetoremovehalfofourson’sbrainwithit!

I willed myself to be strong, as though I could counter Rex’s ownfragility.Ourbabyseemedmuchtoosmalltohavetoundergosomethingsobig. I tried to focuson the thought that itwouldsoonbeover,and Iforcedmyselftokeepmyemotionsandmindincheck.Andmyhusbandwasstoic—alittletoostoicinmyopinion.Iwasn’tsurewhetheritwasamanthing,aSouthAfricanthing,ormaybejustaWilliamthingI’dneverencounteredbefore

We waited in terse silence outside the intensive care unit. Theprocedurehadgonesmoothly,orsowe’dbeentold—thecysthadbeenproperly “fenestrated.”Nowwewerewaiting forour son to comedownfromrecoverytotheICUwherehewouldbeinternedforseveraldays.Itseemed to be taking forever. Was something wrong? Suddenly thesilencewasbrokenbythesoundsofcommotionasthehalldoorswungopen,andinrushedafleetofverybigpeople,orsotheyseemed.Theyhoveredover thebed theywerehustling toward the intensivecareunit.Atfirst,allIcouldseeoftheoccupantofthatbedwasanetworkoftubes,intertwining plastic life support for an unseen patient. Those people allbutobscuredtheirtinyten-poundpatient,butitwasdefinitelyhim—Rex!Myheartleaped,andsodidI!Ijockeyedforpositiontolookonhisfaceas hewas hustled past us. Like a football team running their preciouscargoprotectivelyintotheendzone,preventinganyinterferencefromtheopposition,theyhoveredinacloudofurgencythatmadeRexseemevensmallerandmore fragile.But therewasnoway theyweregoing togetpast thismother without my at least being able to look into my son’seyes. I lunged behind the bed as they hurried past, my reflexessharpenedbyapotentcocktailofanxietyand love.Luckily,Rex’sheadwastiltedbackwardsohewasactuallyfacingme.

That’swhen Isawhiseyes. I felt theairbeingknockedoutofmeastheypiercedrightthroughme.Rex’seyeswerefrozen,trans-fixedonme,asthoughhewasjustwaitingforanexplanation.Itseemedlikehiseyeswerepleadingforareason.“Thereisnoreason,”Iwantedtotellhim.AsI continuedwatching him, his eyes boring throughme, I felt the steelybondof lovebeingforgedbetweenus.For,althoughI’d lovedRexfromthemomenthewasborn,evenfromthemomentI’dfelthispresencein

mywomb,therewassomethingnewtothis feeling—itwasrawandall-consuming,bothmaternalandfiercelyprotective.Somemothersfeelthesurge grip their heart themoment they stare into their newborn child’sface;forothersitgrowsovertime.Withsome,sadly,itnevercomes.Formeitwasinthatmoment,likeanarrowpiercingmyheart.

REX’SLOOKthatdaywouldhauntmeforyears—thelookofinnocenceand pleading—stalkingme relentlessly at night. But I hadmisread theglazed stare.Asamother, I shouldhavebeenable to knowwhatwasreally there inmy son’s eyes. But I hadn’t been able to see past theirintenseopacityandmyownsenseofblameandrecrimination.Thetruthwouldonlyberevealedtometwomonthslaterbyonemoredoctor,onemorepieceofinformation.Thisnewswouldgivenewmeaningtoforever—time would shift and space would go askew. How could I have notknown?Rexhadn’tbeenstaringatmethatdayinthehospital,hiseyespleading.Thefactwashe’dneverevenseenme.Iknewthatnow.

IREMEMBEREDhowbrightlythesunhadbeenshiningontheafternoonIlearnedthetruth—howvibrantlyautumnhadwornitscoloredrobe.Thesunwassoontoloseitsgloss,andIwouldneveragainseefallcolorsinthe sameway. I hadmadeanappointmentwith theophthalmologist atChildren’sHospitalbecause Ihadwanted tohaveRex’seyeschecked.The trauma of the brain surgery had lessened by this time, and I hadbecome concerned about the increasing movement in his eyes. Theyfluttered, not really fixingwell onobjects.Sometimeshe seemed to betracking like he should; at other times he did not, giving his eyes arandom appearance. I didn’t know if he needed a corrective patch orperhaps a minor surgery to fix them. Compared to what we’d beenthrough already,my husbanddidn’t think itwould be a big deal, so hedidn’taccompanyme.

Theophthalmologistfinishedtheeyeexam,shiningalightinmyson’seyes and peering in through his loupe as I stood watching. He finallyaskedme to sit down. As I sat facing him, hewrote some notes on apage.WaitingforhimtoexplainwhatwasneededtocorrectRex’seyesbecameunbearable,thesuspenseforcingmetointerrupt.

“So Doctor, what can we do to help Rex focus his eyes?” I asked,

strugglingnottosoundtooimpatient.

Iwatchedthedoctor’sfaceashewrotethelastcoupleofwordsonthepage.Abriefflashofemotionwasstampedoutbywhatappearedtobeprofessionalconditioning,andhewas inscrutableashe laidhispenonthedeskpadwithfinality.Onlyasoleaudiblebreath,oneofresignation,betrayedanyemotionashefixedhiseyesonmine.

“There’snothing tobedone,”hebegan, thenpausedheavily. Iwasn’tfollowing;Istilldidn’tknowwherehewasgoing.Thedoctor’seyesheldmine,andhejustsaidit:“Yoursonisblind.”

Ifeltmybodydisconnectingfrommymindinthemostbizarrewayuponhearingthosewords.Histonehadbeensomatter-of-factdeliveringsuchabrutal, unexpectedblow. I felt the blow inmygut, butmymindwentnumb,unabletoreallygraspwhathe’djustsaid.Hewaitedforareaction.I was in shock, I suppose. I wasn’t crying, but he extended a box oftissues to me anyway. Maybe he knew it wouldn’t be long before theimportofhiswordswouldhitme.Hewasprobablyusedtothefloodgatesbursting.

“There’snothingtobedone,”hebegan,thenpausedheavily.Iwasn’t

following;Istilldidn’tknowwherehewasgoing.Thedoctor’seyesheldmine,andhejustsaidit:“Your

sonisblind.”

I’vesincereflectedon thebestway to tellsomeoneherchild isblind,andmaybehedidhavetosayitjustlikethat.Itseemedhardtome,likeasuckerpunch.Butattheendoftheday,therereallyisnothingthatcanbesaidto lightentheblow.Blind isblind.That’smyconclusion,and it’ssoabsolute thatanysugarcoating is futile.Theophthalmologist toldmeRex’sblindnesswascausedbyacongenitalconditioncalledopticnervehypoplasia,whichmeant“underdevelopmentoftheopticnerves.”

Tomeitsimplymeanttheimpossible,theunthinkable—Rexwouldlivehislifeindarkness.Itmeantthatmychild,whohadsurvivedthehorrors

ofinvasivebrainsurgeryateightweeks,wouldneversee.Icouldn’tquiteconnecttotherealityofitall—itwasjusttoobig,liketheyweretryingtosnuff outmy baby’s life before he’d even had a chance to live it. I sattherelisteningtothedoctor’sspielaboutthecondition,butIjustwantedtoflee.

“Theproblemisn’twithRex’seyes,”thedoctorexplained.“It’swiththeopticnerves.”

“Whatdoyoumean?Idon’tknowwhatanopticnerveis.”

“It’sanervethatconnectstheeyetothebrain,”hesaid.“Lighthitstheeye, then it travels through the optic nerve to the brain, where it’stranslated into an image. So, in order to have good vision, three partshavetoworknormally—theeye,theopticnerve,andthebrain.”

“Okay,” I said numbly, struggling to focus on the science of it, astremorsbegantoseizemybody.Iwilledmyselfnottobreakintopiecesrightonthespot.Ineedtogettheinformation—emotionsonlygetintheway;holdthemincheck,justforafewminutes.Miraculously,Imanagedtodisconnectmyheartfrommymind.

“Well,what’swrongwithRex’sopticnerves?”

“They’re underdeveloped. They’remuch smaller than normal, healthyopticnerves.And typically,opticnerveshavemillionsof tiny fibers thatserve to convert the light of the world into images. Rex’s optic nerveshavefarfewerfibersthannormal.Evenif thelightmakesit through,hedoesn’thaveenoughfibersforhisbraintomakesenseofit.”

“Howdidthishappen,Doctor?”Iaskedpathetically,lettingmyemotionsseepthroughnow.“Ihadaneasypregnancy,thenthreeweeksbeforehewasdue tobedelivered they foundacyst inmybaby’sbrain,andnowyou’re telling me he’s blind too? That he was born blind! This is notsupposed to happen. Babies are not supposed to be born blind!” Myvoiceandemotionsroseinacrescendo,andIwaswipingmyeyeswiththeprofferedtissuesnow.

“We don’t know exactly what causes it, but we believe it happens ataround ten weeks gestation since that’s when the optic nerves areformed,”hesaid.“Mostoftheneurologicalwiringisalsobeinglaidatthattime. So that could also have beenwhen the seed forRex’s cystwaslaid,even if itdidn’tblossomuntilmuch later in thepregnancy.”Hetoldme therewereother incidencesof childrenwith optic nervehypoplasiawho’dalsobeenbornwithabraincyst. “The twocouldbe related,”hesaid,inwhatsoundedmorelikeaquestionthanananswer.

“Butyouhaveno ideawhatcauseseither?” Iasked ina toneofutterdisbeliefthatsaid,“Iwantaccountability.”

“Nothing conclusive,” he said, launching into an explanation thatsoundedlikehewasreadingfromatextbook.“Butwedoknowthattherewere fewer than one hundred known cases of optic nerve hypoplasiadocumented in thecenturyup to1970, thenduring theseventies therewerehundredsofcases,during theeighties, thousands,andnow it’samajorcauseofblindnessininfants.Wethinkitmustbeenvironmental.”Amazingly,Iwastakingitin,asthoughshockhadsentmeintoahyper-lucidstate.Butthen,myemotionsbeganclosinginfromallsides.

Nothing conclusive, environmental, we don’t know why! Blind, blind,blind!ThosewerethewordsthatswirledthroughmymindasIstumbledoutofthedoctor’soffice,assaultednowbyanunremittingnoondaysun.Iwashorrifiedatthethoughtoftellingmyhusbandandfeltlikethewholethingwassomesortof surrealnightmare.Theworldas I hadknown ithadsimplyandirrevocablyceasedtoexistinthespaceofaninstant.Noonecouldeventellmewhy,givemeareason.Itjusthappened!Justlikethat!Likewe’ddrawnthe“blind”ticketinagreatbabylottery.Thedoctorhad provided me with a straw to grasp. “Children with optic nervehypoplasiamaydevelopsomevisionastheygrowolder.Somedo;somedon’t.Wedon’treallyknowwhy.”

Therewasthatoffensive“wedon’tknow”phraseagain.Hewentontoexplain that it was his special area of great interest and that he wasconductingafederallyfundedresearchstudyatthehospitaltocharttheprogress of children with this eye condition. “Children with optic nervehypoplasia have some striking commonalities,” he said. I didn’t really

know what that meant at the time other than the obvious—they’re allblind! The irony of landing in the office of the nation’s specialist in thisspecific eye condition was lost on me at the time. But I did agree toparticipate in the study before we left. I hoped it might help meunderstand.Ialsoleftwithanumbertocall—togethelp—forapreschoolcalled theBlindChildren’sCenter.As I fled thehospital,pushingRex’sstroller as fast as I possibly could, I realized the very name of thatpreschoolmademefeelsick.

CHAPTERTWO

IntotheDarkAllmylifeIbelievedIknewsomething.Butthenonestrangedaycame

whenIrealizedthatIknewnothing,yes,Iknewnothing.Andsowordsbecamevoidofmeaning.Ihavearrivedtoolateatultimateuncertainty.

—EzraPound

I staredoutat theocean,still stunnedby thedoctor’swords justhoursbefore.Rexlayatmysideunderneathhisbeachparasolwavinghisrattleintheair,asthoughtoflagdownthekayakerpaddlingpast.Ourblanketwasinourusualplaceonasmallpatchofsandwedgedbetweenjaggedrocks.I’dpackedmysonintothesnugglysling,totinghimfirmlystrappedto my chest, along with our beach basket, in order to get here. Thewaterlinewas fairly high in this early afternoon hour, not leavingmuchsandforustowalkon.Thismeantnavigatingafewlowlyingrocksinourpath.But I knew the tides near our homewell—high tide had been anhour ago, and the tidewould be receding quickly today, leaving us aneasiertrekback.Weweretuckedawaybetweentherocks.Hidden,andall but inaccessible to the public, this strip of isolated beach wasunadornedbybeachhomesandwasonly twohundredyardsdownthecoastfromourcondominium.

Sincearrivingatmyhousewiththedoctor’snewsbloatingmymind, Ifelt itsuffocatingme,emotion rising inmychest likeaballoon ready toburst.Williamwasstillattheoffice,andIhadtogetout.Thewallsofourhomeweretooconfining,closinginonmefromallsides.SoIwenttothebeach,practicallyrunningthedistance,inordertobreathe...tobeableto breathe. The salt air, frothy waves, and seagulls calling out—it wasnature’smassage. The ocean has the power to calmme, liftme up; italwayshas.That’swhyWilliamandIhadcometothisrusticMalibucovewhenwemarried,buyingourcondoonthewaterfront.

I was tired from the physical effort to get here so quickly, and thepoundinginmyheadwasreplacedbyheavybreathingasIwatchedthe

ebbandflowofthetide.Wavessmashedonsandandrolledoverrockstodissolve intoskirtsof frothy foamandheadbackout tosea, leavingscattereddeposits of seaweed in theirwake.Tiny ripples, flirtingat thewaterline,hoveredasthelargersetsofwavesgatheredstrengthfartheroutatsea.Therhythmsoftheoceanwereeverevolving,everchanging,andyetpredictableandmeasurable.

As I sat there, I felt the sun beating on my skin as I took in themagnificent horizon, a vast, endless panorama of ocean topped bybrilliant blue sky. I’d often come here to find peace in the beauty ofnature’stableau—theflatnessofthePacificbeyondtheswells,itstexturecontrasted to the riseand fall of thewavesas they reached theshore.The sand, coarse gray andwhite granules, hugged the rocks andwasdottedwithbitsofsealife—shellsstrewnhereandthere,slimystripsofgreen sea grass, and tangles of golden seaweed. A seagull flewoverhead,swoopingbrazenlydowntonipthewateratthetopofarollingwave,asthoughdaringthesurftojumpupandclipitsflight.Hecriedout,high-pitchedandvictorious,ashe roseup to freedomcarryinga fish. Icouldn’t help but smile at his audacity, but then another sound cut in,plummetingmebackto thepresent—shrieksofdelightcomingfrommyside, as though in imitation of the seagull. Rex. Waving his handsemphaticallyasheletouthishappysounds,hewasthepictureofjoyfulglee,completelycaughtupinthemoment.

Howinnocentmybabyboywas.Innocentandunsuspecting,heneversawanyofit,notthesmallestgrainofsandorthesweepingimmensityoftheocean.Ibowedmyheadslowlyandletthetearsfall.

ON THE outside, my husband seemed to accept our son’s blindnessmuchmore quickly than I did. I simply couldn’t believe thatRexwouldneverseetheworld.Iclungtothehopethathewasalreadydevelopingthatvisionthedoctorhadspokenabout.IcertainlyhadtheimpressionhewaslockinghiseyesonmyfacewhenIheldhiminfrontofme.Iwouldparade lightspasthis face tosee if hewould react,or I’dplacehim infrontofthemirrorsthatbabiesnormallylove.Sometimeshereacted,andsometimes he didn’t. Rex’s responses were inconsistent andinconclusive,andyet,instinctively,Ifeltthatstimulationwasthekey.

“I’msurehecanseealittle,”ItoldWilliam.“Icanjusttell.Whatdoyouthink?”

“He’scompletelyblind,”hesaidbluntly,neveronetomincewords.

We had gone for a second medical opinion at the Jules Stein EyeInstituteatUCLA.This timeWilliamwasat theappointment.Hegot tohearthenewsfirsthand.

“Yoursonhasopticnervehypoplasia,”aseconddoctorsaid,repeatingthe fancydiagnosis.Hehadwaveda fewtoys in frontofRex’s face, towhichmysonhadseemedoblivious.“Yoursondoesn’treactvisually toanything,andhe’salreadyclosetosixmonthsold.”

I jumped in, desperate. “But thedoctoratChildren’sHospital said it’spossibleforhimtodevelopsomevisionovertime.”

“Hemightbeabletodiscern largeobjects intime,”heconceded.Justas I felt a door nudge open forme, the doctor slammed it shutwith avengeance. “But will he be able to distinguish you from a horse? It’sdoubtful.” His words seemed heartless and insensitive, but they prettymuchsaiditall.Evenso,howcouldIjustgiveup?

For William, the doctor’s words were a verdict confirming Rex’sblindness.Aswewalkedinsilencefromthebuilding,Iaskedhimwhathewas thinking.Hiswords had become few of late.Now hemerely said,“Themostimportantthingisthatheremainshappy.”Formethatseemedimpossible.

Howcouldablindchildpossiblybehappywhenhe’dbeensocheatedfromthestart?Certainlynotwhenhegotoldenoughtorealize!Ifeltsuchguiltaboutbringingachildintotheworld,knowinghewouldhavesuchahard fightof it.A friendhadgivenmeabook intended tohelpme takeheart titledWhen Bad Things Happen to Good People. I wasn’t surewhether to takeheart fromthefact that Icouldstillbea“good”person,andthatRex’sbirthwasn’tGod’spunishmentforpastsins,ortosinkintotherealityofjusthow“bad”thingswere.

INSPITEofmypainandinability toreallyacceptRex’sdiagnosis, Ididrealize that information could help. So I took the first doctor’s adviceaboutcontactingtheBlindChildren’sCenter.Theyinvitedustocometothe Center for an “intake” to discuss future services for our son; bothparentswere expected alongwith the child. The three of usmade thelongtrekfromourhomeonthecoasttothesmall,gatedcomplexnestledin the midst of the gray surroundings of downtown Los Angeles. Areceptionistgreeteduswarmlyandsummoned theschoolpsychologist,Miranda, who would conduct this initial meeting, along with two socialworkers.TheycommentedonhowcuteRexlookedsitting inhisstrollerdressed in his preppie ribbed green pullover and rolled-up corduroypants, completewith Docksiders he kept kicking off. Itmight just havebeen pleasantries geared to keep anxiety at bay. The staff must haveknown how besieged we’d felt by all sorts of conflicting emotions.MirandaaskedusalotofquestionsaboutourfamilyandRex’sbirth.Shenodded each time I spoke, paying close attention to every word,counterbalancingmynervousnesswith her calmandpoise.Shehad awayof looking empathetic and thoughtfulwhilemaintaining clear focusand purpose in themeeting. The goal was to determine if it would beappropriateforRextoreceiveschoolingattheCenter.Mirandaaskeduslotsofpersonalquestions,but theone that left itsmarkwaswhensheaskeduswhatourgoalswereforourson.

I had been doing a lot of the talking, butmy husband answered thisone.“CathleenandIbothlovesports.Wejustwanthimtobeactive,tobegoodatsports.”HeappearedascalmasMiranda.Ididn’tgetit.Nothiscalmstateandcertainlynothisanswer,whichseemeddisconnectedfromreality.Didn’theunderstandoursonwasblind?Istaredathimasthough he was speaking nonsense, all the while being struck by hardtruthsIhadn’tyethadtimetofaceinthenewnessandtraumaofallthis.RexcouldneverplaytennisasIhadgrowingup,orgolfashisfatherdid.Yes,ofcourse,wehadwantedhimtobeathletic...before.

Don’t all parents project their own hopes and dreams onto theirchildren,makingthemfuturedoctorsorastronauts?Theairhungheavyin the room as I felt so many dreams snuffed out before they’d evenbegun.Ourchild’slifewasscreechingtoahaltbeforeevenbeginning.I

felt leaden. Through all of this, Rex sat in his stroller blissfully andmercifully unaware. I was struck by the unsettling impression that myhusbandseemedjustasunaware.

“William,”Isaid,cuttinginbeforehecouldprojectanyotherfutilegoalsontoourchild,“Idon’treallythinkthat’spossiblenow.”

MirandalookedfrommetoWilliam,thenaddedcautiously,tokeepfromadding evenmore emotion into the equation, “Rexmay not be able toplayallsports,but thatwon’tkeephimfrombeingathleticandenjoyingfitness, if that’swhat hewants.”Shepaused, thenaddedemphatically,“Weworkheretohelpchildrenrealizewhateverpotentialtheymayhave,andtodiscoverareasofinterestthatwillhelptheminlife.”

Ihadalot to learnaboutblindness,andIknewthatIneededtoopenmyears towhatMirandahad to tellus. “Ninetypercentofwhatababylearns is throughvision,” shesaid. “Thatmeans there is little incidentallearninginthelifeofablindbaby.”

Rexwouldn’tbeabletowatchtheworldlikeotherbabiesandmimicitinordertoacquireskills.Hewouldn’thavetheluxuryofbeingapassivelearner.Rexwouldneedtobeengagedinlifebecausetheworldwouldn’tcometohimthroughvision.Hewouldneedtoreachoutthroughtouch,through active engaged learning. Rex would have to be “hands-on.”Miranda used the words “purposeful” and “methodic.” That’s what theteaching would be for Rex, and it would need to begin as soon aspossible.Thatwastherealityofourson’slife,ifIunderstoodthegistofwhatMirandawas tellingus.The taskof filling in that 90percentblinddeficit seemed monumental—from where I sat it seemed all butundoable.Tomakeup forwhatamounted toahorrendous, inexplicablebirthdefect,Rex’slifewouldrequirenothinglessthanendlessworkandabsolute commitment from all of us. But even with that, how couldanythingmakeupfornotbeingabletosee?

ItwasthetouroftheBlindChildren’sCenterfacilityandplaygroundthatprovidedmewithsomedesperatelyneededencouragement.Weglancedinto classrooms where children seemed to be actively engaged inactivities—theclasseswereallhands-on,colorful,andfullof life.Inone

classroom of four year olds, children were busy unscrewing caps offbottlesandthenlocatingcoinsonatabletoputintothebottles.“They’reworkingonfingerandhanddexterity,andtactualdiscrimination,”Mirandaexplained. In another classroom, some younger kids were intent on afinger-painting activity. “The paint has granular Jell-O in it to createtexturetheycanfeel,”thepsychologistsaid.Then,aswewerewatchingsomebabies inhighchairssweepingtheirhandsacrosstheir trays,ourguideexplained,“They’relearningtolocateCheeriosontheirtrays.”Thebellforrecessrang.

Miranda ledus intoayardascolorfulas theclassrooms.Acoupleofolder kids walked across the playground with their long, white canesstretchedoutinfrontofthem,guidingthem,untiltheyreachedthestairsofsomeplaygroundequipment.Theyseemedtoaccomplishthetasksoeasily. “Theyknowtheroutewell,”Mirandasaid. “Theyusetheedgeofthegrassmeeting that spongy surfaceunder the structure asa spatialindicator.”

Bothstudentsclimbed thestairsof thestructure in turn, turned to theright, walked across a bridge, and finally turned to the left to a big,windingslide.Justas the firstchildcompletedhissnakingdescent,myattentionwasdrawntoalittlegirlstandingbyherselfinfrontofabigpileof fallen autumn leaves—it looked as if they had all been purposefullyraked into a pile. They were a mountain of varied orange and brownhues.

Mirandahadbeenprovidingprograminformationthrough-outour tour,andaswestoodontheplaygroundshetoldus,“OurgoalintheCenterisnormalization.Bythat,Imeanprovidingskillssothattheblindchildcaneventually integrateintoasightedworld.Inordertohelpusdothat,wehavewhatwecall a reversemainstreamchild ineachclassroom.Thatmeansasightedchild,whoservesasasortofbenchmark,anexampleifyouwill,fortheotherkids.”

Suddenlythegirl infrontoftheleavesbentdownandpickedupabigarmful,tossingthecolorfulleavesskyward.Astheyfellbackonherhead,she laughedas thoughshewerehaving the timeofher life. I turned toMiranda and said, “That’s obviously one of the sighted children you’re

talkingabout.”

Shesmiled,clearlygratifiedbymyassumption,andsaid,“No,actually,Abbyiscompletelyblind!”

Butshe lookssohappy, I thought. Itwasa flickerof light thathitmyheart—brief,butunmistakable.

REXBEGANschoolatameresixmonths!Thiswasnonetoosoonwhenyouthinkofa“90percentdeficit” loomingabovehisheadeverywakingmoment.Hewasplacedinthe“MommyandMe”class,whichmeanthewould learnatschoolwhile Iwasbeingshownhowtoworkwithhimathome.ThephilosophyoftheCenteristoworkwithfamilies,notjustwithchildren.Theireffortsatschoolwereonlyasgoodastheparents’abilitytocarrythroughathome.Thus,MommyandMe—and,theoretically,thatwould includeDaddyatsomepoint.Thestaffalsoworkedwithparentsoutside the classroom in a forum that was just as vital as learningtechniquesandmethods.Itwasthecriticalpsychologicalandemotionalforum.Theywereawarethat“new”parentsofblindchildrenhadjusthadthefabricoftheirworldsrippedapart,andtheyembarkedonamissiontomendthem,toputthembacktogether,toputusbacktogether.Thestaffknew the statistics—our children had little hope of overcoming suchmind-boggling odds without strong parents at home to support anddefend their interests. Broken parents are no good to their children.That’swhyMirandaand threesocialworkerswereonstaff—tohelpuscope, to help us understand. For me, coping was one thing,understanding quite another. In time, they might help me cope, but Iwouldneverbeable tounderstand.Howcould Iunderstandsomethingsosenselessandincomprehensible?

Rex’sfirstfewmonthsattheCenterwereverysuccessful.Muchbetterthanmyown.Hehad the flexiblebrainofababy,whileminewas rigidandpatterned.Hewasaboutgettingonwiththisthingcalledlife,whileIwas trapped in all my lifelong conditioning about how things weresupposedtobe.Myboybeganpickingupskills,learningtofeedhimselfwithhis fingersandexploreobjects inage-appropriateways.While thisgaveme some hope, it still seemed too inconsequential in the overallschemeof things.Thebigpicture—meaning thewhole sightedworld—

justseemedtoobigandunobtainable.HowcouldRexever learnaboutthe immensity of an ocean he’d never see?Or develop sensitivity andharmonyinacolorlessworld?

Atthesametime,Iwasstrugglingwithmyownissues—theemotionsofseveretrauma.Thebigfour,asIlearnedfromMirandaandtheCenter’ssocialworkers,weregrief,anger,guilt,andfear.Iwasgrievingthehugeloss of our “perfect” child we’d dreamed of. At the same time, I wasangry. Miranda told me that anger was normal because we’d beenrobbed of something so precious. “Senseless” and “arbitrary” were thewords I used, and the phrase “it just happened” filled me with rage. Iwantedsomeonetotellmewhyithappened.Andsoenteredguilt—guiltthat ithadsomehowbeenmyfault.Didthingsthisbadreallyhappentogood people? At the very least, I felt I’d failed to protectmy innocent,defenselesssonagainst something that “justhappened.” I suppose thesumresultofthewholesituationwasanoverwhelmingfearofthefuture.

It was a daily battle to make headway against such heavyweightinternalstuff,all themoresobecauseRex’sdadseemed tobeable tojust go on with life, like nothing of consequence had happened. Ofcourse,workandprofessionalworriesinsulatedWilliamfromtheday-to-daylifeIsharedwithRex.Ihaddecidednottogobacktowork.Itdidn’tseem to make sense anymore; the financial markets I had worked inbeforewithsuchpassiononlyconfusedmenow.Buy,sell,buy,sell—itallseemed futileandpurposeless.Endless repetitions thatyieldednothingofworth,notwhencomparedtowhatrepetitionwouldyieldforRex.

To listen to the staff at the Center, the keys that would open up thewholeworld foroursonwereworkandrepetition tobuildconceptsandgainlifeskills.Eventhesimplesttask,likefeedinghimselfwithaspoon,couldn’tbe taken forgrantedasonemightwithanotherchild. I learnedthatwithoutvisiontherewerenumerousstepsinanyprocess—locatethespoon, locatetheplateand itsedges, locatethefoodontheplate.Andendless related questions: How do you knowwhat you’ve scooped upwiththespoon?Howdoyouknowithasn’tspilledontothetableor thefloor, that the spoon hasn’t tilted in midair if indeed it had scoopedanything in the first place? How do you differentiate mashed potatoesfrom peaswithout touching themwith your hands? It went on and on.

AndthatsimplymeantthatRexneededhismother.Ineededtobewithmy son. So my “workplace” was an emotional battleground. On somedays I was buried under the weight of it all; on others, I just allowedmyselftolovemychild.

ItwasinthiscontextthatRexturnedone.Iwasdeterminedtoburyanyconflictingemotionsforthisday.Hisfirstbirthdaywouldbeacelebration!Itwasadayforchildren,andadult“stuff”hadnoplaceinit.Iorderedmyone-year-old themost beautiful, colored cake with streamers he couldtouchandabigcandlethatplayed“HappyBirthday”whenyourotatedit.The event took place at the Blind Children’s Center. I had come toappreciatethattheirspecialtywasnormalcy.Theirgoalreallywastohelpthese kids acquire skills and patterns of behavior early in life so theycouldbeintegratedintomainstreamschoolslateron.Theyworkedhardtomakeeveryblindchildfeelnormal,andtheyemphasizedcelebrationsanddailyactivitiesthatsightedchildrentookforgranted.IsupposewhenRexgrabbedthestreamersfromhiscakeandtriedtoeattheminsteadofplay with them, that was probably a one-year-old’s age-appropriatereaction.And,perhaps,whenhetookabigbiteofrich,sugarycakeandthenpromptlythrewitup,thatwasalsoanormalreaction!

All of this was a powerful and wonderful counterweight to thepsychologicalstuffIwasdealingwith.Inspiteofmyself,Iwasbeginningto feelmorenormalaswell. Itwasa fact—Rex’s firstsixmonthsat theCenterwereverysuccessful.Noonecoulddenythat!AsIwatchedhimstandingbesidehisbirthdaytable,Ifeltprideinmychild,whowouldmostcertainlybewalkingfarbeforethetwo-year-oldaveragewalkingageforablind child. There was Rex, already standing strongly. Our broad-shoulderedboywouldsoonbeonthemove!TheteachersmiledassheputherhandsoverRex’shands,helpinghimrotatehisbirthdaycandletomake the candle play “Happy Birthday” again. Cause and effect—everythingwasa teachablemoment.Giddyuponhearingthetune,Rexbroke loose with a long string of animated babble. He was “a talker”;that’swhat thespeechpathologistsaid, referring tohisdailybabbling. Icouldn’t wait until he would begin to pronounce real words in a fewmonths,sowecouldbegintoreallycommunicate.

Itwasverytoughtothinkofmychildbeingdeprivedofsight,butinthe

monthssinceRexhadcomehere,IhadtoadmitthatIwasbeginningtofeelblindnessreallycouldbeovercome.Mysonwouldnotonlybeabletoenter into themainstream, tobe “normalized,”as theydescribed theprocess here, but he could even excel in the “real” world. Signs werecertainlylookinggood,andbynowI’dreadaboutHelenKeller,whohadlivedanexceptionallifebeingnotonlyblind,butdeaftoo.IbelievedRexwouldbe likethat,blindbutahighachieverevenbysightedstandards.Indeed, he had gone about his first year of life with energy andenthusiasm, like he was grabbing at possibilities. He was curious andprettygoodat justbeingachild.His joyin livingwascontagious.Whenhe laughedwithpureabandon, itcould lightupawhole room,as itdidnow,withhisteacherhelpinghimturnhisbirthdaycandleonelasttime.Asign,averygoodsignindeed.

“HAPPY...BIRTHDAY...to...you.”ThreedayslaterIcouldstillheartherefrain trailingout inmymemory, fadingwith theremnantgiggles inthe classroom as I waited withmy son for the doctor to read theMRIscanshe’djusttaken.“Routinestatuscheckofbraincystatoneyearofage,”hadbeenthedoctor’sorder.

The eminent neurosurgeon walked into the room, holding the scans.“Thecystisgrowingagain,”hesaidwithoutpreamble.“Lookslikewe’regoingtohavetoputashuntinit.”

I staredat him,mute,my visionbeginning toblur,myheadspinning.Growingagain?Ashunt?AllIcouldhearwasmyson’sbirthdaysong,hislaughter.Iwasbackattheparty,nothere.

“It’saveryeasyoperation,Mrs.Lewis,andit’stheonlywaytoassurethatthecystwon’tscaroveragainandbegintoreinflate.”

Thedoctorlookeddistorted;hiswordsweresenseless.Hekepttalkingatme,butIwasn’tthere.Let’stwistthatcandleonemoretime,Rex!Ah,thegiggles.

“A shunt is a drain, which will allow the cerebral fluid to circulatenormally.”

He wouldn’t stop talking! Why wouldn’t he stop talking? Operation?Drain?Not another invasion intomy baby!Did he realize I hadn’t saidanything?IwantedtoscoopRexupinmyarmsandrun.

“Believeme,it’sthebestwaytosafeguardagainsthydrocephalus,”headded.

The word was a jolt to my own brain, and it broke my silence.“Hydrocephalus?”Imumbledfeebly.

Henodded,hiseyesdeadserious.Alookofterrormusthavecrossedmy face as reality struck full force. The party was over. Cake andstreamershadnoplacehere,and“HappyBirthday”justmockedusnow.Iturnedtolookatmylittleboy,whowouldsoonhaveashuntinhisbrain!There was no choice, because I knew what hydrocephalus meant. Itmeantwateronthebrain—swelling.Andthatcaused—Ibitmylip—braindamage.

CHAPTERTHREE

AWorldUpsideDownWhentheworldsays,“Giveup,”

Hopewhispers,“Tryitonemoretime.”

—AuthorUnknown

Rexdidn’thavemuchappetiteagaintoday,”hisMommyandMeteachersaidas Iwalked into theclassroomfrommyparentsupportgroup.Shewas sitting next toRex trying to spoon-feed him.Hewas sitting in hishighchair,tappinghisfingersonthetray,ignoringhisteacherandabowlofpuréedpeachesinfrontofhim.Histeachersetthespoonbackintothebowl.“Theonlythinghewouldeatwasgrahamcrackerbits.”

“Seems like all he wants to eat is finger foods these days,” I said.“Grahamcrackersforlunchanddinner,andCheeriosforbreakfast.”Histeacher lookedconcerned,so Iadded, “But, it’sonlybeen threeweekssincethesurgery.Maybewejustneedtobepatient.Attheratehegrewlast year, he’s gotta get his appetite back soon.” I smiled a smile ofconfidence I didn’t quite feel. There was something different aboutmyson.Ofcourse,hewasweakfromhislatestoperationandwasprobablyadjustingtohavingapermanent foreignobject inhisbody.(That’swhattheshuntwas,evenifitwashelpingdrainhisbrain.)

“I’msurewe’llseehimgethisoldenergyandappetitebacksoon,”saidtheteacher,whowasasawareasIwasofhowapatheticand lethargicRexwasthesedays.

THEFIRST real clues that somethingwasseriouslyamisscameaboutsixweeks afterRex’s first birthday.Hehad becomea picky eater, thatwastrue,but Iknewthatchildrencouldbe likethat.Theywent throughfoodphases.Whatmademereallytakenotewerehishands.TherewasdefinitelysomethingdifferentaboutRex’shands.Icouldneverforgettheperfection of his tiny new-born fingers. They were still the beautiful,exquisitely formed hands he’d had at birth, but he now seemed really

hesitanttousethemashe’ddonebeforetoexplorehisworld.Hewouldstillfeedhimselfbitsofdriedfoodwithhisfingersandholdhiscupofmilktodrink,but thatwasabout it.Whenofferedanobjector toy,hewouldnowpullhishandsback,squeezinghisfingersintoaball.You’dhavetopeelhishandsopenaswellasusealotofcoaxingtogethimtotakethetoy.Inaddition,heseemedunabletoholdontothingsanymore—evenifhegraspedanobject, he’d thendrop it almost immediately.That reallyunsettledme,sinceitwashishandsthathadtoreplacehiseyes!

“It’scalled tactiledefensiveness,”explained theoccupational therapistattheBlindChildren’sCenter.“Manyblindchildrenhaveoverlysensitivehands.That’swhywehave thekidsexplore things likewhippedcreamand spaghetti. To desensitize them.” She spoke to me about sensoryintegration, which is a therapeutic approach to combat this abnormalsensitivity.“Wecouldstarthimonanintensiveprogramimmediately.”Herreassuranceonlyhelpedcalmmyconcernsforashortperiod.

Inaddition,Rexwasbecoming increasingly irritable.At first, themaincauseseemedtobehishandsandthethingstheycameincontactwith.Butnow,Ialsostruggledtogethissocksandshoeson.IfIcouldn’tgetthesocksoninonefast,unbrokenmotion,itwouldinevitablysethimoffscreaming, as though in pain. He also seemed not to enjoy standinganymore and had begun suddenly collapsing his legs. They could gofromtauttolimpatanymoment.Thesensoryintegrationspecialistwe’dbegunseeingsaiditwasprobablyduetoincreasedsensitivityinhisfeetaswellashishands.

Thentherewasall theextraneousbodymovementRexhadbeguntodevelop.Hehadalwayshadafew“blindisms,”astheycalledthemattheCenter,whicharetherepetitivebodymovementsmanyblindpeoplehaveto varying degrees. Due to the absence of vision, the blind seekstimulationinotherpartsofthebodybyrockingbackandforthortappingtheir feet or hands repeatedly. I had learned that these gestures andmovementsnormallylessenasthechilddevelopsandhisbrainmatures.But now the opposite appeared to be occurring. Like a cancer, theseblindismswerespreadingtonewareasofmyson’sbodypreviouslynotinvolved. Theywere beginning to include rapid hand flapping and chintapping,side-to-sideheadshakingas thoughhewaswatchinga tennis

matchatwarpspeed,andbicyclinghislegswhenhewassittingorlyingonhisback.

“Give him time,”William toldmeoneevening,when Iwas obsessingabouteverythingthatseemedtobegoingwrongwithourson.“He’llgethisoldcharacterback.”Iwantedtobelievethatwastruebutwashavingahardtimebeingpatient.Iwanteditalltogoawaynow.

Thenextmorning,WilliamleftforworkasIwastryingtogetsomethingmore thandriedCheerios intoRex’sstomachbeforeheadingoff to theCenter.Inahurrytogetawayfromwhathadbecomeamorningfeedingwar,myhusbandclosedthefrontdooralittletooforcefully.Rexjumpedand screamed at the sound. That was the first time I noticed a newsensitivity—hebeganstartlingmoreeasily thanbefore.Soon itbecameapparentitwasn’tevenparticularlyharshsoundsthatsethimoff.AttheCenter, the soundof runningwater beganupsettingRexsomuchhe’dcover his ears every time someone went to wash his hands,accompanied by the ever-increasing screams of what had to be pain.Nextitwaslightswitches;thebarestclickwastorturetohisfragileears.It was like my son’s little sensory system had lost any capacity tomodulate.Normal sounds had become like fingernails screeching on ablack-board.Touchingeverydayobjectswasasupsettingasifhe’dstuckhis arm into a hornet’s nest.Andhis emotionshadbecomeexcessive,swinging erratically and at break-neck speed from one end of thespectrumtotheother.Hecouldbelaughinghystericallyonemomentonlyto start screaming the next. Conversely, tortured crying could switchinstantlytorunawaylaughter.Itwasfrighteningtowatchtheswing;itwasasifsomeoutsidepuppeteerwasworkingthecontrolsofmychild’sbody,whippinghimaroundatwill.

ThesoundofrunningwaterbeganupsettingRexsomuchhe’dcoverhisearseverytimesomeonewenttowashhishands,accompaniedbytheever-increasingscreams

ofwhathadtobepain.

By the time Rex was eighteen months old, his reactions to sensory

stimuliwereoutofcontrol,adailyassaulttohisbodyandmind—andtomyown.I’dhadnotraininginallofthis.Indeed,lifenevergivestrainingbeforehand on what to do if something goes wrong in the brain,especially in the brain of your child.What do you do when the wiringsuddenlygoeshaywire?Howdoyouunscrambleit?NoneofthosesmartandelitecollegeclassesI’dtakenasaStanfordundergradexplainedanyofit.Norhadtherebeeneventhesmallestclueinallmylifeexperienceabroad.Andtotopitalloff,Ihadnotimetothink.ThesixmonthssinceashunthadbeeninsertedintoRexhadplacedmeinafranticstate;muchofmytimewasnowspentondamagecontroltohisnewlysensitivebodyrather than helping him make developmental gains. Rex and I (andWilliamwhenhewasn’tpreoccupied,orwasitavoidance?)hadbecomehostages to his sensitivities—to his hands, his ears, and his mouthbecause he had begun to require almost liquid nourishment. Movingforwardinlifewasrelegatedtosecondplace,afterthesheereffortittookjust to hold our own on a daily basis against the tide of sensoryonslaught.

Theworldhadbecomeahostileplacefrommorningtobed-time,whereevery part of life was a potential attack. It was an upside-downbattlegroundwhere things didn’tmake sense anymore.Not tomy son,andnottome.Thiswasmadecrystalclearononedark,cloudymorninginJanuary.Astormwasbrewingoutside—andinside.

IwasgettingRexreadyforhismorningattheBlindChildren’sCenter.Just back fromChristmas break, hewas eighteenmonths old, and hisMommyandMe teacher had invitedme to conferwith herwhile aidescovered her class. Iwas hoping she’d have someadvice, becausewecouldn’tgoonlikethis.I’dgottenRex’spantsonandpulledtheneckofhisT-shirtsowideitdidn’tevengrazehisfragilehead.SoIwasaheadofthedressinggamewhenIstartedtoputonhisfirstsock.

Bunching the sock up so thewhole thingwould fit onto his toeswithminimal impact, I said, “Rex, I’m just putting this sock onto your rightfoot.”Istuckthethingon,andhereacted,butthenrelaxed.Ipulleditupquickly. Another startled reaction, but again, it passed.Wewere doingwelltoday.Confidentnow,Isaid,“Andhere’stheleftsock.”Ontohistoesitwent.Onemoretugofthesock,andwe’dbehomefree.Butthen,asI

was trying to pull the thing up in another smooth, noninvasivemotion,disasterstruck!Ittwistedandstuckathisheel!

High-pitched screams of pain hit my ears. He wailed like he had anopenwoundorlikeIwasburninghimwithcoals,notpassingsoftcottonoverhisfoot!MyhandswereshakingasIquicklytriedtoundothemessI’dmadeofhissock, straighteningandsliding the thing “painfully”overhisheel.Bothofhisfeetbegankickingfullthrottle,backandforth,likehewaspedalingabike,anythingtoavoidwearingshoes.

“It’s okay, sweetie. You’re okay,” I assured him, all the while sensinghowfarhewasfromokay.“Yoursocksareallonnow.Wewon’tputyourshoesonyet.”Irockedhiminmyarmstocalmhim.OnceRexwascalm,Ihoistedhimintohishighchairandhandedhimacupofmilk.

“Here’s a nice, big cup ofmilk to get your appetite going.” He lovedmilk,andthecoldliquidsoothedhimfurther.Iwouldn’teventrytoforceanythingmorethandriedcereal intohimthismorning.“AndI’mpouringsomeyummyCheeriosontoyour tray.Whenyou’re ready,youcan justpopthemintoyourmouth.”But today thesoundof thedriedbitshittingthe traymade himwince. Imagine, it was just Cheerios dropping on atray! Iberatedmyself fornotplacing them therequietly.Hesethiscupdown, but instead of reaching for the cereal like he normally did,sweeping his hand slowly across the tray to find the round pieces, hecurled his fingers into fists and batted them awaywith the back of hishand,flingingthemontothefloor.Hegrabbedhiscupbacklikeitwasalife preserver, drinking voraciously. ThankGod hewould still hold that.But then the phone rang, and it hit him like a bolt of electricity.Screaming, he dropped his cup, and the milk spilled onto his tray,drippingdowntothefloor,makingasoggymessoftheCheerios.

“Rex,honey,it’sjustthephone!”Isaidasthephonecallroutedtotheansweringmachine.

Rexrammedhis fingers intohisears,hisbodybeginning toshakeasdidmine.Iliftedhimoutofhishighchairandhuggedhimtight,singinginhisear.Physicalpressureseemedtohelphisnervesasdidsinging,evenifmyvoicewaswobbly.Gradually,hecalmeddown.Isethimbackinhis

highchairwithanewcupofmilk,and then Iwent into thebathroomtowetatoweltomopupthefloor. Icarefullyavoidedrunningwater inthekitchen so the soundwouldn’t destroy him further. I shut the bathroomdoor,eversosoftly,toblockthewatersound.

Imoppedthefloorwhilehefinishedhisdrink.Heplacedthecupdownand began drumming his hands on the high chair tray. The rhythmcalmedhimfurther,andhenowseemedcontent.Ontheotherhand,mynerveswerealreadyshot,andwe’dbarelybeguntheday.Notdaringtoupsethimfurther,Ithrewhisshoesandjacketintothebag,puthiminhisstroller,andheadedforthecar.

Thedarkcloudsopenedupaswepulledoutofourgarage,and lightrainbegan falling. I love thesoothingsoundof rainandhoped itwouldcalmbothofournerves.Butourworldwasupsidedown.Wehadn’tevengottenoutofourdrivewaywhenRex’sheadstartedshakinglikehewastrying to fling something off his head. Then the movement seized hisshouldersaswell,andhishandsshottohisears,likeheneededtogetoutsidehisbody.

God,no!Iscreamedinmymind.Not therain!Hecan’tbereactingtothe rain falling on the car roof.Yet I knew that was exactly what wasgoingon.“Rex,wecan’tgetawayfromtherain,” Ipleaded.Butreasonhadnoplace inourcar.Notwithmyson’sdysfunctionalbrain. I triedadifferenttactic,cajoling,ashebeganmoaningloudly.“It’srain,Rex,andit’s a beautiful sound.The rain, falling on the roof.” I begana rhythmicchant. “Pitter-patter, pitter-patter goes the rain on the roof.” His bodycalmedslightly.“Pitter-patter,pitter-patter.. .”Hewaspullinghishandsslowly from his ears, intrigued by my chant, but just then thunderboomed,astheskyopenedup,pouringsheetsofwaterontoourcarroof,causing his moaning to escalate into screaming. Desperate now, Ifumbledwiththeradio,tryingtofindsomething,anything,thatwouldpullhis attention from the torturous rain. Only static. Rex screamed evenlouder.Islappedtheradiowithmyhand,asifthatwouldsomehowtunethe thing.Onepresetbuttonafteranother,until Icameacrossastationthatwasstatic free. Itwasaclassicalstation,playingMozart.Justas Iwasreadytofliptoanotherstation,fearingclassicalmusicwouldn’tmakea dent in Rex’s consciousness when pitted against the torrential

downpouronourcar roof, I realizedmyson’sbodywascalmingdown.His shaking abated, the tremors ceased, and suddenly he satcontentedly,serenelylisteningtoaMozartsonata,completelyoblivioustotherainoutside.Thankyou,Mozart.

With Rex now calm, I allowed my body to relax. My shouldersloosened, drooping slightly, but then I suddenly realized my handsweren’t steady on the wheel. The car jerked to the right as I wasbeginningtospasmmyself.Ipulledleftonthewheel,strugglingtokeepinmylane.Steadyon,gripfirm!Myeyestwitched,blurring,andIknewRex had passed his shaking off to me. Eyes on the road!With thedownpourvirulentlyassaulting thewindshield, I beganshakingmyownhead,tryingtocastoffmynerves,togetoutsidemyownbody.Thebattleragedonwhilemychildsatcompletelyabsorbedbythemusic,cocoonedinthenotes.

IpulledthecarhaltinglyintotheCenterandbreathedhard.Onebreath,then two; I sat for amoment, breathing deeply, trying to collectmyselfbeforemyconference.Rexwascontentedlytappinghishandsonhiscarseat, a smile playing at the corners of his mouth. I leaned over andkissed him tenderly on the cheek, then hugged him tight, allowing thetouchtocalmmethistime.

IhadtohustleRexoutofthecartoavoidasoaking,butImanagedtogethimtohisclassroomrelativelydry.Ilefthimthereand,withmybodymoving on autopilot, headed off to meet with his teacher, Linda. I satdownmore heavily than I intended, and I barely had a chance to shiftgears when she announced, “I’m concerned about Rex.” No beatingaroundthebushorbanalities,shejustcuttothechase.

“Well,I’mconcernedaboutRextoo,”Isaiddefensively,stilljitteryfromthemorningbattle.Whenwouldhebeback tohisold self again? “I’vebeenbrushinghimanddoingallthatjointcompressionJillrecommendedaround the clock,” I said, referring to the technique his occupationaltherapistusedtocountersensorydefensiveness.

“I know,” she said, but repeated, with emphasis this time, “I’m veryconcernedaboutRex.He’ssoapathetic inclass; it’sdifficult toengage

himinanything.”

“Ofcoursehe’sapathetic!” Isaid,agitated.“Hispoor littlebodyhastospendall itsenergydefending itselfagainst things like runningwaterorrain!” I was getting worked up because I wanted answers, not morequestions. Why is he apathetic? Why wouldn’t he eat anymore? Orstand?Ortouchanything?Howlongwasthisgoingtolast?

Lindadidn’tsayanythingimmediately,perhapsoutofrespect.Iadded,“Hedoesperkupwhenyousing,andhaveyounoticedhowrhythmichisclappingis?”

“Yes, it is,”sheadmitted. “Andhe loves tappingobjects,”sheoffered,butthenadded,“justnottouchingorholdingthemlikeheneedsto.”Thenshe said, in a voice that was filled with empathy but was nonethelessfrightfullydirect,“I’mafraidRexisautistic.”

Thenshesaid,inavoicethatwasfilledwith

empathybutwasnonethelessfrightfullydirect,“I’mafraidRexisautistic.”

“Autistic!” I repeated in disbelief, thinking of the bizarre, detachedbehaviorIrelatedtoautism.“That’simpossible.Autisticmeansunabletomakesocialrelationships;Rexiscompletelyattachedtome.”Therewasnodenyingthat.Hispersonalityshonethroughone-on-onewithme.

Lindaadmittedthatwastruebutsaidhisextremesensoryissuesweretypical of a child with autism, as were his flapping arms and otherrepetitive body movements such as hitting his chin or the table inrhythmicpatterns.

Autisticbehaviorsdidn’tmeanautistic!Noway!BecauseitwasobviousRex could have social relationships. I’d read all about autism, and hewasn’tdistantandremovedliketheliteraturedescribedthosechildren—except,ofcourse,whenhewouldcrawlintohisprotectiveshell.Butthatwascausedbyexternalstimuli,notaresultofhispermanentstate.

“He’snotautistic,”Isaid,asifIwerestatingafact,leavingnoroomfor

discussion. “He just needs time for his brain to mature.” I left theconference in a huff, refusing to give merit to the teacher’s rash anduncalled-forassessment.

Icouldn’tdenytheobvious,however, thatRexseemedtobecrawlingmore and more into a protective shell, not the opposite. Why weren’tclassic therapiesworking to rebalancehissensorysystem?SometimesI’dlookathisface,andyes,itwascompletelyempty,asifthechildhadrecededsofarinsideastobeinvisiblefromtheoutside.OneafternoonIsatinthelivingroomwatchingmysonmindlesslytappinghischinwithablank, removed look on his face. The day had been hard for him, so Iunderstood.ButIknewmychildwasinthere—evenifhewashidden.

Autism? No, it couldn’t be, because I got to see the real child, adifferentRexentirely,whenhedidn’thavetoconfronttheworldatlarge.ThatRexwasjoyful. Igottohearthelaugh,seethelight inhiseyes.Itwasthere,butonlywhenImadesurehisenvironmentwasfiltered,whichwas only really possible at home. Especially now that his sensitivitiesincludedthingslikerain!Howcouldthisbeautifulchildwhoexistedonlyinacompletelycontrolledenvironment,bebrought into theworld?Andnot just survive, but thrive? Would he ever be able to embrace thesounds and beauty of the world, or would they always be tragicallydistortedforhim?HowcouldGodhaveallowedthistohappentoachild?Rexwasinnocent;he’ddonenothingtodeservethelifehehad.

Mysonhadn’tgainedasingleouncesincehisfirstbirthday.He’dbegunthe year at twenty pounds; twomonths before his second birthday hetippedthescaleatthesameweight.Almostayearandnoweightgainforasoon-to-betwo-year-old!Rexwasnowsubsistingmostlyonliquidsandthe small bites of puréed food I could manage to get into his overlysensitivemouth.We faced all thiswith the ongoing threat of a feedingtube looming over our heads. In areas of development, the news wasevenworsethanhiszeroweightgain.Rexhadlostskillshehadacquiredbefore theageofone,suchas finger feedingandpullinghimselfup tostand.Thefactwasour liveshadbeenutterlyrippedup, torntoshredsbyRex’s sensitivitiesover thecourseof the year. In thebeginning,myhusbandhad left theentire emotional andpsychological taskof raisingour son tome.Over time, the distance betweenus had grown.Now it

wascavernous,andhesaidhewasleaving.He“couldn’tdoitanymore,”wasthewayheputitwhenheaskedforadivorce.

Itwasthestoryofsomanyfathers—that’swhatthestatisticsconfirmed.Seventypercentofmarriedcoupleswithaseverelydisabledchildendupdivorcing.Iknewofthedivisionofrolesinourhousehold,andapparentlywewerethestatisticalnorm.Thefatherearnsthelivingwhilethemothercopes with the rest. The psychologist at the Blind Children’s Center,Miranda,hadexplainedhow that leaves fathers insulated fromtheday-to-day intense stuff mothers live with, which leads to isolation andultimatelyalienation.Thefatherdidn’tforgethesamebondwiththechild,thatfiercelovebondsonecessarytodealwithextremedisability.

Myhusband’ssuddendepartureleftmemorethankfulthaneverformysolidcareerexperienceinParisbeforemymarriage.RexandIwouldbeokay temporarily. Though a world away from trading stocks and themoneymarkets now, success in thatworldwould provide shelter for atime.Itwouldallowmetoescapebecomingafinancialstatisticalongwitheverything else. How many other mothers in a similar situation wouldhave to face the heartbreaking choice between earning a living anddevotingcritical time to theirspecial-needschild? I’dhave towatchourfinancialsituation,butwe’dbeokayforawhile.However,thesamecouldnotbesaidofmyemotions.

There were days after my husband left when my knees would justbuckle ormymindwould become confused.One day I camehome tofindthespecialistfromtheFoundationfortheJuniorBlindpullinghercarout of our driveway.As I flaggedher down, I said, “Ana,what are youdoing here on Tuesday?” When she told me it was Wednesday, hernormal time to work with Rex at home, I stared at her blankly for amoment, unable to connect her words to reality. Was it Wednesdayalready?Onedayblurredintothenext.

“Areyouokay?”sheasked.

“Yes,ofcourse,”Ianswered.ButwasI?

ThefactwasmyownnervoussystemhadbecomeasfragileasRex’s.I

wouldcryatthedropofahat.IwasterrifiedI’djusttumbleover.Asif Iwerestandingontheedgeofagreatprecipice,themoreItriedtobackaway, the more the ground crumbled under my feet. Sometimes Rexcould manage to keep me on solid ground just with a smile, but theweightofourliveshadbecometooheavynow.RexandIwerealone.

Itwasasmotherandson,equallyfragile,equallybroken,thatwemadeourwayup thehill toMalibuPresbyterianChurchamonthbeforeRexturned two.MyolderbrotherAlanhadcomeup fromSanDiegoa fewdaysbefore,andIhadbeensittingwithhiminmy livingroom.Shakingmyhead, Isaid, “I justdon’tget it. Idon’tgetwhat it’sall for.”MeaningRex,hiscondition,ourlives,everything.

My brother looked at me intently, his eyes boring in. He had theresolved lookofsomeonewhohad justmadeadecision,andhisvoicetookonasoft-spokenandsolemntimbre.“It’ssimple.It’stoglorifyGod.”Hisanswersurprisedme;itwasnotatallwhatI’dexpected,ifindeedI’dbeenexpectinganything.Ihadnoideawhathemeant.Ourfamilyhadn’tgonetochurchwhenIwasachild,exceptforspecialoccasions,andmybig brother had grown up alongside me. So what did he know that Ididn’t?

“I don’t knowwhat youmean,” I answered feebly. I certainly couldn’tmanage the connection between glory and God and a child who wasobligedtolivelikeRex.ItsoundedasdisconnectedandsurrealasthelifeIwas living.Had Inotbeenso tiredandconfused, itwouldhavemademeangry.

Alan grew quiet, contemplative. I knew this meant my usuallygregariousbrother,whomI’dbeensoclosetogrowingup,wasfullofrealemotion.Hesaid,“I’vebeenwantingtotalktoyouaboutsomethingforawhilenow.”Therewasmeaningattachedtoeachword,whichdrewmetoattention.

Mybrotherhad livedagood life.That I knew,even thoughwe’donlybeenclosethroughthehighschoolyears,sinceafterwardI’dgoneawaytocollegeandfromtheremovedabroaduntilshortlybeforeRex’sbirth.Alanhadbeenthemostpopularkidontheblock,LittleLeaguebaseball

hero, remaining the big athlete on campus up through his high schoolyears.HehadevenbeenvotedBestPersonalityasasenior.Nowhewasmarried to his college sweetheart, Jenine, with whom he shared theparentingoftwobeautifulchildren.ItalllookedprettygoodfromwhereIwassitting,soIdidn’timmediatelygraspwhathewassaying.

“IrealizedIwasstillstuckintheglorydays,”hesaid.“Yeah,IthoughtIwas pretty hot stuff back in high school—big athlete.” He paused andshookhishead,fullofemotion.“Iwasprettyfullofmyself.”Thenhespitout,“Prideful!”

Ithadaheinoussoundtoit,asiftherewasvenominit,asifpridewasa thing tobe loathed. I’dneverheard itused thatwaybefore,since I’dalways thought taking pride in oneself was a good thing. Pride helpedyouachieve,andbeinga“highachiever”wasathingtoaspireto.IknowhowmuchI’dlovedthelabelgrowingup.I’dworkedhardhopingtomakemymom and dad proud.My throat caught as I remembered that briefmomentofpride I’d felt inmyownson—my littleblindson facingdowntheworldonhisfirstbirthday.Butherewasmybigbrother,whomI’dsoadmiredgrowingup,describingthatveryemotion,pride,asanobstacle.Anobstacle,notavehicletoachievement.

“Big-time pride,” he said. “Yeah, I think it was bigger than me,” headded,chuckling,“butIrealizedhowemptyIwasoutsideofit.”Heshookhisheadsoftly,hiseyesgoingbacktowhatwasobviouslyapainfultimefor him. “Howempty Iwas,” he repeated in confirmation. “And I askedmyselfthesamequestionyoujustasked.‘What’sitallfor?’”

My mind was struggling to catch up as my big brother went on todescribehowhe’ddiscoveredfaith.Notfaith inhimself, likehe’dhad inexcesswhenweweregrowingup,buttruefaithinGod.

Hiswordshaddefinitelytakenmebysurprise,notatallwhatI’dbeenexpectingonaSaturdayafternoon,buttherewassomethinginwhathesaidthatmademefeelclosetohiminawaywehadn’tbeensincethosehighschoolyears.AndyetIcouldnot,byanystretchoftheimagination,describe my own state as emptiness. In fact, it was the opposite—crammedwithdailycrises,mystatewasmoreakintooverloadandsheer

desperation.

Thatnight,beforegoingtobed,IwaswashingmyfacewhenIglancedinthemirror. Iwasshockedtoseethefacethatwasstaringback.Thatcouldn’t beme!What had happened to the confident and joyful youngwomanIusedtobe?WherewasCathleen?Wherewasthegirlwhohadgone off to live in Paris, to seek adventure, to see the world, toexperience life?Wherewasshenow?Isawthe linesof fatiguearoundmyeyes,thepallorinmyskin.Itensedmyfacialmuscles,butthesetinmyjawandbrowsbecametootight,toorigid,makingmyfacelookharsh.Yet when I relaxed the muscles again, the vision staring back at melooked slack—unnerved and undone. There was no in-between, norelaxedsoftnessleftinmyfaceormybeing.That’swhenIrealizedhowtightlyI’dbeenholdingthereins,andforhowlong.I’dhadto,justtokeepfrombreaking.Now theundeniable truthwasstaringbackatme in themirror,etchedinthedarkcirclesundermyeyes—Iwasonthevergeofanervousbreakdown.I’dbeenlivinginthisstatefortoolong—twenty-fourhours a day, seven days a week—to go on without rest. I didn’t knowwhetherGodwouldhaveanythingtoofferRexorme,butIdidknowwehadnowhereelsetoturn.

Ididn’tknowwhetherGodwouldhaveanythingtoofferRexorme,butIdidknowwehadnowhere

elsetoturn.

Soherewewere,enteringthesanctuaryof“thechurchonthehill,”asI’dalwaysthoughtofit.IwasscaredandapologeticthatRexhadtostaywithme,seatedinhisstroller.“Hecan’tgotothenursery,” Isaidtotheusheratthesuggestion.“He’sblind.”Asifthatshouldexplaineverything.The usher was an older gentleman with white hair and a kindly look,whichputmeatease.

“It’s okay. Don’t worry—we’re used to having kids here,” he told mewhen I lookedmortifiedatsomeof thestrangesoundsRexhadbegunmakingevenbeforetheservicestarted.But,thankfully,oncetheworshipmusicbegan,hewaspacifiedand listenedquietly, intentlyeven. Idon’tknow whether it was the kindly words of a stranger, Rex’s look of

contentment at the music, or God’s holy presence that caused me torelaxinawayIhadn’tdoneinmonths.Howgooditwastojustsitthere.Icould feel the tightly coiled knots in my stomach begin to unwind,releasingtheconstantpressure.IlookedatRexinhisstroller.Therewasanexpressionofpeaceonhisface,acalmthatwasfarremovedfromhisfrequentapathy.Couldthisbe,atlonglast,amoment’srespitefromthestorm?Suddenly, the tears Ihadn’tallowedmyselfbeforebegan fallingsoftly,silently,butuncontrollably.

Overthenextweeks,IrealizedIwasgoingtochurchtopetitionGodonbehalf ofmy son.Maybe it was spiritual naïveté to think I could eitherbargainwithGodordictatetoHimhowtobeglorified,butthat’sexactlywhat Iwas—spiritually naïve. It seemed logical enough, at the time, tothinkGodwouldhealRexinexchangeforglory.AndsoIbeganprayingformyson.Ididn’tknowwhetherGodwouldlistentome,someonewhohadbeensoconspicuouslyabsentfromchurchthroughoutmywholelife,so I enlisted the church to pray forRex aswell.Make himwalk, Lord!Make him talk! ShowYour power! For Your glory!Day after day,weekafterweek,itwasthesameprayer.

WithRex’s secondbirthday just daysaway,hehadstill not takenhisfirst step, which had seemed so imminent a year before. Nor had hebegun to speak; his incessant babble of the previous year had all butdisappeared in favorof sounds that didn’t resemble speechat all.Still,therewassomething Ihadcome toobserve inRex thathadbecomeaconstant since that rainy day in January. It was amazing towatch himlistening to music, notably classical music, ever since he’d discoveredMozart. Oh, I knew the theoretical link between such music andbrainpower,butthiswasmoredirect.Whenmysonwaslisteningtothemusicofthegreatclassicalcomposers,therewasalookonhisfacethatseemedtosay,“ThisIunderstand.”Likehewasleavingusmeremortalshereonearth,tostrollforawhileintheheavenlyrealmswiththelikesofBach and Beethoven, as if he somehow had direct access. It was aneven sharper contrast, given the rest of the world, which he’d beendenied.Therewerehisrhythmicskillstoo.Heloved“theclappinggame.”IwouldclapoutpatternsthatweresocomplexIcouldbarelyrememberwhat I’ddonemyself.Buthe’d inevitablyclap themback, flawlessly.All

donewithatwinkleinhiseyethatagainsaid,“Igetit.”

We turned the page on Rex’s second calendar year withoutWilliam.When Rex’s father came to visit some time later, he was bearing apresent. I was pleasantly surprised to find he’d actually been listeningwhenI’ddescribedRex’saffinitytomusic.Forherewasaforty-eight-keyCasiopianokeyboardandstand.Williamsetuphisproudoffering,andwestoodRexrightinfrontoftheinstrument.“Rex,look,I’vebroughtyouapiano,”hisdadsaid.

Rex’shandsballedintotinyfistsandshotstraightbacktohisshouldersthemomenthistummycameincontactwiththisforeignobject.Thatwashis typical reaction to touching something new. Usually, it would be amatterofliterallypeelinghishandsopenandforcinghimtotouch.Then,oneoftworeactionswouldensue:eitherhe’dpullhishandsawaywithnoverbalresponse,orhe’dbeginscreaminglikehe’dbeenscalded.

“It’sapiano!” Isaidwithexcitedemphasis inmyvoice, trying todrawRexin,distracthim.Atthesametime,Itookhishandswithoutopeninghissensitivepalmsandbroughtthemdownonthekeys.Theyshotbackup immediately in a conditioned responseas the notes floated throughthe air.We watched Rex, and as I was wondering what to do next, astrangelookslowlycameoverhisface,likesomekindofinternallight.Ididn’t dare breathe for fear the lookwould disappear.But itwas there,unmistakable and absolutely breathtaking! Rex was intrigued. As Icontinuedtoholdmybreath,Ifeltahugelumprisinginmythroat,andIwatchedmyson’stinyarmsrelaxashebroughthishandsdowntostrikethepianokeyswithclosedfists.Butthistime,theystayedonthekeysasthoughglued inplaceby the tones risingup tohis ears, anda lookofwonderconsumedhimashistautfingersslowlyuncoiled.Gradually,heplayedonenote,thenanother,thenbothhandsintermittentlylikeakindofdrumroll.

“Lookuphere,Rex,”IsaidasIhitanoteattheupperextremityofthekeyboard.Sincehecouldn’tsee,hedidn’tknowhowfarthepianokeysextendedineitherdirectionandwasstrikingonlythekeysinfrontofhim.Whatwasthat?Anewsound?hisfaceseemedtoask.Nowhewantedthosehighnotesandreachedforthem,buthecouldn’textendthewhole

distance without toppling over. Instead, he came down on the keys inbetween.A lookofcomprehensiondawnedonhis face.Thesearenewtones. Then he took both hands (playing in sync), made a rhythmicpattern of six notes going up the keyboard, and replicated it. Samepattern,samenotes.

William and I watchedRex lay his hands fully on amass of keys tocombine notes, dissonant but a blending nonetheless, as if he wasseeking a more complex sound. Then he continued his exploration,enraptured, just as we were. Since the day we’d learned of Rex’sblindness,thedividebetweenWilliamandmehadbeeneverbroadening.Theresultwasourrecentseparation.Butwewerebacktogetheronthisafternoon, as if to bear witness to something extraordinary. In thatsingularmoment,wewerebonded inour littleboy,who’dspenthis firsttwoyearsfightingalosingbattleinahostileworld.Ievencaughtatraceofmist inWilliam’s eyes as he realized how absorbed his son was ineverynoteofthelittlekeyboard.Itwaslikeourboyhadbeentransportedto a friendly world, one he understood, where the pain of his dailyexistencewasheldatbay.Forthosebriefmoments,itwasasifthepianohadfreedhimfromtheconstraintsofhisbody.Itbecamehiseyes,andthenotesbecamehisvoice.

Forthosebriefmoments,itwasasifthepianohad

freedhimfromtheconstraintsofhisbody.Itbecamehiseyes,andthenotes

becamehisvoice.

All toosoon,thespellwasbroken.Rexfinallytiredofplayingthe littlekeyboard, and we were rudely jolted back to real life. With the musicgone, the usual awkward silence once again filled the room, splinteredonly by emotions that again seemed forced. “Wasn’t that amazing!”Williamsaid inavoicethathadgoneflat.Allofasuddeninahurry,heannouncedhehadtogo.HecalledRexa“cleverlittleguy,”threwhimupintheairacoupleoftimes,whichalwaysbroughtgigglesofdelight,andthenwasgone.As thedoorclosedwith resoundingdefinition, Iknew itwas final; the separationwould indeed be permanent. Rex and I werealone,alonewithalittlepianokeyboard.

Butsomethingelsehadhappened,asobvious tomeas the finalityofWilliam’s departure—an extraordinary event had taken place. Had thesamedoorthatclosedonthefatherallowedanopeningfortheson?HadRexjustbeengivenalifeline?

OVERTHEmonthsthatfollowed,itbecameapparentthatthatlittlepianohookedRexintolifeinawaynothingelsehad.Itwasn’tjustaflukeormydesperatemindexaggeratingrealityorapassingfancy;itwasapassion!Hecouldplaythatlittlepianountilhedroppedfrompureexhaustion,andhedid just that,dayafterday.Thereweredayswhenhe’dstandat thepiano,whichstrengthenedhis legs.Whenhis legswould tire,he’dplopdowntothefloor.Eventhen,I’dwatchhimreachup,armsextendedoverhis head, needing to play on. At other times, when he played sittingdown,he’dgoat thekeyboarduntilhewouldeventually toppleontohisside, but he still continued to reach for the instrument as if it were amagnet—drawinghim,holdinghim,possessinghim—until,sappedofallstrength,hislittlearmswouldfall,deadweight,tohissides.

Myspirit,on theotherhand,wasquite theoppositeofdeadweight. Infact, itwasdownright light, at least in comparison towhat it hadbeen.Rex’sendlesshoursat thepianoprovideda respite for bothof usandbegantolift theoppressiveyokeofhissecondyear.Normallyabrasive-to-Rexsoundslikerunningwaterandaringingphonedidn’taffecthimatallwhenhewasatthekeyboardwhichprovidedatemporaryoverridetodysfunction.Playingthatthingwaswhathewantedtodofirstthinginthemorning,anditwaswhathewantedtodoevenwhenhisbodycouldn’tdoitanymore.Iwasn’tamusician,butIknewwhathewasplayingwasmusical, rhythmic, and full of life. After the darkness, the absolutedesolationofthatsecondyear,itwaslikeabrightlightshiningdownintoour lives, like a rebirth. Gradually, a new sound began to resonatethroughourhomealongwithhismusic—itwasRex’slaugh.Itwasasifhewasdefyinghiscondition.Ithoughtitwaslikeatouchofgrace.

Asthemonthsworeon,hisdaysatschoolwerestillhardworkevenashishomelifewasoneofever-increasinglightness.Isupposeyoucouldsaytherewasnowagrowingdivideinhislife,adichotomybetweentheease and harmony he felt at the piano at home and his struggle toovercomeall the rest.Hewouldusehishandsbeautifullyat thepiano,

developing a rhythmic dexterity, but he still wouldn’t use them muchelsewhere.Hehadmadegains inanumberofareas,butprogresswasslowandlaboredandstillfilledwithupsetforhim,histeachers,andme.

ItwasJune,shortlybeforehisthirdbirthday,andhe’dhadamixeddayatschool,meaningtoughbutmanageable.Thefinger-paintingactivityhisclassmates had reveled in first thing in the morning had set himscreaming.IwatchedasalittleboynamedManuelvoraciouslyrolledandswirledhishandsingooeywonder,andIhopedRexcoulddothesamething,prayingonthespotforamiracle.Rex’steacherhelpedhimfindthefinger paint in a sort of drumming pattern. “Look, Rex, it’s not fingerpainting.It’sjustdrumming!”Up,down,up,down,rat-tat-tat-tat,overandinto thegoop! Itworked;hehadn’tballeduphishands.Musiccouldbeusedtogethimtodo things thatwereotherwise impossible. Iused thetechnique at home, and now his teachers had begun using it here aswell. But as soon as the drumming pattern was broken, and hediscoveredhishandsinthepaint,itwasasifhiswholenervoussystemwasonceagainbeingassaulted.

Mercifully itwasmusictime,andhewasabletorecover.Asusual,heexcelledinhisclappingpatternstothesongsandhummingthetunes.Itwasn’trealhumming,butasortofchorusof“ahs.”Hecouldn’tpronounceanyword,but it seemedhecouldvoiceachorusof “ahs” toanysong,andinperfectpitch.

I still carried him aroundmost of the time, or the teachers did, but—inspiredbythemusic—hehadmanagedacoupleofsteps.Butthenhewould immediately collapse his legs in what I had come to call his“spaghetti-leg”mode. Sixmonths before, I had believed that God wasansweringmyprayerswhenIwitnessedRextakinghis firstmiraculous,independentsteps.Ihadcelebrated,throwingmyarmsaround“mylittlewalkingboy”anddoingmyhappydance!But thecelebrationhadbeenpremature because Rex’s first steps didn’t develop into a consistentwalking pattern like most kids, but instead into an on-again, off-againpattern.OnedayIwouldbelievehewasbuildingstrengthandbalance,but then the next he’d be back to square one, his legs buckling themomentI’dstandhimup.Onthebaddays,Itriednottoletitgettome,focusingonthefactthatI’dwitnessedhisabilitytowalk,evenifitwasstill

hiddenmuchofthetime.

Rex’s school day was capped by lunch; for him it was a “good foodday,” laughable by any standard but his own. “Good” meant he’dmanagedtoconsumeaboutaneighthofacupofpuréedsweetpotato,butonlywhentheoccupationaltherapistsmeareditonhis lips,obliginghim to lick it off to clean hismouth. Rexwould not eat voluntarily andwould normally jerk his head away from any spoon thatwould dare totouchhis lips. Itwas likehewas “threatened”by food.Tocounter that,thetherapistwouldputthefoodonherfingerandrapidlysmearitonhislips before he could dodge away. Once on his lips, his tongue wouldsneak out slowly, testing, licking bits off. A labored process, but on agood day, like today, Rexwould actually consume the food he “found”withhistongue.AsasceneonTV,itwouldhavebeenhumorous,butasamotherwatchinghersonfightingalife-sustainingprocess,itwashardtotake.

His days at school were intense; there was no denying that whatseemedlikechild’splaywasworkforhim.ButnowIwatchedhiminourhome,contentathispiano,oblivioustotheinspiringoceanviewouttheliving roomwindow. The sun sparkled in allegro on the surface of thewaterandseemed tomirrorRex’s lightnotesas theycascadedup thekeyboard. I so enjoyed living beside the ocean, with its unimpededhorizon.OnlytheislandofCatalinawasouttherestickingitsheadtimidlythroughatranslucentskirtofmist.NoJunegloomtoday,justtheleavesofpalmtreesflickeringinagentlespringbreeze.Rexhadextendedhisarmstotheveryextremitiesofhiskeyboard, likehewasembracingtheworld,aworldasvastaswhat Icouldseeout thewindow.Hekepthisarmsspreadwithone indexfingerateachpianoextreme,playingthemback and forth—high, low, high, low—over and over again, a look ofraptureonhisface.Thenheslowlyliftedeachfingertotouchtheedgeofthepiano,asiftoverifyitreallyendedthere.Heoftenmadepianorunsupanddown to theendsof the instrument, and Iwonderedwhether itwasto fixboundaries inhisownmindor to test them.IhadnoticedhisintriguedlookthedayIplayedaChopinnocturneforhimonthestereo—itclearlyhadnotesnotcontainedonhisownminiaturekeyboard.Wherewerethemissingkeys?Chopin’ssky-high trillswereclearlynowhere to

be foundonhis little forty-eight-notepiano!Testing limits,pushingbacklimits.Wasn’tthattheessenceofchildhood?Andorder!Rexseemedtobe creating order in a brain that was otherwise filled with chaos anddysfunction.Endlessruns,methodology,intervals.HewentaboutplayinghispianowiththesameabsorptionIwitnessedwhenhewaslisteningtoMozart.

His fingers were still stuck to the ends of the keyboard, and I said,“Beautifulmusic,Rex.”Myvoicestartledhimoutofhisabsorbedstate,andhis fingersdartedback intomotion.Ona typicalday,as Iwatchedthe ebb and flow of the ocean tide, he would create endless musicaltapestries.Sometimesplayful,sometimesmajestic,alwaysrhythmicandconstructed,whichstood instarkcontradiction to thedisconnectedandrandomchildI’dseeatschool.Rexwascreative—itcouldbeseenalltooclearlyinhismusic.Hewascurious,andhecouldlearn.Hewouldlearn!

Ilookedbackathim,ashishandsopeneduponthekeyboard,movingonceagaintoitsedges,itslimits,asifhewantedmore.Morenotes?Orjustmore?Whycouldn’twepushpastthoselimits?Crashthroughthoseboundaries?Extendoutwardtotheworld?

CHAPTERFOUR

TheMeetingAlljourneyshavesecretdestinationsofwhichthetravelerisunaware.

—MartinBuber,biblicaltranslator,philosopher,andinterpreter

We rushed through the gates of the Blind Children’s Center complex,onceagainlate,inspiteofmyeffortstogetusthereontime.Theotherchildren,whodidn’thaveasfartocommute,wereallseatedonblocksinthegreen,grassyplayground,shadedfromthealready-scorchingsunbyacoupleof large trees. Itwassummertime,and therewasa feelingoflightness in the air as I watched the kids singing their good-morningsongs.

The teachermade room forRexnext tooneofhisclassmates,and Icarried him to his seat as the children continued singing. I studiedmyblondboy,lookingsohandsomeinhisblackpoloshirtandkhakishorts,clappingwithimpeccablerhythm,nevermissingabeat.Suddenly,twoofthe older children, Ellen and Carson, stood up. They held each othertightlybytheshouldersasthenextsongbegan.Theycircledroundandround to the tune of “RingAround theRosy”—preschool rock and roll!Bothwereblondandbeautiful—olderversionsofRex.

As they came to the lyrics “ashes, ashes, we all fall down,” the kidsdropped to the ground to Rex’s drumroll clapping. There were gigglesfromthechildren,andI turnedtogo inside.Timeformymeeting; Ihadbeen “invited” to meet with the educational director of the school todiscussRex’sprogress.JustasIwassteppingintothehallway,afamiliarsound hit the airwaves. Like a thousand-megawatt bulb, it lit up theplayground—the laugh! Rex’s astonishing, infectious laugh probablybroughtonbyescalatinggiggles. I turned toseemyboy, fullof life,hisfacestillwreathed inabeatific smile special tohim. I couldn’t helpbutsmilemyselfasIlefthimwithhisschoolmates.

Isteppedinsidetheschoolhouse,whichwasasbrightastheoutdoors.

Theofficeof theeducationaldirector,Miriam,wasat the farendof thebrightly lit corridor. On one side of the hallway sat a big stuffed bear,more voluminous than most adults. He was perched on a softlycushioned bench in front of a window, through which streamed thebrightnessof this summerday.Thebear, dubbedBarney theBear, feltlikeafriend;hewasasortofcuddlygreetingcardwelcomingvisitorstothis entrance hallway. He was an expensive animal, not because ofexquisite design or exclusive fabric, but because each year he waspurchasedat auctionby somegenerousbenefactor of the school,whowaswillingtoexchangehundreds,eventhousandsofdollars,fortherighttosay“Icare.”Buyingthisparticularbeardidn’tconferownership,butitdidbuytherighttohaveyournamesewnontothebellyofthisoversizedguardian alongside all those other caring people’s. Annually auctioningthebearwasan institution in thisprivatepreschool for theblind,whichonlymanaged to keep its doors opendue to such financial generosity.We,theparents,werenotaskedtopayadimefor theright tobehere.Thiswasveryfortunate,sincemostofthefamilieshadtakenquiteahitfinancially.Likeanyseveredisability,blindnesshitsfamiliesineveryarea—emotionally,practically,andfinancially.

Facingthebearwerethreeclassrooms,shieldedfromthecuriouseyeof the casual observer by relatively opaquewindows. If youwanted towatchthekidsintheseclassrooms,youhadtopracticallyglueyourfacetothewindow.Thiswasnotatalladiscreteposture,mindyou,butIhadpersonallybeenknowntodothefacepressonnumerousoccasions—nowitheringviolet,thismother.BeingfaintofheartwasnotaluxuryIcouldafford, havingRex for a son.Now, however, the doors to these roomswere open because they were empty. For once, I could gaze casuallyinsideasIwalkedpast.Theroomhadbrightcolorsasabackdrop,withmultiplevariedtexturesonthewallsandfloors.Therewererealobjectsto touch and to be used to teach themes, and in the corner of Rex’sclassroom,alittlepianokeyboard.Ihadbroughtitinforhimtouseifheneeded a “collect yourself ” break. I also wanted the teachers andspecialists to see how nicely he used his hands on the piano keys. Ihopedtheskillwouldbetransferable.

Whilechildrenwereoutside,thebearwaskeepingasilentvigilawaiting

theirimminentreturn.Inspiteofthebrightnessofthedécor,theabsenceofthekids’joyousvoicescausedtheplacetoseemoddlyhollow,abodywithoutaheart,somethingunsettlingasIlistenedtothesoundofmyownfootstepsechoingoffthewalls.Whatwasthematter?IwasonlygoingtomeetwiththeeducationaldirectorofRex’sschool,whohadaskedmetocomeseehertotouchbaseonhisprogress.ThiswassomethingMiriamandIhadbothagreedwouldbeagoodideafromtimetotime.And,sinceit was the beginning of summer school, what better time to do it? Farfrom being unsettling, forme thismeeting promised the opportunity toshare ideas concerningRex’s day-to-day education andmy visions forhis future. A child his age needed consistency, which meantsynchronizingmyowneffortsathomewiththosehereatschool;workingtogetherwasthekey.

The door to the office stood ajar, and as I approached, I could hearhushed, subduedvoiceswithin,whichseemedoutofplacehereat theCenter,whereeachwordwasalwayssoclearlyweighedandenunciatedfor thechildren.As Ipushed thedooropen, Iwassurprised toseenotonlyMiriam’sfacebutalsothedirectorsittingamongfiveothermembersof the school’s mostly female staff, each an expert in her field. As Ilookedaround the room, Inoted the familiar faces I’dknownsinceRexwasbarelysixmonthsold.Theyweremyfriends;theywerehisfriends,histeachersinsomanydifferentdisciplines.They’dknownhimfromthetimewhenwe’dfirstcometotheCenter.

I entered the room to face these educators, who had become thesubstanceofourlivesfortheselasttwoandahalfyears.Thoughithadbeenanassociationforgedbynecessity,they’dbeentheretohelpwhentherewasnooneelse,hadhelpedmecopewithabrokenheartandabrokenchild.They’dprovidedasafeplaceformysonandme,wherewecouldboth recoverandgrow. I felt Iwas in thecompanyof friends.Alleyeswereonme,andweallmurmuredgreetingsasIfoundmywaytothesoleseatthathadbeenleftvacant.Theyhadsavedmeachairfacingeverybodyelse.

Still, Iwas relaxed,althoughsurprisedbysomanyparticipants in this“routine” meeting. I did, however, question the reason for Miranda’spresence. Why would the school psychologist be at an educational

meeting?OnthatfirstvisitIhadbeenimpressedbytheideaofaschoolhavingapsychologistforpreschoolers,andIvaguelyrememberedevenhaving joked about it. But, of course,Rexwasn’t the onewho neededpsychologicalhelpinallthis.He’dbeenjustababythen;nowhewasbuta child, with a child’s expectations. He was innocent, blameless. No,Mirandahadbeenhereforme,onthatfirstdayandonallthedayssince.Theschoolpsychologistwastheretoteachparentshowtoliftourchins,to get on with life, to reestablish eye contact with the world. Being inchargeofalltheparent-relatedissues,Icouldonlyassumeshewasheretodayforme.Whatthatmeant,Iwasn’texactlysure,butIrefusedtogiveintooldfeelingsofanxiety,andremainedcalm.Eyesup,straightahead.Mybreathingremainedeven.Inandout,inandout,itfeltsocomfortinginitspredictability.

Once seated, I took out a small notepad,whichwasmore a securityblanket than a means to jot down points under discussion. Miriamfocusedherwholeattentiononme,withoneof her signaturemelt-the-iciest-of-heartssmiles,whichalwaysseemedtosay, “Youcan trustme;I’m on your side,” or “I truly know how you feel.” It was a smile ofempathy, sympathy, and compassion, and Miriam always seemed toexudewarmthandunderstanding.Shewashighlyorganizedandrantheschoolwithprecision,andyetshealwaysmanagedtocarefullydoseherefficiencywithalargeamountofheartandcaring.

Her calming presence massaged away any residual tension I mighthavebeenfeeling,andIwasateaseasshespokedirectly tome.“I’veaskedeveryonewhois involvedwithRextocometothismeeting,”shesaid.Holdingmygaze,shewenton.“Aswedecidedbefore,Ifeel it’sagoodideatotouchbasefromtimetotimeabouthisprogressatschool.So,eachpersonwhoworkswithhimwillexplaintoyouhowshebelievesheisdoing.”

Iallowedherwordstosootheme,reassureme.Iknewfullwellhowmysonwasdoing.Hehad finallystabilized.Thingswere turningaroundatlong last—hispianohadbeen thekey. Imentallychecked the imageofthe keyboard in his classroom—progress, slow, but the process wasbeginning.

As Miriam spoke, everyone was completely silent, watching metentatively,expectantly.Allthewhile,Miranda’sattentionwasfocusedonme. Her look was attentive, but noncommittal. She was a listener, atrainedprofessional,whoknewhowtoreadaparent’sfeelingsmerelybythe way he or she sat or held her hands, or by watching any eyemovement.Mirandamissednothing,saidorunsaid.

Ispokebeforeanyoneelsecould.“I’msohappytobeabletomeetwithyoualllikethis.It’simportantformetoknowthatwhatI’mdoingathomeisright—thatitwillsupportwhatyou’realldoinghere.”Notwaitingforaresponse,barelystoppingforbreath,Icontinued.“Iknowhowmuchweallneed tobeworking together togetRexon track.And Ihave tosayhow excited I am about how he’s changed since he got his pianokeyboardlastyear.”

Iglancedaroundtheroom,expectingthemtomimicatleastpartofmyenthusiasm.Instead,whatI feltwastheirdiscomfort.Maybeitwastheirbody language, the uncertain shifting as I spoke, the eyes filled withsympathy,allfocusedtoointentlyuponme.

IwasMiranda’spupil; indeed,I’dcometocallher“coach,”aslifewithRexwas oddly akin to a competitive sport. Shewas here at the BlindChildren’s Center to teach us parents how to hold our own in a worldmade scary by our children’s births, how to come to terms withfrightening emotions, and how to deal with complex medical andeducational situations. Simply put, she had taught me about thesubtletiesoftruesurvivalintheworldof“specialneeds.”Itwasfromherthat I’d learned to readsituations inmuch thesamewayshecould:bygoing past the spoken word and paying attention to body language,giving importance toall those littleexternal cluespeoplegiveoff—theirposture,thesidewaysglances,eyecontactorlackofeyecontact,telltalefidgeting. I had learned to glean information thatway. And here in thisroom, on this sunny summermorning,my internal alarmwas suddenlysounding.

“Yes,wedoallwanttobeonthesamepage,”Miriamsaidhesitantly,adubiousvalidation.

Sowhatpageweretheyon?Eachpersonpresent,exceptMiriamandMiranda, sat with notes on her lap and probably with many pages ofobservations stored in each of those specialist heads. I had a suddenurge to run,andyetmybody felt leaden. I somehowknewhowpotenttheir words would be. Huge words, with huge implications. Lethal andunforgivingwords.Ibracedmyselffortheimpact.

Hisclassroomteacherwasthefirst tospeak.“Ofcourse,we’rehappyRex’spianoallowshimtorelax.Giventhecomplexityofhissensitivities,that’svery important forhim tobeable toget through theday.”Aslightpause, and then, “But we have quite a few other concerns about him.We’reconcernedthere’snotmoreprogress.”Ihadnoexternalreaction,althoughmyinsideswerechurning.

Miriamcutin,relievingtheteacher.“Hehasn’thadasingleoperationorhospitalizationthisyear,andhe’sstillnotprogressing,”shesaid.Myeyesbored into her as no one in the roomdared to breathe.Everyonewasstill, surely in deference to the assessment they all must know to beforthcoming. “He’s still inconsistent with his walking. So it doesn’t looklike his overall lackofmobility, andhis periodic regressions, are linkedsolelytohismedicalissues.”

Iwasbeingstrippedofmyarmorofdenial,ofexplanations,ofexcuses.Was that it? Had I just become adept at making excuses? I knew hisprogress had been slow in the making. I knew that Rex had startedwalking only to stop several times in the space of six months. And ofcourseIknewallabouthis“spaghettilegs,”mygreatnemesis.Buteachtime he had startedwalking again, I had renewed hope that hewouldcontinue. He would outgrow sensitivity in his feet and any childishobstinacythrownintothemix.Ithadtoend.Therewasnootheroption,since hewould soon be too heavy forme to carry. Hewas now threeyearsold,andthoughhehadn’tgainedanounceinhissecondyear,histhirdyearhadbeendifferent. Inspiteofhisongoingresistance to food,patienceand ingenuityduringfeeding,alongwith lotsofproteinpowderaddedtohismilk,hadsethisgrowthbackintomotionthispastyear.ButsuddenlyIfelttheweightofeachofhishard-earnedtenpounds.“It’sjustapattern,”Ithrewout,graspingatstraws.“Itcanbebroken.”

The occupational therapist responded. “We’ve seen this pattern ofbehavior continue on into adolescence.” I heard the words but didn’timmediately grasp their import—theyweremerewords banging onmybrain, devoid of meaning, disconnected from reality. “Rex is gettingheavierbytheday.”Herimplicationshouldhavebeenobvious,andyetitstill escaped me until a single word hit me head-on—wheelchair! Rexcouldendupinawheelchair!Ilockedonthephrase“gettingheavier.”Itwas true.Rexwasgetting tooheavy.As Ipicturedmyself struggling tocarrymyson,refusingtogiveintousingawheelchair,themeetingwasmovingforward.

Iwasjustgoingthroughthemotions,noddingtosignalunderstanding,acquiescence, all the while pulling myself inside, hiding behind aprotective layer of cloudy consciousness. They were educationprofessionals—clear, concise. They knew their stuff, and they weremoving on with the meeting, reading from a painful script. Now thespeechpathologistwasdiscussingRex’scommunicationskills.Mymindwasdrowning;Icouldn’tkeepupasIheardhersay,“Rexisn’tspeakingyet;hehasn’tpronouncedasingleword.”

“Notyet,”Ijumpedin,halfaffirmation,halfplea.Myvoicehadcrackedwithemotion.Hispianohadbecomehiswayofcommunicating.Hisvoicewouldsooncometoo.

“Yes,butRexisthreeyearsold,”shesaidgently.“Heneedstobegintocommunicate in someway.” She paused heavily. “In whatever way hecan, even if it’s nonverbal,” she added. For me, her voice rang withdissonance,as though trying to infusehope intoahopelesssituation. Iremained silent, once again struggling to follow the gist of her words.“We’dliketoworkwithhimonusinghishandstospeak,teachhimsomesignlanguage.”

Nonverbal, sign language, wheelchair!Theywere concepts broachedwithcare,butthewordsthemselveswerenotcautiouswords,andtomeitfeltlikeabarrage.

“Teachhimsignlanguage?”Iaskedindisbelief.“Buthe’snotdeaf!”

“Butheisnonverbalatthispoint,”Miriamsaid,thenadded,“andthreeyearsold.”

Justthebeginningofhislife,Ithought.ThistimemyownthoughtsweredissonantasIheardhergoon.“Threeyearsisaveryimportantstageinchild development.”Patterns could be set for a lifetime by this criticalage.

MirandahadhereyesgluedonmeasIsattheremute,asthoughshethoughtImightcrumbleatanymomentwereshetolookaway.Andwithgood reason, because apparently the jury was in. Here. Now. Thedevelopmentalalarmclockhadjustgoneoff.Threeyears!WasRex’sdiecastwiththeverdictthathadjustcomein?Partofmewantedtocradlemyheadinmyhandsandcry,“Whyme?WhyRex?Whathadwedone?”Andpartofmewantedtostandupandscream,“Foul!”

ButIonlyreactedinthedeeprecessesofmymind,andIdidn’tcountertheir dire prognosis. Instead, I listened numbly to their reports of theirresearch into optic nerve hypoplasia. Children with this specific eyeconditionhadsomeshockingcommonalities—awholeslewofkidswithspaghetti legs!Walkingwas invariablyan issuewith thesechildrenwhohad the condition. Rosemary, the vision specialist, said, “I’ve beenreadingaboutalotofcasestudiesdocumentedontheInternet.ParentsofkidswithopticnervehypoplasialikeRexhopedandhopedandhopeduntil they finally gave in. Ultimately, they admitted and accepted theinevitable.” I understood the inevitable would be a child too heavy tocarry, a child in awheelchair. Andmore. But then she couched it in asubtle nuance, attempting somehow to soften theblow. “I’mnot sayingRexwillnecessarilybelikethat,butIwantyoutoknowwhatinformationisontheInternet,incaseyoucomeacrossityourself.”

I’d been running a race against time for three years, a life-or-deathrace;that’swhatitfeltlike.Patternsaresetforalifetime.Neverstoppingtotakeabreath,forfearRexwouldlosecriticaltime.Sincethedaymybabyhadcomeintotheworld,I’dbeentryingsomehowtobringsafetytohisunsafeworld,exhortingGod,pleadingonRex’sbehalf.Butnowthespecialists were telling me I’d been running a losing race againstpatterns! A losing race against his brain structure becauseRex’s brain

wasstuckinarigidpatternofnondevelopment.Hiswheelswerespinningin place, going nowhere. Was that it? I was swept up in a current ofviolent, uncontrollable despair. I was babbling in my brain, and yetmanagedtorespondcoherently.

“Thankyouforbeingsohonestandforthrightwithme,”Itoldthegroup.“Havingalltheinformationisimportant,”addingacomfortingbanality,thesimplicity of which acted as a counter-balance to the growing wave ofcomplexandconfusingemotionsthathadjustcaughtmeintheirriptide.

“AsfarasRex’splacementhere,wewilldefinitelyhaveaplaceforhimnextyearaswe’vetoldyou,”saidMiriam.“Afterthat,we’llhavetosee.”Itmeant his final year in preschool at the Center was at risk. If hisdevelopmentdidn’t takeoff,he’dbeoutbytheendofhisfourthyearoflife.

TheCenterdidn’t have thestaff toworkwith childrenover threewhowerenonambulatory,andsonormallykidsdidn’tevenreceiveplacementintheir fourthyear if theycouldn’twalk.Rexhadsomehowmanagedtomakethecutthisyear—perhapsduetothefactthathewouldsometimeswalk.“There’snophysicalreasonhe’snotwalking,”Iheardhisphysicaltherapist say,not so longago. “Hismusclesare fine, a littlehypotonic,butallinall,they’renotkeepinghimfromwalking.”Butwhatwaskeepinghim fromwalking? I wanted to scream.Whatwasmaking hismusclescollapseallthetimeiftheywerestrongenough?Whatwaskeepinghimfromtalking?Nooneeverseemedtohaveanyanswers.

As the meeting concluded, Miranda told me she would be availableanytime Ineeded to talk. “Thankyou,” Isaidwoodenly.Theothershadalready rushed off to their other duties, perhaps purposefully avoidingany potential emotional fallout, leaving me there with the psychologistandeducationaldirector.

I stood up to go but I wasn’t sure exactly where to go, as franticthoughtsbeganpouringinonme.IjustknewIneededtogetoutofthatroom,fast.Iputonefootinfrontoftheotherandjustmoved,untilIpulledmyselftogether.

I walked out of the office,murmuringmy good-byes and thank-yous.Miranda uncertainly watched me go. I approached the stuffed bear,feeling the brightness of the day streaming through the window. Theclassroomdoorswereclosednowthatclasswasinsession.Lifegoeson—a continuum—at once insensitive and reassuring. For once, I didn’tpressmynoseuptothewindowtospyonRex.Ihadtokeepgoing,onefoot in front of the other, eyes up toward thatwindow. I needed to getsomeair, tofigurethingsout. Iwouldhavelikedtofloataway,shedtheweightofresponsibility,beachildagain.

Beachildagain...Istareddownatmysleepingson’sface,sounawareof thehigh-stakesmeetingthatmorningtodiscusshis future.But IwasawareofitineveryfiberofmybeingasIcollapsedintotherockernexttohisbed.Farfromfeelinglikeachild,mybodywasdeadweight,drained,like I’d aged ten years in a day. How do you go on when even amonumentaleffortseemsitisfornaught?Wheneverywhereyoulookit’spitch-blackdarkness?

Ishutmyeyesandmassagedmytemplestorelievepressurepoundingthere—animminentmigrainewasbuilding.Igraduallybecameawareofa sound—like a barely audible tapping on a door slammed shut—soft,gentle,butinsistent.Itwastheretostay.Rex’sbreathing!Inandout,socalmandeven.Asmyfingersappliedmorepressuretothesidesofmyhead,Ibeganrockingslowlyinmychair,likeIwashypnotized,allowinghis breathing to sootheme. Themost primal rhythm of life goes on. Iremembered his gasping, labored breaths in the first weeks of his lifebeforehisoperation—howhe’dsleptatmyside,howI’dbeenscaredtofall asleep for fear he’d stop breathing, for fear he’d just be gone.Inevitably, I had to let go each nightwhenmy bodywas overcome byfatigue, falling asleep against my own will. But each morning I wouldawaken to find him still alive. A force infinitely more powerful than hismotherhadprotectedhim.Iknewthat,somehow.

AsIallowedmymindtorelax,Iheardanothersound,anewrhythmtolayeruponmyson’sbreathing.Thistimeitwascomingfromoutside.Onthe beach, waves rippled against the shore in a gentle caress. It wasanotheroflife’srhythms—itsownsoftlullaby.Suddenlythedistantcryofaseagullcalledout,cutting in.Washe flyingsolo,somehowseparated

fromhisflock?Hishigh-pitchedcryresonatedstronglywithsomeinternalcryofmyown.IopenedmyeyestoseeRex’sfaceaglowasmoonlightstreamed through the parted curtains and softly embraced his cheeks.Theessenceofinnocence.

Againstallodds,mymindwastakingrefuge,

findingresteven,intheoneabsoluteinourlives—theloveIfeltformyson,sustainingmenowinthedarkesthour,bywhatIknewcouldonly

bethegraceofGod.

Istilldidn’tknowwhat the futureheld.WouldRexbe like thatseagullcrying out solo in the night, orwould he rejoin the flock one day?Thequestionswerestill there,maybeevenbiggernow.Surprisingly, Ididn’tfeel assaulted by fear. Against all odds, my mind was taking refuge,findingresteven, in theoneabsolute inour lives—the loveI felt formyson,sustainingmenowinthedarkesthour,bywhatIknewcouldonlybethegraceofGod.

CHAPTERFIVE

SearchingforUnderstanding

Notuntilwearelostdowebegintounderstandourselves.

—HenryDavidThoreau

ThesanctuarywasemptyandsilentasIsatwithRexbymyside.Scantwispsoflate-afternoonsunlightrestingonthepewstomyrightprovidedtheonlyilluminationintheotherwisedarkenedroom.I’dnevercomehereduring theweekbefore,butupon returning fromourday in town, Ihadfelt theneed tobe in this holy place. Iwanted to sit in silencewithnopastor’swords filling the room,with noSunday congregation lending asocial presence. I just wanted to tune into the spirit of God directly,thinking that perhaps I could hear His voice more clearly this way, byfilteringoutintercedants,interpretation,noise.

Turning to Rex, I smiled and said softly, “Noise. Just like yousweetheart, gotta filter out the noise.” I’d had enough “noisy”interpretationsattheBlindChildren’sCentermeeting,thestingofthosewordsstillrippingawayatmyinsideswhenIthoughtaboutthem.WhatIneededwastogetthoseawfulwordsoutofme.SoIwouldspeakthemhere, out loud, and in doing so, share them. In essence, Iwould handthemoffinthehopetherewouldbesolaceinthat.

“Rexisstillnotwalking,Lord...ortalking...or...”Ipausedheavily,thenjustletitout,“ordoingmuchofanything.”Sighingaudiblyinrelease,I bowedmyhead, hoping tohear a voiceother thanmine, beyondmyownthoughts,avoiceofguidance.Butnothingcame.

As I sat in silence, my mind was forced to consider thoughts of theweeksince themeeting.Wehadgoneaboutour livesasusual, inpartfromnotwantingtodisruptourroutineandinpartfornotknowingwhattochange.Butinspiteofkeepingtoournormalschedule—morningsatthe

BlindChildren’sCenter;speech,physical,oroccupationaltherapyintheafternoon;andpianoforRexineveryfreemomentathome—Iknewthatsomething needed to be done.We couldn’t just go on as before, as ifnothinghadhappened.ButIwasataloss.

What I had been observing in thewake of themeetingwasmy ownemotions. These were the emotions I’d lost track of for some time,immersedasI’dbeeninallofRex’sstuff.Butthemeetinghadjarredme,andthetraumaofithadcausedmetolookinsidemyself.Iwasbeginningto see therewasan internal divide. Itwasn’t as obviousasRex’s owndual nature—between the child who played the piano with suchabsorption and creativity and the child who moved so randomlyeverywhereelse—butitwasdefinitelythere.

My duality might be defined as how I dealt with Rex’s disability—betweenhowIfeltathomewithmychildandhowIfeltwhenwewereoutin the world. Alone with Rex, I rarely experienced the weight of hisdisabilityasIhadinthebeginning.Thatwastheloveheinspired,likeonthatnightafterthemeeting.Yettheoldpaincamebackfrequentlywhenwewere faced with other people doing the normal things of life. Dailytriggers remindedme that theworld at large remained a painful place.PainfulforRex,certainly,withhissensitiveears,Iknewthatalltoowell.ButnowIwasbeginningtorealizehowemotionallypainfulitwasformetoo.Myemotionswerejusttoosensitive,toofragile.

Achild’shandreachesoutforabrightlycoloredboxinasupermarket;thechildsmilesupathismother.IseeitandmyinsidesknotupasIrushoff down the aisle with my son, whose own unseeing eyes remainoblivious and downcast. Children are building castles in the sand ortrottingalongtheseashoresearchingforshellsasIpushRexpastinhisjoggingstroller.WhenIcompareRex’ssituationtotheirs,itonlyservestoamplifythedividebetweenRex(andme)andtherestoftheworld.

Theothermorning ithadbeenkidsonaplaydate in thepark runningbetweentheslide,swings,andthemonkeybars,whiletheirmomssatontheparkbenchchatting.

“I’mexhaustedallthetime,”saidonemom.“IfIturnmyback,Tommy’s

offandintosomenewmischief.”

“Lisa likes tohangaroundme,soshedoesn’t tear thingsup,” repliedthe other mom sharing the bench, “but I never knew a three-year-oldcould talksomuch. ‘Giveme this. Iwant that.’And thequestions!Shealwayswantsexplanationsforeverything.”

Thatwasenough forme. In fact, I knew thatgenericconversationbyheart—thesamewordsspokenby theothermothers I used tomeet inthisverypark,beforeIhadgivenupontheconceptofthe“playdate,”atleastforthetimebeing.Backwhenweusedtoacceptthem,thesedateshadalwaysconsistedof thesame thing—theothermotherssataroundcomparingchildstorieswhiletheirkidsplayedtogether,kidswhoalwaysseemed to be fast and curious. The world wasmade for the fast andcurious,andtheworldcertainlyhadtheminabundance.Rexwasneither.SoonthosegettogethersIwouldalwaysbewiththekids,notthemoms,helpingmysontoplay,toswing,ortoslide,helpinghimtointeractwithhisenvironmentinthemostbasicways.

Onthatday,theoh-so-familiar,tinnyvoicesoftheyoungmothersfadedawaywiththeircomplaintsringinginmyearsasIcarriedRexovertooneofthesecurebabyswings.Myblindchild’splaydatewasonceagainwithhismother,asithadalwaysbeen.Hecouldn’tplaywithouthelp.Icouldneverexperiencethejoyfulnormalcyofbeingamomwhosatonabenchwatchingherchild.

Iopenedmyeyesand raisedmyhead to thealtar. “IknowYoumusthaveaplanforRex;Ido,”Isaidsimplybutresolutely,lettingtheimpactofthewordssettleintomyself.Theremustbeareasonforallof this. “Ijustdon’tknowwhatit is.I justdon’t.SoI’mgoingtoneedYourhelp.”Ipaused in reverence, humbled, knowing only that this was where Ineededtobe.“Helpmetosee,Lord.”Helpmetosee.ItwasthefirsttimeI’dprayedforanythingotherthandirecthealingformyson.

OVERTHEnextmonth, I foundmyself returning to theacademics thathadbeenso important tomebeforeRexwasborn. I felt if I got to thebottomofitall,thentherewouldbeascientificexplanation,areason,toguideme.Myquestforknowledgeresumed,sparkedbydesperationand

fueledbymyneedtosee,myneedtoknow.

The logical place for me to start was the medical world, with thedoctors,inthehopesthattheirexpertiseinthebrainandbodywouldgivemesomeanswers.SinceRexwaspartoftheChildren’sHospitalstudyofopticnervehypoplasia,astudythatwasgearedtowardfindinganswersabout its cause and future consequences, I went to see hisophthalmologistthere,Dr.MichaelBryant.

Dr.BryantwasbusilyjottingdownnotesonanotepadasIwalkedintohisoffice,remindingmeofthedayIhadfirstlearnedofRex’sblindness.Surroundedbythetoolsofscience,assorted lensesand lights,andtheinevitable ophthalmoscope, the doctor seemed in his element. Hewasimmaculate and preppie, wearing a dark suit, a striped shirt, and histrademarkbowtieandspectacles,hishaircarefullycombed.Helookedevery inch the intellectual hewas reputed to be.Thedoctor lookedupbrieflyasIsatdown,butthenhehelduphishand,agestureforsilence,asthoughimploringmenottointerrupthisthoughts.ItwasarequesttogivehimonelastmomenttojotdownonelastvitalnotebeforehehadtoshiftgearstofocusonRexandme.

Hepushedthenotepadtothebackofhisdeskandstooduptoshakemyhand.“It’snicetoseeyou,Mrs.LewisandRex,”hesaid.Hismannerwasprofessionalandpolite,butIfelt itwasabitrote,withhismindstillcaughtup inhisown important thoughts.As Isearchedhis face, Iheldouthopethatthismanofscience,ofsuchseemingintelligence,wouldbeable to use that gift to provide me with the answers I was seeking. IbrieflyexplainedmyconcernsandhandedhimafolderfullofRex’sbrainscans. TheMRI imaging sheets had been on file in the hospital sinceRex’searliersurgeries.

He clipped the sheets to an illuminated board beside his desk andmovedhisheadclosertothemostrecentscan.“Thecysticareaisthere,”he said, pointing, with the pen in his hand, to an area that appearednothingbutblotchytome.“Butthereareotherabnormalitiesaswell,”hesaid, clinically surprised, as though he were recording notes into aDictaphone.Hedidn’tdoanypointing this timeorspeakdirectly tome,but I saw thepuzzled lookonhis face, likeonewho’dbeenblindsided

anddidn’tlikeit,orlikeascientistwho’dallowedanomissioninresearchdataunderhiswatch.

“Whatdoyoumean,‘otherabnormalities’?”Iasked.

“He has no septum pellucidum,” the doctor said, still looking at thescans. “And his corpus callosum is smaller than normal.” He recitedthese facts in a way that seemed automatic, rehearsed, like he wasreading from a script. As it turned out, he was reading the script of adiagnosis.Glancingbrieflyatme,hisheadremainedfixedonthesheetsas he told me it was a pattern, that these specific types of brainmalformations happened frequently in children with optic nervehypoplasia(ONH).Butthepresenceofthebrainabnormalitieschangedtheofficialdiagnosis fromONHtoseptoopticdysplasia.And therein laythe offensive error in the doctor’s research, or at least that’s what hisattitudeseemedtoimply.

“ButIdidn’tknowaboutthatbefore,”Isaid,disbelieving.“Ididn’tknowtherewereotherabnormalities inRex’sbrainbesidesthecyst.He’smysonforheaven’ssake;Ihavearighttoknow,”Isaid,besidemyself.

Reluctantly, he turned to face me. Then he said, “Apparently there’sbeen some miscommunication among physicians.” Just as quickly, heretreated back into his professorial style, avoiding further explanationsabout the “miscommunication.”Before Icouldask ifhewasreferring toRex’s neurosurgeon, he launched into a tutorial. He explained that theseptum pellucidumwas a thinmembrane located at themidline of thebrain,whichseparatestheleftandrightbrainhemispheres.Hecontinuedbydescribingthecorpuscallosumasabridgeofwhitematterjoiningthetwodifferentsidesofthebrain.

I felt my own brain rattling as I tried to follow the scientific mumbojumbo, my insides beginning to shake. I wanted to grab him by theshouldersandjustshakehim!Rattlehim!Bouncethosespectaclesandknockthatbowtierightoffhimtogettosomethingreal.ButallIcoulddowasblurtout,“Butwhatdoesallthismean?”

The doctor sighed in resignation, like I was forcing him to come out

frombehindhisprotectiveshieldofscience,forcinghimtobehuman.Hetookabreath,asthoughitwererealefforttoshiftdownsomanygears,then said, “Simply put,Rex has no divider in his brain, and the bridgelinkingthetwosidesissmallerthannormal.”

Ifelttearsoffrustrationbeginningtostingmyeyes.“ButwhatdoesallthismeanforRex,forhislife?”

The doctor leaned forward, sliding his glasses down to the tip of hisnosetopeeratme,indulgingme.“Mrs.Lewis,I’mjusttwoyearsintomyresearch,butwhat I’m finding is that there’snorealdifferencebetweenthe children with septooptic dysplasia and those with optic nervehypoplasia.” This timehe tried to translate evenwithoutmyasking butseemed to be reaching the limits of his patience. “Or, if you want, nodifferencebetweenthechildrenwiththoseparticularbrainmalformationsandthosewhodon’thavethem.”Andfinally,inatonethatimpliedIwasa child needing everything spelled out, he said, “It doesn’t changeanything.Itwon’tmakeanydifferenceforRex.”Andthatwasthat,tutorialover,classdismissed.

As IputRex intohiscarseat, somethingdidn’t set rightwithme.Myinstinctstoldmetheseptumpellucidum,theretodividethebraininhalf,hadtohaveafunctionotherthanamerephysicalpresence,oritwouldn’tbethere.Andifithadafunction,whycouldnobodytellmewhatitwas?Wasthehumanbrainsuchamystery?Coulditbepossiblethatthislittlethree-year-old boy in the car seat was leading us into some sort ofunchartedterritory?Itwashardtobelievethatsuchcouldbethecase,intheageofmodernmedicineandtechnology,but thatseemedtobeourpresentreality.Withthatgnawingsenseofuneaseinmygut,Iwonderedwheretogofromhere.

MaybeRex’sneurosurgeoncouldthrowsomelightonthematter,helpeasemyownfrustration.Iwrotehimaletterandgotanappointmentforjustaweeklater.WhilewaitingwithRexforthebusysurgeontoentertheoffice,Irealizedthatthisplacealwaysmademeanxious.Ithadatoncethe feel of waiting and foreboding. I suppose that’s what pediatricneurosurgeryissupposedtofeellike.

Thesurgeonentered inaflurry.This timehisuniformwasawhite labcoat over blue hospital scrubs. Thisman always seemed to be on themove,andhislean,agilebuildandfeaturesaddedtothatimage.Hishairwascompletelywhite,atestimonytoyearsathistrade,buthisfacewasunlined and smiling. In spite of the brusque aura that surrounded thiseminent doctor, he had the ability to focus his eyes right on you anddisarmwithasmile,likeanelderstatesman.Helookedmestraightintheeyenow,withan indulgent smile,andsaid, “I’ve readyour letter,and Iunderstand your concerns, Mrs. Lewis.” However, he went on only toexplain that Rex’s cyst remained under control and the shunt wasfunctioning properly. That was certainly good news, but it was not theinformation I was looking for. When I moved on to my real concerns,tryingtoelicitcluesastowhatRex’spotentialbrainfunctionmightbe,hesaidhereallydidn’tknow.Thenhehitmewiththatsmileagain.Butthistime it didn’t disarmme. It just seemed to say, “End of accountability.”TherewouldbenoprojectionastohowthecurrentstructureandstateofRex’sbrainwould impacthis life.Hewasasurgeon,a cutter, and thatsimplywasn’this responsibility.And, tobe fair,heprobably reallydidn’tknow.

Thatsecondhospitalvisithaduppedtheante,bothinexpectationsandinfinaldisappointment. Icouldn’tbelievethatdoctorsofsucheminencecould be like that—seemingly so myopic. How could the system ofmedical specialty be so compartmentalized that ophthalmology andneurologydidn’tevenseemtocommunicate?Wasthissupposedtobuildhighlyqualifiedspecialists?Ifso,Iaskedmyself,atwhatcost?Becausefromwhere Iwasstanding, itmade their vision restrictedand renderedthemboth incapable of helpingwith any sort of global brain diagnosis.HowwouldthedifferentpiecesoftheRexpuzzlefittogethertodefinehisbeing?Whatcouldweexpectfromhislife?Andwhycouldn’tanyonetellme?

ThewholehospitalexperiencemademefeelasthoughIwasturningincirclesandgoingnowhere.Findingmorequestionsthananswers in themedical world, life hadn’t gotten any simpler than when I’d begun mysearchforinformation.Ifdoctorscouldn’thelp,andthere’dbeennowordfromGod, I hoped the therapists could help. In frustration, I turned to

Rex’sweeklytherapyschedule.

FirstcameoccupationaltherapyonMondayafternoons.Thepurposeoftheoccupationaltherapist(OT)wastohelpRexusehisbodyandhandsin appropriate ways to carry out his daily activities. They worked ondeveloping the muscle movement of each individual hand andcoordinating theuseofhishands tomake thema team.Theycalled it“bilateralcoordination.”

Rex’sOT,Jane,beganthesessiontoday,assheoftendid,bybouncingRexonatherapyball.Thiswasto“gethismotorrunning,”inadditiontoworking on balance and strengthening his stomachmuscles. She heldhimsecurelyatthehips,bouncinghimupanddown,forwardandback,sidetoside,ashelaughedandflappedhisarmstoeachsideofhisbody.I told her of my recent discovery that Rex’s brain had a smaller-than-normalbridgebetweenthetwosides,towhichsheresponded,“Hedoeshave extreme difficulty crossing midline. Could be the reason.” Sheexplained “difficulty crossing midline” as “lacking fluidity of handmovement on theopposite sideof thebody.”When I looked confused,shesaid,“Just thinkofmidlineashisbellybutton.Hedoesn’tmovehisrighthandpasthisbellybuttontotheotherside.Samewithhislefthand.”

Well Iknewthat! I justdidn’thavea label for it.Onhisown,Rexwaslikearobotwithtoysorobjects,battingtheonesontheleftwithhislefthandwhiletappingthosetohisrightwithhisrighthand.Ifhewantedhishands to change sides, instead of crossing them over his belly to theother side, he would spin on his bottom. He had even perfected themovement. I called it the “butt spin”: half circles, full circles, and onoccasion the“double twister.”And itwaseffectivebecause if Iplacedamusical toy tohis left, and touchedhis right hand, saying, “Play itwithyourrighthand,Rex,”hewouldexecuteacleanhalfcircle,andvoilà,hisrighthandwouldplaythetoythatwasnowathisrightside.Iwasawarethathewasn’tcrossingoverinanormal,flexibleway,buthadattributeditmainly to his blindness and lack of visual information to imitate. I hadbelievedthatwithtraininghewouldlearnmore“normal”movements.Butsuddenly, Iwasbeginning tosee that itwasmore,muchmore—anewrealitywasdawning.Rex’sbodywasmore rigidbecausehisbrainwasmorerigid,andhelackedtheconnectorsnecessaryfornormalflexibility.

Jane geared the OT session to address that issue. She helped Rexslidedownofftheballontothethick,cushionedtherapymatandassistedhim intoa side-sittingposition.Thatmeanthehadhis legsbentat thekneeandbothcalveson the leftsideofhisbody.Thispositionallowedhislefthandtorestontopofhisrightlegandevencrossovertohisrightside. Thus, he was “crossing midline.” He didn’t whine or fight theposition,whichsheapplauded,“You’redoingagreatjob,Rex.”

Indeed, he sat playing with the toy she’d placed there. It was hisfavoritetherapytoy,alittlexylophone,whichhecouldtapwithabatontomakecrystallinenotessingout.Hewashavingagoodoldtime,andhewasnotonlyholdingthebatonfirmly inhis lefthandbutwasusingit toplaythetoy instrumentonhisrightside.Suchasimplethingforalmostanychild,yethere itwassomething tobeapplauded.Afteracoupleofminutes,Janeremovedthetoy,signalingitwastimetochangeactivities.This routine told Rex he needed to get himself out of the side-sittingposition.But a confused look crossed his face as he tried tomove hisbody.Hedidn’tknowhowtodoit.Janehadputhimintotheposition,andhedidn’tknowhowtounwindhislegs.

“Rex, you’re stuck!” I said, loudly voicing the obvious, which partlymasked the growing sense of unease I was feeling. Then convertinginternaltensionintoaction,Irepeated,“You’restuck,Rex,”butthistimeitwas in a playful tone, which I hoped would stimulate him. “Come on,honey,” I urged. “You can get yourself unstuck. You can do it.”ExuberancecouldinciteRexintoactionwhenitwasfocuseddirectlyonhim.Hesoaked itup likeasponge, likenow,andhis face litup feelingthepulseofenergy.Itsparkedaspurtofadrenaline,causinghislegstostraighten at the knees, as he took the challenge to get back into anormal sitting position. Unfortunately, his excitement had gotten out ofcontrol,andhe’dbeen tooquick, too jerky.Hisbodydidn’tcompensatebyshiftinghisweight inorder tomaintainbalance,andhe toppledontohis right side.He laughedashe tumbled, thinking itwas fun.Normallythatlaughwasimpossibletoresist,buttodayitmademewanttocry.

That night I sat wearily on the living room couch replaying the day’stherapysession inmymind, reliving the therapist’swords,hearing their

negative bent—lacks fluidity ofmovement, difficulty crossingmidline. ItwasexhaustingformeandforRex, inspiteofthemomentsoffunhe’dhad.Whyshouldlifebesuchhardwork?Iwassippingaglassofwine,trying to unwind, while watching Rex doing his own unwinding at hispianokeyboard.Hishandsweremovingmorerapidlythanusualonthekeys,likehewasreleasingtheday’stension.Wewereclearlyeachusingourowncopingmethods.

Astheminutesslippedpast,Iremainedcaughtupinmythoughts,eachone more confusing than the next. Why was God letting me be soconfused,whenitwasclarityIwassodesperatelyseeking?Iglancedatthewineglass inmyhand—justa fewdrops left.ThenI lookedoveratmyboy.Hewasstillplaying,buthistempohadsloweddown,becomingmellower, and he looked at peace, his face at ease.Weaving notes toform his own little made-up melodies with his hands that were sorhythmic,so . . . fluid.Therewas theveryword the therapisthadusedtoday—lacks fluidity in his hand movements. “But look at their fluidityhere,”Iwantedtoshout.

Then, likehewas readingmymind,hesuddenly threwhis righthandacross his body to hit piano keys to the left, then pulled it back again,only to throw it over oncemore in what became a series of effortlessleapstothefarleftextremityofthekeyboard—overtotheleftandbacktotheright,repeatedly—whilehislefthandplayednotesdirectlyinfrontofhisbody.Crossovers!Hewasusinghis righthand tocrossover,againand again, meaning he was “crossing midline.” Repeatedly andeffortlessly!Rexcouldgethishandacrosshisbellybuttononhisown—easily! I almost dropped my wineglass as I realized his brain had thecapacity;itwasrightthereinfrontofmyface,likeananswertoprayer.Icouldn’t wait to show his occupational therapist. I asked myself,DoesRexknowwhatheisdoing?Asthoughansweringmythoughts,hebegansquealingindelight.

The following day was Tuesday, which meant physical therapy, notoccupational therapy.Hisphysical therapist (PT),Tam,workedwithhimtogethisentirebodytomovebetter,notfocusingprimarilyonhishandslike hisOTdid, although therewas some carryover. Tamoftenworkedwithhimondifferentswings,fromplatformtobolsterswings,gettinghim

toclimbonandoffandthenworkingonRex’sbalanceoncehewasontheswing.Itoldheraboutthepianocrossoverand,beingwellawareofRex’s“crossingmidline”issuesherself,shewasthrilledtohearwhathe’ddoneatthepiano.

Seizing themoment, she tried to get him to demonstrate the skill bygraspingthelefthandropeonaplatformswingwithhisrighthandwhilesheheldhis lefthand.Sheevenputa littlemusicalboxby the rope toentice him to reach for it with his free right hand, but his hand justextendedoutinfrontofhisbody.Aftertryingunsuccessfullyforacoupleofminutes,Rexbecame frustrated,andmyownsenseof letdownwaspalpable.Hecouldn’tdoit.Orwouldn’tdoit.Iconfess,inthatmoment,Ididn’t knowwhich it was. I was even beginning to doubt the reality ofwhat I’dseenat thepiano.Thatchildseemedso far removed from thechildwhowas in frontofmehere.Afterwhat seemedaneternity,TamtookRex’shandanddrewitgentlyacrosshisbodytograsptherope.

“It’sokay,Rex;you’redoingfine,”shesaid,inanattempttorelievethetension she felt surrounding her. She then helped him into his usual“climbingontheplatformswing”position.Hebegantoraisehisrightlegontothebigswinginaslow,laboredmovement,asIrepeatedtoherthenews from the scans regarding the two sides ofRex’s brain. Fromherpointofview,Rex’smaindifficultywasnotinhismusclestrength,butinhisinabilitytousethatstrengthtoaccomplishaspecificmovement.“Hecan’t motor plan when he has to execute a series of different bodymovements.”

Motorplan?Ididn’tgetitandsaidso.

“It justmeanshehasthestrengthtoclimbontheswingandall theseswings,”shesaidwithasweepofherhand.“Hejustdoesn’tknowhowtodoit.”

I watched in growing discomfort as Rex struggled to get each leg insuccessionontotheswing.Tamexplainedhowmovementsthatmostofusdowithabsolutelynothoughtareactuallycomplexpatternsofsmallersteps.Rightkneeup,handsforward,shiftweightforward,thenleftkneeup, twist torso onto bottom, and so forth. It should be as natural as

breathing,right?Ifnot,theremustbeaseriousbreakdowninthebrain’swiring.

Rexfinallyfinishedhistask.Ithadtakenhimmonumentalefforttoclimbontotheplatformandgrasptheropes.Butnowhewasreadytoswing.Itwashisrewardforpushinghisbodyandbraintothelimit.AsIwatchedRex flying through theair,heseemedso freeandunfettered.Yetoncethe swing stopped and he was required to climb down, the torturedprocessbeganonceagain.Itseemedendless!That’swhenTamhitmewith the kicker: not only couldRex notmotor planmovements he hadneverdonebefore,butoncehewastaughthowtoexecutethem,hehadtroubledoingthemagain.“It’scalledapraxia,”Tamsaid.

Another newword shewas applying tomy son; another neurologicaldisordersupposedlyafflictinghim.Inessence,itimpliedhisbraincouldn’tremember how to accomplish even the simplest movements. Thatseemed impossible,certainlyunthinkable.Howcouldyou forgethow toclimbontoaswing?AsIlistenedtoherexplanation,Irealizedthisthingwas getting out of hand. It was becomingmore than I could handle; Ithought informationwouldbe thekey tounlock themysteryofmyson,butIwasgettingburiedundertheweightofitall.Howcouldbrainpartsdoctorssaidwere“insignificant”wreaksuchhavocinmyson?

Thenextdaywasspeechtherapy.Thephysicalbodyisonething,butspeech touches at the very essence of a human being, the ability tocommunicate. For me, it represented the ability “to be.” I neededdesperately to cling to hope as I entered the familiar speech therapyroom,but I felt feargrippingmy insidesevenas I setRexdownat thetablewherehenormallyworked.Withoutpreamble, Iaskedhisspeechpathologistwhatshebelievedhis issueswere.Whywasn’thespeakingyet?

Suzanne hesitated just amoment, and then tomy shock and horrorsaid,“I think it’sbecausehehasspeechapraxia.”Speechapraxia!Shebelieved his speech was impaired by the same disorder affecting hisbody!

NoGod,not that! I screamed inmymind.Not thatwordagain.But it

wasouttherenow;Pandora’sboxhadbeenfullyopened.Hisbrainwasunabletotellhistongueandthemusclesinhismouthhowtoformulatethe sounds that normally develop into speech. A new brain/bodybreakdown, or in this case brain/mouth breakdown! But Rex couldbabble. He could get indiscriminate sounds out of hismouth. But, sheemphasized,hecouldn’tdoitoncommand,andthatwaswhatmadeherbelievehehadapraxia.

AllIcoulddowasrepeatthewordsinmymindandrageattheCreator.“No,God, not that!” It simply couldn’t be true, because I wantedmorethananythingtohaveaconversationwithmyson,to justhearhimsay,“Mama.”Heneededavoicetospeak,andIneededtohearhimspeak.

Rex’sspeech therapist,perhapssensingmydisbelief,saidshewoulddemonstratewhatshewastalkingabout.Shesetaspinningtoponthetableinfrontofhim.Thetopplayedmusicasitspun,andsheknewthiswould normally cause Rex to make happy babbling sounds. And sureenough,itdid.Atthesoundofthetinklingmusic,Rexsquealed,clappinghishandsinexcitement,andspurtedoutastringof“bas,”—“ba,ba,ba,ba,ba,ba.”Shethensilencedthetoyandsaid,“Let’shearyousay‘ba,’Rex, like you just did.” Shemimicked the pronunciation several times,exaggerating “bb-aa,” so there could be no doubt as to what he wassupposedtodo.

Rexputhislipstogetherasheshouldtomakethe“b”sound,andIwaswilling him to do it.With lips pasted together, he twisted his mouth invariousdirections,as if thatwouldmake thesound.His facewent tautthenandhislipspursed,asthoughthe“b”soundwasgoingtoburstout.He was trying with everything he had, and I leaned forward as if thatmightpullthesoundoutofhim.Ijumpedin.“Say‘ba,’Rex,youcandoit,sweetie,” and waited, feeling it would come, praying it would come.Anothersecond . . . two, three,aneternity,and thensuddenlyhis facewentslack,hisvoicestillsilent.

Rex’s head drooped like a broken doll as he sat there listlessly. Theefforthaddrainedhim,likearubberbandthathadbeenstretchedtoitslimit and then snapped. It had drained us both. The therapist didn’timmediatelybreakin,presumablyoutofrespect,orperhapsbecauseshe

felt thestrainaswell.Silenceweighedheavily in theroom,brokenonlybythefaintestmetallichumming,asthoughitslengthwasameasureofour exhaustion. Rexmademe notice sounds I’d never noticed before,lostastheywereformostofusinthecrushoflife.Buthissensitiveearsheard everything, often making me seek out the source of potentialoffenders.Ilookeduptoseewhatwasmakingthesound,andIrealizeditwasthewallclock,usedtokeeptimeforthetherapysession.Alargeroundface,withbignumbersandasweepinghand,mechanicallytickingaway the seconds, keeping thebeat of life. Timewouldn’t stop. In thatinstant,itseemedtobetheonlycertaintyIhad.

Nearing the end of my rope, I had nowhere to go but back to thebeginningwherethiswholefrantic,confusingsearchhadbegun.Backtothe Blind Children’s Center and the very room where we’d had themeeting that had set this whole process in motion. Betweennoncommittal doctors with their business-as-usual attitudes andtherapists all seeming to demonstrate endless areas of severedysfunction, Icouldn’tseem toput itall together, tomakesenseof it. Ineededsomeonetohelpmeconnectthedots.Iknewthebestpeopletodothatwereathisschool.

Rexhadbeencomingtoschooleveryday,butIhadn’tbeenbackintheeducationaldirector’sofficesincethatmeeting.Mercifully,thoughtsaboutwheelchairs and sign languagewere subdued by the adrenaline of themoment. All my energy was focused onmy current mission—tomakesenseofwhatseemedtobenonsense.Miriamwaspoisedasusualandgreetedmewarmly.“Howareyou,Cathleen?Howhaveyoubeen?”

After exchanging a few niceties, I cut to the chase. “The doctors atChildren’sHospitalsayonething.Butthenthetherapistsseemtoproveexactly theopposite,” I said,myannoyanceobvious. Iexplained toherthenewfindingsinRex’sbrainscans,andhow,asaresult,henowhadanew eye diagnosis. “But according to Dr. Bryant, that won’t make anydifference.” Iwasspeakingquickly, venting, ina tone that let her knowjusthowfedup I reallywas. “I thinkhesaid ‘no functional impact.’Canyoubelievethat?”

Miriamsmiledatme,tryingtotaketheedgeoffmyanger.“Iseeitwith

doctorsall thetime.It’sunfortunate,buttheyhavetheirdomainandwehave ours.” She shook her head slowly and leveled her eyes on me,trying to supportmewith the intensity of her gaze. “Dr. Bryant doesn’tworkwiththekidsdayafterdaylikewedo,”shesaid.“SoIdon’tseehowhecouldknowwhatimpacttheabsenceoftheseptumpellucidummighthave.”Shewasleadingmewithherlogic,confirmingwhatI’dlearnedinall of Rex’s different therapies. “The fact that Rex’s diagnosis is nowseptoopticdysplasiachangesalotinwhatourexpectationsforhimmightbe. In our experience working with the kids—children with the brainstructure abnormalities like you’re now tellingme Rex has—it ismuchmore involved than children with just the eye damage.” She stressed“workingwiththekids”astheessentialqualifyingcriteriaandpausedtogiveme a chance to respond.When I remained silent, she drove herpoint home in a calmly professional voice. “Cathleen, there’s a bigdifferencebetweenseptoopticdysplasiaandopticnervehypoplasia!”

There it was! Was that what I’d been trying so desperately to findthroughexplanations,throughscience?AsIsatfacingMiriamandheardthosewords,distraughtasIwas,Ifeltanoddjabofirony.I’djustgivenher validation for Rex’s severe developmental delays in a label:septoopticdysplasia.They’dhandedmetheirverdictatthemeeting,butnow Iwas theoneproviding theproof, likeadoublewhammy.What atwist! She’d caught the irony too—I read it in her eyes—but therewassomething else there as well. Her face had softened to an almostmaternallook,whichsaid“compassion”tome.Hertonehadclearlybeenprofessional,butIcouldn’tmisstheempathyIheardthereaswell,asifsheknewtheroadaheadwouldbeaveryhardone.

Arriving home, I phoned my son’s babysitter. “Is there any way youcouldcomeoverandstaywithRexforanhourorsorightnow?”Iaskedinavoicetingedwithdesperation.

“Issomethingwrong?”sheasked,worried.

Iassuredherthateverythingwasfine,butthat Ineededtoairoutmybrain,tosortout“somestuff.”

Theyoungladyarrived,andIleftthetwoofthemthere.Ididn’ttakethe

elevators to make the descent to the beach today. That would be tooconfining, and confinement was the last thing I needed with my headabouttoexplode.Iwouldclimbdownthestepstothewaterlinetoday,alleighty-nineofthem,andhopetheexertionwouldhelptaketheedgeoffthe emotions all knotted up insideme. Upon reaching the sand, I wasbreathingheavily,butIknewIcouldn’tstophere.Glancingtotheright,Isaw the tidewas in too far toallowmepassagepast the rockson thatside.SoItookoffrunningtotheleft,wherethesandybeachwaswider.Asthewaveslashedattheshore,myfeetwererippingthroughthewetsand.Iranonandonintoanafternoonheadwindthatslowedmypacebutcouldn’tstopme.Therewerenoseagullsshriekingoverheadtoday,butIheardtheminmymind,eggingmeon,asmychestbegantoburn.“Don’tstop!Don’tyoudarestop!”AndIdidn’t,notuntilnatureblockedmyway.The tidewas just toohigh thisafternoon,and I reachedanarrowstrip of beach where a mass of rocks blocked my route. I brieflyconsideredscalingthem,butsawthat, likelife,theyweretoomany,toohigh.Ithrewmyselfdown,rightthereinthesand,buryingmyheadinmyhands.Mybreathwasgaspingandirregularasmyjawclampedtight.

Ijustcouldn’tgetthefrustrationout,couldn’tgetawayfromit,nomatterhowhard I tried. Itwasstillall twistedup insidemeas I liftedmyheadfrommyhands, lookingupward ina rapidmotion.Thewindhadswepttheskyclean,leavingitadeep,vibrantblue,freeofanycloudsthatmighthavemarreditsbrilliance.Butinsteadofcalmingme,theflawlessnessofwhatIsawoverheadonlyservedtomakememadder.

“God,Idon’twanttoseeanymoreblueskies!”Iscreamed.“Don’tYougetit?I’mtiredofit.”IpausedforjustamomentasIfeltthetearssurginginmyeyes.I tookadeepbreath,heldit forasecond,andwithtearsofrage spilling down my cheeks, I let the dam break. “And how manyperfectly normal kids do You think I need to see every day to get themessage?Igetit!Rexisn’tnormal!Butwhy?Iwanttoknowwhy.AndIwanttoknowwhatheis.Whoishe?IthoughtthatbygettinginformationI’dfindout,Youknow.Itwassupposedtohelpmesee...that’swhatIaskedYoufor.Iwanttogetit,togetwhathislifeisallabout!”

My eyes were blurred from tears rising from a well of rage I hadn’tacknowledgedbefore.AsIshouteduptoGod,whoseemeddeaftomy

pleas,Isuddenlyknewhowdeepmyangerran.Firstofall,Iwasangrywithmyself for thewholemess. Iwasdefinitely angrywith the doctorsand therapistswhohad ledmenowhere.But Iwasalsoangrywith theothermothers,allthosemotherswhodaredtohavenormalkids.AndifIreallywantedtoadmitit,Iwasangrywiththekidsthemselveswhodaredtobenormal.Butmyangerdidn’tstopthere.Itsuddenlyseemedsocleartome—Iwasangrywiththepresident,too,andthepostman,angrywithfriends,certainlyatstrangersinthestreet.ButmostofallIwasangryat...“You,God!Youareignoringmypleas;Youwon’tlistentome.”

Apraxia . . . crossing midline . . . bilateral coordination . . . corpuscallosum...septoopticdysplasia...brainmembranes...connectors...dysfunction,andonandon.IspitthewordsoutlikeapoisonIhadtoget out before it killed me. My fists were clenched in utter fury. “Andautism, God!? I’m blinder than Rex right now!” I shouted, my voicecrackinginintensity.Butitdidn’tstopmeasIdeliveredmylastdesperatepunch, throwing my voice into each word to make it rise up over thewavesandlinger.

“DON’T...YOU...CARE?”

CHAPTERSIX

MiraclesAmotherunderstandswhatachilddoesnotsay.

—Anonymous

ItwasSaturdaymorninginthepark,andIfeltasifIhadahangover.Noheadache, just a feeling of disconnect, like I was watching the kidsrunningintheplaygroundthroughahaze,hearingtheirchatterthroughafilter.EversinceI’dspilledoutmyheartonthebeachtwodaysbefore,I’dbeen oddly out of sorts. The information overload followed by theresultantmeltdownhadleftmeinthislistlessstate.ThentherewasRex.He was anything but listless, bouncing up and down in my arms as Icarriedhimtohisswing.ImighthaveseenitasanironicreversalofrolesifI’dhadmywitsaboutme,buttodaythere’dbenodeeperanalysis.AllIsawwashisexcitement,andnothingcoulddimhisexpectationthatinamomenthewouldbeflyingthroughtheair!Helovedtoswingmorethananythingexceptplayinghispiano.Thefactwas,hecravedmovement—all the movement he couldn’t get from his own legs. He loved to bethrown in the air, spun around at high speed, bounced up and down,jostled,thrownovermyshoulderandcarriedlikeasackofpotatoes,andavarietyofothersurprisingmovementswhenyouconsideredhislackofself-initiated mobility and other sensitivities. His therapists called it“vestibular,” or movements that stimulated his inner ear, giving him asenseofbalanceandwell-being.Ijustcalledit“beingachild,”especiallynow. That’s what I needed to hold on to. The rest had quite simplybecometoomuch.

Rex’sfacebeamedthemomenttheswingbeganitsgentlearc.Ialwayspushedfromthefront,soIcouldtalktohimwitheachpush.Weplayedconceptual games wherever we went—I never let up trying to get hisbrainwires to connect. And for him, the gamesmade everythingmorefun.So, today, inspiteof thegeneralapathy Iwas feeling,conditioningtookover oncehewas seated, and I began chanting, “Backand forth,

backandforth,Rexisswingingbackandforth.Oh,soslowly,backandforth.”

As the swing gained some momentum, Rex’s face sparked withexcitement,knowing thatsoonhewouldbereallymoving. “Shallwegohigh,high,high,wayuptothesky?”Iasked,likeI’ddonesomanytimesbefore.Iwatchedhiseyeslightup,barelyabletocontrolhisanticipation.Hesaidnothing,butIknewwhathewanted,andsoIletripwithacoupleofstrong, thoughadmittedlyrobotic,pushes.Mythoughtswerestill inamuddle as I heardmy son’s squeals of delight. In spite ofmyself, thesounddrewmeintothegame,andwithoutwarning,Igrabbedtheswinginmid-arc,stoppinghisflightwithajerk,surprisinghim.

“Uh oh, Rex is caught in a trap!” I held him prisoner there as hissquealsturnedtodeeper,morevibrantlaughter.ThenIgaveanextra-bigpush.“Rexjustgotoutofthetrap.”Asheflewbackwardtotheheightoftheswing’sarc,Iadded,“Withaswoosh!”

That’swhen laughter really tookoverhis littlebodyand,withapowerthat cut through numbness, it took over me as well. Swooshing andlaughing!So,therewewere,laughinglikewehadn’tacareintheworld,caught up in a joy that was attached to nothing but itself and theimmediacy of that moment, joy that was oblivious to time andcircumstance.

ItwasthereintheunionofourlaughterthatIfinallyfeltHispresence,heard the voice I’d been seeking. It was clearly and unmistakably thevoice ofGod impartingHismessage.And itwas as simple asmy sonwascomplex.Hewasaskingmenottoloseheart.Hewasaskingmetowalk—tolive—byfaithandnotbysight.Walkbyfaith,notbysight.

REXWAS still giddywhenwe arrived home. I was on a high aswell,going to the stereo to put on Beethoven’s Ninth Symphony, feeling its“OdetoJoy”wastheperfectcaptoourmorning.ItwasthemasterpieceBeethovenhadwrittentowardtheendofhislife,afterhe’dbecomedeaf,andRexwasinstantlycaptivated,listeningenthralledtotheworkhehadneverheardbefore.

I watchedmy son tapping his fingers on his legs, as though hewasplaying his keyboard, so, when the piece finished, I knew where hewantedtogo.Leavinghimathispiano,Iwentintothebedroom.Icouldhear himplaya fewnotes, then stop, thenplaya fewmore, then stopagain.Normallyhewouldjust letflywithhisownmelodiesandrhythmshecreated,buttodayhewasoddlytentative.Wonderingwhatwasgoingon,Iwalkedbackintothelivingroom.Rex’sfacehadafarawaylookashepickedoutnotesonthekeyboard.That’swhenIrealizedwhatthosetoneswerewhenstrungtogethertoformamelody.Igasped!Itwasn’tamelody of his own this time, a new improvisation. Instead, Rex waspickingoutthetuneto“OdetoJoy”rightthereinfrontofmyeyes.He’dheardit,andnowhewasplayingitback!Beethoven!Mythree-year-old,nonverbal,blindsonwasplayingBeethoven’s“OdetoJoy”onthepiano!There was mischief in my boy—I could see it in the slight smile thatplayedatthecornersofhismouthandthelightshininginhiseyesasthenotes fluttered hesitantly at first, but then rose triumphantly to fill theroom. It was in that timeless melody that had spanned almost twocenturies that I realized Iwasnothearing themasterBeethoven. Iwashearingthevoiceofalittleblindboysingingout.ItwasRex.Andittookmybreathaway,fillingmyheart,fillingmysoul,withhope.

Howcouldhedoit?Iaskedmyselfinthedaysfollowinghismiraculousmusicalfeat.ButthenIansweredmyownquestion—itdidn’tmatter.Theimportantthingwasthathewastellingmetobelieveinhim,tonotgiveup.Walkbyfaith,notbysight.

ItwasinthattimelessmelodythathadspannedalmosttwocenturiesthatI

realizedIwasnothearingthemasterBeethoven.Iwashearingthevoiceofalittleblindboysingingout.ItwasRex.Andittookmybreathaway,fillingmyheart,filling

mysoul,withhope.

Twodayslater,IhadRexinhishighchair,musicplayingonthestereotodistracthimfromthe feedingprocess,or the feeding“battle,”aswasusuallythecase.Iwasdivinginwithaspoonfulofpuréedsweetpotatoin

mostly unsuccessful attempts at landing a bit in his mouth, while heshookhisheadfromrighttoleftdodgingtheinvasivespoon.Iwaswornoutphysicallyfromthebattle,butmyheartwasstillsofullfromthe“OdetoJoy”memory,IthoughtI’dkeepatitawhilelonger.Today,Rexwassofast,withhisheadjerking,flatoutrefusingtoopenhismouth.Finally,asIsensedhewastiringfromtheprocesshimself,hisheadslowlystoppedshaking.Heseemedwary,onguard,lestItryasneak-swoopmovewiththespoon,whichwouldforcehimbackintoaction.Then,suddenly,tomysurprise,hebeganopeninghismouth.IthoughtIwasabouttowitnessafeedingmiracle,andthathewouldactuallytakeabiteoffoodvoluntarily.But just as I was going to push a bite home, I heard a guttural soundlurchingfrommyson’sthroat.Myspoonfrozeinmidair,asthethroaty“c-c-cu”soundcameout,withapopattheendtoformthewordcup.Myjawdropped,andsodidthespooninmyhand,splatteringhishighchairtraywiththeorangegoop.Iwasstunned,butthenrecoveredquicklytograbhismilkcupandhand it tohim.Thiswasnota feedingmiracle; itwasmuch more than a few free bites of food in his mouth. This was Rexbreakingthechainsofhissilence—thiswashisvoice.Hisvoice!

Overthenextfewweeks,Rexprovedhecouldsay“cup”wheneverhewanted to. This meant he was overcoming his speech apraxia bydemonstratinghecould formawordwhenhewanted to. It alsomeanthe’d foundanewpower incommunicatinghisneedsordesires. In thiscase,heused it toavoidbeing forced toeat. Just say themagicword“cup,”andyouwillbeinstantlydrinkinginstead.Ihavetosayhebecamealittlecocky,armedwiththepowerofhisoneword.Youcouldseeit intheglintinhiseye,ashewouldinstantlythrowouthiscommand,“Cup!”And lo and behold, he had instantly halted that menacing army ofspoons,loadedwithpuréedpeasorcarrots.

Ifoundhisanticsamusing.Evenifhewasfoilingmylaboredattemptstofeedhim, Iknewhowimportant itwastogivehimasenseofcontrolthroughtheuseoflanguage.

Clever boy that he clearly was, he soon realized there was anotherwordthatwaspartof“cup,”whichhecouldusetoavoidbeingforcedtowalk.Itwas“up,”meaning,“Pickmeup,Mommy.”Rex’sfirsttwowordsbecame the tools that allowed him to escape what he must have

perceivedtobetorture—eatingandwalking!

SeveralweekspassedwithRexflauntinghisnewpower,butnootherverbalcommunicationemerged.Thismademewonderjusthowmuchheunderstoodofthespokenlanguage.Hewasalmostthreeandahalf,andhe’dneveransweredaquestion.Heonlyusedhis twowordswhenhewanted to avoid a negative consequence. His speech therapist didn’treallyknowwhattothink.Shewasthrilledwithhisabilitytovoicewords,but instinctively, I think she had been hoping for more. At the BlindChildren’sCenter, theconcernwas focusedonhisextremesensitivitiesand on his new use of language to escape attempts to push hisdevelopment forward inothercriticalareas.ThedoctorsaidRexhadtoeatorhewouldendupwithafeedingtubeinhisstomach.Thatmeanthewould have another tube in his body along with the tube draining hisbrain.Hecouldn’tliveforeveroffthescantbitesofpuréeandCarnationInstantBreakfastthathadlongbeenthemainstayofhisdiet.Irefusedtoevenconsideritforthetimebeing.I’djustspendmoretimetoworkmorefoodintohismouth.Walkbyfaith,notbysight.

In the meantime, there was another concern that made me feel thepassage of time evenmore acutely than his extreme feeding issues—thoseinfernalspaghettilegs.Atthreeandahalf,hewasgettingheavierbytheday,tooheavytocarryaround,andhewasoutgrowinghisstroller.Whydidhekeepcollapsinghislegs?Hehadtheabilitytowalk,hehadshown us all—his physical therapist, the staff at the Blind Children’sCenter,andme—thathecould,andyethewouldn’t,especiallynowthathehadthewordup inhis “controlanddefend”arsenal.Maybe Ihadn’tbeentoughenoughthesepastfewweeks,caughtupasI’dbeeninthejoyofhearinghimuselanguage,histwograndwords.Thescaryrealityofwhatwewerefacingstruck inhisphysical therapysession,whenhistherapistTampulledout a catalogueand showedmesome lightweightwheelchairs.“Hedoesn’tneedanythingheavy-duty,”shesaid,as if thatmight soften the blow, “but he is going to need something soon.” Herwords feltas ifshe’ddousedmewithcoldwater,and Icouldn’tget thethoughtoutofmymindallweek.

Walkbyfaith,notbysight.Icouldhearthewordsatnightandclungtotheirpromisedhopeduringtheday,becauseIfeltlettinggowouldbethe

end forus.Andyetaquestionbegan toarise inmymind.Howdoyouhave hope without getting lost in it? Without leaving yourself open toletdownoreventualheartbreak?Iwasn’tsureIcouldfindtheanswerbymyself.

ItwasFridayafternoon,theendingtowhathadbeenaverylongweek.Arrivinghomeaftertherapy,Ineededsomeair.IwashopingRexwouldbeup for awalk down to thebeach. Iwanted to catch the sun settingover the water, such a beautiful sight these days. The golden hues,slightlytingedwithred,reflectingofftheoceanandframingthehorizon,hadneverfailedtoinspiremewiththatsenseofhopeIsoneededrightnow.Weweredeeply intoautumn, theaircrispandclear,but thedayswerebecomingshorter.InspiteoftheunmatchedbeautyofaNovemberday,itwasaperiodoftheyearthatnormallydidn’tsetwellwithme,fillingmewithangst,merelybecausedaylightwasgivingwayprogressivelytonighttime.Darknessstealinglight.Itwasanirrationalfear,Iknew,butstilleversorealwhenaddedtotherealityIwaslivingwithmyson.Butthisafternoon Iwas hopeful that the life-affirming beauty ofCreationwouldprove hope is stronger than fear. I blocked out images of lightweightwheelchairs, feeding tubes,andanyotherartificial support forRexas Itold him how fun it would be towalk down to the beach so “we couldlistentothewavesgoingcrash.”Normally,whenIsaidtheword“crash,”Iwouldpretendtothrowhimdown,agameheloved.AsIdidsonow,helaughedinspiteoftheend-of-daytiredness,soIknewitwasago.Our“walks” to the beach consisted of me coaxing him to walk a shortdistanceandthengivingintohiscriesof“up,”whichwouldnormallygetlouderwitheachstephewasforcedtotake.ThenIwouldcarryhimtherestoftheway.

But today I did thingsa little differently. I beganby carryinghim, andthenstoppedmidway to thebeachalong theslopingentrancedrivewaytoourcondominium. Insteadofheadingdirectly towardthesand,whichwouldtakeusdowntheslopingdriveway,forsomereasonIlookedintheother direction.Had it been a bird calling out from over there that haddrawnmy attention? The sound of a car behind us?Or just the silentwhisperofabriskautumnday? I lookedup to the topof thedriveway.There was an outdoor parking lot, the tarred surface buckling and

cracking inseveralplaces,begging for repair.Therewerealsoplantersbrimmingwithpinkandredgeraniumsskirtingtheroad,addingspotsofcoloratthebaseofthepredictablepalmtrees.Buttoday,allIreallysawwas the driveway itself, its slope, and how steep it becameat the top.Suddenly,Ihadanidea.IcarriedRexallthewayup,thenquicklysethimdownontothetarredpavement,facinghimdowntheslope.Hislegswererigidashestoodthere,stiffasrods,whichwasnormallythewaytheygotrightbefore theywent “spaghetti.”Going fromoneextreme to theother—hypertonictohypotonicmush.Beforehislegshadachancetobuckle,Igavehimaslightnudgeonhisbackandsaid,“Go,Rex,go!”Ijumpedinfront of him, poised to catch the inevitable fall, as he took the firstfalteringstepsIhadforcedhiminto.Butheheldhimselfupastheslopemadehislegsmovefaster.Gainingmomentum,hebeganwalkingfasterthanheeverhad,whileIbackedupinfrontofhim,guidinghimwithmyvoice, egging him on. “Rex iswalking faster and faster! You can do it,Rex!”

Then, as though a Divine hand touched my son, I felt somethinginfinitelyhighersupersedemyowneffortsasasortofecstasysweptoverhim. Gone were spaghetti legs. Instead, his legs were infused withvibrancy and strength as he walked faster and faster, until he waswalkingtoofastforhisownlegs.Buthedidn’tstop;hecouldn’t!Andhedidn’tpitchface-firstintomyreadyarmseither.Instead,withhismotorallrevvedup,hebeganrunning!Mychildbegantorun!Hisfaceregistereddisbelief,havingneverdoneanythingremotelylikethisbefore,butheranfaster still, veering right, then left. He tottered, his arms flailing like anoviceskier.Yethehadno fear,andhisbalanceheldashe ran fasterand faster.His facewasalightwith surpriseatwhathewasdoing, thediscoveryofwhathecoulddo,andIgapedinawemyself.Hisdisbeliefgaveway tooverwhelming joy in the thrill of intensemovements in hislittlebody,thebodythathadbeenbarelymobileforsolong.

“That’srunning,Rex!”Ishouted.“Isn’titfun?”Ashebrokethechainsofhis body, his legs spinning full speed, he began laughing as he ran. Itwas infectious, a laugh straight from his belly, its resonance testifying,likenothingelsecould, thatGodwasonhighandallwasrightwith theworld.

Ashebrokethechainsofhisbody,hislegsspinning

fullspeed,hebeganlaughingasheran.Itwasinfectious,alaughstraightfromhisbelly,itsresonancetestifying,likenothingelsecould,thatGodwasonhighandallwasrightwiththeworld.

ThatnightIlayinbedfloatingonmyownhigh,fullofthejoyofthedayandfullofpeace.Rexhadgonetobedeasilyandwassleepingsoundly,his body exhausted. This time it was the peaceful exhaustion of goodphysicalexertion.IfIcouldetchapictureinmymindthatwouldendurethroughouteternity,itwouldbeRex’sarrivalatthebottomofourdrivewaythatday,hislookthatofanOlympicrunnerbreakingthetapeatthefinishline to win the gold. It had been a perfect moment. As I lay in bed, Iacknowledgedhowfewmomentsinlifetouchustothecoreofourverybeing.Moments thatmake the rest of theworld fade into nothingness.Momentswhenthepast isadistantmemoryandthefutureremainsfarawayandirrelevant.It’sinthosemomentsthatyouknowwhatyouneedto know and you forget what should be forgotten. You have a briefglimpseofeternity,as time issuspendedas thoughGod is lookingyoustraight in theeye,withasmile that leavesyouclear in theknowledgethatallisrightandgoodandisasitshouldbe.

In the days that followed Rex’s miraculous run, he was like a childwho’dbeengivenabiteofsugar.Hewantedmore.Nowheknewwhatitfeltliketoreallymove,flyingthroughspaceforthefirsttimeonhisown,and the great way it made his body feel, all that adrenaline coursingthrough him. The problem was that his brain still had some defectivemotorwiringandconditioningtoovercome.That’swheremusicsteppedin.Everytimeheappearedtobefrozenonhislegsorreadytobuckleinspite of himself, I (or his teachers) would begin to sing a catchy tune.That was our “control switch” that allowed him to bypass conditionedresponse,andhewouldbegin towalkor run, fueledbyhismemoryofwhat fastmovement felt like. Iprayed thatover time thismusical “jumpstart” would help my son’s brain create new conditioning in his motorresponses.Interestingly,Rexseemedmoreateaserunningthanwalking,almost as though fast movement took fewer thought processes, less

control.I’vesinceequateditwiththegameoftennis;it’seasiertohittheball hard than it is to hit slow finesse shots. But then, too, speed ofmovement gave him positive sensations that were clearly powerfulmotivators.

As Rex was finding increased freedom in his body movements, hispianomusic became infusedwith faster tempos, bolder tapestries, andnew,more vibrantmelodies. Itwasduring theChristmas season in histhirdyearthatIcametounderstandthatRex’sduplicationofBeethoven’s“OdetoJoy”wasdefinitelynotasingularphenomenon,amusicalmiraclenever to be repeated. Instead he began filling our living roomwith notonebutseveralsongsoftheseason,suchas“Hark!TheHeraldAngelsSing,” “Joy to theWorld,” or his seeming favorite, “The LittleDrummerBoy.” Anchoring his left hand on a single note, marking rhythms, hecreatedmelodieswithhisrighthand.Asheplayed“TheLittleDrummerBoy,”hewouldhumalongtothemelody,hypnotized,withafarawaylookinhiseyes,almostasthoughheweregazingdownontheSaviorchildinabedofhay.How Iwishedhishummingwouldsomehowmiraculouslybecomewords so he could sing alongwith the piano.Because for us,Christmaswasn’tfrostedcookiesorothersugarytreats.Itwasn’tbrightlycoloredChristmasdecorationsorfindingtheperfecttree.Norwasittoys,most of which were meaningless to Rex. It wasn’t even Santa Claus.Christmaswasmusic.

I witnessed this on the most festive day of the year at the BlindChildren’s Center, the day when the LAPD arrives in force, its sirenssounding a salute. The police chief himself came bearing gifts for thestudents,andtheentryparadeprovidedasortofVIPescortfortheguestofhonor,jollyoldSaintNick.AspolicechiefBernardParksspoketothedirectorsoftheCenter,therealcelebritywasbeingmobbedbythekids.TheteacherswereallowingonechildatatimetositonSanta’slap,anditwasalmostRex’sturn.AlittlegirlnamedMaria,justamontholderthanRex,who’dbeeninhisclassfromthefirstdaywecame,hadjustjumpedontoSanta’samplelap.

“Hi,Santa.Howareyou?”

Maria’smom,Claudia,raisedhercameratotakeasouvenirshot,while

Maria began reciting her Christmas list, not even waiting for Santa torespond. “I’d like a CD player, a Raffi CD, and a new doll and someclothesforher.”

Claudia smiled at me and said, “Rex is so cute. Maria always talksabouthislaugh.Shesaysit’ssohappy,itmakesherlaughtoo.”

“That’snice,”Isaid,distracted,sincewhatIwasreallyhearingwastheverbalonslaughtMariawasdeliveringtoanamusedSantaClaus.

“Doyoureallygoallovertheworldinabigsleigh,Santa?Mysisterleftawholebagofcookies foryou lastyear,but thedogate them instead.Wouldyoulikesomemilkthisyear?”

ClaudialookedatmeasIgazedintentlyatherdaughter.Shelaughed.“IthinkMariajustlovestohearherownvoice,youknow,likealotofblindchildren.Butaschattyassheis,sometimesIwishshe’dstoptalking.”

Iforcedasmile,thinkingofothermomsinotherplacesIenviedso.I’dknownClaudiasinceRexbeganschool there threeyearsbefore—we’dboth been in the sameboat then, devastated and grief stricken by ourchildren’s blindness, trying our best just to cope. Back then we’d hadsimilar battles to fight, tough emotions to work through, but now, onlythree years later, our respective kids seemed to be living in differentworlds. In spite of all of Rex’s recent breakthroughs, I couldn’t helpfeelingadeep, longing tugatmyheartas IwatchedClaudiasnaponelastpictureofherdaughtertalkingSanta’searoff.ItwasChristmas,andChristmaswastheseasonofwishes.

AsRextookhisplaceonthejollyman’slap,Santa’sjigglingbellyandhearty“Ho,ho,ho!”madeRexlaugh.Otherwise,mysonremainedsilent.WhenSantaaskedhimwhathewantedforChristmas,hegiggledatthedeepresonanceofhisvoice,whichwasalmostmusical,butsaidnothing.Santa Claus didn’t mean anything to him, and he didn’t have his ownwishlist.ButIdid.AsRexbeganjinglingSanta’sbells,Ijumpedstraightto the topof the list, asking in silent prayer. Iwanteda trueChristmasmiracle and nothing less than the big one. Let Rex answer Santa’squestion.Yet,notwantingtoseemungratefulinmyinnermostdesires,I

hastily added my silent thanks. Rex’s piano music is amazing,miraculous.ThankYoufor fillingourChristmaswith it. Ipaused, feelingreal awe at my son’s recent piano feats, certainly the hand of God atwork.YetIcouldn’tholdbackthetruthinmyheart.“ButwhatIreallywantistotalktomyson!”I’dblurteditoutloudthistime,andFatherChristmaslookedupfromRextomeandgavemeabenevolentsmile.

ButFatherChristmas isn’tFatherGod,and theholiday seasoncameand went without that prayer being answered. December turned toJanuary, then February, and my moods mirrored the increasingly grayandcloudyskies.IbegantowondermoreandmorehowmuchlanguageRexevenunderstood,sinceheneveransweredquestions.Heusedhistwo words when he wanted but never in response to a question. Forexample, at feeding time if I asked him what he wanted, he wouldmaintainhisusualsilence.ItwasonlywhenIwouldtrytoputfoodinhismouththathewouldsay,“Cup.”

Washiscommunicationendingafterbarelybeginning?His teacheratthe Blind Children’s Center was becoming increasingly concerned thiswas thecase.At least thatwas the feeling I gotwhenshegavehimadailychoiceofactivities,only tobemetwithablankresponse.Andhisspeech therapistwasn’tmakinganyprogresseither. I struggled toholdon toGod’swordsduring thesemonths in spite of the evidence to thecontrary.Walkbyfaith,notbysight.ButitwasarealbattlebecauseIhadprayed desperately for a Christmas miracle that hadn’t come. I didn’tknowthatGodmightjustbeplanningondeliveringonadifferentholidayaltogether.InHistime,notmine.

Spring was now upon us, and Easter was days away. The “BeepingEasterEggHunt” hadbeena funevent at theBlindChildren’sCenter,even forRex,whowas often overwhelmedby the noise at parties.HehadgottenakickoutofthemusicalqualityoftheEastereggs.ButnowIwas happy to have a week of vacation from school and all of histherapies. That way we could disconnect from the expectations thatswirledaroundusandjust“be”forafewdays.That’stheonlythingIwasprayingforduringthisnewholidayweek.

It was early morning, and I had just gotten Rex out of bed. He was

wearinghisblue-graypajamasadornedwith littlesailingboatsandwasstillgroggyas Icarriedhimtohispiano.Playingthepianowasthefirstthinghewantedtodoeverymorning,andIknewanysleepinesswouldbegone thesecondhis fingershit thekeys.Crossing the living room, Idescribed theworld and ourmovements to him, as youwould for anyblind child. “We’re passing the big fluffy chair now, Rex, and it’s abeautifulday.Thesunisshiningbright.”

“Rex, sweetie, what would you like to do this morning?” I asked myusualquestion,againexpectingnothingback.Iwasbeginningtosethimdown,evenasIwasaskingthequestion,whenallofasudden,Inoticedhisfacewasallscrunchedup.Withhislipspastedtogether,heseemedinthemidstofsomemonumentaleffort.Ipulledhimbackuptomyeyelevel,asking,“Whatisit,Rex?Whatisit,honey?”

After twistinghis face thiswayand that, his lips finally poppedopen,andlikeafirecrackerexploding,hesaid,“Pp-pp-aaa-ooo!”

I gaped! It was an important moment, I knew that, but I didn’tunderstand the word, and I desperately needed to get it. “What is it,Rex?”Iaskedagain,practicallybegging.

He repeated the sameextreme effort, tryingwith hiswhole body thistime,hisheaddippinglow,beforesnappingbackupwithanotherpoppingsound.Thistimeitwasalittleclearer.“PPPaaaano!”Hisfacelitupfromhis own sound, like he’d just been struck by a bolt of electricity. He’ddone it this time, and he knew it! He balled his hands into tiny fists,knocking them together, and repeating with each knock, “Pano! Pano!Pano!”

ItwasinthatinstantthatIgotit,andIdidn’tknowwhethertolaughorcry, so I did a little of both. I danced a jig, twirlingmy son round andround,shouting,“Piano,piano!Yes,mysweetheart.That’sit!Youwanttoplayyourpiano!”Whatacurioussightwemusthavebeen—alittleblindboy knocking his hands together in excitement and his crazedmother,tearsstreamingdownhercheeks,whoopingforjoyanddancingajig,allbecauseofonelittleword.

Onelittleword,piano—itwastheanswer tomyquestion.Whatwouldyouliketodo?He’dclearlyunderstoodme.Butmorethanthat,itwastheanswer to my prayers. Because this word “piano,” which tapped in sodirectly to Rex’s musical soul, had the power to break through anyremaining wall of doubt and open up the floodgates of lots of words.Language.UnlikewhenRex said “cup”or “up,” uttered in isolationanddrivenbyavoidance,“piano”wasabridgetomore.Almost immediately,hebegantoputwordstogetherintoshortsentences,whichweremusicalatfirst.Thesingsongycadencesseemedtomakelanguageeasier,moreaccessibletohisbrain.Itwasclearthatmusic,withitsorderandrhythm,had opened up a big door forRex.Only timewould revealwhere thatdoorwouldlead.

Walkbyfaith,notbysight.

CHAPTERSEVEN

TheRippleEffectIfyoudon’tlikesomething,changeit;ifyoucan’tchangeit,

changethewayyouthinkaboutit.

—MaryEngelbreit,artistandentrepreneur

Rexhadalwayslovedthewater,asbefittedanychildwhogrewupnearthebeach.Pools,theocean,hisbath,heloveditall.He’donlybeentenmonths oldwhen I gotmy courage up, blew sharply into his face, anddunked his head under the water in a pool. Since then, he’d beenfearlessinthepool;usinghisinnertubeforbuoyancy,he’dflapandkickhiswayfromtheshallowtothedeependofthepool.

At the beach, I would hold him, as rippling baby waves hit his legs,gently massaging them. The rhythm and movement of ocean wavesbecameagamethatsenthimintopeelsoflaughter.Whenhe’dfeelthemhithim fromthe front, I’dsay, “Thewavesroll into theshore.”Then,astheyflowedathimfrombehind,I’dsay,“Andthentheygetsuckedbackouttosea!”

And then, there was his bath. It was alternately soothing, soakingsensitivityoutofthatlittlebody,andexhilarating.AttimesRexwouldflaphishands intoawild splashing frenzy, soaking the floorandme,alongwith his own face and head.He didn’t use the toys I’d put in the bathmuch,normallypluckingthemfromthewaterandthendroppingthemoutofthetubtogetthemoutofhisspace.Thewateritselfwashispreferredplaything.

Tonightwewereplayinganewgameinthebath.Itookalargemarble(aboutan inch indiameter) anddropped it into thewater fromaboutafootup.Therewasasharpplopasithitthesurface,endingwithathudas it struck the bottom of the tub. He clapped at theplop-thudsound,giggling. “More, Mommy, more,” he said, already into the game. Iretrieved themarble,dropped itoncemore,and thenput themarble in

hishandtoshowhimhowhecouldmakethesoundhimself.

“Justholdthemarblewayuphigh.”Heraisedhishandalittle,butnothigh enough. “Your hand’s gotta be higher, higher, higher, sweetie,” Isaid,andheextendedhishandasfarasitcouldreachthistime.“Thenjustdropitwithaplopandathud!”

Hedroppedit,thenfounditinthebathanddroppeditagain,overandover, lovingtheplop-thudsoundeffects.AsIwatchedthewaterripplingoutfromthemarble’scontactpoint,Ithoughtbacktomychildhoodhomeand our old square swimming pool, where I used to sit with my ownmother,tossingstonesupintotheair.Wewantedtoseewhocouldmakethebiggestsplashastheyplummeteddown.Waterripplingoutfromthecontactpoint.IhadbeguntowitnessasimilarprocessunfoldinginRex’slife, as themiracles that had touchedhim resonated outward, touchingothersaswell.

Enteringintomyson’sfifthandfinalyearattheBlindChildren’sCenter,his language developmentwasmoving forward,with his voice echoingthrough those hallways with increasing frequency. He was a childbreaking out of the prison of his body, with his personality opening upalongwithhisvoice.Hestillhadhissensitivities,tobesure,butthroughmusic,thebeginningsoflanguage,andincreasedfreedomofmovement,he’dgottenacriticalfootholdintheworld.AsRexcontinuedtopushbackthebordersofhisexistence,Iwatchedhimhelpothersdothesamethingwith their own lives, gaining respite from their daily burdens. Waterrippling from the contact point. It was there at his preschool that I firstbegantowitnessthateffect.

Rexhadasoft,littlevoicewhencomparedtootherloudfour-year-olds,butitwasbrightandcheerful.Itwasalsomusicaltotheear,madeupofsingsongy cadences, with a bit of echolalia (repeating phrases ratherthananswering them)andscriptedspeechpatterns.Heoften repeatedconversationalsequencesthesameway,liketherewasonlyonewayofcommunicating.Ifonechangedthephrasing,hewasatalossastowhattodo.Forexample,thequestion,“Rex,howareyoutoday?”couldn’tbechanged to “Rex, are you doing okay today?” The rigidity in his brainwasn’tallowingthatyet.Heseemedtoneedrhythmiccadences,treating

wordsinasentenceasthoughtheywerebeatsinameasure,inordertocomprehendthespokenword.Askhim,“Howareyoutoday,Rex?”inamonotone, and you’d likely get a blank look. But repeat the samequestionwitheachwordhighlyintonated,andhe’dpromptlyanswer,“I’mfine, and how are you today?” Rex needed routine and order tomakesenseof things.Healsoneededmusic theway therestofusneedair.Breatheinmusic,andbreatheoutcomprehension.

FortunatelyhisnewteacherattheCentergraspedthatcriticallink,andsheprovedtobeagodsend.NotonlywasshecreativeandcapableofthinkingoutoftheboxinordertomakeRex’scurriculummoreeffectivebymakingit“moremusical,”butshelovedtosing.Itwasn’tkids’songsthat interestedher,whichwasgood,becausethosesongsonlywentsofarwithRex.Shelikedpopularmusic,ormaybeIshouldsaymusicthatwaspopular in the ’70s.Thatseemed tobeherera.Sowhenshesawhowmyspecialboycouldbemotivated throughmusic,andunderstoodhiseasygraspofherpreferredgenre,sheplungedhimintotheworldof1970svocals!

Icametopickhimupattheendofclassonedaytofindhimplayingthe’70sclassic “LeanonMe”onhisclassroomkeyboard.Thenextdayhewas singing it: “Lean on me, and you’ll feel strong . . . if you needsomebody,youcanleanonme.”Amonglaughter,hisclassmateswouldtake turns leaning on him to see how strong hewas.Music becamealearning tool forRexand for thosearoundhim.Hissoftspeakingvoicegained clarity and strength when he sang, and his ability tomemorizecomplicatedlyricswasalmostasastonishingashispiano-playingability.Soon he was also singing “Leaving on a Jet Plane,” “CaliforniaDreaming,”andhisfavorite,theSimonandGarfunkelhit“Feelin’Groovy.”

Itbecameacommonsighttoseeadelightedlittleboytrompingdownthehallwayoroutontheplaygroundswingsinging,“Slowdown,You’removin’toofast...I’vegottamakethemorninglast...I’mkickin’downthecobblestones...Lookingforfunand...FEELIN’GROOVY!”

Inevitably, someonewould be watching, captivated, whether it was ateacher,theparentofanotherchild,oranoutsidevisitortotheCenter.Itwas as if they wanted some of what Rex had, some of that magical

something that seemed to override limits, that seemed to take himoutside his disability. As though Rex had a magnetic pull, anyonewatching would normally struggle to tear himself from the sight,reluctantlyleavingthechild,thejoy,andthesong.

THE EFFECT my child began having on people wasn’t limited to theCenter but began rippling even farther. Rex was four and a half andneededhisyearlybloodtestatChildren’sHospitaltocheckhisendocrinestatus.Childrenwith septo-opticdysplasiaareoftenbesetbyproblemswith their endocrine system—everything from growth issues(necessitating daily growth hormone shots) to hypothalamus problems,resulting insuch thingsasan inability to regulatebody temperature. I’devenreadanarticlewrittenbyamotherwhohadbeendevastatedbythesudden death of her five-year-old son with septo-optic dysplasia whenhe’dspikedafeverof108degrees!Thenthereweretheadrenalglandsand the thyroid, which were also at risk, not to mention the threat ofprematurepuberty(meaningreallypremature,likefiveyearsold!),orthepossibilityofnotgoingintopubertyatall(necessitatingshotsinordertocontinuephysicalandmentaldevelopment).Thankfully,Rexdidn’thaveanymajorendocrinedysfunctionyet!Buthecontinuedtobeatrisk,andhis endocrinologist said he could develop more serious issues at anytime.Again, the researchwas too recent toknowdefinitively,but that’swhyhisconditionneededtobemonitored.

Myboyoftenhadasort-ofmusicalgaitwhenhemoved,whichmatchedthebouncy tone in his voice. Thatwas thewayhewasmovingaswereachedthefrontofthehospital.Asforme,Iwasrigid,asIalwayswaswhen I came to Children’s Hospital, as though that would help keepthings in control in theplace thathad thrownour livessoutterlyoutofcontrol.Hospitals represent thestuffofamother’snightmares.As ifoncue,mypulsebegan to race themomentwepassed through the frontdoors.Therehadbeen toomuchpainhere,and itwas thatmemoryofsufferingand trauma that invadedmywholebeingasweheadeddownthe long, stark entrance hallway. Rex normally became extremelyagitatedaswell,oncetheloud,painfulsoundsofthisplacehithim,withhisownmemoriesofbeingrestrainedinorderforsomeonetopokeorjabhimorotherwiseinflict“torture.”Iwaspreparedfortheworst.

Butthistimeadifferentscenewastounfold,onefilledwithhealing.Weweresittinginthelaboratorywaitingroom,waitingforthenursetocallinRex.Theroomwasfullofpeopledeepintotheirownthoughts,filledwiththeirownpain.ItwasalwaysthesameatChildren’sHospital,wherethepatientswere the innocents.Everyoneseemed tobe reallyhurting: thekids,theparents,andeventhestaff.

Nobody in thatwaiting roomcomprehendedwhat theyweresuddenlywitnessing,leastofallme.Abeautifullittleboy,withsilkenblondhair,hadstoodupfromhisseatand,oblivioustoanyone’sworries,begantosing.Rex!Hisvoicewaspureandsweet, likehis face,and theclarityof thetonesbegandrawingthepeopleintheroomoutofthemselves.Iwatchedfurrowedbrowssoftenandclenchedjawsbroadeninwonder.Theycouldseehewasblind,indeeditwasimpossibletomissbythewayhe’dstoodupwithhishandsfeelingforsupportandbythewayhestoodtherewithprecariousbalance, hiseyes seeming to focusonlyon theunseen.Sothespectatorswereallthemorestupefiedastheywitnessedsomethingakin to truesightwhenhisvoicesangout,angelicand inperfectpitch,“God issogood.He’ssogood tome.”Ashe finished, thewhole roombroke intoapplause,amazedandspontaneous,whileRexbeamedandclappedforhimself,ashesolovedtodo,pronouncing,“‘GodIsSoGood’is a beautiful song!” When he heard more clapping, he repeated foremphasis,“‘GodIsSoGood’isabeautifulsong!”

IknewfromthereactionintheroomthatIdidn’tneedtotellRexquietly,“Sweetie,weneedtowaituntilwegettothecartosing.”Ialsoknewhewasinthemoodtosing,whichmeanthe’dinevitablylaunchintoanothersong. Not wanting to impose religion on the room in the form of ourchurchsongs,Iwhispered“Feelin’Groovy”asasuggestion.Butnotthistime,notinthisplace.Rexclearlyhadideasofhisown,andapparentlyitwasn’t a 1970s carefree kind of day. Ignoring me, he announceddecisively, like he was a singer on a stage, “This Little Light ofMine.”Withoutamoment’shesitation,hebroke into thesweetlymovingsong,whichwasoneofhisSundayschoolfavorites.Ashefinishedtherefrain,“Letitshine,Letitshine,Letitshine,”theapplausewasrenewed,evenmorevigorous this time, frompatientsandstaffalike,whileRexsmiledbroadly,lovingit.Iglancedaroundtheroomtoseethemostastonishing

mixtureof smiling facesandmoisteyesashis captiveaudienceshooktheirheadsinamazementatthisbeautifulandunexpectedscene.

And with that I knew I’d received the unexpected myself—anunexpectedhealing.Myoldghostswerefinallybeinglaidtorest,asmyheart that had been battered and bruised in this hospital, on somanyoccasions,nowsoaredonthelightofRex’ssmile.

Letitshine,Rex!

THERE WAS going to be a special musical event held at the BlindChildren’sCenteracoupleofmonthsbeforegraduationdayinJune.AllIknewwasthatitwasaconcertforkidsonly,andIassumedthatwhateveritwas,Rexwouldenjoyit.Sinceparentshadnotbeeninvited,IdroppedRexoffinhisclassroomandthenlefttorunerrands.Butoutofcuriosity,the unavoidable curiosity one experiences when being specificallyexcluded,IreturnedtotheCentertoseeifIcould“accidentally”catchtheendofthe“kidsonly”concert.AsIenteredthelobby,Icouldhearstrainsof guitar music coming through the closed door to the reception roomwhere theconcertwasgoingon. Itsounded likeaBarneysong,but I’dneverheardBarneysungandstrummedlikethatbefore. Itwassmoothand jazzy, inapop jazzsortofway.Suddenly, like thesongsRexhadbeensingingoflate,thesinger’svoicesnappedmebackto1980andtheunmistakablevoiceofKennyRankin.Allmycollegefriendshadlistenedto his light, airy pop jazz,which had captured themoodof that era soperfectly.Backthen, ithadbeen“datemusic.”But today,KennyRankinwas using the power of his voice, hismusic, in a differentway.Not towarmtheheartsofyounglovers,buttoputsmilesonthefacesofblindpreschoolers.

Isattherethroughanothersong,wishingI’dbeeninvitedalongwiththekids, when the door opened. The concert had ended, and as the kidsstarted heading back to their classrooms, the executive director of theCenter sawmeandbeckoned forme to come into the “concert” room.Shewaseffusive. “Cathleen, I toldKennyaboutRex’smusic,andhe’dliketohearhimplaysomething.Wouldthatbeokay?”

Myson,playingforKennyRankin! Itwouldcertainlybeokaywithme,

butRexmight be disturbed by the change of routine, routine being soimportant tohissenseofbalance. Itwas recess timenow,notstaying-inside-with-Kenny-Rankin time. Predictably, he began whining as Idetained him at the door, while his classmates headed outside. Kennysawhimthenandrushedover.

“Hi, pal,” he said. “My name is Kenny, and I hear you’re a littlemusician.”

Rexdidn’tanswer,soIdid.“ThisisRex.”

“Well it’snice tomeetyou,Rex,”Kennysaid. “Youwant toplaysomepiano forme?”Rex’s facewasblank.Kenny ledhimover tohisguitar,whichwaspositionedonachair.HetookRex’shandandplaceditontheguitarstrings.“Howabouttheguitar?Youwanttoplaytheguitar,Rex?”

Pulling his hands away immediately, still defensive, Rex said, “Don’twanttoplaytheguitar!”

“Okay,wellhowabout if Iplaytheguitar?”Kennyasked,strummingafew chords. Rex relaxed instantly, as though he’d been tapped by amagicalwand,alltensionseemingtomeltfromhisbodyintotherichnessof the chords. Iwas kneeling down to be eye levelwithmy sonas hestoodleaningagainstme,whenKennybeganstrummingafamiliarsong.ItwashisownversionoftheBeatles’classic“Blackbird,”withthewordsfrom the past fusing into the present—haunting and prophetic. I felt alumpforminginmythroatasRexstoodspellboundlisteningtowordsthatcouldhavebeenhisown:“...takethesebrokenwingsandlearntofly.”

The image of the blackbird crying out into the depths of darkness inlonely desperation hit me in the heart with a longing so intense I hadforgottenthewholepointofthisencounterhadinitiallybeenRexplayingthepiano.ButRexhadn’t forgotten,andusinghisnamein thirdpersonashealwaysdid,hesaid,“Rexwantstoplaythepiano.”

“Greatpallet’shearit!”Kennysaid.

IledRextothepiano.Hisfingersstruggledtodepressthekeysofthis

acoustic instrument, since he was used to the electronic ease of hispianokeyboardathome.Atfirsthewasn’tgettinganysound,butthenhestruckharderwithhis fingers,determined.Notesat last!Heknewwhathehadtodonowtomakethenotes,and theybeganfilling theroom. Iimmediatelyrecognizedwhathewasplaying,asdideveryoneelseintheroom—Kenny, the executive director, and some administrative staffmemberswho’dcomeinasthefirstfewnoteshadbeenstruck.Itwastheultimate song of God’s transforming grace, “Amazing Grace.” It didn’tmatterthathewasmissinganotehereandthereonthosestubbornkeysashissweetvibratovoicehitthefinal:

Ioncewaslost,butnowI’mfound,Wasblind,butnowIsee.

IlookedtoseeKennyutterlyspeechless,hiseyesbrimmingwithtears.ThisbrilliantmusicianhadcometosharehisgiftswiththechildrenattheCenter,andasIwatchedhimrubhiseyeswithahand,IknewRexhadgivenhimaspecialgiftback.WasKenny’ssong likemy lifelongprayerfor my son? I didn’t know, but what I was sure of was that Rex wasansweringthatprayerthroughgrace,ashadGodwhenHesentHisSon.

INTHEweeksleadingtoRex’sgraduationday,Ihadbecomemoreandmore emotional. This was more than preschool graduation; it wasgraduationfromtheBlindChildren’sCenter.Sinceallparentsgetchokedup and nostalgicwhen their children reach bigmilestones, I knew thatpartofthereasonformyincreasinglyfrequentcryingspellswasanormalreactionto“mybaby”growingup,butIalsoknewthatmyemotionsranmuchdeeper.

The big day came and there was a buzz in the air at the Center.Emotional parents, excited kids donning blue caps and gowns, andmedia cameras rolling to capture the event for the evening newscasts.The mayor was even there to present the diplomas. Colored balloonsfloatedintheair,attachedhereandthere,withrowsoftulipsadorningthestage.AsIsat inmyfront-rowseat,myolderbrother,Alan,poisedwithhiscamcorderandtripodoff totheright tocapturetheevent, Iknewallthe fanfarewas tosay toagroupofblind fiveyearolds, “Youmade it!Nowyou’re ready for the realworld.”Thatwasaprettybigmessage. I

alsoknewhowclosewe’dcometonotmakingit,howclosewe’dcometobeingbroken in this place. I shudderedbriefly at the thought. Likeonetotteringontheedgeofacliff,itwouldhavebeensoeasyjusttotoppleover.Rex’slifemighthaveendedbeforeithadevenbegun.Butithadn’t,andherewewere!ThismorningIhadwonderedaboutsomanydetailssurroundingthisday:Wouldthesunbetoobright,botheringRex’seyes?Would theceremonybe toonoisy?Howaboutmicrophonesscreechinginhisears?Wouldtheybeabletogethisgraduationcaponhissensitivehead?Thesewereissuesthatstillplaguedus,stillneededtobeworkedwith,butsuddenlynoneof itmattered.Wewerehere!Thatwasall thatmattered.WithmyheartpumpedfullofthatamazinggraceRexhadsungabout,theceremonybegan.

MusicplayedasalloftheCenter’sstudentbodymarchedoutwiththeirrespectiveteachers.Firstcametheparadeofbabies,withtheirteachersandmothers, theMommyandMeclasswherewe’dbegun, thenonupthroughtheyears.Therewasathree-year-oldusinghiscanetoguidehisclass, othersholding thehandof a teacher.Thencame thegraduates,wearingcapsandgownsofroyalblue.I’dneverseengraduationgownsonpreschoolersbefore,butsomehowitseemedfittinghere,andtheyalllookedsoproud in them.Rex’sclasscame last,andhebroughtup therear,withhisheadbobbingeversoslightlytothebeatofthemusic,thetasselonhiscapjigglingashemoved.

Arrangedbyclass,thestudentssatdownonwoodenblocksskirtingtheparent chairs. Each class had prepared a song for the ceremony, andRexwouldbesingingasoloduringhisclasspresentation.Butbeforethekidstookthestage, Iwastotake itmyself.EachgraduationtheCenterchoseaparenttosayafewwords,sincetheyknewitwasasmuchourgraduation as our kids’. We had all grown in ways we hadn’t thoughtpossible.AsIstoodonthestage, I lookedfirstat theparents,sofulloftheirownemotions,thenatmembersoftheteachingstaff,who’dbecomelike family over the years, then finally at the kids themselves.Myeyespannedfromthebabiesallthewayovertothegraduates,butitwasmyown son I was seeing in each face, the kaleidoscope of his yearsparadinginmymind’seye.Itookadeepbreath,pullingmyselftogether,andthenIspoke.

“I remember the first day I walked through the doors of the BlindChildren’sCenterasthoughitwereyesterday.Andyet, itwasoverfourandahalfyearsago,alifetimeago.Rex’slifetime.”I lookedoncemoreatthebabies,solikemysoninthebeginning,thenbackattheparents,andcontinued,“Rexwasbarelyfivemonthsoldatthetime,andtheworldasI’dknownithadbeenshatteredtwoweeksbeforeinthespaceofaninstantbyadoctor’sbluntwords:‘Yoursonisblind.’”

Iwenton topourout theemotionsof the journeyof those fourandahalfyears,andtothanktheteachersandstaffat theCenter forhelpingusmakeitthrough.Holdingbackmytears,Isaid,“ThankyouforhelpingmeseethechildRex,tohearhislaughterandtoseehowthesimilaritiesbetweenhimandotherkids faroutweighthedifferences.”Likea family,theyhadseenme throughsorrowandhadsharedmy joywhen thingsstartedturningaround.Ilookedaroundtheemotionalcrowdthatseemedtobehangingoneachword,andIcontinued,animated.“ThankyouforhelpingRexfightthemonstrousoddshefaceseachday.”

AsIstoodtherespeaking,Iknewthefuturewasholdingoutitshandtous, beckoning.The “realworld” outside the safety of theCenter,whichhadoncebeensoscaryandchaotic,nowseemedtoholdpromise.Andthelightofthatpromiseseemedverybrightfromwherewestoodtoday—ontheothersideofdarkness.MyvoiceswelledasIthankedthestaffalast timeand thankedtheotherparents. Iwas justgettingready formyfinal, very special thank-you, when it suddenly became too much, thefeelings too intense.My voicebegan shaking,my kneesbuckling.FiveyearsofrawemotionsweptovermeinatorrentasIfoughttokeepfrombreaking down. I paused to steady myself, my eyes sweeping theaudience to giveme time, and then they came to rest on a little blondgraduate.Hewasflickingthetasselonhiscapwiththebackofhishand.Myeyesblurred,seeingthoseperfectlyformedbabyhandsreachingoutforme that first time,almost fiveyearsbefore.Then,withmyheart fullandmyownhandextendingouttowardhiminhonorofhisbeing,Ispokemyfinalwords.“Andthankyoutomyownlittlesweetheart,Rex,myhero.IwanteveryoneheretoknowwhatItellyoueveryday:Iamsoproudofyou!”

“Iamsoproudof you!” Those sixwordsplayedover andover inmy

mindasIwaitedforhimtotakethestage.ThenIsawRextroopingontothegraduationstagewithhisthreeclassmatesandteacher.Ofcourse,itwasnosurprise tome thathisclasswouldbesingingasong from the’70s, and for this big event it would be Three Dog Night’s “Joy to theWorld.”Andmyboywouldbesingingasolo.Thecrowdwasexpectant.Thenthefootstompingbegan,withRexreadytoburstfromexcitement,astheysangofaworldfullofgirlsandboysandfishandjoy!

Rexlookedlikehe’dsplithisseamsfromthethrillofitall,clappinghishands to thebeat.Thenas leaderof theband, thechild they’d thoughtwouldneverspeak,shouted, “Onemore time” into themike.Onemoretime!Justtoshowthemthatyoucan,showthemit’sreal, isthat it?Nomore crisis of doubt, just give ’em all you’ve got, Rex! After anotherchorus itwashis solo, andwith his teacher holding themikeup to hismouth,andbeltedoutthelyricslikearockstar:

“IfIwasthekingoftheworld...”

Yeah!ThistimeIwastheonereadytosplitmyseamswithprideasmysonfinishedhisverseandthecrowdcametotheir feet,cheering.Thenthe class hit the final chorus amidst a jumble of Rex jumping up anddown, stomping his foot, and clapping his hands, somehow all at thesametime.Itwashisexclamationpointtosay,“Ireallymadeit!”Nowhewould be moving forward, beyond these walls. By the looks of it, Ibelievedhe’dbeclappingandstompinghiswayfull-speedaheadintotheworldofthesighted!

CHAPTEREIGHT

TheRealWorldYoutoomustnotcounttoomuchonyourrealityasyoufeelittoday,

sincelikeyesterday,itmayproveanillusionforyoutomorrow.

—LuigiPirandello

Thatsummer,Rex learned to rideabike, just likeotherkids, sortof. Itwas hard to believe how far he’d come, far enough to be pedaling anadaptivebike. Itwasactuallya three-wheelerwithabackrest toaidhisposture and Velcro straps to keep his feet from sliding off. But it wasshinyandredandhadabell,andheloveditjustasmuchasanyotherfive-year-oldloveshisfirstbike.Ittooksomeworktogethisfeetandlegsto move the pedals at first, because he did not really understand themotion, but he got it. On the other hand, his balance was surprisinglygood, and he became very adept at steering, adjusting the handlebars“justatadtotheright”or“asmidgentotheleft,”asIguidedhimwithmyvoice.Ifhemademorethanjustthatslightadjustmenttokeephiminastraightline,he’dthrowthebikeintoasidewaystiltandfallover.

His favorite place to ride his bike was near our house down theroadwaythatskirtedthebeach.The“beachroad”—that’swhatwecalledLatigoShoreDrive.Itwasaprivateroadwithfewcars.Butithadlotsofwarpedpavementwithcracksandodd tiltsandslants thatmadeRex’srides more harrowing, challenging, and, to my surprise, more fun. Helovedall the rockin’and rollin’ that theagingandweathered roadgavehim on his little bike.When his legswould tire, hewould a rest in thesand,listeningtothe“small,rippling”wavesorthe“big,booming”waves,dependingontheday.Thenit’dbebackhomeforsomerockin’androllin’of a different kind. It was time for more piano and his latest musicalpassion—the Beatles. The sun had barely set on his preschoolgraduation,andthe’70smusicwasoutinfavoroftheFabFour!Evenhisclassical favorites, Mozart and Beethoven, couldn’t compete with suchBeatlestunesas“HereComestheSun”or“LetItBe.”Notthatsummer.Hewasjustbeingafive-year-old.Itwasasummerofbikes,thebeach,

andtheBeatles.Lifewassunny,andhewasfeelin’groovy!

LABORDAY signaled the end of summer, and the back-to-school bellwasabout to ring in the firstdayatRex’snewschool.Olderkidswererushing to their classrooms, while the younger ones walked moretentatively with their parents. But all were excited to find a new class,meet a new teacher, make new friends. I’d brought Rex in early, notknowing theroutinesorhow longanyof itwould take,andsoweweresittingontheclassroomrugwaiting.Tenmoreminutesuntilthebellwasscheduledtoring.

AlittlegirlsawRexandranoverandploppeddownonthefloornexttohim. She was long, lean, and very pretty, probably a couple of yearsolder.“Canhesee?”sheaskedme.“Isheblind?”

Notwhat Iwas expecting. I steadiedmyself before responding, “Wellhello.What’syourname?”

“Cindy,”sheanswered.

“Well,Cindy,thisisRex,andnohecan’tseeinthesamewayyouandIcansee.Andyes,heisblind,whichmeansheuseshishandsorhisearstobehiseyes.”

She peered closely into Rex’s face, which was slightly down-cast,obviouslytryingtogetalookathiseyes.Shehadtolowerherownheadtoseethem.“Butitlookslikehecansee.”Iassumedshewasreferringtohisopeneyes.

Ithadbeeninnocentenough,achild’scuriosity.Herquestionshadjustcaught me off guard; I wasn’t expecting it on day one in Rex’s newclassroom.Theteachermusthavesaidsomethingtohisnewclassmate,and shewould do the samewith the other kids in the class. Thatwasnormal.

Cindyhadobviouslybeencaughtbysurpriseherselfonherfirstdayofschool. She seemed stricken by the idea of her new classmate beingblind.“Ididn’tknowakidcouldbeblind,”shesaidquietly.

AsCindy jumpedbackupto jointwootherstudents,havingobviouslysatisfiedhercuriosity,IrealizedIdidn’tknowhowtoeducatekidsaboutblindness.Wewereclearlyenteringabrand-newworld.Butthiswasthefirstdayofkindergarten,and itwasanexcitingnewworld. Itshouldbeexciting! Herewewere in the real world outside thewalls of the BlindChildren’sCenter,andalthough thechildren inRex’sclassroomallhadsomekindofspecialneeds,itwasinaregularschoolwith“regular”kids.It’sanewmiraclejustbeinghere,Ithoughttomyself.Butstill,Icouldn’tquitewardoffasenseofforeboding.

IHADbegunthesearchforanewschoolforRexsixmonthsbeforehispreschoolgraduation.Givenhissignificantneeds,Iwassureitwouldbeaformidabletaskfindingaschoolthatwouldbeabletoeducatehim.Thewholeprocessmademenervousandworried,but intheparentsupportgroupsattheBlindChildren’sCenter,Mirandahadtoldmethebestwaytodo itwas to compilea list of potential school programsand thengovisit them.Seeing theclassroomwouldbe telling,andhopefully I’d findonetofit.

After some research into what was out there, I came up with threeoptions—three very different types of programs that might be able toeducate Rex. I made school visits to each. The first was to anotherschool for the blind, similar to the Blind Children’s Center but forelementary-age kids. Like theCenter, it had the advantage of a highlyqualified staff to work with the students. I definitely liked the idea ofspecialistsworkingwithRex, but itwas very far fromour home,whichwouldmeanmoreyearsofcommuting.NotatallwhatIwanted.AsIwaswalking to visit the kindergarten facility, I passed a classroom of olderstudents. The line of white canes the students had hung next to theirclassroomdoorsuddenlyspoketomeofisolation.Thisschoolwasn’tinhiscommunity,anditwouldkeephimsegregatedfromhissightedpeerswhomadeuptherestoftheworld.Thisschoolcouldn’tallowhimtomixorteachhimhowtosocializeinareal-worldsituation,whichwaswhathewouldneedwhenheleftpreschool.

Thesecondoptionwasanotherspecializedschool,butthisoneworkedwithchildrenwhohadvariousdisabilities,agenericmixofchildrenwithdifferingmentalandphysicaldisabilities,suchascerebralpalsy,mental

retardation, or autism.Autism!Even though it had never beenofficiallyadded to his educational diagnosis,which stood as “multiply disabled,”Rex exhibited a fair number of autistic behaviors. There were all hisrepetitivebodymovements, his echolalia and scripted speechpatterns,and,ofcourse,his “raw”sensorysystemwhichcreatedhypersensitivityin his hands and ears. So in spite of the fact that he could sociallyconnecttopeopleinawaymanyotherswithautismcouldnot,Icouldn’tdenyhewas“ontheautisticspectrum,”astheyputit.Autismwasapartof those“multipledisabilities,”andaprettysubstantialpart. Ihad finallycome to accept it. Having been in denial for three years, I had finallycome to see the truth in his teacher’s frightening assessment of then-eighteen-month-oldRex—“I’m afraidRex is autistic.” Iwasn’t ready tohearthatbackthen;itwastoomuch,toosoon.Isimplycouldn’thandleit.But now I accepted the term “autistic,” having grown into it because itwas part and parcel of the child I loved so much. And now I wasdeterminedtouseitonlyasasourceofunderstanding,aspringboardtoworkfrom,notinanywayasalabelthatwouldlimitmyson.

ThisschoolhadbeensuggestedtomeasawaytoaddressRex’sothernon-blindness issues in a singular setting, meaning onsite access tospeech,occupational,andphysicaltherapists.Inaword,thisschoolwassupposedtoaddresstheautismaspectofmyson.IknewthatRexwouldbenefitfromtheexpertiseofstafftrainedtoworkwithallsortsofmentaland physical issues, in addition to blindness, so I made the visit. ButwhenIgot thereand tookone lookat themassiveconcretestructure, Ifelt my head spinning. It looked more like an institution than anelementary school, with its wide hallways filled with wheelchairs andchildren wearing protective helmets. Did thatmean children were herewhohadaggressivebehaviorsinadditiontoeverythingelse?IwantedtofleeasfastasIcould,butIfeltunsteadyonmyfeet.Staggeringbacktothe car, I slumped into the seat, nauseated and scared. It had been averybigstriketwo,withjustamonthtogountilRex’sgraduationfromtheBlindChildren’sCenter.

Then I made my third visit. Walking into a garden perched atop aMalibu hillside, with rows of carefully tended flowers and greenery, Istaredoutatabreathtakingsweepofoceandownbelow.HadItakena

wrong turn somewhere? Gotten the address wrong? My feet werefloatingmorethanwalking;IfeltasifI’darrivedinsomesortofparadise.But this was the right place. On this scenic road overlooking the vastPacific,itwastheschoolIwaslookingfor,locatedonlyfivemilesupthecoastfromourhome.FromthemomentIsetfootonthecampus,Iheldmybreath,wantingsomuch for this tobe theplace,andnotamirage.Could a place this beautiful really have a program suitable for Rex? Itwas a public school just a stone’s throw from our house where ourneighbors’kidswent.Coulditpossiblybetheone?

I’dlearnedeverythingIknewabouttheeducationofthedisabledfromparentsupportgroupsattheBlindChildren’sCenter.Theytaughtustheintricaciesofthesysteminordertoempowerustohelpourchildren.Wetheparentswouldneed toprotectourkidsonce they left theprotectivewalls of theCenter.Wewould need to be their advocates. TheCenterhad taught me about the big shift in education since 1975, when thegroundbreaking legislation whose acronym is IDEA became law. IDEAstands for Individuals with Disabilities Educational Act, and it assuredchildrenwithdisabilitiesa “freeandappropriate”education in the “leastrestrictiveenvironment”possible.Thestatutestatesthatthepublicschoolsystemwillpay toprovideallsupportnecessary foreachchild’sneeds.The “least restrictiveenvironment”clause focusedon the importanceofsocialization for children with disabilities. Simply put, the law wasintendedtogetthedisabledoutofinstitutionsorspecializedschools,likethe schools for the blind, and integrate them into typical classrooms inregular schools to the greatest degree possible. Ideally, it would helpchildren with disabilities learn to function in a real-life setting withnondisabledpeers inorder tohelppreparethemfor therealworld.ThegoalattheBlindChildren’sCenterwastohelpourblindkidsbenormal,orat least fit inasbest theycan—and that’swhat Idreamedof formyson.

Prior to IDEA, there had not been any educational equality for thedisabled,andachildlikeRexmightnothavereceivedaneducationatall.Or if he were able to attain anything, it would have been in aninstitutionalized setting; perhaps similar to the school I’d just visited,whichwasequipped toaddresshisheavy-duty issues.But the lawwas

clear—discriminationonthebasisofdisabilitywouldnotbetolerated,andnochildwouldbeneglectedingovernment-fundedfacilitiesbecauseofadisability,nomatterhowsevere.Theburdenwasontheschoolstomeettheneedsofourchildrenthroughtheprovisionofanappropriateprogramandextrasupportsnecessaryforeachchildtofunctionwithinhisschoolplacement. The lawwas obviously a big social victory for the disabledand for their parents.We theparentswere tobe included in thewholeeducationalprocess,fromfindingaprogramtohelpingsetprioritiesandgoals forourchildren.The law itselfempowered theparentsbymakingusimportantmembersofwhatwouldbecomeaneducationalteam.Theteacherwouldn’tbealonegunbutwouldbetheheadofawholeteam,where collaboration would be the key to success. Information andexpertisewould be shared to support the child. Since I had long beenaware that it took not only a village to raise Rex but a highly skilledvillage, I loved the idea of teamwork among specialists. The law wasbehindme,itwasbehindRex,andsomaybe...justmaybe...

I’d stopped in the front office andgottendirections tomydestination,Room30.AsIwalkeddownthecorridortotheclassroom,Ipassedtheplayground. Kids were rushing to form lines. As I watched a little boy,maybea firstgrader, racebackup to the topofawindingslide foronelastgo,justbeatinghisteacher’swhistle,Iwasprayingfornothingshortofanothermiracle.Myheartwasachingfor it. IwantedRextocometothisschool,makefriendswiththesekids,beapartoftherealworld.

Istoppedforamomenttowatchthekidsastheywaitedintheir lines,andIwasapproachedbyawomanwhosesmileprecededher. I feltasthoughshefit inthisplaceofsunshineandflowers,wherethecorridorswere lined with such neat rose gardens. In fact, she looked to besomeonewhomust love flowersanddogsandchildren—andwhowaslovedback.Extendingherhand,sheintroducedherself.“I’mPatCairns,theprincipal.”

Well I’d been right; she did fit in this school like a hand and glove.“CathleenLewis,” I said in return, shakingherhand. “I’ve come to visityourspecialedprogram formysonRex.”And then, feeling theneed toexplain,Icontinued.“He’sblind,and...”Ipausedforasecondandthenvoiced what I hoped wouldn’t exclude him from her school, “and

multidisabled.”

I searched her face for a reaction, but there was none. She smiledagainandsaid, “They toldme in theoffice youwerehere,Mrs. Lewis,andIthinkyou’llfindwehavealottoofferRex.”Sheusedhisnamewithsuch lovingease.Shealsocaughtmy lookof longingas Iglancedonemoretimeatthekidsontheplayground.“Andtheysay,hereatCabrillo,wehavetheniceststudentsinMalibubecauseourkidsareusedtobeingaroundchildrenwithdisabilities.”

As I listened to her, it was obvious this woman loved children of allabilities.Itwasinhervoiceandonherface,likeshewantedthistoworkoutforRexasmuchasIdid.ShetoldmethatallthechildreninMalibuwith disabilities were grouped in this school, and that there were twodifferentclassroomson thecampussolelydevoted tospecialed,alongwitha lotofotherservices theywouldbeable toofferRex. “Room30,whereyou’reheaded,isaspecialdayclasswithintensiveservices.”

“What,exactly,doesthatmean?”Iaskedhopefully.

“It means that all the students need supports such as speech oroccupational therapy,andmaybephysical therapy,alongwithacademichelp. Of course, the district would also provide your son with visionspecialists,whowouldcomeheretoworkwithhimandconsultwithhisteacheraswell.”

It all sounded great, with therapists to address feeding and use-of-hands issuesaswellascommunication.Plus,RexwouldalsohavethevisionsupportashehadattheBlindChildren’sCenter.ThatmeantRexwould receive orientation andmobility training to help him learn spatialconcepts and how to use a cane to navigate hisway around his classandcampus.ItalsomeanthewouldhaveateachertoteachBrailleandskills suchas tactilediscrimination.Mrs.Cairnswenton toexplain thatRex’sclasswouldbemadeupofeighttotenkidsofvariousdisabilitiesandages,rangingfromkindergartentofifthgrade.Theyneededtogroupdifferentagestogetherinordertogetenoughkidstojustifytheprogram,buteachstudentwouldhaveanindividualizedcurriculum.

Rex’s eyes were frozen, transfixed on me, as though he was just waiting for anexplanation...buthowdoyouexplaininvasivebrainsurgerytoan8-week-oldbaby?

Herewewereathome,rightafter learningRexwasblind.But“athome,”andthesaferefugethat impliedsuddenlyseemedtohavenomeaning.Howwerewetogoon inaworldthatwassuddenlysounsafe?

“It’smypartyandIcancryifIwantto.”RexturningoneattheBlindChildrensCenter.

Wecameheretohisfavoriteparkalmosteverydaytoswing,hopefulhe’dtakehisfirststep.“Youcando itRex!Just liftyour legandput it forward.”Rex,however, remainedobstinateinhisrefusaltobudgeorbebudgedwithouthislegsgoingspaghetti.

Whydotheykeeptrickingmeintoputtingmyhandsinthisstuff?This2-yearolddoesnotlikefinger-painting!

Saving sensitivehands for thepiano?Two-year oldRex testing the limits of theBlindChildrensCenterpiano,withBarneytheBearstandingguard.

“No more spaghetti legs for me, thank you very much”! Three and 1/2 year-old Rexwalkingproudalonghishomebeach.

Above:Rexhasalwayslovedthewater,fearlessinthepoolwithmomandinnertube

Below:“JustwhenI’vegotthiswalkingthingdown,leaveittoMomtoputmeonwheels”!

Above:Rex gets awinner’s hug frommom, after completing the 1Kwalk/run at TheLongBeachMarathonforteamBlindChildrensCenter.

Right:AmomentuntoitselfathomeforMomand4-yearoldRex.Withloveandlaughter,alltherestdoesn’texist.

Above:Rexdemonstratinghis“difficultycrossingmidline”hasnoplaceat thepianoasheexecuteseffortlesscrossovers,andfloatsup intothatworldwheredisabilitydoesn’texist.

Below: Proud Blind Childrens Center preschool graduate Rex, ready to take on thesightedworld.

Above:ToRex,myhero.IwanteveryoneheretoknowwhatItellyoueveryday.Iamsoproudofyou!”

Below: “Wedid itRex”!RexwithMomandUncleAlproudlyshowingoffhispreschoolgraduationdiploma.

Belowleft:Rextakingthelead!Hediscoverednewfoundfreedomnowthathishandswillactually hold a cane. Leaving playground swings behind, he is proud to change roleswithhisfaithfulfriendandaideKD,whoisusedtoguidingRexaround.

Belowmiddle:Leavinghardschooldaysbehind,Rextakesrefugeintheworldwhereheisatease.Likeagreatartiststandingbeforehispalette. “Heseesall thecolors,eachsubtlety,instantly,whiletherestofusseeonlyblackandwhite.”

Belowright:“Feelin’Groovy!Anewbigboybike,thebeach,andRexbarrelingdowntheboardwalktothebeatoflife!

Above:Rexnotonlylivespiano,butdreamsitaswell,andattimesturnsitintohisbed.

“Mom,Iknowit’spastmybedtime,butIthinkifIjustrestforasecondIcanplaymynewBeethovenSonataonemoretime!”

Below:Motherandson—anunbreakablebondoflove.Theoneabsolute.

Aboveleft:RextakestotheslopesatParkCity,Utah.“IthinkI’vegotthehangofit.NowcanIbombdownthemountain”?

Aboveright:Nowthisisliving!Rexbombsdowntheskislope,landsinaheap,andbegsformore—herewithmomandNationalAbilityCenterSkiInstructorDon.

Left:Rexgetsmoreskiing,andevenputssunglassesonforthephotoop(beforeaskingmomtotakethembackoffhissensitiveface)

AfterplayinghispianoforaYoungPresidentsOrganization(YPO)RegionalConferenceinArizona,Rexgoesoff-siteandshowsthatthesky’sthelimit!Notonlydoeshegettotouchthecloudsinhishotairballoon,buthehasfunwithMommakingabouncydesertlandingasotherYPOConference-goerstouchdownbehind.

Above:Rexbeginstotravel—wheninParis..

Below: In Paris . . .Rex does a happy Louvre pose with Mom, but will forego themasterpiecesinsideinfavorofajazzafternooninthecrosstownLuxembourggardens.

Above: Tokyo performance by night, visiting the city by day. Rex is intrigued by thesoundsofthebusymarketplaceAsakusa.

Below: Taking it to the limit one more time! Rex is honored by Austin YPOs (YoungPresident’sOrganization)toplayonthefamousAustinCityLimitsstage.

Rex sharing a laugh with older British counterpart Derek during filming break forDiscoveryHealthdocumentary,“MusicalSavants.”

Above right: Rex taking on a sophisticated air as hismusic branches out into a newgenre...jazz.

Aboveleft:Rex’sTime.

I hesitated, almost not daring to hope for evenmore. “Butwill he beabletointeractwiththosekids,”Isaid,pointingouttotheplayground.

Thiswomanwasprobablyamotherherself,andsheknewexactlywhatIwasfeeling.“Ofcoursehewill,”shesaid,placingherhandonmyarmin

a reassuring gesture. “At recess, lunch, and then he’ll most likely‘mainstream’ forpartofhisday.”Sheused theword Iknew thatmeantRexwouldspendpartofhisdayinaregularclassroom.

Itwas theperfectsituation,asmallclassroomtoprovidehimwith thequiet environment his sensory system still required, while graduallyallowinghimtoacclimatetomorenoiseand“reallife.”Finally,inadditiontoalltheothersupports,iftheteamfeltheneededit,aone-on-oneaidewouldbehiredtoassisthimthroughouttheday.

ThiscaringprincipalwalkedmetoRoom30,andasshedeliveredmetotheteacher,herpartingsmiletoldmeGodhadhitthisoneoutoftheballpark!

THETENminuteswereup,andthefirstbellrangintheday,butitwasn’teasytojust leave—leaveRex.Didotherparentshaveaneasiertime?Icouldn’tbelieveanyparentsofakindergartnerwouldfeelanydifferently,eveniftheirchilddidn’thavespecialneeds.Itwasmorethannormalforme to suffer the separation, with all of Rex’s needs. Things had beendifferent inpreschool,where Icouldalwaysgobackandsneakapeekintohisclassroom toseehow thingsweregoing.But thiswasapublicschool, and that meant parents weren’t allowed to just drop in. I wasreallyhandingRexovertohisteacher,anditwasveryhard.

I’d met his teacher, Mrs. Spader, on three occasions already: duringthatfirstschoolvisit,duringtheteammeetingtoplanRex’sgoalsfortheyear,andwhenshehadmadeahomevisitbefore theschoolyearhadbegun. She had wanted to see Rex in his home environment, and Iconsideredthevisitawonderfulgestureonherpart,promisingateacherwhocared.Shehadwatchedinamazementasheplayedhispiano,andwhenIaskedifitwouldbepossibletobringinakeyboardforhimtohavein theclassroom,shesaid itwouldbegreat.All systemswerego,andshe was excited with the prospect of having a blind child in herclassroom.Afirst!

I gave Rex a last hug, to reassure myself as much as him, then Iextendedhishandtohisteacher.AsIsteadiedmyselftogo,Mrs.Spadergavemea smile, a reassuringnod,andsaid, “He’ll be just fine.”Then

she ledhim toasemicircleofchairswhere theclasswouldbegin theirday,whileIbackeduptothedoor,needingtoseehimuptotheverylastsecondbeforethedoorclosedbehindme.

Trusting thathewouldbeokaywasallpartof theprocessofbeingaparent. I knew that. I also knew that all parents go through it to somedegree, but with Rex’s intense needs the whole thing was multipliedexponentially.However,duringthosefirstweeksIallowedmyselftotrustthesystembecauseIwastrustinginGodtowatchovermylittleboy.

Rexbecameentrenchedwithhisschedule,withallthespecialistswhocametoteachhimsomanyneededskills,andwithhisgroupclassroomactivities. He had been provided with a one-on-one aide namedKhadevis,orKD for short,whohelpedhimduring theday. I hadRex’sschedulewrittendownand knewhis dayswere full, but I foundmyselfignorant of what hewas actually doing during all the different servicesand activities. Rex couldn’t tell me, because his conversational skillswerestillextremelylimited.WhenItriedtogetspecificsfromMrs.Spaderat the end of each school day, she always seemed to be in a hurry.Granted, she was still in class with the older kids when Rex’s shorterkindergartendayended,buthermanneralsosaid,“Youneedtotrustmetodomy job.”Thiswasn’t thecollaborationIhadbeenhopingfor,but IhungontothesmallbitsIdidget.Fromtimetotime,shewouldtellmeaboutsomeskillshewasworkingonwithhim,suchaslearningthedaysof theweek,butgenerallya “He’sdoing fine”commentwasall Iwouldgetbeforeshe’d rushback into theclassroom. I tried to tellmyself thatnot being able to share my child’s school day was normal, but then IwouldberemindedthatothertalkativelittlekindergartnerscouldtelltheirparentsthethingsRexcouldn’t.Whattheydidinschool,whattheylikedordisliked,givingtheirparentsatleastthegistoftheexperience.

Sooneday, Ipushed thematterwithMrs.Spaderasshe ledmysonoutatpick-uptime.“Iwouldreallyliketoknowwhatskillsyou’reworkingon with Rex, so I can reinforce them at home.” Hadn’t that been thephilosophy behind education for the blind? Skills had to be reinforcedaroundtheclock.

Smilingatme,asthoughindulginganeedyparent,shegavein.“We’re

workingonalotofindependenceskillswithRex.I’msureyouknowhowdifficultthatisforRex,thingslikewashinghisownhands,hanginguphisownbackpack.”

“Yes,ofcourseIknow.Sohow’shedoing?”

Sheshrugged. “It’s slow,” shesaid. “Buton theotherhand,hehasagreatmemory for numbers and rote sequences. He always knows thedayoftheweekandthedate.He’sdoingverywellduringCalendar.Andin P.E. today, he really surprised us. Coach Gary had begun leadingwarm-upsbycountingindifferentforeignlanguages.Hediditforthefirsttimeyesterday,andtodayRexwasabletocountalongwithhim!”

Thinking he had probably counted along in Spanish, I looked at Rexandasked,“WhatdidyoudoinP.E.today,sweetie?”

“IcountedtoteninP.E.today,”heanswered.Hewentontosay,“AndIcounted to ten inGerman inP.E. today.”ThenRexproceededto listallthelanguageshehadcountedin:French,Spanish,Japanese,Hawaiian,Farsi,Russian,andBiepenese(IfiguredthatmightbeVietnamese).Withthelookofaboywithabigsecretbustingtogetout,hesaid,“IwanttocounttoteninGerman.”

Thenashebeganhiscounting,Mrs.SpaderextendedherhandtowardRexas if to say, “See for yourself, he’sdoing fine,”and thenwaved tosay,“Gottago.Kidsarewaiting.”Theclassroomdoorbangedshut.Iwasdismissed.WeheadedtoourcarwithRexcountingfirstinonelanguage,thenanother,untilhehadexhaustedhis listofeight foreign languages!Order,tonalsequences,that’swhatheexcelledin,butwhataboutalltherest? What about speech? Communication with other kids? Hisinvolvementintheclass?

Mrs. Spader had given me something to chew on, to keep me in aholding pattern, even though I had a growing sense I wasn’t beingincludedinhiseducationatall.IletitgountilamorninginlateOctober.IhadjustgottenRexoutofbed,andhegreetedthedayintheusualway,with his calendar spiel.He said exactly the same thing everymorning,justchangingthedayandthedate.“It’sabrand-newday,Mommy.What

day is today?”Without takingabreath,heansweredhimself. “Today isFriday,andthedateisOctober19.”

“That’sright,Rex.It’sFriday,andit’sabrand-newandbeautifulday,”Isaid,addingsomeinformation.“Sowhat’stheweatherliketoday?”

“It’ssunny,Mommy!Abeautifuldayisasunnyday.”

“Yes, it is. That’s exactly what beautiful means here.” I got his shirtready forhim. “Let’sput your shirt on, sweetie.Lefthand, righthand—overyourheadand...”

“Jump up and down!”Rex had the shirt on andwas jumping up anddown, loving thedressinggame I’dmadeup tohelphimsequencehismovements.

Icontinued.“Leftsock,rightsock,shoeson...”

“Tobeattheclock!”Hewasbeamingandreadyfortheday.

“Alldressedforyourlastschooldayoftheweek.AndwhenIpickyouup,beforewecomehome,youhaveabirthdayparty togo to.Arthur’sbirthday.Won’tthatbefun?”

“Thatwillbeveryfun!”heanswered.

In fact, it was Arthur’s mother who had invited us. They were ourneighbors inourcondocomplex,andArthurwas in firstgradeatRex’sschool.Soshe’daskedustojoinsomeofArthur’sfirst-gradefriendsforasmallcelebrationattheschool.

Iacceptedgratefully,wantingsomuchforRextobeincludedwithotherkids. That was thewhole point of his going to the school he’s in. Rexnever talked about any kids at the school unless I asked him about aspecific child. He could recite the names of all his classmates whenasked,almost like theywerenumbersandnotkids.Like the restofhisschoolday,Iwantedtoknow.“Rex,canyoutellmewhoyourfriendsareatschool?”

Hewasstillrevvedupfromthedressinggame,buthedidn’trespond.Imadethequestionmorespecific.“Rex,canyougivemethenameofonefriendyouhaveatschool?”

“KDisyourfriend,”hesaid,confusingpronounsasusual.

“Yes,ofcourseKDisyourfriend,sweetie,buthe’syouraide.Whatkidsare your friends? Can you give me the name of one kid who is yourfriend?”Rexgrewsilent,withaperplexedlookonhisface.“Whodoyouplaywithatrecess?”Iasked,tryingtohelphim.

“YouplaywithKDat recess,”hesaid,againexchanging “you” for “I.”The lookonhis facesaidhewashoping thiswas the rightanswer, theone his mother was looking for. Even though I felt my heart aching, Icouldn’tletitgo.

“Okay, sweetheart, that’s fine. I’m sureKDhelps you swing and playwith the other kids. So what kids do you have lunch with?” When hedidn’t answer, I changed the question,making it unmistakably specific.“Whodoyousitnexttoatlunch?”Thetoneofmyvoicehadaslighttingeoffrustration,inspiteofmyself.

“KD,” he said quietly, sensing his mother wasn’t happy aboutsomething.

Rex was so sensitive to my tone of voice; I didn’t want him to feelanything other than excitement for his school day. As I drove him toschool, I told him how much fun I knew school was going to be, allcappedoffbyabirthdayparty!ButtheinstantIhandedhimovertoKD,Iacknowledgedmyownthoughts,myconcernabouthisreticence(orwasit inability?) to talkabout thekids inhisschool. IwouldhaveaskedKDmyselfthatmorning,butIhadbeeninformedaboutthedistrictpolicythataideswerenotallowed todiscuss their studentswith theparents.Onlythe teacher could do that. All of a sudden, that policy seemed absurd,eventroubling,andIdecideditwastimeItookalookmyselfatwhatwasgoing on at school. Today was Friday, which was a minimum day,meaningthestudentswouldbedismissedrightafter lunchandthefinalrecess.Iwouldgoinalittleearlyandobserve.AlthoughIcouldn’tgointo

theclassroomwithoutascheduledobservation,noonecouldkeepmefromobservinglunchandplaygroundactivities,visibleastheywerefromthe parking lot at the back of the school where the disabled parkingspacesandschoolbuseswerelocated.

SothereIwas,parkedandwatching,waitingfor thekidstocomeoutforlunch.Ifeltexcitedandalittlecovert,butalsoanxious.ThenIsawthedoortoRoom30burstopen,andjustasathirdgradernamedJustinwasabouttorunoff,aclassroomaideslowedhismovement.Thereweretheotherstudentsandclassroomaides,andtheywereallmovingdownthecorridortowardtheluncharea.ButwherewasRex?AndwherewasKD?The other students had reached the picnic table, and Rex still hadn’tappeared.JustasIwasabouttogomarchingdowntohisclassroomtofindhim, Isawtheredballon theendofhisnewwhitecaneappear inthedoorway,assuringtheopeningwasobstacle-free.Ihadaproudcatchin my throat as I watched him grip the cane his sensitive hands hadrefusedtoholdforsolong.Hestoppedinthedoorway,andKDhandedhimhisbaseballcaptoprotecthissensitiveeyes.IwatchedasRexputitoncrookedwith thebacksidesmashedunderneath.KDtookthehatoffand handed it to him again. He made another attempt, and this wasbetter,abit crookedbutnot scrunchedup.KDhelpedhimstraighten itandgavehimahighfive.Itmademesmile,andRexwassmilingtoo,ashisaidewalkedwithhimtothepicnictable.Itwasobvioushisaideknewwellhowtoworkwithhim,andtheydidlooklikepalswalkingalongthatcorridor,justlikeRexhadsaid.

KDwas pushing independence, I could see that as Rex ledwith hiscane.Thiswasgood,butitseemedtotakeforevertogettothetabletojointheothers.Andthen,whentheyfinallygotthere,cameanendlesslylong process of getting him seated at the table, reminding me of hisphysical therapy sessions. Find the table, then the bench, sit down,swivelrightleg,thenleftlegovertofacethetable.Thereitwas,anothersequence, but here it seemed interminable. KD gave him minimalassistance, and he finally made it. His aide then placed his lunchcontaineron the table,and justas Iwas thinkinghowgrateful Iwashewasn’t refusing toeat thesedays,Justinandanotherboy finished theirlunches,havingobviouslygobbledthemdown,andranofftorecess.By

thetimeKDunscrewedthetoponRex’scontainer,twogirlshadleftthetable. Iwanted tohold thekids there,orhurryRexup; thewhole thingwas beginning to make me uncomfortable. By the time he had finallyscoopedhis lunchontohisplate, theothershadgoneoff toplay.Off toplay, while Rex’sworkwas just beginning. There he sat,my little son,scoopingandspillingandscoopingagain,eatinghislunchallalonewithhisaide.

Finallyhemadeittotheplayground,whereIhopedhewouldjoinsomeoftheotherstoplay.Buteachtimehemanagedtocatchuptoacoupleofclassmates,theywouldbeattheendoftheiractivityandrunningoff.Isawitontheclimbingstructureandtheteeter-totterboat,asifhewasoutofsyncandjustcouldn’tquitegetthereintime.Astudentwhowasn’tinhis class came up to him as he walked toward the swings, maybe togreethim.KDlookedtobetryingtofacilitateinteraction,toholdtheboytherewithRex,butcouldkeephimonlyasecondbeforeheranoffagain.Withonlyminutestothebell,Rexclimbedontheswing.Astheotherkidswere now moving in the opposite direction, heading back toward theclassroom, therehesatat thefarextremityof theplayground,swingingbackand forthwith the faithfulKD.Heseemedcontent inhisown littleworld,withKDclearlyfillinginalotofgaps.Andonceagain,itwasclear,hisaidewashis friend,butwhataboutotherkids?Was therenotevenoneplaymate?Andas Iwatchedmy littleboybeingpushedbyhis tallcompanion, seemingly his only school friend, my heart ached for him,floodingmewithanintensefeelingofloneliness.

Thebellrang,andRex’sclassmatesheadedeitherforparentpick-upinthe frontof theschoolor tocatchabusat theback. I’dcome frommyobservationpointintheparkinglottowalkRexovertothebirthdayparty.Asweapproachedthepicnictable,IwasdeterminedtohelpmysongettoknowsomeofthekidsatArthur’sparty.Iwasdeterminednowtogethim to be included with the others. The table was full of kids I didn’trecognize, except for Arthur and his older sister. Arthur’s mother wasgetting the cake out and passing around paper plates. It would be asimplegathering,andthegoodnewswasthat thekidswouldobviouslybecaptivehereat the table,eatingcake,andcouldn’t leaveRex in thedust.Hewouldhaveachance!

Rexand Isatat theendof the long table,across fromagirland twoboys. My son looked small next to this table full of first graders, andArthurwasdownat the farend. Iasked thegirl next tohimhername.Shelookedshyandsaid,“Susie.”

“Susie,thisisRex.Rex,canyousayhellotoSusie?”

Hesaid,“Hi,Susie.It’snicetomeetyou.Howareyoutoday?”

“I’m fine,” she said, giggling like a shy first gradermeeting someonenew.

ThenIaskedthegirlacrossthetablehername.ShesaiditwasMaria.Rexsaid,“Hi,Maria.It’snicetomeetyou.Howareyoutoday?”

“I’m fine,” she said, giggling as well, but this time it was moreamusement than shyness. I thought it was because Rex’s voice stilltendedtobesingsongy,especiallywhenhespokelinesthatwererotetohim, like greetings. It sounded a bit robotic, I suppose, with the sametonalcadence repeatingexactly thesamewords, likehewas repeatinglinesfromascript.

Whathappenednexthadasortofsurrealqualityaboutit,ithappenedsoquickly.Indeed,fartooquickly.Iturnedtotheboyacrossthetable.HisnamewasDrew,butthistimewhenRexrepeatedhisscriptedgreeting,Drewdidn’tsayhewasfine.Instead,hebeganmimickingmysontohisbuddy on the bench next to him: “It’s nice to meet you. How are youtoday?”Thisincitedhisfriendtopickupthebeat,andhebeganparrotingRexaswell:“Howareyoutoday?Howareyoutoday?”Thentheybeganlaughing,making themselveshoot.Maria lookeduneasy,havingcaughttheoutrageinmyeyes.BeforeIcouldsayanything,Rexhadplungedhisfingersintohisears,hidingfromtheirtauntingvoices.Buttheboyswerecaught up in their own meanness. They’d found their mark, and theyweregoingtodriveithomenow.BeforeIknewit,theboyshadstoppedthe mimicking and had now begun whispering to each other whilepointing at Rex, whowas just now daring to pull his fingers out of hisears.Suddenly,Drewflunghishandoutandbeganwavingitrightinfrontofmyson’sface.WhentherewasnoresponsefromRex,whoobviously

hadn’tseenthehand,hisfrienddidthesamething.Andthatreallymadethemhoot!

Ihadfelthurtrisinginmewhentheyhadfirstparrotedmychild’svoice.Butnow,asDrewflunghishandoutonceagain,arealbullyonaroll,thehurt changed to rage. Standing up, I grabbed the waving arm as itapproachedRex’sface.“Stopit!”Ishouted,hisarmstillinmygrip.“Whatdoyouthinkyou’redoing?Doyouthinkit’sfunnytobeblind?Tonotbeable tosee?” Iwas loomingoverDrewnow,having releasedhishand.“Howdareyoubullyablindchild!Howwouldyou like tohave to trysohardallthetime?Yeah,youdon’tknowanythingabouttrying,doyou?”

“Stopit!”Ishouted,hisarmstillinmygrip.“Whatdoyouthinkyou’redoing?Doyouthinkit’sfunnytobeblind?Tonotbeabletosee?”IwasloomingoverDrewnow,havingreleasedhishand.“Howdareyoubullyablindchild!”

The anger inmy voice as I shoutedmade the boy shrink down andbackintohisfriend’sshoulder.Nolongerabullycaughtupinautomaticmeanness,knifinguntilhedrewblood,hewaschangingback intowhathe was, a six-year-old who had obviously not intended to take on anadult. He was a kid again, and I was an adult, and he got what thatmeant,murmuring,“I’msorry.”

Withmyeyeslockedontheboy,whodidn’tdarelookaway,andbarelycontrolling myself, I said, “How would you like it if your eyes werebroken?” In one hurried movement, I whisked Rex off the bench andthen,puttingmyarmaroundhisshoulder, Ihustledhimaway from thattable.Ineededtogethimaway,togethimhometosafety.

CHAPTERNINE

SavantThehumanmind—somystifyinginitscapacitytoaccommodate

bothdisabilityandgeniusinthesameperson.

—LesleyStahl,60Minutescorrespondent

Who was I kidding? Rex wasn’t even safe in his own home. As Iwatchedmysonstruggling to findhis rockingchair in the living room, IwonderedhowmanytimesIhadwalkedhimthroughtheroute—twenty-five,thirtytimes?Givinghimtheessentialspatialindicators:passthebigfluffychair (feel thewrought-ironframe), thecoffeetable(feel thestoneedge),thenturnlefttothechair.Yethedidthesamethingallthetime—hegot lost inthissmallroom.Hehadmadeitpastthecoffeetable,butthenhehadturnedrightinsteadofleft,bumpingintoaplant.Theleavesbrushinghisfacemadehimstop,thentakeastepbackward.Butthen,asthough the plant would just go away on a second try and the rockingchair would magically appear, he stepped right back into the plant.Touchingleavesagain,helookedconfused.Wheredidtherockingchairgo?“Therockingchairistoyourleft,Rex,”Isaid,tryingtokeepmyvoicelevel. “It’swhere italways is.”Finally,he turned left,buthemighthavewalkedrightinfrontofthechairifhisrighthandhadn’tmercifullygrazedthearmrest.

Onotherdays,withoutmyhelphemighthavecircledthecoffeetableendlessly. It was like his brain was filled with spatial confusion. TheroutesIhadworkedonwithhim,againandagain,camebackrandomlywhenhetriedthemonhisown.Today,oncehefoundtherockingchair,Iwatchedhimplacehis righthandon the firstarmrest, like Ihadshownhimnumerous times.Areferencepoint.But insteadof locating theseatandturninghisbodyaroundinfrontofthechairsohecouldsitdown,heswiveledhisbodyinthewrongdirection.Thatputhimtothesideofthechair,causinghimtotrytoplanthisbottominopenspace!Hejustdidn’tgetit!Icouldn’tjustsitbackanymore,nottoday,whenIwasstillreelingfrom school bullies, and so I rushed to assist, to provide safety once

again.

TheonlythingRexcouldfindeasily intheroomwashispiano.Itwasuncanny,almostlikethatlittlekeyboardwasemittinganelectronicpulsemysoncouldn’tmiss,andhewouldwalkstraighttoiteverytime,sittingon his piano chair with ease. No randomness there! And there wascertainlynothingrandomabouthissenseofspacewhenhewasseatedatthekeyboard.Eachintervalseemedtomakesensetohim,hisfingersknowinghowto jump to thenoteshewanted,andhisbraincould relaxandjust“be.”Andhewassafe.Thereathispianohewassafe.

Itwas thesafetyof thatpiano that Ineededonwhat Iconsideredmyleast favoriteholiday,at leastsinceRex’sbirth.For the last fiveyears Ihad considered Halloween a chore, an obligated ritual, unchosen andunwanted.Ghostsandgoblinshadbeensuchfunformeasachild,butnowtheywerejustunseencostumesthatmeantnothingtomyson.Andwhatwas trick-or-treating?Gettinga bag full of candyhe couldn’t eat?ButthisyearIhadwantedtogethimconnectedsomehowtotheholiday,at least to thesocialside. In theaftermathof thoseboysmakingRexatarget for ridicule, I acceptedamother’sneed to keepher sonsafe, toprotect him, but I knew thatwithdrawalwasn’t the answer. Somehow IneededtobringsafetytotherealworldforRexandforme.

AlthoughninjasandpirateshadbeenpopularthemorningofhisschoolHalloween parade, on this holiday of childhood dreams and fantasies,Rexhad togoaswhathewas—amusician.Not justanyoldmusician,but one he would really relate to. Who else but one of the Beatles?However, itwasn’t theblacksuitorwhiteshirtoreven theBeatlesbobhairdothatmeantanythingtohim.Itwasonlythemini-accessoryguitarslungoverhisshoulderandthesongs“HeyJude”and“Yesterday”hegotto play on his keyboard during his class party that allowed him tounderstand why he was supposed to say, “I’m dressed as PaulMcCartney”wheneversomeoneasked.Safeandyetconnected.

Rex’s school activities were followed by a Halloween party in ourcondominiumclubhouse.Itwasafirstforus,sinceI’dneverdaredcometosuchapartywithRex’searsstillsosensitive.Butthisyear,intheformof his keyboard, I’d found an entry point for us into that noisy

environment. With swirls of ghostly white cobwebs hanging from theceilingandjack-o’-lanternsflickeringbytheentrancedoor,IstoodbyRexin the far corner of the clubhouse. With his costume accessory ofMcCartney’sbassguitar lyingnext tohim,hewas filteringout thepartydin by playing “Let It Be” on the piano. As I took in the room—mostlyadults,withafewkids—Ihadhopesofactuallygettingtoknowsomeofmyneighborstonight.

A couple who lived a few doors down from us meandered over,catching the last half of Rex’s song.When he finished, the man said,“You’ve given ‘in costume’ new meaning. That was amazing.” Rexseemed to be enjoying himself, proceeding through his Beatlesrepertoire,playingsongaftersong,soItooktheopportunitytoleavehim“safely independent” as I crossed the room to have a raremoment ofadultconversation.Afteracoupleofminutesofconversation,Iwasaboutto rejoinmysonwhen Ibecameawareofa tallgentlemana fewyardsfromhim.Themanwasdressedcasually,slightlyrumpled,withthelookofanintellectual.Hisheadwascloselyshaven,towithinamerequarterof an inch, with a balding half moon in the front. But what was morestriking than his appearance was the intensity of his gaze. He waswatchingmyson, transfixed.AneighbornamedRicksaidsomething totheman,buthedidn’trespond,sointentwasheonstudyingalittleblindboyplayingakeyboard.Rexwasoblivioustotherestoftheparty,butsowasthismanashestoodthere,hiseyesnotwavering.Iwasjustabouttogointroducemyselfwhenawomangrabbedtheman’sarmandpulledhimintohergroup.

The party was still in full swing, but it was after Rex’s bedtime, so Iunplugged his keyboard, getting ready to head home, when the manapproached us. After a brief introduction that told us his name wasRichardMortonandthathelivedintheveryfrontofthecondocomplex,heaskedsimply,“Hasyoursoneverplayedafull-sizedpiano?”Withoutwaiting for an answer, he said, “Because I have one inmy apartment,andIthinkhemightlikeit.”

IaskedthisRichardifhewasapianist,towhichheresponded,“It’sapassionatehobby,notmyprofession,butI’d lovetohaveyoursonplaymypiano.”

SoIputthequestiontohim.“Rex,wouldyouliketoplayarealpiano?”Using “real” as the word he would associate with an eighty-eight-keyinstrument.

“Youwould like toplaya realpiano,”heanswered.Youwould like toplayarealpiano!Evenwithpronounconfusionandecholaliacombinedto form a response, those words came straight frommy son’s heart. Iwould take him to play our neighbor’s piano, but little did I know thedramaticeventsthatwouldcomeintoourlivesasaresultofthischancemeetingatapartywealmostdidn’tattend.

Two days later wewere knocking onRichardMorton’s door. His six-foot-three heavyset frame towered over my diminutive five-year-old,providingastrikingvisualcontrastaswewalkedintotheroomwherethepianowas located. “I’msogladyoucouldcome,Rex,”hesaid,smilingbroadly. Richard was dressed in baggy shorts and a T-shirt, standardbeachwear, and in spite of the intellectual air about him, the excitedtwinkleinhiseyegavehimachildlikequality.

Rex laid his tiny fingers on the piano, and he became instantlycaptivated.Thisinstrumenthadtherichtonalqualityofarealpiano,butbecauseitwasdigital,hedidn’thavetofightwiththekeystogetsoundout,andmyson’susuallighttouchwassufficient.Absorbedintotherichresonanceofthenotes,hisimprovisationstookflight.

Richardwatchedwith a lookalmost as farawayandabsorbedas theoneonmyson’sface.“Noonetaughthimhowtodothat?”heaskedindisbelief.

“No. He’s taught himself everything,” I said. I also knew that Rex’shomeinstrumentwouldnowneedtobeseriouslyupgraded.

“Unbelievable!” he said, shaking his head in amazement at Rex’smasteryof thekeyboard, thequalityof theharmonieshewascreating.Afterwatching in silence formanyminutes,Richardasked, “Rex, can Iplaysomethingforyounow?”Ihelpedmysonoffthebenchandontomylap;thenourhosttookhisplace.

Heturnedtousandsaid,“HowaboutalittleBach?”

Irepeatedthequestiontomyson.“Rex,howaboutalittleBach?”

Rex’s answer was complete echolalia. “How about a little Bach?” heasked.

InoddedtoRichard,andhesaid,“ThisiscalledtheGoldbergVariationAria:inthekeyofG.”TheBachnoteswerelightandephemeral,hangingsuspended in the air atmoments, and the look onRex’s face said hewanted to riseupandgrab them,make themhisown,ormaybe flitoffwith them.Myson looked tobe leavinghisbody thereonhismother’slap,whilehisspiritflewfreeandweightlessonthemelody.

“Didyoulikethatone,Rex?”Richardaskedasthefinalnotescametorest.

“Yes,”mysonresponded,inatrance.

Richard triedacoupleofotherpieces,butRexstartedobjectingveryloudly, whining. So our host relinquished the bench back to his guest,otherwiseknownasmytyrantson.ItwashardforRextobenearapianoforlongandnotbetheonedoingtheplaying.Iacknowledgedhewasabit rigid in that regard, but it seemed to affect him so physically that Ineverwentagainsthiswill.Athome,nobodycouldeventouchhispianoinhispresence.Nowhewashappilyback inpossessionof thosekeysthatwere so essential to his being. But this time he didn’t beginmoreimprovising.Instead,themelodythatcameforth,risingupfromthekeys,surging from thedepthsofRex’smusicalbeing,waswhatRichardhadjustplayed!Hedidn’thavetotroubleitoutorlistentoitafewtimes,ashe’ddonewithfarsimplersongsinthepast,butheplayedtheGoldbergVariationAriamelodybackalmostverbatim!Myson’stinyrighthandhadinstantlyreplicatedhundredsofnotes,completewithintricatetrills,whilehislefthandprovidedmusicallysoundharmonies.

“Howmanytimeshasheheardthatpiece?”RichardaskedassoonasRexhadfinished.Itwasanormalquestion,buttheanswerhegotbackwasanythingbut,andlefthimdumbstruck!

Solemnly, I said, “That was the first time,” feeling reverence wasrequired. Tears were rising up at the feeling of being blessed to bearwitness to something sophenomenal andholy.Noonespoke then, asthoughwordssimplycouldnotexpresswhathadjustoccurred.

I began takingRex toRichard’s housealmost everyday sohe couldplay that piano he loved so. And themanwho had studiedmusic andmusical theory in depth watched and assessed. He wasn’t a pianoteacher; he was a writer and the intellectual I had taken him to be, aRhodes scholar. Richard’s fascination in my son grew daily. After acoupleofweekshebeganexplainingpartsofmylittleboy’sgifttomeinmusicalterms.

“Notonlydoeshehaveabsolutelyperfectpitch,buthehasexceptionalmemory, and he can transpose a song instantly from one key intoanother.”

“Igetthememory,”Isaid,“andperfectpitchishearinganoteandbeingable to replicate it exactly. Butwhat does transposemean?” I asked. Ihurried to add, “In simpleton’s terms, please,” beforeRichard could hitme with an intellectualized explanation that would confuse me evenfurther.

He thought for a moment, struggling to translate concepts that weresecond nature to him into terms a nonmusicianwould understand.Hisbrow furrowed, perplexed by the challenge, but then his eyes lit up.“Imaginetakingaword,say‘tambourine,’andspellingit.Totransposetoadifferentkey,youwouldreplaceeachletterinthewordwithaletterofthealphabet that followsorprecedes itbyagivenvalue.Forexample,shiftuponevalue,andthe tof tambourinebecomesu,oruptwoplacevaluesanditbecomesv.Theabecomesborcandsoon.”

Iwasbeginningtogetit,likeningtransposingtoencoding.

Richardwenton.“Thenimaginebeingaskedtoshifteveryletteronanentirewrittenpageupordown threeor fiveplaces in thealphabetandtryingtospellwithoutpauseortimetocalculate!That’sexactlywhatRexcandowiththenotesofamusicalcomposition!”Hewasexcitednowby

hisownanalogy.

For my part, I was dumbfounded as the complexity of it all wasbeginningtodawnonme.Todothat,automaticallyandwithoutreflection,would have tomeanmy son’s brainwas like amusical computer.All Icouldmusterwas,“Butwhatdoesthatmean?”

“It means Rex’s musical brain is light years ahead of his motor, histechnicalabilitytoproduceit.”Helookedatmeintently.“Hishandsneedsomeseriousworktocatchup.Heneedsateacher.”

OverthedaysthatfollowedIwastornbetweenwantingRex’spianotoremain“his,”withoutoutsideinterferenceandinstruction,andadesiretohelpmysondevelophisobviousgift.Thepianowashisinspiration,andIdidn’twant it tobecomeachore.Aswithall the important things inourlives, I presented the situation toGod throughprayer. Theanswer thatcame tomewas in the image of a little boy playing hundreds ofBachnotes he’d just heard, pushing three fingers of his right hand intooverdrivetostaytruetothemusic,merelybecausehedidn’tknowhowtousehisthumbsorpinkies.

Richard had been teaching little tidbits to Rex for weeks now, and Iwould have asked him if he would consider giving some more formallessons,buthehad tomovefromourcondotoa location fortyminutesaway.Hewoulddefinitelycontinue toworkwithRexas timepermitted,butIknewweneededaformal,localcommitmentaswell.

Our search was over before it began. One Sunday at our church Iasked themusical director, LynnMarzulli, if he knew of someonewhocould teachpiano toRex.ThisdevoutmanofGod lookeddownatmylittle blond boy whom he’d seen around the church only from afar,reachedintohispocket,pulledoutacard,andhandedit tome,saying,“Givemeacall.”

Afewdayslater,afterLynnandIhadbothapparentlyprayedaboutit,wewent for an “assessment visit.” After driving up a long andwindingroad, through a rather precipitous canyon, we arrived at the musicaldirector’shouse,rusticallytuckedawayinthehillsofMalibu.Thehouse

wasperchedonahill,with the lushlygreenpropertymorevertical thanhorizontal, plunging down a steep slope into a dry creek bed. Lynngreeted us at the front gate and led us through vines and thornyrosebushesanddownsomeratherjaggedandunevenstonestepstothe“musicstudio,”whichwasasmall,windowedgazebojuttingoutinspaceoverlookingthestonycreek.ThismanhadthebenevolencebefittingthemanofGodhewas,andIgotthefeelinghehadacceptedthechallengeof potentially teaching my little blind son out of a sense of service.However,benevolencewasquicklytransformedtoastonishmentwhenhesawRexdemonstratehispianoskills. I realized ithadn’tbeenwhathewasexpecting,asIwatchedhimrubbinghischin,ponderingtheunlikelypianist in his midst. He summed up the visit with, “He clearly hasincredibletalent.Wejusthavetoseewherewecantakeit.”Andsowewereon.

Itwasamagicalsetting,amusicalgazebo innature’spalm,andRexwouldcometocallourtwice-weeklydrivestoLynn’shouseourascentsup “the magical, musical mountain.” And so his formalized musicaleducation began three months before his sixth birthday. The greatestchallengesthepianoteacherfacedweremorelogistical thanmusical. Itwasaweeklybattlebetweenteacherandstudent—Rexwouldswatandtug at Lynn’s arm, while the teacher would try to dodge the student’sgrabbinghandsinordertodemonstrate.Tomyamazement,Lynntookitall in stride, treating the grabbing, piano-possessive hands of this five-year-oldasanintegralpartofastrangeandfascinatingpackage.

During the first lesson,LynnplayedaC-majorscalewhileRexsatonthebenchnexttohim,withmeneutralizingmyson’sgrabbingarmfrombehind. “Listen, Rex, to the notes,” Lynn said. Then, as he played thenotes,henamed them, “C–D–E–F–G–A–B,andback toC.That’saC-majorscale.”Bythattime,Rexhadmanagedtosnakeandsquirmoutofmy grasp.Whichmeant as soon as Lynn said, “Iwill play theC-majorscaleonemoretime,” thestudentgrabbedtheteacher’shand,blockinghim.Withoutpreamble,andwithlightningspeed,Rex’srighthandhitthepiano keys.And there theywere, all theC-major scale notes, as ifmysonwantedtosay,“That’seasy.”

Lynn raised his eyebrows, perhaps believing Rex had already been

shownaCscale,andsaid, “Thatwasperfect.Okay.Letmeshowyouanother scale then.” His piano teacher hit a G note. “And this is a G-major scale,” he announced. But before he could demonstrate, Rex’spiano-hungryhandjumpedthegunstraighttotheGnoteandhezippedthroughhisownperfectGscale.“Heknowshisscales?”Lynnaskedme.

“No,”Isaid.“Youjustshowedhimhisfirstone.”Iconfess,musicianthatI’mnot,Ididn’tevenknowwhatamusicalscalewasmyselfuntilthatday.Afterthat,Ijustsatback,lettingthesessionflow,withtheteacher’seyesgrowingwiderwitheachpassingminute,asmysonproceeded througheachofthetwelvemajorscalesinturn,afterhavingheardthatonesinglescaleplayedthatsoletime.

Twoweekslater,itwasalessonontheminorscales,butthistimeLynndidn’t even play a scale in demonstration, just a singleC-minor chord.Rex’s fingers again aborted any further demonstration by intuiting theaccompanying scale himself. “Who showed him that?” Lynn asked thistime, as though it was impossible that Rex could just play it from thechord.Again,theanswercameback,“Noonetaughthimthat.”

BecauseofthedifficultyLynnhadplayinghisownpianoforRexduringthe lessons,hehaddevisedanoninvasivewaytoteachhimsongs.Hewouldrecorda“homework”pieceontoaCD,recordingatrackwithbothhands together,and then trackswith the leftand righthandsseparatedout.ThatwayRexcouldlistentothepianoonCDathome.Becauseofhisexceptionalmemoryand instantnote recognition,hebegan “eating”musicalcompositionsatarapidrate—theveryfirstweekitwasaHandelminuetinF;aweeklateritwasaBachminuetinG.

LynnfacedamajortaskinthebeginninggettingRextousehisfingersproperly.Mysonhadcometohisfirstlessonwithonlyself-taughtuse(ornon-use) of his fingers, having obviously never even had a visualexample toemulate.Thatmeanthishandswere flataspancakes,withthumbstuckedintohispalms,andpinkiesonlydraggingalongaspartofa three-group toplayanote. Insum,heused three fingersonhis righthandandtwoonhislefttosomehowplayeverything.SoLynngavehimnumerousexercisestoallowhisfingerstogainspeedandprecision,andsurprisingly, he loved all those finger drills. Or maybe not surprisingly,

since that was what allowed him to play classical pieces that werebecomingmoreandmorecomplexeachweek,eventhoughitwouldbealmostsixmonthsbeforehewouldusehisthumbswithanyconsistency.

During the same months we made our ascents faithfully up themountain to study music with a man of God, there was a man of theintellectwhowasjustasfaithfulinhisweeklySaturdaycommutestoourhome.RichardMorton’sfascinationwithRexhadcontinuedtogrow,andhe came to complement the lessons with Lynn by exposing myexceptionalchild todifferentkindsofmusicalharmoniesandrhythmsinorder tochallengehisbrain.Notonlyclassical,but jazz,blues,and thewide-open country rhythms of Aaron Copeland. Unlike Lynn, Richardwould intellectualize about Rex’s extraordinary piano skills, trying tograsp,toquantifyandexplainwhatseemedbeyondexplanation.Astheweeks passed, it becameapparent that theRhodes scholar inRichardwashooked—likeamathematicianonacomplexly integratedequation,hookedatonceon thepotentialof thechildandon the intriguehehadstumbledupon.Hesawitasdestiny—albeitdestinywithadoubleedge.Hewouldsay,“Partofmefeels likeI’vewonthelottery,andpartofmefeels likeI’vebeendrafted.”Hugepotentialrequiredhugeresponsibility.HesawRexasanintellectualconundrumhewantedtounderstand.

With the precision of a mathematician, Richard would carefully andpainstakingly plan out lessons, working out chord progressions andadvancedmusicaltheory,spendinghoursonconceptsRexwouldgraspinstantly.AlthoughRichardattackedthelessonplanningwithascholar’svigor, trying to rise to the challengeof his student’smusical intellect, itdidn’t take long before he realized that the success of his work wasultimatelyinitsdelivery!Icluedhiminprettyquicklythatifhewantedtopass the lesson onto the child, he needed to become a child himself.Althoughitcouldn’thavebeeneasytoparkthatmassiveintellectatthedoor,inordertoenterintoachild’sworld,that’swhathedid.

SoeachSaturday, Igot towitnesstheastonishingtransformationofaRhodesscholarintoalumberingchildtheretoplaymusicalgameswithafive-year-old. The heart of the communication between teacher andstudent was in the music itself, speaking through a melody, a chordprogression, or a chosen key. They would play back and forth, the

equivalent of amusical conversation; Richardwould play a line, whichRexwouldanswer.ThenRichardwouldleadsomewheremusically,andRexwouldpickitupandrunwithit.Almostlikeachessgame,Rexwouldstrivetobackhisopponentintoamusicalcorner,whichwouldstumptheteacher,leavinghisfingersmuteandfrozen.Unabletomakeamove,theteacherwould have to acknowledge, “I’ve got nowhere to go,” causingthe student to squeal and laugh, shaking his head back and forthwithexcitement,knowinghe’djustmadea“musicalcheckmate.”

Musicwaslikecolorstohim,andhecould

distinguishanynuance,anyshadewithouthesitation,inthemannerofagreatartiststandingbefore

hispalette.

As the months went by, Rex’s musical brain seemed to know nobounds.Heeasilylearnedthenamesforthenotesandchords,thekeysandchordprogressionsheheardsodistinctlyinhismind.Musicwaslikecolors tohim,andhe coulddistinguishanynuance, any shadewithouthesitation, in the manner of a great artist standing before his palette.That’sthewayLynnMarzullidescribedmyson’sperfectpitch:“Rexseesallthecolors,eachsubtlety,instantly,whiletherestofusseeonlyblackandwhite.”LikeLynn,RichardpushedRextodevelophis technique, inthe hopes his fingers could catch up to the warp-speed growth of hismusical brain. He moved Rex into exercises to facilitate playing moresophisticatedpieces,notatallaneasy tasksinceheonlyhada fingerspanofasix-year-oldtoworkwith.BythetimeRexturnedseven,hewasdiligentlyworkingonleft-handleapsthatwouldopenthedoortoaworldof waltzes and even the rhythmicallymore complex Chopinmazurkas.The“jumpbass,”upanddownthekeyboard,wasthefoundationforanysuchwaltzormazurka.

Howcouldhehavesuchaflawlesssenseofspacewhenseatedthereinfrontofthekeysandyetgetlostinhisownlivingroom?

That’swhenthegrowingparadoxofmysonhitmefullforce.Itwasthe

visionofRex’stinylefthandmasteringprecisetwo-octavejumpsupanddown the keyboard to a “1, 2, 3” waltz count that left me stupefied.Absolutespatialprecision!Howcouldhehavesuchaflawlesssenseofspacewhenseatedthereinfrontofthekeysandyetgetlostinhisownlivingroom?Foranevenmoreglaringcomparison,Icouldvisualizemyson’shandsgettinglostonasinglepageofatactualbook—top,bottom,leftcorner,rightcorner, itwasalla jumble inhisbrain. Itwasthesamething at a table; he was incapable of locating anything in a methodicmanner—meaning sweeping his hand left to right, back and forth,beginning at the top of the desk and proceeding down to the bottom.Despite repeated instruction in just that, there was no methodology inRex’ssearchpattern,andeachtimehe’dbeaskedtolocatesomething,hispatternwouldmorphintosomesortofrandomjabbingwithhishand,combined with partial sweeping of a minute fraction of the requiredsurface. And yet, wasn’t it the same discipline—spatial awareness? Asingledisciplinemeantasingleareaofthebrainwouldbeused;atleast,thatwas the theory.How then could you have one specific part of thebrainfunctioningsodifferentlyin“space-related”tasksatthepianoandin“space-related” tasks elsewhere—running the gamut fromhyperperformancetocompletebreakdown?Iaskedmyselfthequestion,Could it be possible that when Rex playedmusic, he was interpretingspatialdistanceintermsoftonesinsteadofphysicalspace,andassuch,wasoperating fromanotherpartof thebrainaltogether?Apart thatnotonlywasn’tdamaged,butthatwashyperdeveloped?

The same question applied to finger dexterity and fine motorcoordination. Why didn’t Rex’s coordination at the piano translate intootherareas?Hecouldn’tevenunsnaphisownpants,havingneitherthestrengthnorcoordinationinhisfingerstodoso.Whatwasitinmusicthatcreatedsuchspatialorderoutof chaos inhisbrainandchangedweakand fumbling fingers into vibrant strength? More important, how couldmusicbeusedtoacceleratemyson’sdevelopmentinotherareas?

Rex had just begun second grade, and Richard called me with arequest.“WoulditbeokaytotestsomeofRex’smusicalskills,asasortofassessment,duringthelessonthisweek?”

It seemed like a normal request at the time. I didn’t hesitate in

responding,“Aslongasitdoesn’ttaxRex.”Iwasjealouslyguardingthefun I knewmy son had during those times with Richard, all the whilesecretlywantingtounderstandtheextentofhisgiftmyself.

“Don’tworry,”heassuredme.“He’llhaveasmuchfunasusualwithit.”

Saturdaycame,andRexwasalreadyseatedatthepiano,playing,ashe awaited his teacher’s arrival. The usual knock came at the door.“Richard!”mysonsaid,hisvoicebrimmingwithanticipation.

IopenedthedoortoallowRichard’slargebodyandpresencetoenter.NormallyhemadeabeelineforRexandthepiano,jumpingrightintothemusic. But today, he had a preoccupied look on his face. “I’ve begundoing research into perfect pitch,” he threw out as a greeting. Thenwithoutsomuchasahello,hewenton.“AndRex’sprodigiousmemorywhen coupled with his sophisticated harmonic sense and intervallicawareness...”

That’swhenhecaughtmy“parkitatthedoor”look,anditstoppedhiminmid-sentence.

“Oh, sorry,” he said, flashing the boyish smile thatwas so endearingoncehetookoffhisintellectualhat.HehadknownforsometimehowheneededtoshiftgearsinRex’spresence,andinmypresenceaswell,forthatmatter.

Like an actor walking on stage, Richard went through an instantcharactertransformationashesteppedovertoRexandgavehimabig“squeeze”hugthatliftedmysonstraightoffthepianobenchandintohisbearlike arms. Richard was now like a big, oversized kid himself. Rexlaughedaboisterouslaughasthebigmansethimbackdown.

Thenasheoftendid,Richardbeganthelessonmakingupatuneandsinginghissentences.Todayitwas:

Rex,you’relaughing!

Ohyes,you’relaughing!

Whatawonderfulsound,thatlaughing!

Ha,ha,ha,ha,ha!

Thatmeansyou’rehappy,

You’reha,ha,ha,ha,happy!

Let’splaysomethinghappy!

ThenRexjumpedintothesametune:

Let’splaysomethinghappy!

Majorkeysarehappy;

Theymakemewanttolaugh!

Ha,ha,ha,haha!

Hewas playing a joyousmelody as he sang thewords, andRichardsaid, “That is very happy. Your G major is happy. But now let’s playsomethingsad!”

Rexinstantlychangedtoamelancholictuneandsaid,lovingthegame,“Minorkeysaresadkeys;theymakemewanttocry.”Thenmakingasadface,without stopping themelody, heexaggerated, “Boo,hoo,Bminormakesmeverysad.”

“That’sgreatRex,nowbacktoahappyD,please!”AndthechildwasinstantlyplayinginDmajor.Theteacherwasclearlyassessing,evenasthegameprogressedthroughdifferentkeys,thestudentnevermissingabeat. Richard had explained to me how he wanted Rex to associateemotionwithmusicandhadcreatedthesad/happygameasitrelatedtotypesofsoundsanddifferentmusicalkeys.

Richard then ledRex through amusic building game, showingRex’sability toconstructmusic from individualchordsandnotes, in thesameway another child might snap legos together into a building. Richardclapped for his student’s success as Rex finished with a chordprogression.“Good,Rex.Now,ifBeethovenhadwrittenthatsamethingasawaltz—one...two,three,one...two,three—whatwoulditsoundlike?”

Rexstruckthesamechordprogressionhisteacherhadrequested,butinwaltz tempo now, instantly recognizing the song hewas building. “Itwould sound like the ‘Moonlight Sonata,’” he said as he played thefamousnotes.

“Moltobene !”saidRichard, in the Italianmyson lovedso. “Now let’sturnitintoasongandsingalong.”

Adagio cantabile,” said my son, caught up in this magical “musicalworld.“Thatmeans‘slowlysinging’inItalian.”

Then as Rex began playing the waltz chords of “Moonlight Sonata,”Richardbegansinging,“We’rewritingasonginthestyleofBeethoven.”

Rexjoinedhisteacher’ssinging.“Writingasong,anditsoundslikethe‘MoonlightSonata.’”

Ashejoinedhisownpuresopranovoicetohisteacher’stenor,“We’rewriting a song, in the style of Beethoven, in the style of Beethoven,” Iwonderedhowitcouldpossiblygetanybetter.

Ididn’thavetowaitforananswer.Richardsaid,“Bravo,Signore.Nowlet’sfinishpianissimo.Softly,Rex,softly.”

AndRexcounteredwithplansofhisown,“Non—forte!Loudly!Iwanttoplayforte!”Andhethrewhiswholebodyintothekeysashesangout,punctuating each one-beat syllable, as though it came straight from awaltzlover’ssoul—one.. . two,three,one.. . two,three.“WRITINGaSONG!AnditSOUNDSliketheMOONlightSonAAAAta!”

Itwasliketheywereinaninsulatedcapsule,abubbleworldoftheirown.Childlikeintheir

interaction,theyseemedabletotapintosomething

higherthanintellect.

There they were, the two of them, the oversized teacher with hisbaldingheadand thegiggling,wiggling littleboyathisside. Itwas like

theywereinaninsulatedcapsule,abubbleworldoftheirown.Childlikein their interaction, theyseemedable to tap intosomethinghigher thanintellect.Withmysontrailingouthislastvictorious“andForteSonAAAAta,”Ifeltatpeace,likeIwasinmyowninsulatedcapsule,untouchedbytherestofourexistence.

Thenthebubbleburst.Richardsaid,“Rex,youcanplaywhateveryouwantnow,whileItalkwithyourmother.Youdidagreatjob.”Inthespaceof the four meters it had taken him to join me on the couch, he hadsnappedback intohis intellectualgarb, themagicgone. I couldn’t helpresenting itwhenhesaid, “Well thatproves it.”Heseemeddeep inhisownthoughts,talkingtohimselfmorethantome.

“Proveswhat?”Iasked,somewhatannoyed.

“I’vebeentryingtofigureoutthesignificanceofhismusicaltalentandhave begun networking. The science of it is almost overwhelming,” heassured me, as if he was making mental calculations rather thancommunicatingpersonalinformationtome.

Then,likeatreasurehunterwhohadstumbledontoapricelessfindandwasstakingaclaim,heblurtedout,“He’sasavant!Aprodigiousmusicalsavant.”Isatthere,mute,notknowingwhatthatmeantandnotknowingwhattosay.Hewentonwithoutme.“Andtherearen’tmorethantwentyaliveintheworldtoday!”

Richard explained what it meant—a scientific anomaly, causing anextremelyrareislandofpuregeniustoexistinaseaofdisability.Itwassimplytoomuchformetoviewmychild insuchterms.Likeanoddity?Anextremelyrareandpreciousoddity?Whenall Ihadeverwanted formychildwasnormalcy?

IT WAS with my head still reeling and confused from Richard’sannouncementthatIbegantheascentupthemountainforalessonwithLynn two days later. Maneuvering around hairpin turns, I was drivingslower than normal because there was little visibility. September wastypicallyamonthofpristinedays,buttodaytheweatherseemedtomirrormymind. Itwas thekindofdaywenormallygotonly in thespringtime,

with thecoastsubmerged indense fog.Wecalled it “Junegloom,”andthereweredayswhen itneverburnedoff.Withmyownmindso fullofmurkandconfusion,Ifeltsurelytodaywouldbeoneofthoseno-burn-off,depressingkindofdays.

RexwasoftenexhaustedfromhisdayswhenIpickedhimupatschool,andtodayhisownfatigueseemedinkeepingwithmyown.Inanattempttoliftbothmysonandmyselffromthefogofourspirits,Ibegantosingourfavoritedriving-up-the-mountainsong.“Thelongandwindingroad... to Lynn’s house.” Our car hugged themountain on a sweeping rightcurve,slowedintoahairpinleftthattookusupasteepslope,andasweclimbed,thethicksoupyhazesuddenly,andsurprisingly,beganthinning,the coast receding behind us. Just as we were readying for anothermountain-hugging pull to the right, the sun burst through the haze, itsluminescencestakingavictoriousclaimonthemountaintop.

BythetimewepulledintoLynn’sdriveway,thesunlightwaspracticallyblinding us with its intensity. No more room for stodgy spirits here. Inmuch thesameway,ourdrive todayhad takenus fromdensemurk tolightnessandair,so theweightofmy thoughtswasallbutgoneby thetimewearrived.

On thisday,withRexplayinganarabesque farbeyondhisyearsandthesun’sbrilliantraysstreamingthroughthetrees,sciencewasnowonlyhanging on to the periphery of my consciousness. That’s when Lynnturned to me, and for the first time in a year and a half, voiced hisinnermost thoughts about my son like a sacred confidence. “When IwatchRexplayingthepiano,it’sascloseasIfeelI’veevercometoGod.It’slikehehasadirectconnectiontotheCreator.”Thereitwas,absolute,without measuring stick or qualifying criteria, a direct counter to thescienceof it all.Hadn’t I felt it toosomany times,during lessonsorathome, with heaven-sent notes cascading up and down the keyboard?Lynncontinuedspeaking.“Hisbrainisalreadywiredwiththingsit takesnormal musicians years to acquire—he just hits a button and hasimmediateaccesstoknowledge.”Iwashangingonhiswords.Then,withmockexasperation,hesaid,“It’sdepressinghoweasyitisforhim!Lookatme;I’mfifty.I’vebeenamusicianallmylife,andIcan’tdosomeofthethingsRexdoesautomatically.That’sdepressing!”Butheworeasmile

thatsaidRexhadwowedhimonceagain,asmilethatsaidtheteacherstoodinaweofthestudent,humbledinthepresenceofsomethinghigherthanhumancomprehension.Henoddedhishead inacknowledgement,inreverence,andsaid,“RexhasatouchoftheDivine.”

CHAPTERTEN

ASystemOutofTouch

Wefindcomfortamongthosewhoagreewithus—growthamongthosewhodon’t.

—FrankA.Clark,author

RexhadtheappearanceofneitheramusicalgeniusnorachildtouchedbyGodashestoodoutsidehisclassroomdoortappinghischinwithhishand, repeatedly, mindlessly. It was one of his many stereotypicalbehaviors.Icouldseehimfromtheparkinglot,andIhadnoideawhathewasdoingouttheresinceclasseswereinsession.Hewasaloneexceptforhisnewaide,whowasperchedonanearbybench,ignoringmyson,likeshewaswaitingforsomething.I’dgonetoschoolmid-morning,afterdiscoveringI’dforgottentoputRex’shatinhisbackpack.Hiseyeswouldbetoosun-sensitivewithoutit,andsoI’dcometodeliverit.Iwatchedfora couple of minutes, confused. What was he doing? Or not doing? Iwalkedover to seewhatwasgoingon, but his aide stoppedme. “Youcan’ttalktoRex.He’sintime-out.”

“He’s in time-out?” I asked, surprised, thinking that forRex “time-out”wasprobablyaboutgivinghimabrainbreak.“What’sheintime-outfor?”

Beforeshecouldrespond,thebellrang,andRex’sclassmatesfiledoutoftheclassroom.ItwastimeforadaptiveP.E.,thereasonformyrushtogetmyson’shattohim.IsawCoachGaryontheplayground,waitingasthekids joinedhim. Just then,Rex’s teacher stuckherheadoutof thedoor.Ifshewassurprisedtoseeme,shedidn’tshowit.“Rexcancomeoutoftime-outnow,”shetoldtheaide.

Isteppedovertohisteacher,whoIknewhatedbeingquestioned,andrepeatedmyquestionnonetheless.“WhyisRexintime-out?”

Stillconvinced“time-outs”forRexwouldbeusedmoreasabreakthan

punishment,Iwastakenabackbyheranswer.“Heneedstolearnhowtotaketurns.Heanswers forotherstudentsduringmorningcalendar,andhedoesthesamethingduringphonics.”

“So you bring him outside and let him stand by himself, hitting hischin”?Iasked,incredulous.

“We tried tokeephim inside, turninghimaround inacorner for time-outsaswedowiththeotherkids,butitdoesn’twork.Theotherstudentsunderstandwhatfacingawallmeans,butRexcan’tseethewall,andhecanhearjustaswellfromthere.Sohestillinterrupts.Heneedstolearntoworkinaclassroomsetting,”shesaid.

Iwasafraid toquestionany furtherbecause Ialways feltmyparentalinputwasresentedmorethananythingelse,withhisteacheralternatelysnappingatmeorindulgingmeasthoughIwereachildmyself,asshejust had. She’d been doing the same thing since Rex entered herclassroom in kindergarten, running the class with an iron grip withoutmuch room for outside input. Itwas far from the collaboration I’d beenpromised in the public school system, but I had to acknowledge Mrs.Spaderhadmadegains inmanyareaswithRex.Inspiteofherstrong-armteachingstyle,mysonhadlearnedtofeedhimself,waslearningtowrite in Braille (although he couldn’t read back what he wrote, withfingersstilltoosensitive),andwaslearningphonicsskills.

Stiflingmy desire to knowmore, having accepted the parent-teacherdisconnect as the price I had to pay formy son to be in this school, IhandedhishattoMrs.Spader,saying,“RexwillneedthisforP.E.”

Shelookedmeintheeyeandsaid,“Rexwon’tbegoingtoP.E.today.Hehastofinishtheworkhemissedduringhistime-out.”

Iglancedatmyson,stillmindlesslytappinghischininthecorner.ThenI lookedoutonto theplay field,whereCoachGarywas justgetting thekids ready to play kickball—Rex’s favorite. I saw two of the older kidskickingtheballbackandforth,likeasoccerball,asthecoachsetoutthebases,andIsnapped.

“Rexcan’tmissP.E.,”Isaidcoldly.“It’sinhisI.E.P.,”Isaid,referringtothe yearly specialed plan which guaranteed my son his educationalsupports. The plan stated Rex would have twenty-five minutes ofadaptive P.E., four times every week, or this teacher was in effect notobservingtheregulation.Iknewit...andsheknewit!

Shestaredatme,hereyesnotflinching...butneitherdidmine.Then,suddenly, her face relaxed, knowing toowell she couldn’twin this one,notwhenaparentplayedthe“I.E.P.”card.Itwasdefinitelythetrump,butithad tobeused judiciouslyso that theeducationalprocessdidn’t turninto a battle of wills. “Of course, Rex will go to P.E.,” she said wisely.Then,“He’llmakeuphisworkduringrecess.”If Iknewthesystem,sheobviouslyknewit too,andmyson’sweeklyrecesstimewasn’tcarefullydelineatedlikeP.E.

I felt my stomach clutch, realizing how dependent I was on thisteacher’sgoodwill.Shehadmysonsevenhoursaday,and, lawornolaw, nobody really controlled what went on in the classroom. “Do youknowhowimportantitisforRextogetexercise?”Isaid,myvoicetingedwithanger,inspiteofmyself.“Ifhedoesn’tgetoutsideandmovearound,his body and his brain just shut down. He needs fresh air andmovement.”

“Healsoneedstolearnconsequencesofhisbehavior,”shecountered,not one to be trifled with. “And if there’s no loss of privilege when hedoesn’tstayontaskordowhathe’stold,thenhe’llneverlearn.RexhasbehaviorissuesI’maddressingthroughabehaviorplanIhavehimon.Iknowverywell theonly thinghereally loves isbeingoutside,so losingthatprivilegehastobehisconsequence.”

Behaviorplan?WhywasthisthefirstIwashearingofit?Withthat,shehad thrown down the gauntlet, and the battle lines would be drawn. Icouldn’t trust the system anymore, and as amother I needed to knowwhatwas going on behind the closed doors of the classroom. “Okay, Iunderstand,” I said, hiding my outrage, not wanting to risk making anenemyofmy son’s teacher but knowingat the same time therewasagreater risk in doing nothing. “But I’d like to schedule a classroomobservation,soIcanseewhatyoumean.”Ihopedbymytoneshewould

consider me an ally, there to support Rex’s well-being, someone shecouldcollaboratewithandnotattack.

SheimmediatelyagreedIcouldcomeobservetheclassroom,knowingI had the right, but wanted to limit the time to the very minimumguaranteedby theregulation, twentyminutes. Icouldn’tbelieve thegallof this teacher I had tried so hard to trust. “Iwon’t be able to observeanythingintwentyminutes,”Isaid,thecolorrisinginmyface.

“Ican’thaveparentsdisruptingtheclass,”sheretorted.“ItwilldistractRex,havingyouintheclassroom,nottomentiontheotherstudents.”

Howastuteshewasatplayingthat“studentcard”!ButIwasn’tabouttobackdownon this one.Withmyadrenaline really pumpingnow, Iwascommitted to my course. “First of all, Rex won’t even know I’m therebecauseIwon’tspeak.AndI’llneedtoobserveforacoupleofhours...orthereisnowayI’llbeabletogiveyoumypermissiontohaveRexonanybehaviorprogram.”Ionceagainplayedthetrumpshedidn’tseemtothinkshehad toconsider.Shehadn’tadvisedmeevenofher intent toputmy sonona behavior program, let alonegoneabout obtainingmyconsenttodoit.

Sheraisedhereyebrows,surprised.ThatIknewtheregulation?OrthatIwascallingherhand?Sheconceded immediately. “Youcansit in theclassroomfromthemorningbelluptorecess.You’llseeforyourselfwhatI’m talking about. But you understand that it’s observation,” she said,treatingmetoher“teacher”voice.“Ican’thaveyouinterrupting.”

“Ofcoursenot. Iwouldn’t thinkof it,” Isaid,mimickingherpatronizingtone.

The observation was scheduled for the following Tuesday, none toosoonasfarasIwasconcerned.Thankfully,intheinterim,Rexdidn’tmissany P.E. or recess. That was one thing he would always tell me afterschool. I assumed Mrs. Spader knew she had been overstepping herauthorityandhaddiplomaticallypulledbackon the“behaviorplan”untilshe had parental consent. Although I suspect the decision had comefromhigherup,asintheprincipal.Walkingbacktothecarthatmorning,I

hadbumpedintoPrincipalPat.Shemusthaveseenamother’sdistressplasteredacrossmyface,soshehadaskedmewhatwaswrong.IhadconfidedtohermyconcernsaboutRexandhiscurrentschooling.Iknewthis principal would go to the mat for her teachers, supporting andbelievinginthem,butIalsoknewhowinnatelygoodshewas.Shehadaheart for us parents to be sure, butmost of all, shewasguardian andprotector of the kids. I believed she was doing what she was doingbecause she loved her students and knew how vital their educationwouldbefortheir lives.Soultimately, likeanygoodprincipalor teacherforthatmatter,shewasinRex’scorner.

Myobservationdayintheclassroomstartedoffwithfifteenminutesoffree time. Each student was asked to pick an activity to carry out,independentof instruction.Fivestudentshadformedacircleontherugandwereplayingsomesortofboardgame,twootherssatatatablewitha puzzle, while a younger boy was staring into the aquarium. “Tony,wouldyouhelpRexget tohiskeyboard?” Iwashappy tosee the thirdgrader walking with my son, guiding him with proper technique, to hispiano. I had brought the piano there as a social bridge, to createinteractionanda subject of conversation, aswell as a tool to enhanceRex’s self-concept. But when he sat down at the keyboard, instead ofplaying some music for the other students, his teacher said, “Yourheadphonesarerightinfrontofyou,Rex,astheyalwaysare—youknowhowtoput themon.”And that’swhathedid—beganhisschoolday,asapparently was his usual routine, cut off from his classmates at play,isolatedbytheheadphonebarrier.

During languagearts instruction, the classroomwasdividedbyabilitylevel,whichmeantsometimesbyageandsometimesbycognitivelevel.While the “youngest” group began doing more visual work with aclassroomaide,Mrs.Spader took four students between first and thirdgradetodesksrightinfrontoftheblackboard.JustasIwasbeginningtowonderwhatRexwasgoing todoaloneathisdesk,his teacherof thevisuallyimpairedarrived.

Walking tomyson’sdesk, thevisionspecialistsawme inmydistant,silentcornerandnodded.Shesatdownbesidemysonandgreetedhim.“Hi,Rex.”

“Hi, Karen,” came the return greeting. “It’s Braille time,” he said,obviouslyknowingwhatKaren’spresencemeant.

“That’sright,Rex;we’regoingtodosomereadingandwritinginBrailletoday.”Karenspokeinalow,ratherflatvoice,whichmademecranemyhead forward so I could hear. I watched her hand my son a piece ofBraillepaper.Withteacherassistance,thestudentstruggledthroughtheprocessofputtingthepaperintheBraillewriter,whichresembledaveryheavy old-fashioned typewriter. But he managed to get it in and washappywithhisaccomplishment.

Lookingatalistofwords,Karenasked,“CanyouBraillethewordsledfor me?” Rex said yes, but his hands remained in the air. I wasn’tsurprised, since Karen lacked the energy of voice my son needed tomotivatehimintomovement.“YouneedtoputyourhandsontheBrailler,Rex,” she continued in the same monotone. I knew too well howdependent my son was on the energy of those who worked with him,energy that was conveyed through tone of voice. So, listening to thiswoman,Ihadasenseofforeboding.

Atthesametime,inthefrontoftheclassroom,Mrs.Spaderwasbusywith her group.She had a pile of phonics cards in front of her as shefaced her students. “We will be working on the short e sound today,pronounced‘eh.’Whocanspellsled?”

Threeofthefourhandsshotup,butbeforetheteachercouldcallonastudent,Rexhadbecomeveryexcitedandcalledout,“S-L-E-D—SLED!”

Mrs. Spader sighed and said, “Thank you,Rex. That’s right. But youneedtofocusonyourownwork.”Shecastaglanceinmydirectionasiftosay,“Yousee?”

Karen put slight pressure onRex’s hands to prompt themdownontotheBraillewriter.Mysondepressedasinglekeyandthenhishandsshotstraight backupagain, distracted, andnot likingwhat hewasdoing. Itwas obvious he was listening to Mrs. Spader as she held up anotherphonics card, and said, “Bed.Whocan tellme thesounds in theword

bed”?

Again,handsshotup,andagainRexcalledoutfromacrosstheroom.With precise enunciation, he said, “Three sounds. ‘B-ehh-d.’ ” Thenproudly,“Bed.”

Rex’shandswere flappingexcitedly,knowinghewasrightagain.Theteacher looked across at him, her exasperation rising. Karen leanedforwardtomysonandsighed,asiftosay‘sameold,sameold,’andsaid,“Rex, Mrs. Spader just asked you to do your own work and let yourclassmatesdotheirs.Youhaveyourownsledandbedrighthere.”SheplacedapageofBraillewordsonthetablenexttotheBraillewriterandputRex’shandsonthepage.Myson’shandshotbackup.Andwhynot?Hecouldn’treadBraille.He’dbeentryingfortwoyearsnowandcouldn’tevendistinguishoneletterfromanother,letalonereadwords.Hishandswerestilltoohypersensitive.

“Idon’twanttotouchthebumps,”hesaid,gettingagitated.Andyetthatwasmy son’s sorry task, touchingbumps that hadnomeaning; all thewhilehewantedtobeinthegroupspellinganddoingphonicsoutloud.Itwasasplainasday...painfullyplain.Andthat’swhathewasgoodat—spelling and decodingwith his voice and ears, not his hands. I shifteduncomfortably in my chair, living my son’s frustration, as Karen oncemoreguidedhishandontotheBraillepage.Rexsattherelistlessly,likeachild condemned to prison, bored and apathetic. He actually almosttoppledoutofhis chair frompureapathy. Justwhen I thought I’d seenenough,agirlstudentsteppedovertotheelectricpencilsharpenernearthedoor.Iwantedtojumpupandscream,“No!”atherasshestuckherpencilin.Terrified,IlookedoveratRexasthehigh-pitchedsoundofthepencilgrindingdownhittheairwavesandhisnervoussystem,sooverlysensitized by blindness mixed with autism. His response wasinstantaneous. Like he’d been struck by amassive electric current, hislimp, listless body went rigid, his jaws clenching and trembling, as hepulled his hands away from the book to ram his fingers into his ears,crying,“Turnthepencilsharpeneroff!”

“Idon’twanttotouchthebumps,”hesaid,getting

agitated.Andyetthatwasmyson’ssorrytask,touching

bumpsthathadnomeaning;allthewhilehewantedtobeinthegroupspellinganddoingphonicsoutloud.It

wasasplainasday.

Mrs.SpaderlookedatRex,whosefacewasbeetredwiththeimpactoftheshock,thensaid,withunseemly,almosteeriecalm,“Trisha,youknowyou’resupposedtoletRexknoweverytimeyousharpenyourpencil.”

Acknowledging her oversight, the girl mumbled, “I’m sorry,” as shereturned to her seat. Slowly, Rex pulled his fingers out of his ears,althoughhis facewas still flushed.Hehadawary, defensive look, lesttherebeanewassaultonhissensitivesystem. Iwasbeginning toseewhymysonwasalwayssotiredafterschool,asKarensaid,“Comeon,Rex. You need to calm your body down and do your work.” Calm hisbody?Didn’ttheyunderstandwhatthatdidtohim,theextentofwhathadjusthappened?

I took a deep breath to calmmyownbody down,whileRex’s handsfinallycametorestontheBraillepage,notcalmedbutnumbed.Heranthem mindlessly back and forth across the page, clearly not feelinganything he was touching, accomplishing nothing. He sat there in anumbedstateforacoupleofminutes,emotionless,practicallycomatose,ignoringthespecialistwhohadcometoworkwithhim.Iwantedtowalkover tohis teacherandaskwhyRexwasn’t inhergroup,participating,butbitdownon the temptation. Iwas there toobserve,not interruptoradvise.

Allofasudden,theschoolbellrang,anotherjoltthatshockedRexoutof apathy back to hypertension. His fingers shot back to his ears asKaren pulled the almost-empty page Rex had Brailled from theBraillewriter. Mrs. Spader said, “Time for recess, everyone. Butremember,weallmustwashourhandsbeforewecanhaveoursnackandgoouttotheplayground.”

Herstudentspushedbackfromtheirdesksandscrambledtowardthesink,justbehindRex.Theyoungerstudentsjumpedupaswell,andthe

resultanthubbuballaroundmysoncausedhimtopushhisfingersevendeeper into his ears. As I watched the kids taking turns to wash theirhands, Icringed, fearingtherunningwatersoundthathadalwaysbeensohard forRex.Then I becameawareofa sustainedpitchemanatingfromhismouth.“AAAAHHHH.”Itwashisownpersonalwhitenoise.Likea pacifier, the sound soothed him, somehow holding the cacophonyaroundhimatbay.Butforhowlong?

OneoftheolderboyswasjustheadingforthedoorwhenMrs.Spaderstoppedhimwitharequest.“Thomas,I’dlikeyoutohelpRextoday.”

Thomasturnedaround.“Okay,”hesaid,walkingovertomyson’sseat,obviouslyknowingwhathistaskwas.RexstillhadhisfingersinhisearsasThomastoldhim,“Rex,I’mgoingtohelpyouwalktotheplayground.”

Rexdidn’trespond,andsotheteachersaid,“Standup,Rex.Youneedtowashyourhands.”Whentherewasstillnoresponse,sheplacedherhandsunderhisarmstoprompthimintomovement.Slowlyhestoodup,andshe turnedhimaroundsohewas facing thesink. “Comeon,Rex.Thesinkisrightinfrontofyou.”

Just then, a girl who had just finished at the sink turned quickly andbumped intoRex,knockinghis fingers fromhisears.Hestumbled,andasheshiftedhisweighttoavoidfalling,hissustained“AAAHHH”soundgrewlouder,aprotective,almostdesperatecrescendo,strugglingtofilterout thechatterandchaoticcrusharoundhim,strugglingagainstautismandthedistortionitcausedinhisbrain.Thomas,impatienttogetoutside,tookRexbythehand,saying,“Comeon,Rex.We’vegottago.”Hetriedtopull him forward to the sink, butRexcouldn’t takeanymore jostlingand jerked his hand free as two more classmates moved past to gooutside.

Mrs.Spaderinstructed,“Tryagain,Thomas.”

Theboytriedagainandwasresistedagain.Rexyankedhishandonceagain from theolderboy’sgrasp, saying, “Bye,Thomas.Bye,Thomas.Bye,Thomas”—adesperatetryatdismissal.

Mrs.Spadersaid, “Thomas,youcangoahead. I’ll takecareofRex.”And theboy ranoff, relieved.As the last student turnedon the faucet,Rexbackedup to removehimself from thesceneandbumped intohisdesk. That was the final straw, and it snapped his brain wires,plummetinghimdeepintothevortexofhisautism.Hebeganspinninghisbodyinspace,likeawhirlingtop,hisbrainhavingbeenturnedtochaos.Iwatched my child with a searing pain in my gut, as if I was bleedinginternally.

I jumpedup to intervene,but the teacherstoppedmewitha look thatsaid,“Iwillhandleit.Thisismyclassroom.”

Butthis ismyson! I thought,clutchingmystomach.Shespokefirmly,rightathim.“Ifyouwanttogooutsidewiththeothers,youneedtostopspinningandwashyourhands.Thesinkisrightinfrontofyou,Rex.”

Iwatched indisbelief.Teacherandstudentwereonseparateplanets,with no lines of communication between the two. As if I were seeingsome tragic,distorted theaterof theabsurd, Iwas frozen,watchingmybeautifulson,blindandtragicallyimprisonedbyautism,silentlyspinningin place, trying to spin his brain back into order. Losing patience,Mrs.Spaderdemanded,“Doyouhearme,Rex?”

That’swhenIsnapped.ItwasmorethanIcouldtake.Rushingacrosstheroom,Icutin,breakingmypromisenottointervene.Staringstraightat the teacher, Iwas livid. “Don’tyouunderstand?This isaspatialandsensory issue.Can’tyouseehowhardhewas trying tosortoutall theconfusion and noise? Don’t you think he wants to be outside with theotherkids?”

“Tryingsohard?”shecountered,inatoneofdisbelief.“Hewasheshisownhandsall the time.So I knowhecando it if hewants to,andyettodayhechosenotto.That’sbehavior!”

How could this special-education teacher just not get it? I wanted toshake some sense into her, someunderstanding.But here, today, all Icoulddowasputmyarmsaroundmyboytostophisspinning,applyingfirmpressuretoreassurehim,reaffirmingmymaternalroleofcomforter.

Then,staringathisteacherwithprotectiveoutrage,borderingonhate,Ireaffirmedmymaternal authority aswell . . . andwith that, amother’sdutytodefendherson.AndsoitwasinavoicevergingonexplosionthatI said, “We have to have an intervention! Iwant everybodywhoworkswithRextocometoanemergencyI.E.P.!”

CHAPTERELEVEN

I.E.P.ForGoddidnotgiveusaspiritoftimidity,

butaspiritofpower,ofloveandofself-discipline.

—2Timothy1:7

Ihatedconfrontation.But Iknewtherewasnochoice. Itwas imminent,just moments away. So I called up the spirit of power, love, and self-discipline through prayer, as I had done before so many times duringRex’slife.Intimesofconfusion,intimeswhenI’dbeenparalyzedbyfearordoubtoranger,whenI’dhadto“buckmyselfup”tofightthegoodfight.

In thedayssincemyclassroomobservation, I’dbeenconsumedwithsuch intense anger and indignation that it had leftme feeling sick andcrazy half the time. Internal dialogues would run rampant inmy head,back-and-forthdiscussionsattempting to reachgroundwheremediationand remedy would be possible, but always ending up with a furiousindictment: “How could they?” or, “Doesn’t she get it?” Fortunately, theotherhalfthetime,Isomehowmanagedtogetpasttheemotioninordertodealwiththerealityofthesituation.Thatmeantdoingmyhomework.What was the reality of the law? And how could theory be madeapplicable inRex’scase?I.E.P.stoodfor IndividualizedEducationPlan,andithadbecomeglaringlyobviousIneededaplanofmyown.Aplantopresent at this meeting I had demanded. The I.E.P. was an actualdocument,theresultofteamplanningatthenormallyannualmeeting.Itcontained all the vitals for a child’s “appropriate and least restrictive”educationalyear.Delineated,inblackandwhite.Butwhattheycurrentlyhaddownonpaper forRex,and in theirminds,wasnotonly failingmysoneducationallybutundermininghisbeing.

IhaddeliveredRextohisclassroom,andnowIsatinourparkedcar.Mysensesseemedmuted. I couldn’t seeblue in theskyorpink in therosestoday.Thecolors fadedbeforemyeyes,andtextureswent flat in

thisworldthatwassuddenlytwo-dimensional—blackandwhite,darknessandlight.Infact,allIreallysawwasthedoortothemeetingroomoffinthedistance,anditwasformidable,astheassemblageinsidewassuretobe.Behindthesoliddoorwouldbealongtable,longenoughtoseatallthespecialists involved inmyson’sschooleducation.Everybodywouldbetheretoday—Ihaddemandedit.Iwasdeterminedthe“team”thelawpromisedwouldactassuchandwouldincludemeintheprocess.Buttoaccomplish thatgoal, Ihad tocalmmynervousstomach. Ialsohad totransmuteragetorighteousoutrageandcontrolledpowerhereandnow.Other parents took advocates with them to thesemeetings in order tostandup toa room fullofdistrict specialistsand fight for their children.ButIdidn’thaveanadvocate,andso,takingadeepbreath,Iopenedthecardoortodothejobmyself.

I strode across the parking lot, head up, shoulders back, using eachsteptobuckmyselfupa littlemore.Walkingthroughthedoor,myeyesswepttheroom,makingasilentheadcountoftheimpressivegroup.Allpresent and accounted for. The principal sat at the head of the table,even though Mrs. Spader, as Rex’s teacher, would be conducting themeeting.Otherwise, the team included the school psychologist, Karen,the vision specialist, the orientation and mobility specialist, theoccupational therapist, Coach Gary for adaptive P.E., the speechpathologist,and,uponmyexpressedrequest,Rex’saide.

Thedoorcloseddecisively,asthoughacourtwasnowinsession.AsIsatdown,alleyeswereonme,andIfelttheintensityofthatmomentinthedepthsofmysoul.Iknewjusthowmuchwasatstakerighthere,witheachwordhavingthepower toeithermendandempoweroraggravateandundermine.Andmyson’sfutureinthisschoolhunginthebalance.

Rex’s teacher called themeeting toorder, looking first atme, directlyacrossthetablefromher,andtheninturnattheotherparticipantsatthetable. “We aremeeting today to discuss some concerns Rex’smotherhas regarding his education.” Then facingme, she said, “So go aheadandbegin,Cathleen.”

Takingalastsilentbreathtosteadymyself,Ilookedateachpersoninturn,eachmemberofmyson’steamIhopedtodrawintoagreaterspirit

of collaboration. I had plannedout each issue andwould be careful toblend any suggestion and concern with suitable appreciation for thepositives. And I knew some parts of his school worked well, like hisorientation and mobility instruction that had led to breakthroughs inallowinghissensitivehandstouseawhitecaneeffectively toguidehiswalking,or theeffortsofhis instructionalaides toassisthim throughouttheday.Butthen,lookingacrossthetableatMrs.Spader,somethinginherlook(wasshejusthumoringme?)mademelosemycomposure,andsuddenlyanythingpositive Imighthavementionedasawarm-upgaveway toawholeslewofnegatives. “Everydaywhen IpickRexup fromschool,he’sjustexhausted,andhe’sbecomingmoreandmoreapatheticand nonresponsive when I ask him about his school days. Afterobservinghimintheclassroom,Iunderstandwhythatis.”Ihadn’tmeanttojustlayitallout,butthereitwas.

Histeachercutin,defensive.“That’sthesamethingwe’retryingtoaddressintheclassroom:hisapathy.It’ssodifficulttomotivateRexandkeephimontask.

Yousawthat.”

His teacher cut in, defensive. “That’s the same thing we’re trying toaddressintheclassroom:hisapathy.It’ssodifficulttomotivateRexandkeephimontask.Yousawthat.”

I leanedforwardinmychair,pressingmyhandsintothetable,hopingthepressurewouldhelpmerefrain from jumpingonherstatement.Notwantingtoplayaroleofprosecutor,Ispokecommandstomyself.Pause.Takeabreath.Okay,go. “Butwhy isheapathetic?Theotherday,Rexcouldn’t focus on his Braille. Yes, that I saw. But he wasn’t apatheticabout phonics—in fact, he jumped on every answer. It seems like anaturalthingtowanttobepartofthegroupphonicslesson.”

“Rex has special needs that have to be addressed,” the teacherretortedbrusquely.“KarencomestoteachRexBraillethreetimesaweeksohe’llbeabletoreadandwrite.Thatseemslikeitshouldbeapriority.”Mrs.SpaderthengavemethatpatronizinglookI’dcometohate.

Ididn’twanttoanswerherdirectly,notwhenshespokeinthattone.SoIaddressedhisBrailleteacher.“I’d liketotalkaboutBraille inaminute,but first I’d like to know,Karen, if youcanscheduleRex’s service timeoutsideofthegroup’stime?Rexalsoneedsphonicsskills,andheneedstoworkwithotherkids.”

Karenlookeduncomfortable,shiftedslightlyinherseat,andsaid,“No.It’s the only time that works into my schedule. I have kids with visualimpairmentsinthreedifferentdistrictstoprovideservicesfor.”

Thatworksintoherschedule?Icouldn’tjustletthatpassbyme.“Isn’tspecial education supposed to put the child first and work around hisneeds,nottheneedsoftheteachers?”

Karendidn’tanswer,butMrs.Spaderdid. “We try thebestwecan toworkwithintheconstraintsofthesystem.”

IfeltasthoughIwasbangingmyheadagainstadouble-enforcedironwall of budgeting and scheduling issues. To pursue that at this pointseemedfutileandwouldprobablytakethesteamoutofthemanyotherconcerns Ihad. Isqueezedmyhands together, tryinghard tosuppressfrustration, and took aim at a very critical issue. “I can appreciate howexcessiveyourworkloadmightbe,butthatonlyleadsbacktowhatyourtimeisreallyaccomplishing.IwatchedRexwithyouforfiftyminutes,andhe was inattentive to the point he almost fell out of his seat! And hisBraillepagewasallbutemptyattheend.”Iwonderedwhattheseotherspecialistsherethoughtaboutthat.Didtheythinkthattypeofasessionwas normal? Or acceptable? I felt a nervous sweat building from thisemotional issue.Karenwas staringdownat her handson the tableasthoughbreakingeyecontactwouldsomehowstopmefromsayingwhatIwassaying.ButIcouldn’tstop,becauseIwasamotherfightingforherson.“Ithinkyou’dhavebetterluckgettingRex’sattentionbymakinghisworkmoreengaging,byhavingmorelifeinyourvoice.”

WhenKarendidn’treplyimmediately,Mrs.Spaderjumpedonit.“Whatdoyouwantustodo?MakeschoolagameforRex?”

“No,butitdoesneedtobemorestimulating,”Icountered.

“Stimulating how?” she asked. “By making him dependent on overlyexaggeratedspeech?Hewon’t findthat in therealworld.”Shepaused,then added with a touch of impatience, “And I think we’ve had thisdiscussionbefore.”

Whydoessheinsistonbaitingme?IthoughtasItappedmyfingersonthe table to calmmynerves.Ever sincekindergarten, I hadvoiced thenecessityofspeakingtoRexwithananimatedvoiceinordertogainhisattention. It seemed an obvious necessity, given his blindness andoverdependenceonauditoryinput.Weseemedtobeatastandoffontheissue,andmy frustrationwasmountingaswell,having to return to thisoldissue.“Butwe’renottalkingabouttherealworld.We’retalkingaboutschool,andmotivatingachildwithspecialneedstoaccomplishaboring,academicschool task.What is oneverywall of every classroomhere?Brightlycoloredartwork,pictures.Numbersandletters.Whyisthat?”

The principal was smiling, presumably acknowledging the learningenvironment in her classrooms. “To stimulate and encourage learning,”shesaid,thenaddedreflectively,“forthesightedstudents.”Shenodded,asiftosay,Makessenseablindchildwouldneedsomestimulationofadifferentsort.

GratefulI’dscoredapoint,Ididn’twanttoletthemomentumslide.“Dothesightedkidsexpecttofindpurpleelephantsorgiantnumbershangingfromtheskywhentheygooutsidetheclassroom?”Iletthewordshangforthebriefestsecond,glaringandobvious,thenadded,“Sowhyisn’tmychildreceivingequaltreatmenttostimulatehim?”Couldn’ttheyseewhathe needed? Didn’t they know by now? My stomach tightened at thethoughtthattheyreallydidn’t.“IsthatfairtoRex?”

Therewasamomentofsilenceintheroom,noonedaringtotouchthatone.Instead,histeacherchoseadifferenttrack.“Cathleen,evenwhenIspeakloudlytoRexhedoesn’tstayontask.Hehasbehavioralissuesweneedtoaddressbeforeanyotherteachingtechniquewillhaveachanceofkeepinghimontask.”

I felt thecolorrisingtomycheeks,knowinghowmuchmysonhadtocontendwithonadailybasis.IthankedGodthatbehaviorwasn’toneof

them.“Youkeepsayingthat—behavior,behaviorplan—butIcan’tforthelifeofmefigureoutwhatyou’rereferringto.”

“Refusal to do simple tasks,” she said matter-of-factly. “You saw ityourselfintheclassroom.WeallknowRexcanwalktothesink.Butthatday,herefused—andasimplesituationbecamecomplicated.”

“Refused?” Iblinked inamazement, feelingadisconnectbetweenherwordsandwhatIknewtobereality.“Rexwasn’trefusingtogotothesinkthatday.Hewasunableto.There’sabigdifference.”

“Unableto?”shesaid,incredulous.“Allhehadtodowastakeacoupleofsteps—”

“Acoupleofstepsthathecouldn’ttake!”Iblurtedoutasthetensionintheroomescalated.Howcoulditbethattheyjustdidn’tunderstandthecomplexity of what Rex was dealing with? That they thought he wasbeing lazy or contrary? That they could apply some quick-fix behaviorplantosomethingneurologicalinorigin?Relivingthattraumaticsceneatthesink, Ihadnochoicebut towalk them through it. I tookamoment,willingmyself toconvertangerand frustration intoanemotionalplea tohelpmyson.“Idon’tthinkyoutrulyunderstandwhatRexgoesthrough.Mysonwastryingwitheverythinghehadtogettothatsinksohecouldgo outside and be with his classmates. But his senses becameoverloaded.Firsthegetspulledbyonekid—thenbumpedbyanother—turned thiswayand that.Whenablind child can’t get hisbearings, heexperiencesspatialchaos.Thenaddtothatthefaucetturningoffandon,gratingonhisnerves,withkidsrushingaroundhimandall theirchattersetting off his autistic sensitivities, and hewas completely disoriented.”Histeacherseemednoncommittal.“Itwasasifhisbrainjustcouldn’ttakeitanymoreandshort-circuited.Ilookedaroundtheroom,hopingbeyondhope that some comprehensionmight dawn. Then, pleading, “Couldn’tyouseethat?Don’tyouknowwhatblindnesstogetherwithautismcandotoachild?”

Mrs. Spader just stared back, not giving an inch. Either she didn’tbelievemeorshedidn’twant tobelieveme,because thatwouldmeanherstudentwasafarmorecomplexpuzzlethanshehadrealized.“Ithink

IknowRexprettywell.I’vehadhimeverydayinmyclassforsometimenow.”

Whydidshe think Iwasherenemy?Weren’tweon thesameside—working for Rex? I caught her testy tone but refused to match it,continuingmyemotionalpleainstead.“AndIthinkthere’salotaboutmyson that none of us really understands. He has a fragile and variableneurological system that doesn’t produce the same thing day to day. Iknowhowhardthatistoworkwith.Believeme,Iknow.”Ithoughtbacktosomany challenges I’d faced day in and day out to address that veryissue. “But that’sour job,” I said, throwingmyself into the teambasket,desperatetobeheard.“Yoursandmine,toworkfromRexoutward,notfromwhatwehopeheisorwhathewouldbeinaperfectworld.”

Ilookedateachfaceinturn,andeveryonewastunedintoeverywordnow.“AndIbelievetherearesomecriticalpartsofRex’seducationthatare failinghim. It’s obvious that hisneedsareenormous, so I think it’scrucialthattheareastheteamtargetsarerelevantforhislifeandnotjustwastinghistime—andthetimeofthepeoplewhoworkwithhim,”Isaid,lookingfirstatKarenthenateachmemberoftheteaminturn,tryingtogettheideaofcollaborationandteamworkacross.

Stillsureofherselfandherdecisions,histeachersaid,“Believeme,weare targetingareas thatarevery relevant toRex’s life, suchasmakinghimmoreindependent.”

“And you’ve achieved some good results on that, I agree,” I replied,acknowledging the point. “But let’s talk about an area where he’s notgettingresults.Didyouknowthatonly10percentoftheblindpopulationreadsBraille?”Iasked,havingjustlearnedtheshockingstatisticmyself.Mrs.Spader lookedassurprisedas Ihadbeenbythestatistic,butsheremainedsilent.“So,why,after twoyearsof failingtodiscriminateevenbetween twoBraille letters, is Rex still being force-fedBraille?He canwriteit.Buthecan’treadbackawordofwhathehaswritten.Sowhat’sthepoint? I’dbebored todeath too.And Iprobablywouldhave justashard a time staying on task if I had to spend hours at a deskmakingbumpsonpaperthathadnomeaningforme.”Whoops!Ididn’tmeantosay “bored to death.” Thatwas a bit strong.But the subject is just too

emotionalforme.Inspiteofmyemotions, Imanagedto levelmyvoiceand ina follow-the-logickindofwaysaid, “So isn’t thatalsoawasteofKaren’stime...andthedistrict’s?”

“SoyouwanttogiveuponRexbeingliterate?”histeacherasked,abithuffy.

“Of course not,” I said. “But obviously, with a 10 percent statistic forBraille,it’snottheonlyoption.”Ihaddonemyduediligence,someeye-openingduediligence,andhadcometothismeetingprepared—notjustwithconcernsbutwithsolutions.Afterdoingsome research, it seemedhard to believe that this educational “team” had never discussedalternative means for Rex, a blind and very tactile-defensive child, toachievetheimportantgoalofattainingmaximumliteracy.Ithadn’ttakenmuchonmypart todiscover thepervasiveuseofcomputersandvoiceactualization for that very purpose. Given Rex’s impressive auditoryskills, itseemedano-brainer,butclearlythisteamneededtobefurthereducated in literacy options for the visually impaired. “Rex is a goodspelleranddoeswellinphonics,solethimusethosestrengthsinawaythat gets him positive reinforcement. I’m talking about computers. I’msure his piano keyboard skills would translate to an awareness of acomputerkeyboard.”

ThenIwalkedthemthroughmyvision.“Hewill learntotype,andwiththe screen-reading technologyavailable for theblind, the computerwillread back his finished product. And he’ll love it!” I said, absolutelyconvinced. I couldevenpictureRexgettingall excitedbyasomewhat-roboticcomputerreadingbackhiswork,wantingtotypefasterjusttogetthat “fun voice.” Then, staring his teacher straight in the eye, I addedwhatIhopedwouldbetheclincher.“Andthatwillgivehimthemotivationto ‘stayon task.’” I emphasized thewords that seemed tobe theclassmantra,amantratheyclaimedwasimpossibleformyson.

Therewassilence in theroomforamoment,while theteamdigestedthe import of my words. It was clear that a computer for Rex was acompletelynovelideatothisteam,althoughasateacherofthevisuallyimpaired, Karen certainly knew the option existed. Was it anotherbudgeting issue that had made her keep silent? I’d heard that school

districts advised teachers not to inform parents about potentially costlyprograms or technology options for their children.Meaningwe parentsneeded to find out for ourselves what’s out there for our kids. Mrs.Spaderlookedatthevisionspecialist.“DoyouthinkRexwilleverlearntoreadBraille?”

Karenlookeduncomfortablewiththeattentiondrawntoher.“Hemight,”shesaid,mumbling,clearlynotwantingtocommit.

“Might?” I almost screamed, having run out of patience on the issue.“Andyou’vebeenworkingwithhimthreetimesaweekfortwoyears,andhestill can’tdistinguishana froman l?And thenwhenhe finishes theeffort, he’s so drained the rest of his day is a struggle. Is that the‘appropriate’ education the law guarantees Rex will have?” The wordshadjustcomeout,buttheydidn’tsayenough.So,withclenchedfistsandfiercely maternal determination, I let out what I was really thinking.“You’renotjustwastinghistime,you’rekillinghimintheprocess!”

His aide was nodding, looking at me, encouraging me to stay thecourse.Shedidn’tdareaddher input,butshewas theonewhohad tobattle with an exhausted boy all the time, so I imagine she hoped Iwouldn’t backdown.At thesame time, comprehensionappeared tobegradually dawning on Mrs. Spader, both in terms of my owndeterminationandintermsofanalternativeliteracyoptiontoBraille.And,interestingly, she almost looked relieved, as if she’d foundan out.Sheturned toKarenagain, avoidinganyacknowledgement that she’dbeenunawaretheoptionevenexisted.“CanwegetwhatweneedforRex—computer,software?”

“I’lllookintoit,”shesaid,inwhatItooktobeapartialaffirmation.

“IwillneedtobeinformedonyourprogressingettingitforRex,”Isaid,withwhatwasmeanttoleavenodoubtastomydeterminationtofollowthrough.

“Youwillbe,”saidMrs.Spaderasthoughshewantedthismeetingtobeover.Shewasn’tcomfortablewithaparentstandingupandchallengingher.Shewasusedtorunningtheshow.ButIwasn’tcomfortablewitha

teacher’segowhenmyson’swell-beingwasatstake.Sotoday,whethershelikeditornot,Iwastheonerunningtheshow.

“Okay.Thenwecan talkabout theotherseriousconcern Ihave.Andthat’sRex’ssocialization intheclassandintheschool.Heneedstobeworkingandplayingwiththeotherkids,notoffincornersorworkingwithadults all the time. That’s why he’s here. That’s why I brought in thekeyboard. It wasn’t meant to be a pacifier. It was supposed to be acreative bridge to his classmates. But you only let him play with hisheadphoneson—sohewon’tbotheranyone—insteadofusingittofosterinteractionwithhispeers.Doyou realizewhatanamazinggiftmysonhas?I’veevenbeentoldrecently thathe’samusicalsavant—agenius.But you use his gift in away that further isolates him.My son is herebecauseIwanttodowhateverIcantointegratehimintotheworld.Butifyourviewofhim isso . . .distorted . . .you’vealreadydoomedhim tofailure.”

I hadn’t planned on making speeches today, but I suddenly realizedwhatanopportunity this forumhadgivenme.Thiswassupposedtobe“special”education,and Ihad tobelieve thateveryperson in this roomhadchosentheprofessioninordertohelpkidswithuniqueneeds.Iwascrying for them to shelve egos and get back to the heart of theirprofession. Thatwas the onlyway formy son to succeed. Iwanted tobelieveitcouldhappen,tobelieveitwasn’ttheirintentthatwasdistorted,just their perception. For me, that meant their ability not just to thinkoutsideofthebox,butinRex’scase,togetridoftheboxaltogether.

Ispokecalmlybutwithquietdetermination.“There’snodenyingmysonhas some challenging weaknesses. But he also has some amazingstrengths.Surelythereisaway,betweenus,totakethosestrengthsandusethemcreativelytomakehimpartoftheworld.Tohelphimovercomehisweaknesses.Isn’tthatthepointofeducation?Forallchildren?”

CHAPTERTWELVE

AftermathTherewillalwaysbechallenges,obstaclesand

lessthanperfectconditions.Sowhat.Getstartednow.

—MarkVictorHansen,author

Everyone left the I.E.P. roomquickly—hurrying back to duties, perhapsalready mentally trying to reschedule missed service time with otherstudents—but not me. I walked out slowly. Did their hurried departuremeantheyhadalreadyshiftedgears,pushingplansforRexsomewhereinto the back of their minds . . . and priority lists? Were theyembarrassed? Had I gone too far? The questions were suddenly toomany,thedoubtsoverwhelming.Crossingtheparkinglotbacktothecar,gonewasthestrideofconfidenceI’dhadgoingintothemeeting.Nowmystepswerecareful,poised,somy legswouldn’tgospaghetti likeRex’sused to.Myarmswere limp,hangingatmyside likedeadweights,andmybodyfeltheavy,drained.I’dgivenitallIhadandcouldonlypraymyvoicehadbeenheard.

Leaving that room, the truth hit me square in the face, and it wasominous—the law could provide services for a child on paper, but itcouldn’tguaranteethequalityofthoseservices.Thatmeantthelawwasonly as effective as the people carrying it out—the teachers, thespecialists, and the way they collaborated and shared ideas. Effectiveteamwork was a must with a child as complex as Rex, and as such,appeared to be the joker in his educational deck of cards.Would thisgrouptrulygetbehindmysonandusehisgiftstohelphimgainaccessnotonlytoamoresuitablecurriculumbuttohispeers?Orwouldtheybetoooverextendedtogive thenecessary timeandcreativeeffort itmighttaketodothat?Inspiteofmyemotionalpitch,sadlyIfeltthejurywasstillout.Reachingmycar,Iplacedmyhandsonthehoodtobracemyselfasmy shoulders slumped forward, my head drooping. I was sapped,snapped,worn.

Butthen,cuttinginonmythoughts,Ibecameawareofsomefootstepsbehindme,rushingtocatchup.Iturnedtoseetheprincipal.Whatnow?Ithought.Butshewassmiling.

“Cathleen,”shesaid,abitoutofbreath. “I’mglad Icaughtyou. I justhadtosayawordtoMrs.Spaderonherwaybacktoclass,butIwantedto let you knowhowmuchwe loveRexandhowcommittedweare totryingtogetitrightforhim.”

“Thankyou,”Isaid,allowingsomeofthetensenessinmyshoulderstoseepaway.“Ireallyappreciatethat.”SuddenlyI felt likeachildneedingreassurance.

Patgave it tome in the formofabigmaternalhug thatmadeall thedifferenceintheworldandsaid,“WhatIappreciateisparentswhostandbehind their children.” Pointing back to the door, she went on. “And Iappreciatedyourwordsinthere.Wedogetbusy,andthere’salotaboutthesystemthat’sfarfromperfect,butIhopeyoubelievewewanttogetitright.WewanttohelpRexsucceed.AndIbelievewecandoit,”shesaidwithdeterminationinhervoice.AndthensheaddedjusttheguaranteeIwashopingfor:“Ifweworktogether.”

THE PRINCIPAL and I had barely finished the expression of belief inRex’sfuture,when,onceagain,hewastheonewhobegantostiruphisownkettleofhope.

Two of the biggest questions any of us had about Rex’s cognitive,emotional development were soon to be answered.Would he ever beabletomovepastconcreteexperienceintoabstractreasoning?Todate,he couldn’t. And would he ever understand and express complexemotions, or would autism keep them locked up? Like hiscommunication,whichtendedtoberoteandscripted,hisunderstandingoftheworldwaslimitedtotheveryconcrete.Withtheflagrantexceptionofmusic,whereimprovisationwashispreferredgenreandcreativitythenameof thegame,everythingelsewasvery literal inhismind,andheshowednoevidenceofimagination.WhereasRex’smusicalworldwasakaleidoscope of myriad colors and shapes and forms, the rest of hisworldwasprettymuchblackandwhite.Orwasit?

Shortly after the I.E.P. meeting, Rex came home from school with alibrarybookinhisbackpack.Sincehewenttotheschool libraryonceaweek, I wasn’t surprised by the presence of a book, just the particularsubjectof theonehe’dchosen:EnergyMakesThingsHappen.Energy!Nowtherewasanabstractconcept.

TuckingRex in bed that evening, I knewhewould ask for his librarybook.Hedidn’tdisappointme,andassoonashehadthecoverssnugglyuptohisneck,hesaid,“IwanttoreadEnergyMakesThingsHappen.”

Heedingmyson’scallforabedtimestory,Iopenedthebook.Hisfacewas calmandattentive, like it alwayswaswhenhe listened to stories.However, I wasn’t sure exactly what he got out of all that intenselistening, since he struggled to answer even basic comprehensionquestions linked to a story passage. Tonight I would be reading him ascienceselection,evenmorecomplexthanusual.

“‘Didyouknowthatenergycomesfromthefoodyoueat?Fromthesunandwind?’”The languagein thebookwassimple,but theconceptwasnot. “‘You need energy to play baseball, or to run, or . . .’” hoping tostretchmyson’scomprehension, “toplay thepiano. ‘Acargetsenergyfromfuel.’Rex,yougetyourenergyfromeatingoatmealinthemorning.”Thebookwentontodiscussthedifferentformstakenbyenergyandhowitistransferredamongpeople,machines,andnature.IaddedexamplesthatRexcouldrelateto.“Youneedenergytorun.Andwhenyourun,youuseupyourenergy,soyou’retiredandyou’rebreathinghard,huffingandpuffing,andyousay,‘Mommy,Ineedtostoprunning.IneedtoresttogetmoreenergysoIcanrunsomemore.’”Afewmoreexamples,totrytodrivehome theconcept,and Isummedup. “SoRex, like the titlesays,EnergyMakesThingsHappen.Doyouunderstand?”

“Yes, Mommy, you understand!” With that I kissed him goodnight,havingnoideaifhehadgraspedanyoftheenergyconcept.

Then came morning. My seven-year-old boy got out of bed a littlegroggy,andas Ipulledhispantsandshirt fromhisdresser,hewalkedintothebathroom,ashedideverymorning.ButthenIheardhimcallingouttome,alltirednesssuddenlygonefromhisvoice.“Mommy,Mommy!”

“Whatisit,sweetie?”Iasked,alreadyheadingforthebathroom,fearingafaultyaimandasoggyfloor.

Just as I reached the door to see my bare-bottomed boy standingproudlyinfrontofthetoiletandbubblingwithexcitement,heannounced,“Look,Mommy,I’musingmyenergytopee!”

I’musingmyenergy topee!!!Yes!Andquiteanenergeticarc itwas,perfectlyaimed,descendingstraightdownintothetoiletbowl!

Hegotsuchakickoutofhimselfwhenheknewhegotthingsright.AndI got such a kick out of him because he was Rex, the one and onlyoriginal, doing things his way and in his time. He was beautifullyguileless, and I wondered if he would always have that pure, childlikespirit. Ihopedso,because itseemedtomethat itwas in thedepthsofthat innocence thatGodhad chosen to infuseHis grace.Sometimes itwas cute, just like this bathroom scene—a snapshot, as if He waswinking at me through my son’s blind eyes, letting me know He wasthere.Andsometimesithitmestraightintheheart.

ITWASapristineSaturdaymorning,andRexandIwerewalkingalongoursandybeach,handinhand.Thetidewasout,butinsteadoffocusingonthetidepoolsandallthesealifetherecedingwatershadleftstrewnabout, I was giving all my attention to the little boy at my side. Hispersonalitywaspushingthroughmoreandmore.Eversincethedayhehadshownheunderstoodwhatenergywas,we’dbeenusingit.Infact,ithadbecomeoneofhisfavoritewordsthatcouldbethrownintoavarietyof situations: “Look, Mommy, I’m playing the piano with good energy!”Followed by a big smile and a lively beat.Or, “We’re going to the gasstationsoourcarhasenergytogotoschool.Vroom!Vroom!”

Walking in the sand,wewere now learning to nuance it. “Rex,we’reusingourenergytowalk,but ifwewalkfasterwe’llusemoreenergy,”Isaidpickingupthepace.Movingintoaslightjog,Iadded,“Andifwerun,wewilluse...?”Ipaused,waitingforhimtofillintheblank.

“Moreenergy!”heshouted.

“Yes,but ifwerun toomuch,wewon’thaveanyenergy leftandwe’llhavetostopand...?”

“Rest!” Rex was very good at filling in appropriate responses, whichhelpedhimfollowandbuildlogicalsequences.

“Sowecanget...?”

“Moreenergytorunsomemore!”Rexsaid,tuggingatmyarm.Buthewasoutofbreath.

“That’s it, sweetie.But I’ma little tired.Sowhydon’twesit hereandrestforamoment?”

Rexagreed,usingmysentence,and turning it intohisownquestion.“Mommy,shallwesithereandrestforamoment?”

“Good idea, Rex!” I sat down, and he plopped into the sand. Therewasn’tanothersoulanywhereonourstretchofbeach,andIfelttheglowofthesunwarmingme,thesoundofwavessoothing.“Rex,doyouhearthewaves?”

“Thewavesarecrashing!”hesaid,excited.“I’dliketotellastoryaboutalittleboynamedRexwhogoestothebeach.”

Putting himself into adventures was his favorite thing to do.We toldstoriesalot,inordertohelphimdevelopanimagination,aswellasworkon language. The storyline always had to be concrete and related toactivitiesfromhislife,butthenwecouldinterminglecharactersfromthevast wealth of audio books he listened to. Since Rex’s world revolvedaround Rex, in the manner of a very young child, the stories we toldnormally had him as the hero, going to battle against such foes asCaptainHookorShereKhan,thegreattigerofJungleBookfame.

“GoaheadRex, tellmeastory,” Isaid,despiteknowinghemeanthewantedmetotellhimthestory.NormallyIwouldbeginandthencraft itintoateameffort,cueinghimupforhisturnwithaquestionorablanktofill in.Soon, Ibelieved,hewouldbeable tosequenceawholestoryonhisown.Ifeltitcoming.Therewasalotlockedupinmylittleboythatjust

neededtobepulledout...creatively.

“IwantMommytotellyouastoryaboutRex,”hesaid,rightoncue.

I couldn’t help smiling. Sometimes it wasmy son’s predictability thatfilled me with love, and sometimes it was just the opposite—that jaw-droppingsurpriseyoudidn’tseecoming...

Ibegan.“Onceuponatime,therewasalittleboynamed...”

“Rex,”hejumpedin.

“AndwhatwasRexdoing?”Iasked.

“Rexwasrunningonthebeach...withgoodenergy!”hesaidproudly.

“Yeah.That’sright.Rexwasrunningonthebeach.Andthentherewasawave.Wayoutintheocean.Abig,giantwave.Andwhatwasthewavedoing,Rex?”

“Thewavewascrashing,Mommy!”

“Yes,andwherewasitcrashing?”

“Thewavewentcrash!”hesaid.Then,laughing,added,“ThewavewascrashingonRex’sback.AndRexfelldown,andhewassmashedbythewaves.”

“No!Hecan’tbesmashed!OurheroRexmustbesaved,tocomebackanotherday.SowhosavedRex?WasittheLittleMermaid?”

“No!”saidRex.

“WasitHercules?WhocouldhavesavedRex?”Iasked,expectingtheHerculeannod,orperhapshiscurrentfavorite,RobinHood.

Rexhadhisownidea.“ItwasMommy.MommysavedRex!”

Heturnedtomeandthrewhisarmsaroundme.Isqueezedback,hard,notwantingtoletgo,knowingonlythedepthsofloveIhadforthischild

and,onoccasions like this,howsafe that lovemademefeel. “Andyousavedme,Rex.Youdid.We’reafamily.Wetakecareofeachother.”

Rexpulledoutofthehug,toosoonforme,butit lookedasthoughhehadsomethingonhismind.Ithoughthewantedtogoonwiththestory,buthesaidonly,“Mommy?”

Hisfacewaspointedatminewithsuchintensitythatitlookedalmostasthoughhecouldseeme.“Whatisit,Rex?”Iasked.

He was trying to process something. I could tell by his concentratedlookthatitwashard.“Mommy?”wasallhecouldgetoutagain.

Trying to coaxwhatever itwasout of him, I said encouragingly, “Youhavetotellmewhatyou’rethinking.”

Thestrugglecontinuedasmyson rockedbackand forth in thesand.“Mommy?”hesaid.Iwaited.“Mommy?”herepeated,louder,likehewastrying to get enough energy, revving up an internal motor to get themomentumtogethisthoughtout.“Mommy?”

“Rex?”Isaid,givingaslightnudgetopullhisthoughtforward.

“I love you,Mommy!” he burst out, triumphant, his facemirroring hiswords,tellingmehowrealtheywere.

Iloveyou,Mommy!ThefourwordsI’dbeenwaitingsolongtohear,notknowingifthey’devercome,oriftheydid,thatthey’dbetrulyfelt.Thosefourwords tookmybreathaway . . .but thenpumped it rightback intome,fullerandmorealive.Howmanyspecialistshadwonderedaboutmyson’s ability to feel complex emotions? Sure, he played emotions likehappy and sad on his piano. But what about emotions like anger,friendship...orlove?AsIthrewmyarmsaroundmyson,Iknewthathewas theonewhohad justsavedme fromall thosecrashing,smashingwaves.

AsIthrewmyarmsaroundmyson,Iknewthathewastheonewhohadjustsavedmefromallthose

crashing,smashingwaves.

REXFINALLYgothiscomputeratschool. Ithadbeena ten-weekwait,butthatwasbecausehehadfirstgottenthesoftware,whichdidn’tworkon any of the current classroomcomputers. That, of course,meant hewouldneedanewcomputer.So,moreredtapeandwaiting.Butnowatleast he was equipped. In the meantime, his teacher of the visuallyimpaired had ceased and desisted with the Braille, which meant Rexwasn’t exhausted and apathetic all the time. I believe that fact alonehelpedhimtomakehisrealbreakthroughs,suchasgraspinganabstractconceptlikeenergyorexpressingthetrueemotionin“Iloveyou.”Gonewere thosedrainingBraille sessions!Over thenext coupleofweeks, itbecameobviousRexbeganto lookforwardtothedayswhenhewouldsee his vision teacher and the work they did together on his newcomputer.Iknewthisfromhismorningspiel,whichhadnowchangedtoincludeeventsheanticipated,suchas,“TodayisTuesday,andI’mgoingtoseeKarenandworkonthecomputer.”Hisbigsmilesaidthingswereturning around. Yet, in spite of the progress in some areas of hiseducation,IwonderedwhatwasbeingdonetopromoteRex’sinteractionwithhispeers.Hadn’tthatbeenapriority?Yet,todate,Ihadn’thadmuchfeedback in thatcriticalarea.Hadallmywordsbeenwasted, fallingondeafears?Orearsthatweretoobusytoreallyhear?

Sittingatmyowncomputeronenight,withRextuckedintobed,Iwasreflectingonhisdependenceonthepeoplearoundhim—startingwithmeandthenhispianoteachers.Butthatwasaneasydependence,becauseIwasdependablewherehewasconcernedandhewasmusicallygifted.But what about his reliance on his teachers at school where he wasanythingbutgifted?Hisdependenceonthesystem?Thefactwassimple—there weren’t enough teachers of the visually impaired (TVIs) to goaround.

Blindnesswasalow-incidencedisability,andsonotenoughpeoplehadgoneintothefield.BeforetheyhadhiredKaren,ourdistricthadnoonetoworkwiththeblindstudentsforalmostanentireschoolyear.Therewerejust no applicants, no one qualified. Learning about the deficit ofspecialistsintheareaofblindness,Ihadmadeabigpersonaldecision.Iwouldn’t just complain about the system and its problems; I would get

insideit.Thatmeantgoingbacktoschoolmyselfandbecomingtrained.How many other children were out there floundering in the systembecause they were misunderstood or misplaced? How many parentsdidn’t knowanybetter?Howmanyotherparents felt lonelyandcutofffromnoncommunicativeteachers?

I felt the call to lend a hand and bring parental perspective into theclassroombyearningacredential.Thelawgavemeparentalrights,butacredentialwouldgivemeequalprofessional footing toassuremyrightswouldbeadheredto.Theinspirationcouldn’thavecomeatabettertime.Iwouldneedtogetbackintoworklifesoonanyway,andI’dwanttodosomethingIwaspassionateabout.JustasIwasclickingontheWebsiteoftheonlyuniversityprograminSouthernCaliforniatotrainspecialistsintheeducationofthevisuallyimpaired,thephonerang.

“Hi,it’sPatCairns,”saidthevoice.Ihadneverreceivedacallathomefrommyson’sprincipal,soIhopeditwasn’tbadnews.“IjusthadanideaforRex—howtohelphimmixwithotherstudents.Doyouthinkhewouldliketoplayhispianoforouryearlytalentshow?”

Ihadavisionofanauditoriumfullofkidswatchingmyson’samazinggiftatthepianoandsaid,“Yes.That’sawonderfulidea.”

“ItwouldgivemorekidsthechancetohearRexplay,andparentstoo.Ithink it would be great for everybody,” Pat said. “It might just be thebridgewe’relookingfor.”

“Yes, thankyou,” Isaid,ata loss forwords. “Thankyou.Yes, I’ll lookintoit.”

Theauditionsforthetalentshowhadalreadybeenheld.ButItookRextoarehearsaltotrytogethimintotherosterafterthefact.Themotherwhowasorganizingtheshowtookonelookattheblondboyfeelinghisway with his cane and said, “Of course, he can play something.” Hisauditionnotonlygothim in theshowbutwonhim thespot rightat theendoftheprogram,thecovetedfinale.“Justwhatweneeded,”shesaid,after he’d played and sung a bluesy version of one of his Beatlesfavorites“WhenI’m64.”“Agoodcloser!”Shehadasmileofwonderon

her face, the lookofonewho’ddiscoveredahiddenpearl,and Ihadasmileinmyheart.

Vocalists,pianists,skits,anddancers.ThestudentsinRex’sschoolhadmany varied talents. And they were supportive of one another,encouraging,clapping.But theotherkidsallkneweachotherandwerefriends. They knewRex, too, but only as that little blind boy—the onetheysawontheplaygroundwithhiscaneandhisadultaide.Sure,someof them went up and greeted him, but they rarely stayed to play. Hewasn’treally their friend.SohowwouldthisgroupreactwhenRextookthestage?

TherewasahushintheaudienceasIwalkedRextothepiano.Therehadbeentalk that the littleblindboycouldplay thepiano,butwhatdidtheythinkthatmeant?“MaryHadaLittleLamb”?Orweretheyexpectingaduet?Mommyplaysthehardpart,thensonpipesinafewnotes,aswedidwithourstorytelling?

I helped him center himself on the piano bench, helped position hismike, then stepped aside. His schoolmates were all sitting in the frontrowswithparentsbehindashebegan.Butbeganwhat?Thiswasn’tthesonghe’d planned.Was thisGodwinking again?Rex broke his script,surprisingusallashebegantosingtheblackbird’ssong.

His sweet voice floated wistfully over the room, asking for eyes thatcouldseeandwingsthatcouldsoar,ashewoveBach-liketrillsintothemusicalline,givingthepiecelightnessandair.

Therewasacollective,spontaneousgasp fromtheaudience,parentsandkidsalike.Thiswasnotwhatthey’dbeenexpecting.Notatall.

Therewerenomoresoundsfromtheaudience,and,except forRex’spuresopranoglidingatophischrystallinepianonotes, theroomwassoquiet, it was almost solemn. No shifting or shuffling, no sidewayswhispers, just reverence,as if theywere listening toaprayer.Was thismyson’sprayer?DidhewantitforhimselfasmuchasIdidforhim?

I can do it! As though he were willing himself to fly alongside the

blackbird.His fingers and voicewere now in full flight, soaring beyondlimits,beyonddisability.Andwiththespotlighthittinghisblondlocks,likealightfromheaven,hiscryforfreedomsangoutintotheroom.Icanfly,Mommy!

Intothelightofthedark,blacknight.

Therewasapause,asuspensionofdisbeliefas thenotes trailedoff.Andthekidswerethefirsttoshout.“Rex!Rex!Bravo!Greatjob!”Andtheparentswere the firston their feet.Andallwereclapping,heartfeltandreal. And Rex felt all of it, how special everybody thought he was. Ilookedbackandforthfrommysonjumpingupanddownonstagetohisfellow schoolmates, my eyes clouded by tears. Then I glanced to theback corner of the auditorium, where the principal stood nodding. ShewassmilingasIcaughthereye,asiftosay,“Wejustgotitright.”

WEWEREplanningatriptoanamusementpark,andwehadinvitedafriend whose high school daughter, Jessie, babysat Rex from time totime. The daughter would come and so would her brother, Brian, whowas a year older than Rex and had always treated him very well. IthoughtitwouldbegreattohaveapeernearRex’sagecomeandspendsometimewithus.However,boyswillbeboys,andtheyhavetheirpals.SoBrianaskedif itwasokayifhebroughtalonganotherfriendaswell.Thinkingthedaymightbeevenbetterwithacoupleofboys,Igavemyokay. We would all go in one car, my friend’s family-sized silverSuburban.

Themorningcame,andthebigSuburbanlumberedintoourdriveway.Rex and I walked out, equipped with our backpacks filled with all thenecessities for such an outing,most importantly, the “food support” hisongoing feeding issues required, but also a Walkman equipped withnoise-cancelling headphones in case the clanging and clanking andoverallhullabaloobecame toomuch forhim.My friendwassmilingoutthecarwindow,andsowasherdaughter.

“Rex,areyoureadyforafunday?”Jessieasked.

“You’rereadyforafunday,”Rexsaideagerly,lovingallthosespinning,

twisting,jerkingridesheknewwereawaitinghim.

The twoboyswere in theback. IcouldmakeoutBrian,but Icouldn’tseetheotherboy’sfaceuntilIopenedthedoortothecartogetusin.MyheartstoppedwhenIsawthefaceloomingfromthebackseat.Nothim!Hewasolder,butIcouldn’tmistakethatface.Icouldseethatsameface,laughing and smirking atmy son, while he and his buddy waved theirhandsinfrontofhisunseeingeyes.Thatbullyfromtwoyearsago!Theawful scene flooded my consciousness, and my stomach knotted as Isteadiedmyself for yet another confrontation,whenBrian said, “This ismyfriend,Drew.”

“Hello,Drew,” Isaid icily,notacknowledgingourpriorrun-in.“I’msureyou know Rex,” I added, with a steely look.Why was this boy beingforcedonus?Ididn’thavelongtowaitfortheanswer,butitwasn’twhatIexpected.

“Yes,IknowRex,”hesaid,andthenspokenottomebuttomyboy.“Hi,Rex.Doyouliketogoonrides?”

“Youliketogoonrides,”Rexanswered.

Drewwassmiling.WashegoingtoridiculeRex’spronounconfusion?Iwasreadytostopanysuchthingdeadinitstracks,butwhathappenednextdidjustthattomeinstead.

Theboy’svoicewasfullofrespectashesaid,“That’scool,Rex!Ilikerides, too,especially rollercoasters.Maybewecouldgoonsomeridestogether.”

IlookedfromDrewtoRex,tryingtoassesswhatwasgoingonhere,asIhelpedmyboyclimb into thecar. “Well,we’ll see,” I said,not trustingthisboy.Brianclimbed into the farbackof theSuburban to leaveroomforRexandmeonthemiddleseatnexttoDrew.

TheboyreachedovertohelpRexwithhisseatbeltandsaid,“Ithoughtyouweregreatinthetalentshow,Rex.You’reagreatpianist!”

“Thank you,” Rex said, beaming. Howmy child came alive when he

was praised and appreciated! That was it! This boy had seen anothersideofRexinthetalentshow,sonowmysonwasapersonandnotjust“thatblindkid.”

“Iplaythedrums,”DrewthrewouttoRex.Thenheadded,“Maybewecouldgettogethersometimeandjam!”

Rexremainedsilent,notanswering.Butitdidn’tdiminishtheoffer.. .thepotential...andthewonderofit.

Mean-spiritedbully turnedpotential friend?Howcould thatbe?Was Idreaming?OrhadGodheardaprayerinRex’ssong?

CHAPTERTHIRTEEN

MusicallySpeakingOnehastofindabalancebetweenwhatpeopleneed

fromyouandwhatyouneedforyourself.

—JessyeNorman,operasinger

Rex’spianoteacherRichardMortonheardsomethingaltogetherdifferentinRex’s song. In fact, not just in “Blackbird,” but ineverynotemysonplayed.PerhapsheallowedthatGodwasplayingaminorrole,buttohimRexwas firstand foremostascientificmystery,an intellectual teaser,alimitlesssourceoffascination,frustration,andoverallawe.Eversincetheday he had used theword savant to describeRex, his obsessionwithRex had been growing. In fact, Richard insisted on spending somuchtime with him, to develop his genius, that our forays up the magicalmusical mountain to work with his other piano teacher Lynn, becamefewer and fewer until they stopped entirely. Richard’s increasingdominationofRexdidn’tleaveusthetimeforotherteachers.Asaresult,thebalancewehadfoundpreviouslybetweenscienceandGodinRex’stwopianoteachersbeganshiftingdangerouslyoutofbalance.

Aprodigiousmusicalsavant!Ihatedthelabelthatreducedthebeautyofmychildtoasortofscientificanomaly.Yet,atthesametime,thismanwas devoting himself to developingRex’s pianomusic. I couldn’t denythat.SoI foundmyselfcompliantthedayhesaid,“Would itbeokayif IbroughtacameramantofilmalessonwithRex?”Hewantedtobeginasortof“runningrecord”ofmyson’smusic,andpresumablyhisownroleinthatdevelopment.Ifoundmyselfraisingmyeyebrowsbutonlyvoicingminor reservations the day he announced, “I’ve been nominated as aVolvohero formyworkwithRex.”Heexplained that someone throughhis “savantnetwork”hadputhisname intoanational contest toawardeverydayheroes.Thenacoupleofmonthslater,hewonthirdplaceinthesamecontest,andIcongratulatedhimbuthadanuneasyfeelingaboutthe whole thing. However, when I learned he was discussing my littleboy’s life and development, in addition to his music, with a variety of

scientistsandresearchersinthefieldofmusicology,Itookhimtotask.

“Notonlyisitunprofessional,”Isaid,strugglingtokeepmyvoicelevel,“butyou’renotqualified tounderstandRex’sdevelopment.”The ideaofmysonbeingreducedtoascienceprojectwasrepugnantandabhorrent,and it leftmecold.So, likeamusicalcrescendo,whathadbegunasawhisper of unease began to resonate louder and louder until it wasbooming inmyheartasa resounding internalconflict.ConflictbetweenmydutytohelpdevelopthispreciousgiftGodhadgivenmyson,andmydutytoprotecthimintheprocess.Itwasaconflictreadytoexplode.

SowhenRichardcametothedoorforhislessonwithRex,lookinglikethecatwho’dswallowed themouse, I immediatelywonderedwhatelsewas in theworks. I didn’t have long towait. “I’ve been contacted by aproducerfrom60MinuteswhoheardaboutmyworkwithRex,”hesaid,tryingtoactnonchalant,buthisexcitementwasnonethelessbubblingoutattheseams.“SoIsentoffthevideosIhadfilmed.”

“You did that without asking me?” I said, annoyance trumping anyamazement that Richard had been able to spread word of Rex’sexistencesofarandsofast.

A flush swept up his face from hiswarp-speed networking jaw to hisbaldinghalfmoon.“Wellitallhappenedsofast,”hesaid,inlameexcuse.“Thisisallgoingtoofastforme,”headded,likehe’dsetsomeautomaticprocess inmotion overwhich he now had no control. Like hewas thevictim and not the perpetrator. “I didn’t think, didn’t want . . .” He wasstammering undermy steely gaze. “But you know people are going towant—”

“What?”Icutin.“Whatarepeoplegoingtowant?”

Not answering my question, he shrugged his bearlike shoulders andtried a helpless grin. “Well, you know it’s imminent. It was going tohappensoonerorlater.”Likehe’dbeensweptinnocentlyintothedestinyofitall!“Rexisjustso...interesting.”Hewassmilingsheepishly.

“Ofcourse,he’sinteresting,”Isaid,softeningjustatouchatthethought

ofmy extraordinary boy. Then I threw out a warning. “But he’s also abeautifulchild,andnotascienceproject.”

In appeal, he said, “The world should know about Rex.” He paused,clearlytryingtosellme,andsaid,“Alotof incrediblethingscouldcomeoutofitforhim.It’ssortofmind-boggling,whenyouthinkaboutit.”Acoygrintuggedatthecornersofhismouth.

Of course Iwantedgood things formyson. I pausedbriefly, but inaway that must have told him I was backing down, and so he leteverything out. “The producer is already planning on calling SusanRancer and Dr. Treffert after she speaks with me again,” he said,referring to the perfect pitch expert he’d been consulting with and theworld-renowned savant expert, Dr. Darold Treffert, who had firstdescribedasavantashaving“anislandofgeniusinaseaofdisability.”

Furious now, I snapped. “No! Did you hear what I just said?” Ichallenged.Butthenseeingmysonoutofthecornerofmyeye,Icaughtmyself...andRichard.Practicallypushingthismanintoanotherroom,Isaid,“Rex,honey,IhavetotalktoRichardforjustasecond.I’llberightback.” I had one tone formy son, quite another for thisman, and thesecond we were out of Rex’s earshot, my honey tone turned back tocarefullymeasuredice.“I’mgoingtosayitagain.Rexisachild...notan experiment.And Iwon’t allowa bunch of scientistswhodon’t evenknow him to gather around somemedia table to discuss him. Do youthinkIwanttheworldtoviewmysonasanoddity?”

Myeyeswereboringthroughhimnow,andhispinkflushturneddeepcrimson as he began stammering anew. “Well it probably won’t . . . Imean itwasn’tsure. . .Shemightnotwant . . . Itwasreallyaboutmytechniques...”

I cut himshort, tooangry to listenanymore. “We’regoing to skipourlessontoday.You’dbettergonow.Idon’twantRexgettingasupsetasIam.Rex’smusicisforhim,andIdon’twanttodiscussthisanymore.”

Thedoorshut,andItookadeepbreath,knowingIwouldcancelRex’spiano lessons foraweekor two,ormaybeamonth, Iwasn’tsure.We

justneededabreakfromthestormIfeltbrewing.

Acoupleofweeks later, lackingababysitter, I tookRexwithme toacommittee meeting for a fund-raiser for the Blind Children’s Center.Wantingtogivebackto theschool thathadgivenRexhisstart in life, Ihad joined the planning committee for the annual Tom Sullivan BlindChildren’s Center Celebrity Golf Classic. Several committee memberswere seated around a large table chitchatting, while we waited for thetournamenthost,TomSullivan, toarrive. I tookRex to thepiano in thecorneroftheroomsohecouldplayforafewminutesbeforethemeetingbegan.Well, it didn’t take long. A littleMozart, a touch of Bachwith aBeethoven swirl, and the room had fallen silent. The man we werewaitingforwalkedintotheroom,butnooneinterrupted,andTomhimselfstopped still to listen. Since Tomwas also blind, he didn’t immediatelyknowwhowasplaying.Butbeingamusicianhimself,hewascaptivatedbythesound.ThedirectoroftheCentergotupandwhisperedinTom’sear.Iwatchedasagrininstantlyspreadtheexpanseofhisface.

“Rex! My man! That was great!” He was still smiling as the directorguidedhiminourdirection.“AndIhaveanidea,Rex.SoI’mjustgoingtotalktoyourmomforaminutehere.”Ilovedthewaythismanspoketomyson,notaroundhimorabouthimright infrontofhisfaceas ifheweredeafinsteadofblind.Tomknewwhatbeingblindwas,andheknewwhatrespectingablindchildmeant.“Cathleen,Idon’tknowwhatyouandyoursonfeelaboutthisidea,butwewouldbehonoredifRexwouldconsiderplayingsomepiano for the tournament. Ifhewould . . . I think itwouldmakethedayreallyspecial.”

It was a decision for my son, not me. When asked if he wanted toperform,herememberedtheapplausehe’dgottenatthetalentshowandsaid,“Everybodywillclapsoloudly!”Thatwashisanswer.Yes,hewoulddoit.

After a couple ofweeks’ break in his lessons,Richardbegan comingbacktoourhometoworkwithRexonasetfortheevent.Hewouldbeperforming foursongs—threevocalshis teacherhadarrangedandoneinstrumental.Thedoorhadjustclosedonalessonwhenourphonerang.Itwasawoman.“Hello.MynameisShariFinkelstein,andI’maproducer

for60Minutes.”Iwasabitdefensive,notknowingexactlywhatRichardMortonhadsaid,ornotsaid,with regard tomyson,but I foundmyselfwarmedbythetoneofthiswoman,whoturnedouttobeanewmotherherself. “Iwatchedavideoofyourson,and Ihave to tell you, Ihad toshow it to my husband, which I normally never do. But this was soamazingandcute Ieven foundmyself tellinghim, ‘Ohyouhave toseethispart,’or‘Waittillyouseewhathe’sgoingtodonow.’”

All of a sudden, speaking mother to mother with the producer, theproposed60Minutesprojectseemedmoreahumanintereststoryaboutan extraordinary child than a freaky science study, and we set up anexploratoryconferencecallwithanassociateproducertospeakmoreindepth.Duringthatcall,itwasinspeakingaboutthestuffofRex’slife,theastounding extremes that had become our norms, that I found myselflivingourlivesthroughexternaleyes.“That’sincredible”and“fascinating”werethereactionsthatdrewmebackintotheintrigueofmyson’sbeing.ShariaskedifRexeverperformed.Inasmall,somewhat-hesitantvoice,Isaid, “Actually,hewillbeperforming foraBlindChildren’sCenter fund-raiser inacoupleofweeks.”At that,shesaidshemight like to film theevent.Butthatwouldbecontingentonherfirstgettingago-aheadonthepiecefromherboss,correspondentLesleyStahl.

I wondered how the famous correspondent would respond to Rex.Would she be as captivated by my son as Shari seemed to be? Theresponsecameacoupleofdayslater,whenSharicalledtotellmeLesleyhadansweredherprojectproposalwithane-mail,whichcontainedonlythree words—“I Love Rex!” Those three words confirmed my owndecisiontoallowtheprojecttomoveforward.Itrustedthesetwowomentogetitright.

THEDAYofthetournamentarrived.AndIpanicked,wonderingwhatI’dallowedRex togetus into,sincehehadallbut refused topractice thesongsfortheevening’seventintheweekleadinguptothisday.Hehadnever had to work on a song repeatedly, to polish it so that it wasperformanceready,letalonefoursongs.Thedownsideofhisgeniuswasareluctancetoplayasongoverandover,cravingnewinputforhisbrain,preferring toplay somethinghe’d just heard.So,whenhe’dplayed thesongsasarehearsal,ithadbeenhalf-heartedandlackadaisical,causing

hisfingerstofumbleandmakemistakes.Okay,sotherewewere!Ididn’thaveanyideawhathishandswouldproducethatevening.Then,too,hehadbeenclearinghis throat constantly lately, leadingme tobelievehehad some undiagnosed allergies. And that might signal death to hisvocals.So,with both pianoand voiceasunknowns, thingsdidn’t bodewellfortheevening’smusicalpresentationasIarrivedatthetournamentinthemorningtohelpsetupRex’spiano.Whatwehadleftwasthechildhimself,theglowingsmile,thatheartylaugh.It tookjustonescreechingfeedbacksoundfromamicrophoneweweresettingupforRex’spianotorealizehowmuchatriskthatwastoo.Maybemyson’swholebeingwastoofragileforanyofthis.Rightnow,IfeltIwastoo.

The golferswere arriving, checking in and hurrying out to the puttinggreensanddriving range forsome last-minutepractice. Iwalkedout towatchacoupleofputtsandairmybrain foraminute.Theeventhost,TomSullivan,wasthere liningupa twelve-footputt,aidedbyhiscoachwhowouldserveashiseyes.Tomwouldbeplayingthiswholeeighteen-hole course blind. This amazing man, who exuded confidence andoptimism, liked toquip, “Golf iseasierwhenyou’veneverseenawaterhazardorasandtrap.”Maybethat’swhatIneededtodo,closemyeyesandtrust.Tomtappedtheball.Itwasveeringtotheleftbutsloweddownjust as it approached the hole,which allowed the slant of the green tonudgeiteversoslightlytotheright.Andclink!Tomsmiledashehearditdropintothecup.

“Greatputt,Tom!”Iexclaimed.

“Cathleen!”Herecognizedmyvoiceinstantly.“How’smyboydoing?”

“He’s at school for a couple of hours, but he’s looking forward totonight,”Isaid,lackingconvictioninmyvoice.

Tompickedupon it immediately. “Just letRexenjoy theevening,”heencouraged.“That’stheimportantthing.There’snopressure.”

No pressure? Three hundred guests, golfers, and wives sitting in anelegantly set banquet room, with all eyes onmy son? Just close youreyesand trust.Trust! I cando it, I thought, headingback to thedining

room.

That trust lasted all of five minutes, until the van carrying the 60Minutestelevisioncamerasarrived.TheywouldbepoisedthateveningtocatchRex’s everymove, every sound, bringingmy child’s performanceintothehomesofpeopleacrossthecountry.Therestofthemorningwasablur.ImetShari,theproducerforthe60Minutespiece,whohadflownacross thecountry for theevent.Thesoundmanandcameramanwerebothsettingupequipment—cameras, lights—whileRex’spianoteacher,Richard, was supervising piano positioning. We argued about it. Hethoughtmore of the audience should seeRex’s hands; I thoughtmoreshouldseehisface.Mechanicsversusthechild—oldissuesIdidn’twanttomar theday.Everythingwill beokay, I toldmyself as Iwalkedbackoutsidetogetabreakfromthetension.Thegolferswereheadingdowntotheirgolfcarts.OnlyTomSullivanwouldnotuseacart.Hewouldwalkthecoursehimself,withhisgolfcoach.Thatwayhecouldgetthefeelofthe course, its slopes, its angles. As host, Tom would kick off thetournamentwithhisfirstdrive.Andsoasthelastofthemajesticallysungtenornotesof theNationalAnthem floatedover the lineof golf carts, IwatchedTom’s coach linehimup for the shot. I heard the sharp crackandsawtheball flyingstraightdown the fairway.AndTomwasoffwithhisathleticstridetotracktheball.Closeyoureyesandtrust.

THESILENTauctionhallhadcomealive—golferswerecominginoffthecourse as their guests were already busy drinking cocktails andsocializing,whilemarkingdownnamesandfiguresonthebiddingsheetsattachedtoauctionitems.Soonthepartywouldshiftintothediningroom.Rex had arrived that afternoon dressed in a white dress shirt and off-whitepants.Hedidn’thaveadressjacket,andevenifhedid,givenhissensitivities,itwouldhavebeentooconfiningforhisarms,inhibitingthearmmovementsheneededtoplaythepiano.Unfortunately,thecamerasandlightsdidn’tlikewhite.ShariexplainedtomethatwhitewouldcauseRex’sfacetobewashedout.Sonowhewassportingaredsweaterthatmatched the casual golfing attire of the players. And I did notice thehealthycolorinhisfacewhenhesaid,“IwanttoseeGrandpa.”

Myeyesscannedtheroom,lookingformydadandtheothermembersofourparty.“He’llbeheresoon,sweetie.Andwhoelseiscomingtohear

youplay?”

“AuntRoz...andDaddy!”Rexsaidbeaming.

“That’s right,Rex, yourdaddywill come tohear yourbeautifulmusic.So,yourdaddyandmydaddywillbothbehere.”

“And Jenny and Raffaella too,” Rex added, knowing his full list ofpersonalattendees.

“That’sright.Wehavealotofpeoplecoming,don’twe?And,ofcourse,Richardwillbehere.”

“They’recomingtoseeme!”hesaidproudly.

“Theysureare,alongwitha lotofotherpeople,” I saidsurveying theroom.IcaughtsightofmyfatherandAuntRozskirtingtheirwaytowardus through the throng.My father was handsome in a dark blue sportscoatandmyauntRozlookedherusualelegantself,astheygrinnedtheirwaytous.Ihuggedthemeachinturn,asdidRex,andIfeltthewarmthof knowing that my son and I would have an entourage tonight—thesupportofthoseclosesttous.

“SoRex,areyoureadyforyourbignight?”myfatherasked.

“I’mready,Grandpa!”Rex said itwith a certainty in his voice I didn’tfeel.

Theothermembersofourpartyarrived,andaftergreetingsandhugs,IleftthemtobrowsetheauctiontableswhileItookRexintocheckonhispianoanddoasoundcheck.Weneededtomakesure thesound levelwasrightnotonlyfortheroombutforthefuturetelevisionaudience.

The banquet room had been transformed—the tables all impeccablyprimpedandpreened.The stagewasadornedwith colorful, decorativeawards baskets and live-auction items. And there in the center, sittingaglow in a pool of light, stood Rex’s piano. The CBS cameras nowflankeditonallsides—hiseverymove,everygesturewouldbecaptured.Nothing could be dissimulated, hidden. The soundman would place a

microphoneonRex.Thennothinghesaid,nonotehesangorsoundhemadewould be left unheardeither. Themoment of truthwasuponus.Would Rex play half-heartedly as he’d done for the past week, notwanting to put in the work it took to polish his pieces? He’d been theepitomeofaseven-year-oldwho’dsethiseyesontheprizeofaudienceapplausewithoutconsiderationfortheworkheneededtoputintogettingthere.Orwould theaudiencechangethat,givinghimthatgoodenergy,theadrenalinehisbodyneeded,toexecutehispianopiecescleanly?

The roombegan fillingwithpeople,and theevening’s festivitiesweresettoshiftintohighgear.IwasvaguelyawareofsmilesinourdirectionasIfocusedmyattentiononmyson.Rexneededtobecomfortable,notoverwhelmed by external stimuli, in order to optimize his potential forsuccess.Ihadbroughtsometapeswithournoise-reductionheadphonesjustincase.Richardwastryinghardtomaintainacalmexterior,butthebeadsofsweatonhisforeheadbetrayedhisanxiety.Shariwassmilingatme,encouraging,andIappreciatedit.Onceagain,Iwonderedwhatwe’dgotten ourselves into. More than that, I wondered if this was the rightthing for my son. Sure, he thought he wanted to do it, but he hadn’tappreciatedtheprocessonebit.NorhadI.Ithadbeenalotofwork...andworry.Ifthiswasright,shouldn’tIbesweptoverbyawaveofpeacebynow?

Allthedinerswereseated,andTomSullivantookthepodium.Thatwasmy signal to begin my move with Rex to the stage. “We have a veryspecialmusicianherewithustonightwho’sgoingtomakeyouforgetallthosebunkers youvisited today,”Tom ribbed. “In fact, this youngman,Rex,mightevenmakeyouforgetaholeinone.”

I guidedmy son lightly as hewalked sure-footed up the steps of thestage.“I’mgoingtosharewithmyfriends,Mommy,”RexsaidasIhelpedhimontothepianobench.Share!Whatawonderfulwayofthinkingofit.

“Yousureare, sweetheart.Therearea lotofpeoplehere to seeyouplay,” I said softly, feeling more than seeing the hundreds of curious,expectanteyestrainedonoureverymove.Therewasasuddenhushinthe room—alldinner chatterabortedas thecrowdwonderedwhat theywereinstorefor. IsatdownnexttoRex,knowinghisperformancewas

outofmyhands,likesomuchofhislife.AllIcoulddowassupporthimtothebestofmyability;therestwasuptohim—asalways.IlookeduptoseeTomsmilingatus fromthepodiumontheotherendof thestage. Icouldstillheartheresolutecrackofhisopeningdrivedownthefairway,andseeitsgracefularcasittookoff.NowitwasRex’sturn.

“SoRex,whatwouldyouliketoplayforyourfriends?”Iaskedhimintothemicrophone.

“ ‘When I’m 64,’” he said, announcing the Beatles songRichard hadworked into a jazzy number for him. The one he hadn’t played for histalentshow.

Heplayedandsangthefirstversewiththeaudiencehangingoneachnote.Hewasholdinghisown. I tookabreath,and that’swhen Iheardthe beginning of an agonizingly drawn-out, throaty sound, amplifiedunmercifullyforalltohear—Rexclearinghisthroat.He’dbeendoingitsomuch lately; I’dhadnightmaresofhimbattling the insurgentphlegmallthewaythroughhisperformance.IcringedbutknewtherewasnothingIcoulddo.Miraculously,his fingersdidn’tmissabeatas theunforgivingmicrophonecaughttheparticularlyslowandgutturalsoundattheendofthe verse. That sparked a wave of laughter in the audience, perhapsbecauseof the reminder thatRexwas justa child,with seven-year-oldhabitsinspiteofthesophisticationofhismusic.

Thenapplause followed,either toencourageorbecause they thoughtthe song was ending. Would it throw Rex? Disturb his timing in thesecondverse—theonehehadstruggledwithduringpracticebecauseofthelargejumpsitrequiredhistinyhandstomake?Iglanceddiscretelyatmy son as he played through both laughter and applause, not at alldistracted.Onthecontrary,itsparkedhimon.Hisfacelitupatthesound—thelaughterwasjoytohim,andtheapplausewasthefuelhecraved.That’s the way his body worked, as an energy sponge. His handsbecamestronger,morecommanding,ashestruckthekeyswithgreaterprecisionandhisvoicesangoutwithincreasedvigor.Henowknewhowmanypeoplewerewatchinghimandhowenthusiastictheywere!Andhelovedit!Ashereachedtheendofthethirdverse,towhichRichardhadaddedarousingbluesfinale,thewholeaudiencewasclappingalongto

thefinalbeats.ItspurredRexontothefinal,“Willyoustillneedme,Willyoustillfeedme...causeIgethungry...whenI’m64?Yeeaaah!”

TheapplausewassothunderousthatIthoughtRexmightfallbackwardoffhisbench.Hiseyeswentroundwithexuberance,andhisteethshonebright in the spotlights as he leaned back on his tailbone and startedflapping his arms rapidly in his gesture that said excitement wasoverwhelminghisnervoussystem.Hewaslaughingwithsuchabandon,Iwantedtojustletitgo.ButIknewheneededtoreigninhisemotionstoamanageablelevel,inordertocontinue,soIputmyarmtenderlyaroundhisshoulder,inagesturetocalm.

Theapathyof theprevious fewweekswasclearlyadead issue.NowweweretippingthescaletotheoppositeextremeasRexbegantheonlyclassical piece on the program, Beethoven’s Sonatina in F. It requiredspeedandprecision,with the leftand righthandsplayingagainsteachother. He played the piece as though he had pressed the “automatic”buttononhishands,settingthemloose,whilehismindremainedcaughtupintheaudienceresponse.Hiseyeswerestillalightandfaraway,notencapsulatedinthemusic,andhepunctuatedintermittentphrasesofthemelodywithlaughter.Itwasfun.Itwasfunny.Itwasjoyous.NoonehadeverhadsuchagoodtimeplayingthatSonatina.Itwaslikehecouldn’tbelievehimselfwhatwashappeningtohim.Ashelaughedhiswayintothefinalnotes,thecrowdroared, lovingthechildandhisunconstrainedjoyevenmorethanthemusic,withspectatorsandperformerfeedingoffeachotherinasortofescalatingresponsecrescendo.

Theexpressiononmyson’sfacebeaminginthespotlight,sparklinglikea rareandpricelessdiamond,sweptoverme likeaheavenly torrent,arevelation. Music was Rex’s heart, his soul, the special gift God hadgivenhimtocommunicatelikenoother.Itwashislanguage—hisgrace.Iwouldkeepfightingtheexternalbattlesofour lives, tryingtopushbackthecloudsofourexistence,buthiswasaninternalbattle,andthelookonhisfacesaidhisspiritwaswinning.

CHAPTERFOURTEEN

BeyondtheMusicHopeisthatthingwithfeathersthatperchesinthesoul

andsingsthetunewithoutthewordsandneverstops...Atall.

—EmilyDickinson,poet

Idon’tknowwhereRex’smusicisgoinginthefuture.Hopefullyasfaraspossible.ButIthinkthemostimportantthingisthatitconnectshimtotheworld,thatitgiveshimasenseofwhoheis,thatithelpshimtosocialize.Youknow,helovestheapplause.Itreallyhookshimintotherestoftheworld.”Mywords,answeringLesleyStahl’squestion,saiditall.TheyalsobroughtRex’s60Minutesprofile,“MusicallySpeaking,”toacloseasthelogoclocktickedinthestationbreak.

Rex’sclassmatesclapped,shouting,“Greatjob,Rex!”

“Thank you verymuch,” saidRex, laughing, ona high fromwatchinghimselfonTV.

Hisprincipal,PatCairns,whohadbeensosupportiveeversincehe’denteredherschool,walkedovertowherewesatonthecouchandsaid,“Thatwas beautiful.” Shewas beaming. I felt relief that the profile hadtruly caught the beauty ofmy child, and that I’d been right to trust thefilmingtogoforward.Wehadgatheredataclassmate’shomefora“poolandviewing”partysothatRexcouldbewithhispeersaswewatchedhisprofileairontheyear’sseasonpremierefor60Minutes.

But aftermonths of excitement surrounding this profile, I wanted ourlives to return to a semblance of normalcy. Inevitably that meant achangeof piano teachers, a change fromRichard’s obsessionwith thescienceof“savant”backtothepurityofthechild,greatcomposers,andthemusic.Fortunately,thisalsocameatatimewhenRichard,whowasapianoteacheronlybypassionandnotprofession,wasstrugglingtokeepup with the infinity of Rex’s musical brain, feeling the weight of his

charge.

Chanceledustoabrilliant,somewhat-eccentricmanwhohadbeenaconcert pianist andwho, incidentally, had vast experienceworkingwiththeblind.HisnamewasDavidPinto,andheknewhowtoteachRexfromday one. His own quirkiness and originality was the perfect match forRex’s own. He met Rex on his own level—bringing his own creativegeniustowhateverchildlikeneedRexhadatanygivenmoment(andthisfromamaninhislatefifties).

BythetimewemetDavid,Rex’shand’shaddesensitizedenoughtonotonlytouch,butactuallyseekoutthe“soothing”feelofedgesandcracksandseamsindifferentsurfaces,whetherwood,concreteorfabric.Itwasanother repetitive,obsessivemovement,butone thatwasdiscrete,andwhichalsoseemedtocalmRexandprovidehimwithasenseoforder.Whenhewas“feelingseams”asIcalledit,Iknewhowharditwastogethisattention,andDavid learnedquickly.Duringhis first lessonwithhisnewteacherDavidsaidheneededtoworkone-on-onewithmyson.SoIplantedmyself a little hesitantly, but silently (as requested) in a distantcorner of the room,andwatchedmyeight-year old sondashoff a fewnotes on the piano. But then as David started to say something, Rexremovedhisrighthandfromthekeys,droppingittoexplorethelegofthepiano bench, and discovered grooves carved inwood!He couldn’t pullhishandawayashis index fingercircled the legagainandagain.AndwhatDavidhad intended to say faded inRex’sunhearingear to “blah,blah,blah,”avoicewithnomeaningtotheautisticbrainintentonfeelingpianobenchgrooves.WellinsteadofattemptingtoinstructRextogethishandsbackon thepiano,whichRexwouldhaveheardasmore“blah,”thisclevermansatdowncross-leggedon the floornext tomysonandsaid,“thesegroovesdofeelprettygood,shallwecountthemtogether?”AfterjoiningRexincountingpianobenchgrooveshemovedthenumericidea along to beats in ameasure.AndmovedRex’s hand back to thekeys,frommindlessrepetitionbacktopianonotes.

InRex’sentirelifeIhadnevermetateachingprofessionalofanykindwhocouldestablishaninstantrapportwithmyson.Hehadbeenabletokeephimcaptivatedandinvolvedfromtheveryinstanttheymet,andallwithoutany input fromme.AndsoDavidPintobecame theundisputed

master of helping Rex learn not just music, but musicianship throughcreativefun.HewasintheprocessoffoundingtheAcademyofMusicfortheBlind,whichwouldincorporateotherskills,suchasrhythmanddanceandsocialskills,alongwithpiano,todevelopthewholechild.

What could be better than this ingenious and holistic approach oflearning to tango and tap-dance in addition to piano? But the problemwasthesixty-milecommutethroughheavyLosAngelestraffic it tooktogettohisestablishment.WecouldgoonSaturdaysbeforethetraffichit,but we also needed to be practical. And that meant finding a suitablelocal teacherwhoalsoplaced thechildbefore thescience. Ihopedwecould find local support from his original teacher, Lynn Marzulli.Regretfully,thisman,whohaddescribedmyson’sgiftasatouchoftheDivine,couldnolongerhelpus.AswithRichardMorton,RexhadmovedbeyondLynn’sskillstoteachsinceLynnwasprimarilyacomposer,notateacher. But he told us about awomanwho could sight-read even themostcomplexmusicalscores,assuringusshecouldstaybeyondRexforagoodmanyyears.HernamewasSaraBanta,andshewastheheadofinstrumentalmusicatPepperdineUniversity,rightnexttoourhome.

Wemade an appointment tomeet her in amusic rehearsal roomoncampus, where we found the woman alongside twomassive Steinwayconcertgrandpianos.Isawkindnessinhereyesasshesmiledatusinwelcome.“Iwatchedthe60Minutespiece,andI’mhappytogiveitatry,”shesaid,thenadded,“butI’mafraidIdon’tknowanythingaboutteachingablindchildtoplaythepiano.”

“Don’tworry,Sara.All you reallyneed toknowaboutRexyou’ll learnfrombeingwithhim,notfromabunchofreports.Rex’stwoformerpianoteachers didn’t have any experience teaching a blind child either. Thetrainingcomesinthedoing.”

Sara invitedRex to sit down. I helpedmy sonpositionhimself at thenearby piano as shewent around to the second piano.He had beguntesting the notes before he was even seated and immediately beganimprovising,lovingthisbig,resonantinstrument.

Sarahadanuncertain,questioninglookonherface,notreallyknowing

wheretobeginorwhethersheshouldcutinonhismelody.Buthewasn’tabouttostop,sofinallyshesuggested,“Wouldyouliketoplaysomethingforme,Rex?”Hisvoiceremainedsilent.Hehadn’tevenheardher.OnlythedepthandresonanceofthisSteinwaycouldspeaktohim.

“I don’t think he heard you,” I said, already beginning the Rexeducation. She would teach him piano, and in return, she would berequiredtolearnaboutthisspecialboy.

Saraprobablywasn’tusedtostudentsignoringher,butshecaughtonquickly. She watched for an opening, a break in his notes, and thenjumped inonher ownpiano,mimickinghismelancholic style for a fewmeasures.Thatgothisattention,andhelistened,intriguednow.Shelethim back in. Then after he’d played his own measures, he stopped,expectant.

Sara’s fingers turned melancholy to lightness and cheer, calling it a“Mozart style,” with trills and runs up and down the keys. Cheery wasgood,andRexgiggled,hardlyabletowaitforhisturn.Hepracticallyfellonthekeyswhenshestopped.Thedialoguehadbegun.

Her eyes widened as she watched him play back to her. Then sheshookherheadatthespeedandcreativityofmyson’sresponses.“Noneofmycollegestudentscanrespondthatquickly,thatintuitively,”shesaid.Shebegannoddingherheadnow,effusively,andsmilingbroadly.Andasherhandsjumpedbacktothekeyswithextravigor,sheadded,“Thisisgoingtobefun!”

Andwith that,Rex and I foundwhatwould becomeour newmusicalhomeatPepperdineUniversity,withalovelywomannamedSara.Itwasawonderful feeling,havinghismusicaldevelopment inhercapableandcaringhandsalongwiththoseofDavidPintoandhisacademy.Itallowedme a new sense of peace, having found two solid sources of musicalinput for Rex. And hismusic beganmoving forward at an acceleratedpace.

Meanwhile, I felt theneedto findotherwaystoconnecthimto life, tokeepalltherestmovingforwardaswell.Ashissensorysystemmatured,

allowinghim toprogressivelyovercomehis touchandsoundaversions,the world was becoming increasingly accessible. This allowed us toaccept some invitations for Rex to perform his music at variouseducationalandinspirationalvenues,requiringtravel.Ithoughthismusicprovided a means for Rex to have new and varied experiences thattaughthimmoreabouttheworldbeyondthemusic—ameanstoanend,aconnectortolife.

“Getreadyfortakeoff,”hewouldshoutexcitedlyatthenewexperienceofanairplane.Or,“Touchdown,”followedby“Putonthebrakes,”astheplane would land and come sliding to a halt. Or, “Make the fire gowhoosh,” as our hot-air balloon soared over the same desert, afterperforming his piano at a YPO (Young Presidents Organization)educational conference. Rex’s cry for adventure was obvious in hisappealstoothers—topilotsanddrivers.ButtherewasanothercryI feltevenstronger—acrytodoforhimself,acryforfreedom—thecryoftheblackbird.

Rex’s father, William, lived in Utah, a stone’s throw from various skiresorts,andsoitwastheperfectopportunitytogetRexonskis.Asluckwouldhaveit,theParkCitySkiResortwasthehomeofaskischoolforthedisabled,theNationalAbilityCenter.I’dbookedhimacoupleoftwo-hourski lessonsduringourstaywithhisdad. “I’mgoing tobombdownthe ski slope,” he announced the morning of his first lesson. He wasusinghis father’swordsanddidn’tyetknow theirmeaning.Same thingforhisparkaandpowderpants.Hewonderedwhyhewaswearingthesefluffy,awkwardclothesthatmadehimstiffandroboticashetriedtowalktothecar.

We drove to the Center, which was located right at the base of themountain.We’dbeen told they’dhaveskisandboots there forRex,aswellasglovesandgoggles.Rexwasexcitedaswewalkedthroughthedoorandwereintroducedtoawell-tannedskiinstructornamedDonwhowouldbegivinghimhislesson.“I’mgoingtobombdowntheskislope,”Rexstatedonceagaintotheman.

“I’m sure you will, but first we have to get you all suited up in yourbombing-down-the-mountaingear,okay?”theinstructorsaid,notmissing

abeat.

“Okay,Don,”Rexsaidconfidently.

“First, I’mgoingtoslipa littlevestoveryourhead,Rex, justasa littleprecaution,” he announced, tying the side straps to secure the brightorangevest,stampedwithglaringblackletters,whichsaid,“BlindSkier.”Catchingmyeye,heexplained,“It’sforsafety.”

MeanwhileIwasstrugglingtogethisskibootson.“Idon’twanttogoskiing,”hecriedoutsuddenly,hispreviousanticipationnowobliteratedbyvery real hypersensitivity, as the first boot grabbed and squeezed hisfoot. His free foot started kicking forward to avoid the other torturousboot.

“It’sjustaskibootthatwillhelpyoubombdownthemountain,”Isaid,praying his still-sensitive feet and hands would not put a stop to thewholething,rightthenandthere.

“You’ll see, Rex. You’ll have a blast,” Don promised in a confident,relaxedvoicethatcalmedRex’sfootlongenoughformetosliptheotherbooton.“You’llneedsomeglovestoo,Rex,”theinstructorsaidmatter-of-factly,pickingthroughaboxuntilhecameacrossapairthatlookedaboutmyson’ssize.

However, feet were one thing, hands quite another. He batted andflailed, not letting the thing on, until I grabbed his hands, saying, “Youwon’t be able to ski without gloves to keep your hands from freezing,Rex.”Butreasonwasuselessinthefaceofthiskindofautisticsensitivity,andhisfingerscrumbledupintoaballandsimplyrefusedtobepushedintothegloves.Donraisedhiseyebrows—forafirsttime—butwentbackto thebox.This timehechoseapairofmittens thatopenedupwithazipper on the back. That might do the trick. So I uncoiled my son’sfingers,flattenedhishand,encaseditinthemitten,andzippedbeforehecould refuse.Sameprocesswith theotherhand,andhewasprotectedfromthecold.Hishandsstuckstraightoutlikerods,asthoughgettinghishands as far away from his body as possiblewould also distance himfromthemittens.Andhewasnowcompletelystiffashestoodup.

“All right, Rex, looks likewe just need some glasses or goggles andwe’regoodtogo,”Donsaid.

Butonthatone,mysonlaiddownthe“lawofRex.”“Taketheglassesoff!”hewailed,shakinghisheadviolentlyonceI’dstuckthemon.

“Okay, okay, Rex, you don’t need to wear glasses,” I assured him,removing them quickly, seeingmy son at his limit. “It’s not that sunnytoday,soyoucanjustwearyourhat.”Ipoppedhisbaseballcapontohishead, hoping it would be enough to protect his sensitive eyes. Onceagain, I found myself in that balancing act between what I knew Rexneeded for his health and safety and what his sensory system wouldallow. There he was, fighting that incessant internal battle of his own,fightingautism’s relentlessgrasponhisbrain,needing toovercomehisownbodytogetthefreedomthatwassoeasilyattainableforothers.AndIhadonlyonerecourseinitall—tomaneuvertheexternal,attempting,asalways,topavethewayforhim.

But how far should I push? I asked myself as I watched my sonseemingtowithdrawintotheshellofhisequipment.Hedidn’tevenknowwhat skiing was. It had all been my idea of something he’d enjoy,knowinghisloveofphysicalmovementandfastandjerkysensations,butmaybe he wouldn’t like it, maybe it was way too much. An outsiderlookingonmightconsiderIwastorturingmyson,forcingthisonhim.Butrememberingback,thesamecouldhavebeensaidwhenIwassmearingfoodonhisrefusinglipstogethimtoeatorforcinghimtostraightenandstrengthenhisspaghettilegswhenallhewantedtodowascollapse.Andnowhewasaheartyeaterandhadstrong,capable legs.Thiswas thesamething.IfeltGodaskingmeonceagaintostepoutinfaith.Walkbyfaith, notby sight. I had topush forward, trusting, orwe’dnever know,even though I acknowledged a fundamental difference between eatingandwalking, and skiing.Before, it hadbeen formy son’s very survivalthatIhadbeenunrelenting,andnowitwassohecouldgettheextras.Ifelt a lumpgrowing inmy throat as I remembered how farwe’d come.ThenIclutchedmyson’sstiffhand,ledhimhaltinglyoutthedooroftheCenter,downasmallramp,andontothesnow,leadinghimbeyondmeresurvivaltoward“qualityoflife.”

Donwas taking it all in stride as hewitnessed the extreme reticencethathad replacedhisstudent’spriorenthusiasm.Rexwas takenabackwhenhetouchedthe“crunchy”snow.Hehadn’tknownwhatitwouldbelike, even though I’d tried to explain it to him.He had to experience ithimself.“It’salittlecrunchier,butit’ssoftlikesand,isn’tit,Rex?”

“Yes,”hesaid,buthedidn’t lookconvincedasheplodded tentativelyforwardtowhereDonhadplacedhisskisinthesnow.

“Rex,I’vegotyourskishere,andI’mgonnajusthelpyouputyourrightfootin,”theinstructorsaid.“Justholdontoyourmom.”Withmeclutchingholdofmyson,sincehisskimittensmadeit impossibleforhimtograbanything, Don lifted his foot, placing the toe into the ski binding. “Nowstompyourheeldown,Rex.”

Andafterrepeatingthesameprocessfortheotherfoot,hewasallset,although he looked even more concerned now that his feet werecompletely imprisoned in skis as well as boots. What had he gottenhimselfinto?

Don placed a clip on the front of Rex’s skis, which connected them.“Thisistokeephisskistogether,”heexplained.“AndI’mgoingtoplaceatetheronyourskis,Rex. It’sasortofstrap tomakesureyoudon’tgetawayfrommeupthereontheslopes.”Theinstructorwinkedatmeandsaid toRex, “Iknowyou’reprobablygoing towant to leavemebehind,butwecan’tletthathappenjustyet.”

At this point my son didn’t have an ounce of his “bomb down theslopes”bravadoleft,butIwashopingoncehegottomovingontheskis,thatmighttrendback.

“I’mgoingtomoveyouforwardjustalittle,sowecangetyouusedtothefeelofslidingonthesnow,”Donsaid,pullingonthetethers.

Rex’s face registered shock at the sudden slipping movement, hishandsmovingupand tohissides,anautomaticbalance reflex. “Good,Rex.That’sexactlywhatyouneedtodotobalance,”theinstructorsaid.

Donpulledsomemore.Rexshiftedhisbody tomaintainhisbalance,buthisfacelookedfrozenwithfear.“Okay,Rex,nowtrytoslideyourownfeet.” He couldn’t do it, until the instructor took hold of his hips frombehindandhelpedhimglideonelegforward,thentheother.

Rex had a good sense of balance, but he looked so scared slippingaroundonthisunknownsurface. Iwasseriouslybeginningtodoubt thewhole endeavor. That’s when Don gave a strong tug on the tethers,jerking Rex forward too quickly. He lost his balance, and with myautomaticmaternalreactionmodealwaysturnedon,Idovetocatchhimbeforehefellintothesnow.Theweightofmyfallingsonthrewmedowninstead,withhisownfallcushionedbymybody.

JustasIwasfeelingproudofmyfastreaction,Icaughttheinstructor’slook, as he watchedmother and son lying in a heap. He had a smiletuggingathislips,asheraisedhiseyebrowsonceagain.“IwantedRexto fall,” he explained, extending a hand to help us up. “So that hewillknowwhatitis—andsohe’llknowitwon’thurt.That’stheonlywayhe’llbeabletoskiwithoutfear.”

I stood back, then, to allow the instructor to do his job. He was theexpert inteachingchildrenofallabilitiestodothis.HepromptlycausedRextolosehisbalanceagain.Butthistime,eventhoughitwentagainstmymother’s instinct, I justwatchedmysonfall.Andasheplungedintothesoft,coldsnow,Ibracedmyselfforhimtosaythatwasit,thathewasdonewith skiing now.But he did no such thing. In fact, itwas just theopposite.Tomyutteramazement,hesquealedwithdelight,laughing,histensionbrokenbythefall.Thereliefmademelaughaswell.

“Didyoulikecrashingintothesnow?”Iasked,thrilled,helpinghimbacktohisfeet.

All fear was gone from his face, replaced by new wonder andanticipationofwhatlieahead.“Iwanttocrashintothesnowsomemore,”hesaid.Thistime,Iwastheonewhoraisedmyeyebrows!

ThereweremanydifferentaspectsofskiingthatmadeRextemporarilyfreezeupagain,andnaturallyso. Itwasallunknownshecouldn’t see.

Hewasbeingaskedtotrust,tostepoutinfaithduringeachstepoftheprocess.Boardingski lifts,exitingthe liftswithafastslidingmotion, thefirstsmalldescentswhenhe feltas thoughhisskiswereoutofcontrol.ButhelearnedthatDon’scommandof“weightontheleftfoot”meanthewouldturntotheright,while“weightontherightfoot”wouldmakehimgoleft; and he began to feel the control he could exert on his own skis,slowinghisspeeddown.Bytheendof thetwo-hour lesson, thetethersweretherejustasinsurance.

It was on our last run, suitably called “Home Run,” after we hadfollowedacattrackforsometime,thatDonhadRexskidownasharperandsteepercorner thanhehadon theprevious runs.Myson’s face litup, and the slopes suddenly resounded in his laughter. “Rev up themotor!”Ishouted,addingfueltohisjoyfire.

“Iwant togo faster,”hesaid, still laughingas theslope flattenedandslowedhimdown,allremnantsofroboticRexnowdeadandburied.Donlookedtome,asthoughforpermissiontograntmysonhisrequest.

Imotionedbacktomyboyasiftosay,“He’stheboss.”

“Allright,Rex,you’reinchargeonthislastrun.Youknowhowtomakeyour turns, and how that slows you down.So I’m not going to call outturnstoyouunlesswegetintrouble.Okay?”

“Okay,Don.”

“Areyouready,Rex?”heasked.

“I’mready!”Andhewas.Clearly.Readytotakecontrol,whatever thatmeant.Onhisownskis, feelingtheexhilarationofspeed,hisbodyflewdown the slope unchecked by the tethers that were there just forinsuranceandremainedslackinhisinstructor’shands.AsIskiedbyhisside,hisfacewasalightwiththethrillandexcitementofitall.AndIfeltittoo.Gonewasmyownfearandreticence.Thiswasaboutreallyliving.

“I’mbombingdown theskislope!”heshouted to theworldashe flewfaster and faster. This remindedme of the dayRex had first taken off

running,theexhilarationofbreakingfreefromhischains.That is,until Irealized just how fast we were going and how close we were to theCenter.Amanwhosawthe“BlindSkier” labelonRex’schest removedhimselfquicklyfrommyson’spath,justasDonwasabouttopullonthetethers.Buttakingmyson’sfreedomwashislastrecourse,andinstead,he shouted, “Turn to the right, Rex,” just as we approached ourdestination.

Rexdelayedasecond,two,maybeeventhree,notwantingtohavehiswings clipped, wanting only to keep soaring. I watched a momentarystruggle between heart and mind as his mind was following orders,applying pressure to his left foot, but his heart was still flying free,bombing down themountain. I knewwhatwas going to happen in thesplit secondbefore it did, but I could donothing to stop it.His internalhesitationsenthimpitchingoverhisskistotumbleintothesnow.Iheardmuffledsoundscomingfromhimashelayfacedowninthesnow.

Poppingmyownskisoff,Iboundedtohim,notabletobearhistears.Ipulledhimup,alreadyberatingmyselfonceagainforallowingthewholething to happen, for pushing too hard for real life. But that’s when Irealized that the sound wasn’t crying, it was laughter, breathless andchoppy, but escalating as I sat him up. “I bombed down the ski slope,Mommy, and landed with a crash!” he said, laughter racking his bodynow.“Iwanttobombdownthemountainagain!”

Henotonlysurvivedthecrashlandingbutwasbeggingformore.Ifeltmy heart swelling. I knew Rex would have many more ski days—hopefullyhewouldlearntoexecuteamorecontrolled“bombingdownthemountain.” But I also knew, as my son reached out toward normalcy,therewouldbemanyotherarenaswherehewouldneedtolearntofall.Donhadgottenitright,becausethatwastheonlywayhewouldeverbeabletofly.

CHAPTERFIFTEEN

MeetingDerekFriendshipisbornatthatmomentwhenonepersonsaystoanother:

“What!You,too?ThoughtIwastheonlyone.”

–C.S.Lewis,author

Just twoyearsafter the filmingof “MusicallySpeaking,”whenRexwasnineyearsold, themysteryofRex’sgift,and fascinationsurrounding it,led toa follow-upprofilebyLesleyStahland the60Minutescrew. Thesegmentwassimplycalled“Rex”thistime,andaswithhisfirstprofile,itincluded an older, now twenty-six-year-old British savant namedDerekParavicini,asasortofbookend,aglimpseofwhereRexmightpossiblyendupasanadult.Thisyoungmanwasdescribedas“ahumaniPod”forhis ability to store in his brain every piece of music he’d ever heard.Derek was an extraordinary jazz musician, blind, and even morecognitively impaired thanRex,asdemonstratedbyhis inability toshowwhatthenumberthreemeant,oranynumberforthatmatter.Hewasalsoblondandhandsome,achiseled,olderversionofmyson’scherubicandchildlikebeauty.

A boy and a youngman leading parallel lives—separated by sixteenyears andanocean—hadnevermet. Then camean invitation tomeetDerek.RexwastenwhenhewasaskedtocometoLondontomeethisolder counterpart as part of a British production called “The MusicalGenius”fortheseriesExtraordinaryPeople,producedinconjunctionwithDiscoveryHealth, whichwould air the episode in theStates under thetitle“MusicalSavants.”Itwasachancetogazeintothelookingglassofmyson’sfuture,hismusicalityofcourse,butalsointohisbeing.Howfarhad this twenty-six-year old made it down life’s road emotionally andsocially?MightnotDerekprovidemewithabenchmarkforRex?

Aschancewouldhaveit,RexandIwouldbeinGermanyinthespringofhis tenthyear to receive theWinspirationAward forhis inspiration inhelpingotherstotakewhateverhandthey’dbeendealtinlifeandusingit

towin. That enabled us tomake only aminor adjustment to our travelplans andmake theChannel leap tomeet theBritishmusician. At thesametime,ShariFinkelsteinfrom60MinuteswasflyinginfromNewYorkto film the meeting of the two musical savants for the first time,presumablytobeusedforthenextepisodeofthe“Rex”savantsagaonCBS. By policy and philosophy, 60 Minutes didn’t orchestrate thedisplacement of the subjects of their segments, but if the peopledisplaced themselves into newsworthy meetings, they would happilyhavecamerastheretofilm.

InpreparationformeetingDerek,whowasrenownedforhisjazz,Rexbegandippinghisfingersintothegenre,whichhadpreviouslybeenabittoo free-form for his classical brain. To date, he had only been able totakeitinsmalldosesbeforerequestingaBeethovenbreakorsomeothersuch classical brain reset. But he had been given George Gershwin’s“I’veGotRhythm” toworkon inanticipationof themeeting, so the twomusicians could play together and eventually collaborate for theculminating documentary piece, which would be a jazz performancefeaturing the two pianists at the Mandalay Bay Hotel in Las Vegas, ameretendaysaftertheirinitialmeeting.

With two sets of cameras rolling, the British documentary team andCBS, Rex and I walked into the Belsize piano studio in the north ofLondonwhereDerekwouldbewaitingwithhispianoteacherandmentor,Adam Ockelford. I had visions of Schroeder, from the Peanuts comicstrip, when we entered the room. The young man was bent over hispiano,hiswhiteshirtsleevesbillowingoutashisarmsroseandfellwithsuch intensityandconcentrationthat Iwondered ifheevenrealizedwewere there.ButassoonasAdamsignaledourarrival tohim,hestoodup, and with his teacher’s assistance, moved in our direction andextendedhishand.“I’mDerek.Hello,Rex.I’mDerek.”Hewasoutgoingbut seemed repetitive and a bit disoriented away from the piano keys.LikeRex,thisyoungmanneededgroundinginhispiano,almostasifhegothisbalance from thekeys, thenotes. “Wouldyou like toplaysomepiano,Rex?”heasked,alreadymovingbacktohisinstrument.

“Sure, Derek,” replied my son to the invitation. Rex played “I’ve GotRhythm”justashehadlearnedit.Butwhentheoldermusiciantookover

thesamepiece,playing it inamore flamboyant style,Rexcoveredhisears and protested. At twenty-six, music had clearly become a socialvessel for Derek, enabling him to play with other musicians, eitherjammingatthepianooraspartofanensemble;butformyten-year-oldson, itwasstillmostlyhisprivatedomain.Hestruggledwhenasked tolistentoadifferentmusicianplayinganalternativeversionofasonghealreadyknew.Ontheotherhand,Rexcould takeasongandmix itup,playingitinavarietyofstyles.Heevenlikedtoquip,“Icanturnasonataintoawaltz,orMozartintoChopin,orevenaRussiandance.”

Rexdemonstratedasimilaraversion toanothermusician invadinghisspace later in thedayuponavisit to the famousBeatlesstudio,AbbeyRoadStudios,whenDerekbegansingingmyson’sbeloved “When I’m64.”Rexagaincoveredhisearswithaplaintive,“Stopsinging,Derek!”

Musically,Derekwasprolificandcommanding,seemingtofeeladeepneedtofillthesilenceinanyroomwithmyriadnotes,andtwoquestionspopped to my mind within the first few minutes with this young man:Wouldmylittleboybeabletoholdhisowninacollaborationwithsuchapowerhouse?AndhowwouldthemusicalDerektranslateintoDerekthepersonandsocialskills?

ThefirstquestionwasansweredwhenAdamsuggestedanewragtimetune to Rex, one that Derek had been playing for twenty years, ScottJoplin’s “The Entertainer.” Since this was a song my son had neverplayedbefore,notonlydidhenothaveanyproprietaryclaimtoacertainversionofit,butheclearlyhadhisowndeepneedtogethisfingersintoit.Adamplayed itone time,andRexhad to jump in,unable tocontainthatneed.Withthisnewsong,hehadnoproblemallowingDerekandallhis substantial George Shearing chords into the mix as Adam set thetempoonstilla thirdpiano. “Shallweswing itnow?” thepiano teachersuggested.

As I watched the intent twenty-six-year-old sweep the piece up intoquick-stepping jazzmoves, Rex refused to be left behind by themoreexperiencedjazzpianist.“It’sbluesy,baby!”Rexexclaimed,kickingitintoa higher gear himself. And what a “meet and greet” it was, the roomcomingalivetothebeat,withthebodiesofthetwomusiciansmovingas

muchasthemusic,withRexbouncingupanddownonhispianobenchwhileDerek rockedhishead fromside toside.A trueaudioandvisualjamsession!

“Fantastic,AdamandDerek!”Rex exclaimedas they finished,with asparkleinhiseye,whichbodedwellforthemusicthesetwowouldshareovertheupcomingtendays.Whatremainedunknownwashowthetwowould relateonapersonal level.Would therebeanymeetingplace forthembeyondthemusic?

FollowingourinitialmeetingwithDerekinLondon,hefollowedusbacktoourhomeinMalibualongwithhispianoteacherandfilmcrew.Itwasduring thisvisit thatwegot toknow theBritishmusicianbetter,andheansweredmyquestionabouthowhismusictranslatedintohisperson.IfRexwasreticenttosharehismusicwithDerek,itwasnotthesamewithhismusicalworld.AndthisworldRexhappilysharedwiththeyoungman,first taking him to Pepperdine University, where he had been studyingmusicforthepasttwoyears,andthentotheAcademyofMusicfortheBlind,wherehealsostudiedpianoalongwithdanceandgottoplaywithothergiftedandblindyoungsters.Whereverwewent,assoonasDerektouchedapiano,he tookcontrolof the room.Butwhatwasevenmoreinterestingformetoobservewashisabilitytointeractsocially.Itwasthatabilitythatreallycameasasurprisetome.Hehadacleargraspofsocialetiquette, polite forms, and such—thrusting his hand out as if he wasdrawing a sword each time he met a new person, accompanied by aratherstarchedandBritish,“Hello,I’mDerek.”But,inaddition,Iwatchedhim sustain conversations, something that had been, until now,impossibleforRex.

AdamOckelford explained it tome. “Derek has learned all the formsand conventionsof communication inmuch the samewayhehaswithmusic. So hemixes them up and varies them and, presto, out comesconversation.” I found the analogy fascinating. Evenmore enlighteningwas the fact thatbackhome,asDerekhadgottenolder,hehad foundanotheractivityheactuallypreferredtomusic.IwasstunnedwhenAdamsaid,“Hedoesn’tplayasmuchpianoasheusedtobecausehelikestogo out with friends and just hang out.” I’m not sure whether my jawactually dropped upon hearing those words, or if it did so only in my

mind, butmy heart yearned to be able to say the same thing of Rex.Wouldhisgeniusbeaconduit tonormalcy,orwould itkeephimlockedupinhisexceptionalextremes?

DerekandRexwerebothsittingaroundalunchtablefullofadultsandchildrenattheAcademyofMusicfortheBlind.Derekwasgarrulousandinvolved;Rexwassilentandwithdrawn.IncontrasttotheBrit,toomanypeopletalkingshutmysondown.Heneededtolistensointentlyinordertoprocessandbeabletointerjectanythingintothemixthathenormallyjust refrained insuchasetting.That is,unlesshe felt like throwing inaparticularconcernthatwascompletelyoutofcontext.Forexample,whenthegroupwasdiscussing foods,Rex threw in, “Adam,areyouDerek’spianoteacher?”Hewasdrawingfromthe60Minutespieceheknewsowell, and then he asked, “And did youwork daily withDerek formorethantenyears?”PerhapsintimeRexwouldreachDerek’slevelofsocialinteraction.

However, the truth of Derek’s communication wasn’t immediatelyapparent. It was revealed at the end of that lunch, when I remarkedwistfullytotheBritishcameraman,“IlovethewayDerekcanengageinasustainedconversationwithpeople.”

Themanrespondedwithasmile.“It isfascinating,Iagree,andDerekisa lotof fun.”He thenadded, “Butyouneverknowwhat tobelieveofwhat he says.Hewill spina totally believable yarnandget yougoing.And then you find out none of it is true.” He shook his head at theincorrigibleDerek,whoseemedfullofsurprisesindeed.

“Whatdoyoumean?”Iasked.

The explanation was fascinating. Derek’s words were withoutcomprehension; his conversations had a form and continuity but didn’tmeananythingtooneoftheparticipants.Iwasdeterminedtopaymoreattention to the content of what Derek said after that. The youngmanwould throw in inflections, sometimes questioning, but speaking withcertainty inhisvoicethatcommandednotonlyaresponsebutbeliefheknewwhathewastalkingabout.

I wanted to see formyself. So I asked, “Derek,will you come to ourhouseandgoswimmingintheocean?”

“I would love to, Cathleen! I would love swimming in the ocean!” IcaughtadubiouslookonAdam’sfaceasDerekcontinued.“Iswimintheoceanbackhome.”

“Youdo,Derek?That’sgreat!Well, therewillbealotofsurfers inourocean!”

“Alotofsurfers,yes!Ilovesurfingtoo.Ridingonthewaves,youknow.Ilovetorideonthewaves.”

“You’reasurfer,Derek?”Iasked,playinghisconversationgame.

“Yes, Cathleen. I am! Can we surf in the ocean at your house,Cathleen? Iwould love to ride on somewaves like I do back home inEngland.”Hethrewinenthusiasmtomatchhiswords.“Whencanwegosurfingintheocean,Cathleen?”

AconversationwithDerekwaslikestorytellingwithRex.Hejustmadethingsupandfititin,turningfantasytofact.Buthelovedit,andpeopleenjoyedhiscompany.Itwashiswayofbeinginvolved,apparentlyasfarashisownmentaldevelopmentwouldtakehim.Adamsaiditbest:“Rexis so much more cognitively connected than Derek.” That was thedifference.Rexnevermadethingsup.Conversationwasstillalaboriousprocess,notatallautomaticasitseemedwithDerek.Butwhathesaidwasreal,andthatwaswhyhiswordswerefewincomparison.

Ask Rex what he would like to get hismother as a present, and hewould answer, “I don’t know.” The truth. I asked Derek that samequestiononedayduringa break in our filming,whilewewere strollingthrough an outdoor marketplace wandering among eateries andboutiques.“Derek,wouldyou liketobuyyourmotheragiftwhileyou’rehereinMalibu?”

Derek paused for just a second, before responding in an ingenuous,reflectiveway,“Why,yes. I thinkI’d liketobuyMaryAnn[hismother]a

glassofwine!”

It was cute and rather charming, coming from this aristocraticallyhandsomeyoungmanwithhisupper-crustBritishaccent,eventellingofhismother’stastes,butitwas,ofcourse,completelyoutofcontext.

During thecourseof theweekwespent together,my fascinationwithDerek grew, and I found myself wondering how much of what I wasseeingwouldactuallybemysoninafewyears.DerekandRexhadbeenassignedthesamehighlyuniquelabelofprodigiousmusicalsavant,asifthey’dgainedentryintoaclubwithonlyahandfulofmembersworldwide.And yet they were individuals. While Derek’s neurological systemseemed to border on hyper-tense, conveying almost manic energy attimes that he pumped into his endless runs up and down the pianokeyboard, Rex’s neurology tipped the scale at the other end of thespectrum. He was hypo-tonic, and it was a struggle to maintain hisenergylevels.Toomuchnoiseandmaniaaroundhimcausedhimtoshutdownandbecomenonresponsive.Bothboys found theirbalance in thepiano—Derekusing the instrument tocalmanddrainnervousness,andRexusingittoinfuseenergyandcreativityintohisbody.

The two musicians spent the week together collaborating for thebiggestperformanceoftheirlives,infrontofanexpectedaudienceoftenthousandattheMandalayBayHotelinLasVegas.Butitwasn’ttheglossof Las Vegas or the prospect of such a big event that became mysnapshot for that week. It was the day Derek and Adam came to ourhomeinMalibu,andwealltookawalkdowntothebeach.ThatwasthefirsttimeIsawDerek’spersonalityreallyshinethrough.WhileinLondon,ithadallbeenaboutthemusicandplayingpianotogether.AndI’dneverseentheyoungmansmile,letalonelaugh.Heseemedtobetheepitomeof thedry,overlyseriousBrit,whichwasperhapsevenaccentuatedbythemixofdisabilityandgenius—notwhat Iwantedmyson tobecome.ButbackinMalibuIsawquiteadifferentyoungmaninDerekunplugged.

Theskiesweregray inMalibu—notatall the imagetheBritishhadofspringtime in California, the land of endless sun—but the surf waspounding.SurferswereoutinforceonthePoint,justnorthofourhome,and with documentary cameras in tow, I led Derek and Rex and

entourage down to the sand. “It gives atmosphere,” Derek’s pianoteacherAdamassuredme,whenIapologizedfortheovercastskies.

Derekclimbeddownseventeenstepstothewaterline.Hecountedthestepsashewent,asRexdid,whichmademethinkhedid,infact,haveanawarenessofnumbers.Adamassuredmehiscountingwasroteandthat he didn’t understand the underlying concept. I wouldn’t let it go,knowing how Rex was just the opposite with numbers, possessing anability to count silently even such things as the number of times youmoved the toothbrushbackand forth inhismouth. Ithad tobeexactlytwentyineachquadrant.Accidentlybrushtwenty-onetimesornineteen,andyouwereintrouble!“Thatwastwenty-one,nottwenty,”hewouldsaythroughclenchedteeth.

GivenDerek’snumericsenseinhismusic,Ifeltcompelledtogivehimmyowntest.“Derek,couldyouclapfivetimes?”Rexcoulddothatinhissleep.

He began clapping as he counted, “One, two, three—” I interrupted.“No, Derek. Do you think you could clap five times for me withoutcountingoutloud?”

“Icando that,”heassuredme.Andbegan . . . clap,clap,clap,clap,clap, clap, clap . . . Adam looked at me with a smile as if to say,“Satisfied?”

Yes, Iwas satisfied. I knewmysonandDerekweredifferent beings,withuniquechallenges, inspiteof theiruniquecommonalities.ButwhatcametodefineDerekformewentpastthemusicandpastthedisability.Theyoungmantouchedthesand.“Cathleen,IthinkI’dliketotakeawalkonthesand.WouldRexliketotakeawalkonthesand?”

“Rex,whatdoyouthink?AreyoureadytoshowDerekyourbeach?”Iasked.

“I’mready!”Rexsaid,lovingthebeachandtheadventureofDerek.

Rexwasusedtowalkingthisbeach,butDerekseemedalittlereticent

andoffbalanceat first.Wewereallwalkingarminarm—Adam,Derek,me, and Rex—trudging in partially wet sand, when I wondered whatDerekwouldbelikeifIthrewsomeunreservedCaliforniaenergyathim,asIdidwithRexallthetime.“Derek,shallwerunintothesurf?”Iasked.

“IthinkI’dliketorunintothesurf,”herespondedinarotemanner,notknowingwhatwasintheworks.

“So let’s go!” I said with urgency that spoke as loud as the words. Imoved Rex around so he was facing the water, obliging the others tofollowsuit, thencharged forward. “Into thesurf!” I criedout,pulling thetrioforwardaswatersplashedaroundourcalves.

“Intothesurf!”Rexrepeatedmychant,laughingasthewaterencircledhis legs. Adam appeared a bit dubious but followed suit. We movedforwardandback,advancingintothewavesandthenpullingback.“Intothesurf,AdamandDerek!”Rexshoutedagain.

Derek was cracking a smile. It encouraged me to push for more. IwantedtoseeDerekreallyunplugged.IlaughedalongwithRex,pullingeveryoneforwardagain.“Derek,isn’tthisfunrunningintothesurf?”Thistime,aslightlylargerwaverolledintoclipthebottomoftheyoungman’srolled-uptrousers.

His smile broke into a laugh, which was hesitant at first but beganescalatingwithourmovements. “Yes,Cathleen!This is fun running intothesurf !”he responded,usingecholalia lacedwithexcitement. I didn’tknow Derek had laughter in him, but once it broke loose, it becameinfectious.

I lookedout onour ocean to see threedifferent surfers jumpingatoptheirboardsjust intimetocatchalong,rollingwave.Theywereatonewith nature and their sport, and it all looked effortless, a seamlesschoreographydictatedbythewaves—dipandlean,shift,straighten.

Adamsawthesurfers,too,andmadeasuggestion.“Derek,sincewe’reinCalifornia,wouldyouliketosingsomeBeachBoys?”

Stilllaughing,Dereksaid,“Whyyes,Adam.IthinkI’dliketosingsomeBeachBoys.”

AndbeforeIevenhadachancetowonderhowRexwoulddowiththeolderBritishboysingingtheclassicsun-drenchedvacationsongs,DerekandAdamhadbegun“Surfin’Safari.”

“It’sasongaboutsurfingon thewaves,Rex,” Iexplained,and joinedthesinging.

WiththethreeofussingingtheCaliforniabeachclassic,Rexshouted,“Intothesurfonelasttime,”ashetuggedonmyarm.

Rexhadpickedupthechorus,andas“Comeonasafariwithme...”trailed off, Derek shouted, “I love the Beach Boys!” His accent held atouch of British restraint, but his enthusiasm was cut loose, signatureCalifornia,soreminiscentofhiswild,take-no-prisonersimprovisationsonthepiano.

“I lovetheBeachBoystoo!”Rexmimicked,suddenlysoundingBritishhimself.And theybothburstout laughing,withDerek’sheadand torsobobbingforwardandbackandRexjumpingupanddowninthesand.Ilookedfrommylittleboytothischarmingyoungman,whohadsomuchlifeinsidehimtobebroughtout,andwasfilledwithhopeforthefuture.

Attheendofourweektogether,RexandDerekmiraculouslypulledofftheir performance at theMandalay BayHotel stadium in Las Vegas. Itwasbigandglitzyandglamorous,and theyplayedbeautifully together,butwhat I remember best about ourweekwith our British friendswasconversationswithDerek—theyarnshewouldspin,manipulatingwordslikemusictokeepthecommunicationgoingandconnecttoothers—andthatdayatthebeach,laughingandsingingandchargingforwardintothesurf,experiencinglife.

CHAPTERSIXTEEN

Rex’sTimeIknowtheplansIhaveforyou,declarestheLord,planstoprosperyou

andnottoharmyou,planstogiveyouhopeandafuture.

—Jeremiah29:11

Musical collaboration with Derek opened an important door for Rex,whichcameatthesametimehefinishedfifthgradeandgraduatedfromelementary school. Over the nextmonths, hismusical speech took onnew depth. In addition to his numerous solo performances around thecountry,hebeganplayingwithothermusiciansinhisnewmiddleschool.Meaninghisschoolpeers!ThiswaswhatIhadbeenhopingforallalong,butithadn’tbeeneasy,andwasstillaworkinprogress.

Middle school presented a lot of new challenges to Rex . . . andsources of potential anxiety for Mom—bigger, noisier campus, bigger,tougherkids,changingclassroomsthroughouttheday.ButRex’smusicalexperiences,and lifeexperiences,andwithall the travelandnewness,hadpavedthewayforthesenewdailychallengestohisbodyandmind.Hewasreadytotakeonmiddleschool!Andbythetimeweapproachedtheendofhisfirstyearofmiddleschool,Ihadtoacknowledgejusthowmuch had changed for Rex—in hismusic, his life, and now at school.Educationalissueswhichhadcontinuedtognawatmefromonedegreeto another throughout his elementary years, from academics toopportunitiestohismixingwithotherkids,nowseemedmostlymootwithhisentryintomiddleschoolandtwoteacherswhoreallygotit...andgothim.

The first was his special education classroom teacher Lisa Szilagyi,affectionatelyknownasLisaS.Shewashis“basecamp(orclassroom)teacherwhere he spent a couple of periods a day,working on specialskills, from which he then traveled out to other selective “mainstream”classes. LisaS. redefined “excellence in special education” byworkingcreatively . . .andcollaboratively(yes!) . . . tobringout theessenceof

Rex. She made sure he got numerous opportunities to use his gift tobridge social and educational gaps. And she was able to create thatappropriateeducation(meaningrelevanttohislife)thelawhadpromisedhimallalong,butwhich, if truthbetold,hiselementaryschool teachershad never quite managed to give him, in spite of the support he hadalways gotten from caring one-on-one aides. As a result, instead ofcominghomeexhaustedbythisnew,morechallengingenvironment,heseemed to be infused with energy. I’d collect him off the specialeducationbus,whichherodetoandfromschooleachdaynow,andonmanyaday,hewouldquiteliterallybesinging(well, let’ssayhumming)ashesteppedfromthebus.

Secondly,therewashisPeriod1teacher,BillBixler,whotaughtconcertband and who was instrumental in affirming Rex in his new schoolsetting. I saw the immediate connection between the two at the verybeginningoftheyear.ItwasBacktoSchoolnight,andbeingnewtothemiddle school “changing classes thing,”Rexand Iwere running late infinding classrooms. By the time we got to band, the teacher wasintroducing himself to a room full of parents, sitting wedged betweenpercussion,keyboards,andmusicstands.“I’mBillBixler”hewassayingasRextrompedintotheroom,withhiswhitecaneleadingthewaypastan impressive set of drums. Hearing his teacher’s voice my sonconfidentlyannouncedtoall,“Well,I’lljustcallyouBill!”Parentscouldn’thelpsmiling,and theband teacherchuckledat the interruption,saying,“It’snice toseeyouRex.AndI’m looking forward toyourplayingpianowithusthisyear.”

His concert band teacherencouragedRex’sparticipation inhis class,understanding justhow important thiswouldbe forhis life.However, inthe beginning of the year, Rex could barely tolerate all the otherinstrumentsandthekidsintheclass,whomightbeplayingwrongnotes,ortuningtheirinstruments,orwhomightsimplybein“hismusicalspace”!He would ram his fingers in those sensitive ears, flap his hands todistraction, or just need to leave the room.Rexhadmade tremendousprogress in desensitizing other sensory issues, but music was hissensitivity stronghold. His gift played against him in this area with hismusicalbraintoofinelytuned.Itseemedhisgeniushadcreatedalevelof

intolerance that was unbridgeable. But his band teacher took it all instride,counteringanyinflexibilityinRexwithhisowneasygoingflexibility,andabilitytogowiththe“Rexflow.”Andoverthemonths,themiraculousonce again began to unfold—my son’s “sense of affront” began tochange.Thatfrustratingbrainrigidity,bornofautism,wasbeingdealtjustenough of a daily blow to progressively stretch it out (without breakingRex in the process). This created much greater flexibility and a hugeincrease in what he tolerated. And as a result, the year saw Rex’sdramatic transformation from a child who could barely toleratemusicalexchange, even with a brilliant musician like Derek, into a youngmanwhowas emerging as a collaborativemusician. And yet, I did need toadmitthat“emerging”wastheoperativewordhere.

The defining moment was at the Malibu High School springinstrumental concert, where he would be performing Mozart’s EighthPianoConcerto,backedupbytheschoolorchestra.Rex’sbandteacherhad given him an invaluable opportunity and demonstrated confidencethathisstudentwouldrisetotheoccasionofbeingateamplayerinfrontofanauditorium fullofparents.Playingwithawholestage fullofothermusicianpeerswouldshowhowmusiccouldhelphimconnecttoothers.Attwenty-six,Derekhadbeendescribedbyhisteacherasabombproofperformer.Thiseventwouldputnoweleven-yearoldRex to that sametest.

I was sitting in the audience, surrounded by friends I had asked tocome tosupportmysonandme,and I felt thenervesof lifeuponme.WouldRextripuptheorchestraifhisfingersfumbled?Awholeorchestraof kidswas counting on him to play flawlessly. Andwhat about them?Would they trip him up with lack of synchronization? His piano haddeliveredhim toagroupofpeerswhoweredependentonhimandonwhomhedepended—criticalinterdependence,soessentialforlife.Yet,Iacknowledged, like so many times before, my son and I were wayoutsideourcomfortzones.Andso,astheconductorraisedhisbatonandbegan the orchestral intro of the thirty-six measures Rex hadautomatically counted,withmy special child bouncing up and downonhispianobenchwhileflappinghishands,myprayerwasthatGodwouldjustsitdownnexttomyboy.Holdhishandsasheplays...andmineas

well,whileYou’reatit.

Rex, get ready! I implored silently, my stomach clutching. As if he’dheardmythoughts,hesettleddownbytheendoftheintroandenteredperfectly, playing his section with dexterity and tonicity. I finally took abreath.Butthentheorchestraplayedasectionwithoutthepiano,freeingmyson’shandsonceagain.Hewasbattlingtokeepthemnearthekeys,waiting and ready for his next section, as we had worked on; but theexcitementoverwhelmedhim,and theypoppedbackup, like theywerebreakingfreefromsocietalconstraint,andtherapidhandflappingbeganagain.

No,Rex!Yourhandsneed tobe ready,sweetheart!How in theworldcouldhe landhishandsfromamid-air flap inunknownspaceontoanyspecifickey inamere instant?Hewasblind, forgoodness’sake!Herecomesyourbeat,Rex.Yourhands,please.Iwaswillinghimtohearmythoughts. But his hands kept at it, as if they were playing a game ofchicken, up and down, until he had the tiniest fraction of a second torespond.But . . .bythegraceofGod. . . thatwasall it took!Reactingwith lightningspeed,withhisarmsinfullupwardextension,hisflappingmotor jerked to a stop. Then his hands, possessed by the music andknowingexactlywheretheyneededtobe,plungeddownontothekeysina free fall! Iheardgasps from theaudienceashestruck thekeyswithexactprecisionrightonhisentrybeat.Catastropheaverted,miraculously.

Thenhishands,possessedbythemusicandknowingexactlywheretheyneededtobe,plungeddownontothekeysinafreefall!Iheardgaspsfromthe

audienceashestruckthekeyswithexactprecisionrightonhisentrybeat.

I relaxed again, but he wasn’t about to let me off lightly. He wasdetermined to test my faith—in him and in God—for the same scenerepeated each time the orchestra would take over the score. For thedurationoftheconcerto,hewouldenterhispianosectioneachtimefromsomenew randomposition inmid-flight.Buthedidn’tmissanote,and

didn’tmissabeat,asthoughGodweregrabbinghishandsandlandingthemhomeinperfecttime.

Four beats to a measure. Four–four time. Also known musically as“commontime.”Commontime!That’swhatMozarthadwritten,butRex’stimewasanythingbut.

“Uncanny,” came the response froma friendsittingnext tome. Ialsoheard “Unbelievable” and “Incredible,” but as I liftedmy heart in silentthanks,myownthoughtswere,Otherworldly.

Astheapplauserangoutforastunningperformance,Iwatchedaboyin the row in front of us shut off his camcorder.Nathan.Hewas but ayearolderthanRexandwasapianoprodigyhimself,andheaspiredtobe a concert pianist.Nathan’smotherwas sitting next to him, and sheturned toaskmehow long ithad takenRex to learn theconcerto.SheshookherheadindisbeliefwhenIsaid,“Threeweeks.”

I was suddenly struck with an idea. “Wouldn’t it be great if Rex andNathancouldplaysomethingtogether?”

Nathan turned around in his seat. “That would be fun,” he said. “Iplayed a concerto this year too . . . Beethoven. But it took me threemonthstolearnit.”

InspiteofhowfarRexhadcome,hestillneverhadplaydates,hadn’tshownadesiretoconnecttohispeers.TheywereopentohimlikeDrewat theamusementpark.Theysoughthimoutatschoolandelsewhere,but he showedno interest.Why? Iwondered.Was it because kids hisownagedidn’thave thepatience it took tosustaincommunicationwithhim?And ifso,would thisboy,whospoke thesamemusical language,be just the one to break that barrier? I knew that Nathan was beinghomeschooledsohecouldworkonhispianoduringtheday.“Wheredoyoualllive?”Iaskedhismother.

Mother and son exchanged amused looks. “We just rented out ourhome for the summerbecausewe’regoing tobe traveling.But for thismonth [June], while we’re still here, we’vemoved into a condo on the

beach,justnorthofPepperdine.”

If I’dbeen looking toGodforsomesortofsign,encouragingme, thatwouldhavebeen it. It turnedout theywere living justacoupleofdoorsdowninourveryowncondominium!Wow!YetanotherwinkfromGod!

Rex was a little tired from school on the day Nathan was coming toplay, so I hoped hewould allow themusical interchange I had set up.Facilitating Rex’s interaction with another child was harder thanfacilitating a performance. And yet,Nathanwas a pianist and a bright,energetic boy,who I hopedwouldn’t be intimidated ifmy sonwas lessthanenthusiasticwiththeirtimetogether.Hewasbeamingashewalkedthrough the door, excited to see Rex play up close and personal andexcitedtoplayhimself.Nathansaidhe’dliketohearRexfirst.Theolderboy listened with true appreciation to my son’s new Debussy“Arabesque.” Then when he took his turn, he spoke to Rex directly,instead of tome, aswas often the case. “Rex, I’d like to play you theChopinEtudeI’vebeenworkingon.”

Thepiecewasnicknamedthe“Torrent,”and itwas indeeda torrentialfloodingofnotesheplayedwithflamboyanceandvirtuosity,whichmademysonsquealandjumpoutofhischair.Hehadneverheardapeerplaywithsuchprodigiousskill!NathanthenplayedaChopin Impromptuandgotthesamereaction.

Seeing Rex’s interest, I had the longing again that he and Nathanshouldcollaborateonapieceofmusicandworktogether.Rememberingthisboyhadseemedopentojustthat,Itriedfollowingthrough.“Nathan,howwouldyouliketostudyapieceofmusicthatyouandRexcouldplaytogethersometime?”

“Sure,”hesaidwithouthesitation.

“Youknow,Rex learnspiecesveryquickly. Ifyou’d liketosee,maybeyoucouldteachhimpartoftheChopinImpromptuyoujustplayed.”

“Okay,”Nathansaid,althoughIsuspecthedoubtedwhathewouldgetback.Heplayedamelodicpart,andRexplayeditback instantly, tothe

boy’s fascination. “Amazing,” he said. Wanting to keep the interactiongoing,IsuggestedRexplaybackthesamepartinanotherkey,changingitfromA-FlattoD.

“Hecandothat?”Nathanasked,incredulous.

“Ithinkhecan,”Isaid,butinmyprideashismother,I’dspokenformyson.

Rexspokeforhimselfnow.“No,”hesaid,refusing.

Iwouldn’tgiveup,soIcounteredwithaneasierkeychange,speakingto him and not around him, like I berated others for doing. “Well, howaboutB-Flat,then,sweetheart?Ithinkyoucandothat,Rex,can’tyou?”Icoaxed.

Onceagainhehadhisownideas,exertinghispersonality,hiswill.Thistimeitwastopicktheharderchallenge,andhesaid,“D.I’llplayitinD.”Itwas an astounding transposition that left Nathan smiling, saying hewished he could have some of Rex’s brain. But just asmy heart wasswelling with visions of these two boys as friends, Rex deflated myhopes,saying,“Nathanhastogonow.”

Iknew thatmeantRexhadsuddenly reachedhis limit.That’swhyhedidn’thaveplaydates.ButItriedtodeflectmyson’smeaningbysaying,“No,sweetheart,Idon’tthinkhehastogoyet,ordoyou,Nathan?”

“Yes, Nathan has to go,” Rex repeated, his own independencesuddenlybecomingmyfoil.

The boy looked taken aback for amoment, since hewas thoroughlyenjoyinghistimeplayingmusicwithRex,butashelookedathiswatch,herealizedhe’dbeenherepast the timehe’d toldhismother,andsaidwithachuckle,“Well,actually,Idohavetoleave.Butthatwasreallyfun,Rex.”

The door shut to the sound of Rex playing what sounded like anocturne,knowinghewasimprovisinginthathaunting,melancholicstyle.Heseemedcontentbut faraway, removed fromNathan, removed from

me,inthatplaceofhisowndeepwithin,whereonlymusiccouldreach.“Rex, did you have funwithNathan?” I asked, trying to pull him back,wantinghimwithme,notinsomeotherworldIcouldn’taccess.

Heansweredmeonlywithnotes.Theywerebeautifulandsad,wistfullyfluttering, suspended in space, longing for completion before spiralingdownward.Myheartachedwithalongingofmyown—toreachmychild.“Rex, did you have fun with Nathan?” I asked again, more urgently,hoping,yearning.Butwewereinseparateworlds.

We’dcomeso far together.Hispersonalityhadbegunemerging,andhewasassertinghimself.Thatwasgood,butIdidn’twantittokeephimseparate.Iwantedittoconnecthimtotheworld.YetwhatIhadyearnedfor all these years remained elusive. Would he ever become trulyinteractive,needinganddesiring thecompanyandcompanionshipof apeer?Derek’s example had givenme hope. If he could get there withevengreater cognitive limitations thanRex, so couldmyson.And so Ihadpushed forwardwithNathan.But rightwhen it looked like itwouldhappen, Rex shut down. My letdown was intense, all the more sobecauseRexseemedtobeabletojustflyawayonanocturneandleavemealoneinmyfrustration.Andyet,Icouldn’tbeallalone.Thatwaswhatfaith was all about. God had access to my son even deep within themusic.AndHehadtobewithmenow,eventhoughitdidn’tseemlikeit.EvenifitseemedHewasasdeaftomeasmysonwasjustthen.

Thenextday,RexandIwenttothebeach.Anditwasthere,withtheinfinitehorizonstaringme in the face, thatmyson finallyansweredmyquestion.“Mom,thatwasfunplayingpianowithNathan!” InRex’stime.Oh,youoflittlefaith!Whydoyoudoubt?Everythinginhislifehappenedinhisowntime,that’sthewaymysonworked.Icouldn’tpushhimpastwhathewas ready forhimself.Whyhadn’t I learned it yet?WaitingonGodmeantwaitingonRex.Hedippedhisfeetintothesurf,ashe’ddonewithDerek,andsaid, “Iwill tellNathan thewater in theocean is reallycold!”

“Youdo that, sweetheart; youdo that!” I said,myvoicebreakingwithemotion.

“Nathan will come knocking on our door, and I will say, ‘Come inNathan,’andIwilltellhim.”

YES!Icriedtomyself.

Twodayslater,therewasaknockonthedoor.“Comein,Nathan!”Rexshouted,withexcitement,fulfillinghisownprophecy.Thedooropened.

“Hi,Rex.Howareyou?”Nathanaskedpolitely,walkingin.

“I’mfine.Andyourself?”Rexanswered.

“I’mgood.I’vebeenthinkingaboutapiecewecouldworkontogether,Rex. There are some Beethoven concertos that have different pianopartswecoulddo,”hesaid.

JustasIwasabouttojumpinandsay,“Goodidea,”effectivelyexertingmy own desires onmy son, I stoppedmyself, practically bitingmy lip,remembering, In Rex’s time. Seconds can be an eternity when you’rewaitingforsomethinglife-alteringtohappen.

Abeat.Two.Three.Then,enteranewmeasurealtogether.“Nathan,I’dliketoplayaBeethovenconcerto!”

YES!Icriedagain,silently.

I sat myself down in the living room, leaving the two boys to playtogetherwithoutMominterfering.That’s theway itwouldbe.Facilitator,not interposer.Afterplayingnewpieces foreachother, theyhadbegunplayingbackandforthonthepianoinasortofmusicalconversation.Rexcalled it “question and answer,” a musical game he’d learned atPepperdine, where one would play a musical phrase in the style of acertaincomposerthatwouldelicitan“answer”back,witheachparticipanthavingtothinkquicklyandcreativelytokeeptheinteractiongoing.ThiswasRex’s language.ButNathanhadmasteredthetongueaswell,andbothboyswereverbose.Andbothwerehavingfun.

“How about some Russian, Rex? This is a Stravinsky style,” Nathansaid.

Rexsmiled.HelovedRussian.Tchaikovsky,Rachmaninoff.Iknewhe’dhavemuchtosay.

As Iwatched the twoboys talkingbackand forth—neverata loss forwords in Russian or Mozart or Chopin—I didn’t know what the futureheld.WouldNathanbecomeafriend?Maybe.Butifnot,therewouldbesomeoneelse,becauseIknewmysonwasreachingout,usingmusicasafootholdashe’dalwaysdone.ThedoorthathadopenedtoletNathancomeinwasjustonemoredooropeninginourlives.Igavethanksforit,knowing just howbig itwas,and I knew that if Iwould just trust, therewould be many more to come. Trusting God meant trusting Rex andfollowinghislead.IcouldprovidehimwithopportunitiesasIalwayshad,but Ineeded to lightenmy touchandallowhim tomove forwardathisownpace,inhisowntime.

Rex laughed as he shot back a Beethoven answer with suchconfidenceandjoythatitmadeNathanlaughaswell.Asthenotesfilledtheair,Ihadnodoubtthefuturewouldbefilledwithwork,hardwork...formysonandforme.Itwasacomplexroadweweretraveling.Withhisbody and mind as the meeting place of such extremes of genius anddisability,howcoulditbeotherwise?AndyetthereinthemixoflaughterandmusicIsuddenlysawthetruthunveiled.WhatI’dcaughtinglimpsesthroughoutRex’s life—snippets, asGod keptwinking atme, sustainingmewith just enough grace—was suddenly stark naked. The parts hadbecome whole. And it really wasn’t complicated at all; in fact it wasbeautiful and awe-inspiring in its simplicity. I’d write it on a Post-it toremindmyselfinthefuture,inamonthorayearwhenImightforget...ordoubt...orbeburiedonceagainbycircumstance.

The whole fact is—Rex loves his life, every second, minute, hour,month, year. He’s like a living revelation, the unlikely embodiment ofgrace—a touch of theDivine.My son knows that it isawonderful life!Andthroughmyfaithandloveforalittleboy,sodoI.

ReflectionsTheotherdaythebumpsbecamewords,andthewordshadmeaning,andthemeaningwas..stories!RexwasreadingBraille!Almostfiveyearsafterhismothergaveuponhisfingersever

beingabletomakesenseofthosehated“bumpsonapage,”Rexwasshowingheronceagaintoneversayneverwherehewasconcerned.OrwhereGodwasconcerned.

Later thatnight, Iwassitting in the livingroom, thinkingaboutRexandBrailleandthemysteryoflifeandgrace.Theslidingdoorstotheterracewere fully open and I could almost touch the heady smell of salt andoceaninthehumidnightair.Mixedwiththescentofthejasminebushes,whichgrewinabundancedirectlybelowtheterracewindow,theeveningairbecamean intoxicatingperfumeenvelopingmysenses.Add to that,thegentlewaves rhythmically caressingmymindalongwith theshore,andIfeltmyselfdriftingintoapeacefultrance.Beyondtheocean,allwassilent,withRexsafely tucked inhisbed,sleepingpeacefully.Suddenly,breaking the silence, snappingme instantly frommy sensory trance, Iheardgigglescomingfromhisbedroom.BythetimeIgottohisbedsidetocheckonhim,hewaschucklingtohimself,apparentlyhavingagoodtime inhisdreams.Hehasstarted thatof late, sometimesevenduringthe waking hours, he drifts off into his own thoughts, laughing.Sometimesit’sgiggles,othertimesit’sadeeper,moresustainedsound,and once in a while it escalates to include laughter in his bodymovements as well as sound. I’ve asked him on different occasions,“What’sso funny,Rex”?Hewill invariablyanswer, “Mom, I’mnotsure.”Personally I think the laughter is his punctuation to all his miraculousbreakthroughs, andhowhe keepsprovingdoubterswrong (evenwhenit’sMom).Soyou really thought I’dnever readBraille,Mom?But then,thelaughterisevenmorethanthat.Itdemonstrateshowjoyisattheverycoreofhisbeing.Itwouldhavetobetoinhabithissleepthatway,andtoseep into his subconscious wakefulness. Listening to that sound, andadmittedlyjoininghiminlaughteronmanyoccasions,just“forthefunofit,”hasmademerealizethatthereneedstobeanafterwardtohisstory.Sohereareafewmorethoughts.

The basics are simple.Rex is joy and I want what he has. But theprocessisnot.Solet’sgobackintime.

JustlikeRexwaslivinginadark,lonelyworldbeforehefoundhisvoicethroughmusic,soIwas living in thedarkbeforeI foundGod,orrather,beforeHefoundme.Ofcourse,Ididn’tknowIwasinthedark,sincemyworldwasfilledwithmotion,andIwaslivingintheCityofLights—Paris.How could there possibly be darkness there in the exciting world offashionwhere Iworkedasamodelor inacareer inhigh finance?Andyet,inthestillness,whenthemovementwouldstopforamoment,therewasavague feelingofemptiness thatwouldseep in, inspiteofall the“things” in that world. Back then, I would “cure” it by making myselfbusier.

I didn’t knowback then that Iwas livingwith a hole inmy heart thatsimply couldn’t be filledwith things. And I certainly didn’t knowwhat itwouldtaketofillthathole.BeforeRex,Inevercouldhavedreamedhimup.Butthat’swhatGodspecializesin—theoutrageous,theunexpected,and theknock ’emdown,out-of-thisworldunbelievable!Not tomentionourownunspokenneed...orunacknowledgedneed.

AsIlookbackattheportraitoftheyoungwomanIwasbackthen,IseehowfirmlyIwasgraspingthewheelofmylife.Iwaswillfulandstubborn,sure that I knewwhat Iwantedandwhatwasbest, conditionedbymyenvironment. Iwas trying tomeasureup,anduncertaintywasn’t a traitadmiredatStanford,norwaslackofconvictionthestuffofasuccessfulcurrency trader. I was enmeshed in the standards of theworld aroundme,andbowingtoidealsandexigenciesofdailylife.

ThencameRex!AsteelybondoflovegrippedmyheartwhenIlookedintomybaby’seyes.Unshakeable,unbreakable,beyondanyemotionI’deverfelt!LittledidIknow,thosebeautifullyinnocentbabybluesweretheeyesof theperfectstorm thatwouldbringdown theworldas Iknew it.Conditioning, expectations, standards. Rex’s whole being was aboutuncertaintyandlackofguarantee.Icouldhavenoexpectations. . .noteventhemostbasicforthechildIlovedsointensely!Devastatedbygriefandwithout anypoint of reference frommy life experience,Rex’s birthplungedme into confusion, despair, and utter hopelessness.Hewas ahurricane wrapped in a baby blanket, smashing the foundation of myexistence,atornadopushingmethiswayandthat, leavingmespinninginunknownspace,clingingonlytomybabyboy,hangingonforourlives.

Theonly thingIknewbackthenwasthat Icouldn’t letgoofmychild. Iwashismother,andthatbondofloveseemedtheonlyabsoluteIcouldtrust. And his daily existence was suffering, upset, and sensitivity. Hecouldn’tliveintheworldasitwas...orashewas.Anditwaslivingthepicture of my two-year-old child, the tortured prisoner of his owndysfunctional body, that brought me to my knees and led me to God.Little did I knowback then thatwhat Iwas seeking fromGodwent farbeyondmy sonandmy life sincehis birth.ButGod is bigger thanourownimaginationandHeisaverycleverCreatorindeed!

Ihadn’tgrownupinthechurch,sohearingwordsofGod’sredemptivegrace sounded like a foreign language at first, especially given what IwaslivingwithRex.Andso,itwasallthemoresurprisingwhenIfoundmy heart changing, even as my son’s condition didn’t change. I hadattendedchurchforawholeyear,prayingfornothingbuthealingforRex.Forhimtowalk,andtalk.Yet,withoutanyof thoseprayers forphysicalhealingof thesonbeinganswered,Godhadbegun toheal themother.Me!Hehadbegun to instill faith inmyheart,whichwas farbeyondmyown understanding. It was like the words of hope from the Biblebypassedmymind, refuted theevidence in front ofmyeyes, and tookrootdirectly inmyheart.Howcould Ihavehope inmyheartwhenourplightseemedutterlywithouthope?TheanswerisIcouldn’t.Notwithoutfaith.Andso, forme thatwas the firstmiracle that touchedour lives,agood year before the physical miracles began to manifest in Rex’swalkingandspeakingandpianogift.BythatmiracleoffaiththatGodwasgrowinginmeIcametoknowHedidhaveaplanforRex’slife...andmine. I see in retrospect that plan had to begin with me andmy ownchangeofheart.MaybeHehadnouse formeas Ihadbeen.Maybe IhadnouseformeasIhadbeen!

In the years since that first seedling of faith was laid in my heart, ithasn’t exactly been a quiet and even-keeled “walk of faith.” It’s beenmore like a tug-of-warwithGod—pitching thiswayand that, digging inmy heels, or loosening my grasp because His grasp on me was tooconstraining,andthewayHewasleadingwastoofrightening!

HowmanytimesdidIforgetreverenceandjustscreamatHimtolistentome!WasHe uncaring . . . or just plain deaf ?Or . . . did He hear

beyondmywords,beyondmyownmomentaryagendaorconcerntothebig picture of our lives? Living in a constant state of uncertainty for solonggrowsnewtrustingmuscles,helping topry looseoldagendasandconditioning.Youeitherletgoandtrustoryourbodyandmindfallapartover time.One thing issure—God leftRexandme in themuckymess(mirypit)foraninterminablylongtime.(Sometimesitevenseemswe’reback there.) But in all the erratic life and faith swings that I’veencounteredduringthecourseofRex’slife,I’vecometounderstandthatGodhasallowedmetomaintainathreadofhopethroughitall,withoutwhich allwould have been lost. And coming out the other side of painanddarknesshasrefinedmyvisionsothatevenadimlightshineslikeajewel.

SomuchofRex’s lifesimplycan’tbeexplainedbybooksorreason. Iused to try toanalyze, quantify, andassess ramificationsof things thatwerebeyondexplanationandbeyondmycontrol.Theresultwasamindin turmoil—Iwaspullingaway fromGod.Each timethatwouldhappen,whenIlookedbeyondGodforanswers,Iwouldcomebackblank.Blankandconfusedandupset.

ThenIwouldhearRex’spianomusic,anditwouldtakemybreathaway. . . and takemymind out of the equation. I would know beyond anyreasonthatGodwaspresent,andtherestoftheworldwouldfadeaway.Itwas likeHewas tellingme to lookpastmyownmind,and just trust.HearMyvoiceinthemusic.Heareachnote.Don’tworryaboutwhereit’sgoing.Justhearthesoundandknowthatit’sbeautiful...AndknowthatIamGod.Trust.Thatwashardforsomeonewhohadgrownupbelievingthat success came from working the mind. I mean, think about it. I’dpushedmyself togetstraightA’sandhigh testscores inhighschool inordertoget intoatopcollege,whichImanagedinStanford.Thenaftercollege,thefinancialmarketswereallaboutanalysis—factsanddata.Asacurrencyoptions trader I livedandbreathedeconomic indicatorsandchartanalysis togeta fixonshort-termor long-termmovements. Iwasconditionedbyreason.

Trust. If itwasn’t thepiano, itwasRex’s laugh,straight from thebellythat went beyond reason, transcendent. And I knew I wanted what hehad.Joy thatwas just joy,all in themoment,whichdefiedhisdisability

and spoke of a direct connection toGod. BeforeRex, I don’t believe Ievenknewwhatjoywas.That’sbecauseanyhappinessIhadfeltbeforewasalwaysmodulatedandconditional.BackthenIwouldwonderifIwasreallyhappyorwhyIwashappy,orevenwhen“happy”wouldend.Ah,theelusiveandshort-livedhappy!Likemostpeople,Ididwanthappinesstoendure,soIwassearchingforwhatIfeltwoulddothetrickinamyriadof ways—living the Paris adventure, professional success, novelty,romantic love. Like analysis, that search took me away from God,hoppingfromonethingtoanother.Iwasdefinitelyseekingsomethinginmyyouthfulrestlessness.Ijustdidn’tknowwhat.ButGodknew,andHegavemeRex—thechildwhowouldnotonly leadme into the “refiner’sfire” of transformation by crushing my previous life structure, but whowouldalsoshowme,bylivingit,thattruejoyisinsideanddoesn’tcomefromthingsorconditions.Andso,thebirthofanew,moresolidstructure.Astructureofpurpose.Purpose.

Olddesiresbecameobsolete.SpeaktomeofmarkettrendsorcuttinglossesnowandI’dprobablylookatyoulikeyouwerespeakingSwahili—it simply doesn’t register. Not that there is anythingwrongwithmy oldprofession, it just givesme no sense of purpose for living. Rex’s birthgave me purpose, and now that has led me to a new life purpose—sharing themiracleofwhat I’ve livedwithRex inanyway itmighthelpothers. Now I’m passionate about working with children with visualimpairments or multiple disabilities, as I’ve became a fully CertifiedEducationalSpecialistinthefield,orusingmyexperienceasaparenttohelp other parents cope with the emotional impact of their child’sdisability. I’m passionate about extending outwards, offering up mypersonal foibles, the wisdom I’ve gained through my own mistakes ormisconceptions to others, whether it’s speaking one-on-one withsomeone,or in the forumofamotivational speech,asRexand Ihavebeen honored to share our lives with educational groups around thecountryandworld.Nowinwriting thisbook,myhope is that itcanhelpothers gain encouragement and perspective in whatever their ownpersonalstrugglesmightbe, that Imightoffer theblessingI’ve found inmysonbacktotheworld.

Not only does God work in unexpected ways, but I believe He is a

master of irony! Ah yes, indeed. I went abroad to discover andexperience theworld. Travel! Paris! The glamorous city of lights! Yet itwasthroughRexandstayinghomewithalittleboywhosebodyandmindwereunderdailyassault,thatthewholeworldcametome.Goddelivereditrighttomyverydoorstep!

Letmeexplain.Firstly,itwastheintensityofRex’sneedsthatslammedthedoorshutonanyoutsidedistractions,effectivelygettingmyattention.IseenowhowGodhadwhisperedtomethroughaseedofinstabilityformanyyearspriortoRex,butthosewhisperingshadbeenlostinthedinof life.ThencameRex’sbirth.Thatbirthwasnot justa loudcry,butaresonatingscreamthatpiercedmysoulandwouldn’tgoaway.Andthen,onceIwasreallylookingandlistening(thistooksometime,mindyou),Ibegan to see God’s truth revealed. Initially vaporous and blurred, thattruthgainedclarity in theemergenceofRex’sspirit,pureandbeautiful,from out of the darkness of his own imprisoned body and mind. Thewholeworld(theoneI’dbeenseekingbeforethroughperpetualmotioninmyconviction that itwas“justastepaway”) iswithmeatall times. . .andbeforemyeyesatanygivenmoment . . . if I choose tosee it. If Ichoose to see it! I’ve been conditioned for many years to believe theopposite,butGodhasgivenmeRex, thedaily reminder thatkeepsmeontrack.

Istillenjoytheadventureoftravel,allthemoresobecauseIcouldn’tdoany for so many years, having been held hostage by Rex’s autisticsensitivities. But now when I experience life with my son, whether it’straveling or homebound, my senses are more attuned. My eyes haveclearervision,andtheworldseemsfresherandmore infocus,perhapsbecauseIdon’tlookeverywhereatoncelikeIusedto.AndbeingRex’smotherhasgivenmeears tohearabeautifulsong,even in thechaoticconfusionoftheworld,becausenowIcanfilteroutthestatic.AndnowIlove stillness. It’s in the same stillness that used to unsettleme that Ireallyfeelmyheartatpeace.That’swhenIcansmelllife’ssubtlehintofjasminelayeredonanoceanbreezeorreachoutandactuallytouchtheair. I hear life’s symphony there now—deep in the stillness—my sonchuckles,orgigglesorunleashesthatbreathtakingbellylaugh.Ihearmyson’spianonotesflutteringoverthegentlerhythmofwavesoutsideour

windowandknowthatalloflife’slongingshavefoundcompletion.That’swhenIcanhearallthenotes,eventhesubtleharmonies...witheachnoteresonatingHistruth.

AcknowledgmentsFirst of all, a very special acknowledgment to CBS’s 60 Minutes forbelievingintheexceptionalityofRex’s life,andforopeningupsomanydoorsforRexandmebyshininganational lightonourdailytrials(andtriumphs) To the incredible correspondent LesleyStahl for “loving”Rexfrom the get go, and for seeing the mother side of it all. And to ouramazingly talented producer Shari Finkelstein for “getting it right—”forblending humanity and scientific intrigue to create a beautiful “runningportrait”ofourlives.

Iwouldliketoexpressmygratitudetothenumerouspeoplethathelpedmakethisbookpossible:

To TomSullivan,my dear friend,who has always believedwe had astorythatneededtobetoldandthat Iwastheonetotell it.ThanksforyourvisionandpersistentbeliefinRexandme,withoutwhichthisbookwouldnothavebeenbroughtintobeing—nottomentiontheinspirationofyourfriendshipandcreativeguidancethroughoutthisproject.

ToourliteraryagentsJanMillerandNenaMadoniaofDupreeMiller&Associatesforyourencouragementandyourwiseadvicethroughoutthisprocess.

IamverythankfulformyentireThomasNelsonteam,whobelievedinREX.

To Victor Oliver, for taking your belief in our book proposal and myabilities as a writer to the Thomas Nelson Editorial Board andrecommendingpublication.AndtotheThomasNelsonEditorialBoardfortakingachanceonafirsttimeauthor

ToKristenParrishandHeatherSkelton,mywonderfuleditors—you’veboth encouraged me and walked me through the very exciting andpersonalprocessofbringingourbooktopublication.

To Joel Miller for your commitment to this project and understanding

thatitisabout“sharingthemiracleofRex.”

To Dave Schroeder for your personal touch in connecting us to theentireThomasNelson team,evenasyourown firstbabywasabout tokickherwayintocreation!

ToScottHarrisandCurtHardingforyourunderstandingofthevalueofRex’ssmileandlaughinanymarketingorpublicityplan,andforhelpingtogivethatsmileaforum.

Tothemanyselectindividuals,whohavehelpedRexandmealongtheway:

ToGailDavisandalltheladiesatGailDavisandAssociatesforbeingtheperfectcaringrepresentationweneed toexpandRex’sexperiencesinaspeech/performanceforum,inordertosharethemiracleofRex.Youare“offthecharts.”

Tothecaringstaffof theBlindChildrensCenter,whohelpedRexandmegainafootholdinlife.

To my brother Alan, for pointing me to church and to God. And toMalibuPresbyterianChurch for becoming thehomewhere Iwould findGodandthefaithtogetmethrough.Itremainsmychurchhome,evenintheashesofthefiresthatburnedthestructuretothegroundthisyear.

To the heroes of Rex’s school days, from Kindergarten to seventhgrade, 6 exceptional one-on-one aides. Without your singular caringcommitment to Rex throughout his “hard school days,” he wouldn’t bewhere he is today. KD (Khadevis Robinson)—the national runningchampion,whomoonlightedasRex’sdevotedschoolpal,andmyfriend,during the toughest of times. Ari, your incomparable sweetness was alight to my heart. Nanette, your tireless discipline and commitment tohelpingRexwasendless.Caroline—yourartsy creativitybrought life toRex.Catherine, thanks forseeingmymother’sneedsaswellasRex’s.AndRex’scurrentschoolaideandpal,theincomparableJimONeil,youmakeschoolnot just learning,butfunforRex,andwhobutyoutotakehimoutsurfingtocatch3long,amazingridesintotheshore?

ToRex’spianoteachers:

SaraBantaatPepperdineforyourlovingguidanceinRex’smusic,andcreativegenius inproducingbrilliant improvisationson thespot,and forbeingthelightbehindRex’sperformancemusic.

David Pinto, you bring magic and laughter to Rex’s music everySaturday at your wonderful Academy of Music for the Blind. An extraspecialthankyouforgettingRextoreadBraillewhenIhadgivenup.AndtoDavid’swifeGayle foryour lovingandpatientpersistence inpushingRex further in other disciplines, such as computer skills and Braillereading. Thanks to both David andGayle for trying “Braille” onemoretime,eventhoughMomhadgivenup.

LynnMarzullifornurturingRex’s“touchoftheDivine.”

ToAngelaRasmussenRex’svoiceteacher,whowentwithRexonhisprecocious and vertiginous voice slide at 11, helping him land his littleboy’ssoprano intoasurprisingandresonant tenor/baritone justmonthslater.

To Gloria Terry Knutson and Jennifer Jackson, Rex’s two first loves(other than Mom). You gave me crucial hours of respite and peaceknowingRexwasinyourlovinghands.

To my dear friend Raffaella, who stood by my side through eachhospitalizationandhelpedtoholdmeup.ToNaomiforyourprayers.ToSusanforcaringandneverforgettingaRexbirthdayorChristmas!

Tomyfamilyforyourprayers,andforbeingmyfamily.

AbouttheAuthorCathleenLewisspentahome-grownSouthernCaliforniachildhoodintherustic, throwbackOjaiValley.Thenat15,shewent tocosmopolitanRiodeJaneirowithaBrazilianexchangestudentfromherhighschoolforasummer, and a need to leave home and see theworldwas born. Shewenton toearnaB.A. atStanfordUniversity in InternationalRelationswithhereyesontravelandlifebeyondthe“Ojaiorangegroves.”

Aftergraduation,asummerinParis,achanceencounterwiththeheadof a Parisian modeling agency, and Cathleen decided to “stay for awhile.”That summer turned into12yearsof living inParis.During thattimeshe initiallyworked in theglamorousworldof fashionasamodel,then returned to school to earn a FrenchBusinessDegree,which sheappliedinthefinancialmarketswhenshewasgiventhemissiontocreateacurrencyoptionstradingdeskatthelargeFrenchbank.After7yearsofthe challenging and fast-paced currency markets, the demise of theEuropeanMonetary System coincided with an extreme urge to “returnhome,”andtheauthorreturnedtoCalifornia.

Butaftersomanyyearsabroad,Californiadidn’tquitefeellike“home”anymore. Another chance encounter, this time in Los Angeles, andCathleenmet themanshewouldmarry.SinceRex’sbirth, her life hasbeenconsumedbytheloveandresponsibilityforherson.Thebreak-upofhermarriageonlyserved to reinforce thatabsolutecommitment.Herstruggles to advocate for Rex in the public school system made herawareofagreat lackofvisionspecialists in thesystem,andespeciallythosewithexpertiseinautism.Cathleen’spassionforherson,anddesiretohelpotherkidslikehim,alongwiththeirparents,ledherbacktoschoolonceagain,thistimetoearnacredentialasanEducationalSpecialistinVisualImpairments.

Cathleen lives in Malibu, California, where she currently divides hertimebetweenherworkasaVisionSpecialist,thedemandsofherlifeasa singlemom, raisingher complex son, and travel around theworld toselectspeaking/pianoplayingengagementswithherson,wherehecan

sharehisgift,andshecansharethemiracleandbeautyofRexandwhatit’sliketofinally“comehome.”