Range of Emotion Claudia L Weisz

Physical therapists speak of the range ofmotion given to patients with physical handicaps. There is for families, a "range of emotion" that is part of having a handicapped child. My daughter fills me with both joy and pain, yet she is complete­ly passive. She speaks only with her eyes, and I am learning to listen with mine.

In this article I show a rare glimpse inside the heart of a mother with a severely retarded child. It is an honest account of the range of emotion felt, the values that have been affected and the intense love I feel. Our bonding that is normally developed between mother and infant grows only stronger and lasts forever. Key words: Emotion, teacher, student.

RANGE OF EMOTION Once I saw a man who was dying of cancer being inter­viewed on television. The reporter asked him if he ever felt angry that he would not get to watch his four-year-old son grow up. "No," he replied. "There are worse things that can happen, like having a retarded child."

It's my personal experience, not just a feeling, that there are also worse things than having a child with Rett syndrome. With each child we are given a bag of joy and a bag of pain. Angie's bag of pain is larger than most, but her bag of joy is filled with extremely high-quality stuff!

I wish you could see her smile. When she smiles, some­times her eyes twinkle so brightly I fancy I see her soul fairly bursting to get out. Have you ever seen a baby smile allover? Doesn't it make you happy too? Well, that's how Angie smiles. She makes me happy. Here is a child who should be a freshman in high school this year, worrying about algebra and boys. Instead, she loves to be held tightly across my lap and dipped suddenly backwards to the tune of rock-a-bye baby; she loves to have me hold her hand up in front of my mouth as I kiss each soft, barely-used fingertip, while she watches with intensity, momentarily stopping her repetitive hand-wringing. She often grins when I pull her pajama top over her head and say "peek-a-boo!" I am always impressed with her patience with me when I try to imprison those compulsive

From Claudia L. Weisz, Board of Directors, International Rett Syndrome Association, Editor, I.R.S.A. Newsletter, USA.

Correspondence address: Claudia L. Weisz, 3817 44th S.W., Seattle, WA 98116, USA.

Weisz CL. Range of emotion. Brain Dev 1987;9:543-5

hands to keep them out of her mouth, or try to read in her eyes just what her needs are. Small things to some perhaps, but we communicate, she and I. When we look into each other's eyes there is no wounded relationship between us to mend. Our souls speak and I feel intense joy and swelling of love in my heart, no different in inten­sity than that I feel for my other children when I am extremely proud of their deeds.

But Angie doesn't have to do. She is. That's all that is required of her. Oh, certainly we try to teach her-we will never give up, yet my love for her is not dependent on her performance. I am learning to value others the same way. I am now a retired perfectionist.

I suppose every parent hopes for a miracle and rm no different. I've seen enough to know they exist, I've ordered one, and I suppose I'm on some sort of waiting list. Barring that, perhaps it will be miracle enough when Angie passes from my hands to God's and sheds Rett syndrome just like a butterfly sheds its cocoon. She'll be free then. She'll soar higher than you or I ever will here on this earth.

Reading what I have written is sort of like opening up that bag of joy again. I have found that joy is a fragile thing, easily broken, while pain, on the other hand, seems somewhat sturdier. As previously mentioned, these two go together. It might be difficult to believe the following was written by the same person as the foregoing, but it was.

TEACHER Sometimes I hate school. My daughter is my teacher. She is profoundly retarded. She has, among her many pupils, a slightly rebellious one. Me.

Patiently, she teaches me things I'd rather not learn .

Things , in fact, I'd rather not even hear about. She has

insisted that I buy classroom supplies for which I have no

room. Wheelchairs, therapy balls, and other things seem

too expensive compared to their counterparts for the non·

handicapped. This wise teacher has deemed it necessary for me to

readjust my values, values I had previously thought would

serve me well a whole lifetime.

Uke a child pulled in from a joyous summer vacation,

my freedom has been cut off. The seats in our classroom

are cold and hard. The desks are not a comfortable fit for

my restless soul. I look outside the classroom window and

long for recess. I look back and her eyes are upon me. She

knows. In my chair I straighten, and force a guilty smile.

Slowly, she shuffles over to my desk and places a useless,

saliva·soaked hand upon my shoulder. Leaning into me,

she plants a wet kiss on my temple. I recall how I used to

passionately hate the drooling, washing it away, angrily

telling her to keep her hands out of her mouth. Now, I

merely wipe it away with the back of my hand. It's

nothing. She nuzzles my hair as she leans further, two dark,

curly heads, one. ''I'm tired," she tells me, without

words. "Help me sit down," is her silent request. She

walks less now and tires earlier . She speaks now only

with her eyes. My back to the window, I turn her around and pull her

form down next to mine. Her quiet sigh and searching

look tell me I have passed this test. A mere mark toward

my final grade. But I don't pass them all.

Wearily, she closes her eyes, Sinking limply into the

cushion behind her. It's hard work teaching students like

me. As I pull her to me, pressing my cheek against those

slightly coarse curls, I remember her before she was a

teacher. A bright and sunny baby, eyes filled with mis·

chievous sparkle, crawling around on all fours. An open·

door was an irrisistible temptation to her. I was to be her

teacher then. Yes, I wanted to be the teacher. No wonder

I rebelled as time went by and I found that it was to be

the other way around. Oh, I had my day, for a while . We loved to sit and look

at books together. She would meticulously reach out and

turn the pages. She still loves books, as most teachers do,

but she can no longer turn the pages, or even hold the

book. Open stairways were tiny hills to be explored, when

she was a baby. She flew up on hands and knees, and

bounced down on her tummy in those happy days. They

became mountains, as she grew older and her shoes

seemed to be filled with lead. How I hated those lessons.

Oh, the anger and tears of frustration as each step became

a study in concentration for us both. It seemed she had all

the time in the world, but I didn't. I had been thrust into

544 Brain & Development, Vo19,No 5,1987

a class of college·level Patience, though barely qualified

for its grade·school eqUivalent.

I loved my teacher, but passionately di~liked school.

I didn't want to learn about range-of·motion. I hated

keeping charts on how often my teacher went to the

toilet and what she did there. Nor did I want to keep

track of every morsel of food she ate and ounce of liq·

uid she swallowed. But my doctor·counselors, wise and

all-seeing, told me I must. For aside from the skills she

was losing, she was losing weight.

"Your teacher is dying," they told me one day. "We

don't know why." She was three. I was eighty, at least.

Did this mean school was going to be out? Vacation at

last? For an instant, a surge of emotion, was it relief'?

flooded over me. I would be free. It lasted only for an

instant. For I realized that I would never in this life see

my teacher again. I would never hold her warm body nor

feel her head on my shoulder nor hear her laughter. That

I could not bear. So what if she was losing skills? So what if she couldn't

use her hands? She could still teach, couldn't she? And

perhaps, if I was just a bit more willing, I could still learn.

It was here she introduced me to God .

She proved them wrong , this spunky little teacher.

Perhaps she would teach them something, too. But not

just then. "Let them wonder what is wrong with me"

she decided. "Does them good ."

As the years went by , it seemed the lessons grew easier.

The hardest ones had been in the beginning, when it was

all so new and frightening. I cried a lot then. She laughed

at my tears . I thought I was crying for her, but how can

you cry for a happy soul? We are somewhat isolated in our classroom, but not by

choice. Perhaps we are too content with that. A year ago,

after thirteen years of wondering, the doctors finally

learned the name of my teacher's disease. It's called

Rett syndrome and it's been around longer than she

has. With this discovery we are no longer isolated. I've

talked with other students and we discuss our teachers

thoroughly . In separate classrooms, with different teach·

ers, we have been learning similar lessons in Advanced Joy

and Pain I and II . Each day has 36 hours . The classroom is a large one, it

gives me room, but my soul still longs to taste the world

outside. Or I should say, the world without. For just a

week or two, that's all I need right now. A week or two

without. I can't leave my teacher alone, however, and not many

want to sign up for this class. I don't blame them. For

me, it is a required course. For them, an elective, and

more like an occasional seminar than a lifetime commit.

ment. Doesn't anyone see my face pressed against the cool

glass of the classroom window? Or do they see me rocking

her, quietly singing nursery rhymes written for children

one tenth her age and think, "I can't." Do they hear our laughter and sigh in relief that we are content? How do I break the glass of the window and call for help without cutting my pride to shreads? How do I call one I love so deeply a burden? Would she know? Would it hurt her? Would it hurt me?

I would like to believe in a Fairy Godmother who will swoop down on me and say, "My dear, you need a rest.

I'll care for her just as lovingly as you do. Have fun! Ta-ta! "

Ha! So much for daydreaming out the classroom window. A favorite pastime of students, I know. Mental rebellion is about as far as I can go for now. It is all I have strength for, this semester. Maybe someday, someone will change the rilles, or I will swallow my pride, or my teacher will die. Or I will.

Weisz: Range of emotion 545