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TRANSCRIPT
5/17/2017
1
Changed By My Child
Lessons on
Caring, Living,
and Dying Well
by Lois Swope
Creative Health
Care Management
Symposium
June 21, 2017
“Just because I’m silent doesn’t
mean I’m ignorant.”
Lois, Leah & Karly
5/17/2017
2
Karly & Pokito
Karly,
5-6 years old
Amy & Karly
5/17/2017
3
“That song changed my life... I was a
composer! I was a musician.
I had a voice that others could
hear.” - Karly
Karly & Karen Bohnert,
music therapist
Everyone is more than their symptoms:See the whole person, not just their diagnosis
Lesson 1
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4
“Don’t let
Rett Syndrome be
the only thing
said of me.” - Karly
Karly &
Elizabeth
“Assume Intellect”:Trust the experience of the patient and their family
Lesson 2
5/17/2017
5
“Just
because I’m silent
doesn’t mean
I’m ignorant.”
– Karly
“My brain is intelligent,my body struggles.” – Karly
5/17/2017
6
“Many of my
memories of going to
doctors and therapy visits
are painful to
remember.”– Karly
5/17/2017
7
“I am more than my body. I am.” - Karly
“My Pony, My Beau”
Every patient has a backstory:Be curious and compassionate
Lesson 3
5/17/2017
8
5/17/2017
9
5/17/2017
10
“The Cruel Stare”
Karly & Gregg
Death is part of life:Accept that mortality is not failure
Lesson 4
5/17/2017
11
“Just because I’m silent doesn’t
mean I’m ignorant.”“I’ve said yes to everything I was
supposed to do here.” - Karly
5/17/2017
12
“My favorite place on Earth
is on the back
of a horse.”
- Karly
Last ride on Chester
5/17/2017
13
Thank you.
Special thanks to Creative Health Care Management,
Barbara McAfee, Chris Bjork for Tech Support, Gregg, Leah, and friends who believe our story needs to be shared.
Contact:
loisswope.com