For Parents
by Kevin,
An adult with hemiplegic cerebral palsy
I can say what I am about to say perhaps only because my hemiplegia is slight---
affecting primarily my walk, left foot/leg size and the motor skills of my left hand.
It was however severe enough to warrant four operations, years of braces,
therapy, and ugly orthopedic shoes.
While I feel that I got off lucky, the experience of hemiplegia not only scarred my
life as a child, it in essence became my life. Here, though is the odd part: My
disability, perhaps because I willed it to do so, changed my personality and the
essence of who I am for the better. While it made me an outsider, it also gave
me compassion for all outsiders. While it forced me to suffer physical pain, it
gave me the ability to respect and empathize with the pain of others. While it
drove me to the very depths of sadness as a child, I also learned early to laugh
(at hemiplegia, at the slings and arrows of life) and have a strong, sardonic sense
of humor that I carry to the present. While it made me different from other kids, it
caused me to come to grips with the good things inside me that truly made me
different and special.
The final odd part: I am who I am in large part because of my disability. If some
magical omnipotent entity came to me now (as I dreamed and hoped as child
that someone would), within a few months of my 45th birthday, and said that it
would remove hemiplegia from my life entirely --from the beginning--and with it all
the changes in my being and personality that came with it, I would respond with a
polite but firm "NO". I like whom I have turned out to be, funky walk and all, and I
value too much what I have learned in my personal school of hard knocks. This
is a personal statement, and applies only to me. I am not a masochist and, if my
disability were greater, I am sure I would not respond with the "NO". I am
humbled by the levels of pain and compassion and worry and hope and love on
this list of parents of children who have hemipelgia.
I sympathize, in a way few people can, with the pain that hemiplegia has caused
you as parents who love your children. The things I have learned from
hemiplegia are not gifts but silver linings amid dark clouds. I am a great
believer in silver linings. I want to give you the thought that there might (and only
might) be some small good things that your children have received or will receive
in life, which may be linked in some way to hemiplegia. At least this is my hope.
Kevin
One Step at a Time
By Sam Troia
I spent a little more than nine months taking care of a boy who has cerebral palsy.
This is Kaleb.
Each day I worked with him I had the pleasure of picking him up from school and either going to therapy, or looking after him at home until his Mom had finished cooking dinner. I took him to therapy every Monday and Wednesday and over the nine months I was with him I learned so much.
Kaleb outside of therapy
Kaleb has been wheelchair bound his whole life but his goal for therapy was to walk. I watched him overcome fear and frustration and be able to take steps on a treadmill and with different gatetrainers.
Kaleb walking
But these days of success were also followed with pain, frustration, and doubt. I will never forget the day where Kaleb did not want to walk. Every other day he would get into therapy and he would want to start walking before his therapist even had a chance to say hello. But on this day, he did not want to do anything. He wanted to go home. He said it over and over again and we could not figure out what was wrong. We cut therapy short and on the drive home we sat in silence. Kaleb and I usually would play some sort of pretend, talk about our families, or sing, but not today. Today he just stared out the window while I drove him home. Once we got to the house I asked him again, "Come on buddy, you can trust me. What's up?"
Tears started to fill his eyes as he looked away from me and said, "I'm scared."
"Scared about what?" I asked.
"I'm scared that I will never walk." He stated as the tears began to roll from his eyes.
My heart sank. I put my arm around him and held him for a minute. I spoke up and said, "I don't know if you will ever walk on your own buddy. I can't promise you that. But I can promise that your mom, dad, therapist, and me will not stop trying everything we can to try to get you to walk." He smiled, took a deep breath and said, "Let's play!" I gave him a big hug and said, "I'll get the Wii set up!"
Even though I have stopped working with Kaleb, I will be working with him this summer.
I do have a message for him.
Keep stepping.
Every time you see your friends at recess running around you, keep stepping.
Every time you want to run away from therapy, keep stepping.
Every time you doubt yourself, keep stepping.
Because with every step you take, we will be right beside you.
We will pick you up when you fall, laugh with you when you laugh, and step with you when you step.
You will step. You can step. It is not going to be easy, and it will be frustrating, but you will not be alone.
Sammy
Message to Patrick
from Carla MacInnis Rockwell, a 44 year old woman with cerebral palsy,
to Patrick, and 8 year old boy with cerebral palsy
Hi Patrick,
My name is Carla and I was 8 once ... a long time ago. I also have cerebral
palsy. Not the same type as you, though. I have spastic diplegic cerebral palsy.
That affects the way my legs move.
Your mom is right. CP happens in the brain. It's sorta like a big bruise that didn't
go away. But at least we can walk, right? The summer of 1963, when I was 8 I
had an operation on my knees to help me walk better. I used to wear huge heavy
metal braces up to my waist with lots of straps. And the ugliest boots you ever
saw. That was from age about 2 to 8. From age 8 to age 12, I wore ugly below
the knee braces, and even uglier boots! From 12 til 28, I wore no braces. Yea!
And regular shoes!! For a brief time when I was an adult, I wore braces again,
but they were so awkward, I kept tripping over my feet. Guess where those
braces are? ... In my closet!!
When I was growing up, I had 1 younger brother, 4 older brothers, and 2 older
sisters ... big family. I learned how climb trees, ride a two-wheeler. Heck, I was
even on ice skates. What a sight that was! I used to ask my parents why I had
cp, just like you're asking your Mom. You know and I know that cp happens
when a baby is born too soon, or its brain doesn't get enough oxygen. Stuff like
that. But you know what, I like to think I have cp for another reason. That's so I
can show people what I can do without two typical legs.
As you get older, Patrick, you will realize that it's what sits on top of your
shoulders that is the most important thing. Develop your mind as much as you
can. But don't forget all those exercises and things to make your legs and the
rest of your body strong. Having cerebral palsy doesn't make you who you are,
or who you will become. It's just a tiny part of you. Being kind to others, and
understanding and gentle are far more valuable than running marathons will ever
be. But ... you can still work hard so you might one day run a marathon.
Anything is possible!!
Never forget, Patrick, there are lots of things you can do that don't need legs. A
president of your United States had polio and ran your country during a period of
war. A woman who could not hear or speak became a great writer and scholar,
using sign language to communicate.
I am 44 years old, and I am a writer. Perhaps your mother could read some of
the stories my terriers, Mr. Jake and Mr. Alex wrote. I hope you like them. I use
the voice of my dogs to explain about disability. Funny how animals know I'm
"different" in the way I move. Bet they are with you, too.
Asking questions about cp is a good thing, Patrick. Learn all you can about it, so
that when people ask you, you can tell them. And don't be worried if people
stare at you when you walk. Let them know that having cp isn't really such a big
thing after all. You can be sort of like a teacher, telling people about what cp is
and all about what you can and can't do ... yet. Hope you and your family have
a great summer. And if you know how to swim, get lots of that fun stuff in. It will
make your legs and stomach very strong!
Cheers!
Carla MacInnis Rockwell
