My Brother Jon

Disney World -- March 2004

I know this photo was taken quite some time ago. (I was quite thin and younger looking compared to now.)
I was browsing through my photos and found this one, which has always been a favorite.
This is my brother Jonathan.
He has Cerebral Palsey.
I know he looks checked out in this photo, but I promise he almost always has a smile on his face.
I think he was yelling at whoever was taking the photo to hurry up and take the photo already!

My brother's CP was hard on me when we were growing up.
For a long time, I didn't understand why Jon didn't or wouldn't do the things that the rest of us did.
I remember a little wooden children's table and chair set in our bedroom.
(I must have been about five or six.)
I kept putting Jonathan in a chair so that he could sit at the table and have a tea party with us.
He must have been about two then. Old enough that I knew he should be able to play with us but light enough that I could pick him up.
Jon kept falling out of the chair, tipping sideways and hitting his head on the floor.
I kept picking him up and putting him back in the chair.
When my step-mom came in and discovered what I was doing, I got a good putch on the hinder and a talking to. "Don't you know he can't hold himself up?" I remember her yelling at me.
That was the moment it finally clicked for me.

For several years, I understood Jon's physical limitations but not his mental.
I talked to him like he was any other kid.
I made my mom show him the pictures and words in books. "How is he going to learn to read if you don't show him the pages?" my mom recalls me saying.

Can you imagine the pain I felt when I heard him crying, asking his mom why he couldn't come out and play with the rest of us kids?
I stayed inside with him one time. He asked me why he wasn't like the other kids.
He asked me why no one wanted to play with him.
He asked why he couldn't walk or run.
He told me he was going to walk someday.

When I got to high school, Jon was my buddy.
I helped with bathing, bathroom, feeding, general care.
I took him to movies or out for ice cream or just a cruise in the car.
I let him brush my hair and we would snuggle and just talk.
We were very close at one point.

I moved away for my senior year of high school, and that's when our relationship really started to dissolve.
My brother Mike sort of took up my role.
Jon seemed to think I had abandoned him.
When Mike moved out, my sister Bethany took up the role.

Now Jon lives in a group home.
He has a job.
He has friends.
He goes shopping, out to eat, enjoys a good beer from time to time, loves bowling.
But he seems acutely aware of how different he is. He seems to get depressed from time to time.

Yesterday, my brother turned 24.
Pretty good for a kid whom the doctor's told my step-mom wouldn't live through the night.
He was three months premature in 1987.