Tuesday, October 09, 2012

Growing Up With Cerebral Palsy

My younger sister, Tina, has cerebral palsy.  She's done a lot of things in her life despite this fact, things like everyone else.  She went to college, she worked, she married, she had children, she traveled, she even lived in Japan for a time.  Later, she endured a divorce and carried on raising her children alone.  She lives in her own home, drives her own car and has her own friends.  However, all of those things are a lot more work for her than for anyone else.

Tina's life has always been a lot more work than for most of us.  She was such a pretty little blonde girl with a big giant smile!  We are close enough in age I don't really remember watching her learn to walk but it had to have been scary as she had to learn to walk with crutches.  Can you imagine?!  I remember her being just a little tiny girl walking with big clunky braces and teeny, tiny crutches.  At that time, that just seemed normal to me.  That was just the way she walked.

If I remember right, Tina started school in a hospital.  She was 5 years old when our whole family moved to Lincoln, Nebraska.  The reason for our move was because she had a long, long time to be in a hospital.  She was only able to be at home for holidays.  During that year she underwent a lot of misery.  Her hips were dislocated and the process to help her was grueling.  She was in a cast up to her waist with openings for her to go to the bathroom on a bedpan.  There was a bar between her feet.  At intervals, maybe weekly, they cut the bar and added more to it.  Each time we visited, her feet and legs were spread further and further apart until she had her legs sticking out almost to the side with a big round bar holding her legs that way.  It was awful.  I remember that bar very well because when she came home for holidays I shared my bottom bunk with her!  Looking back, I can't imagine how she endured all that.

When Tina was a first grader we were living in Scottsbluff, Nebraska.  Because she was handicapped, she wasn't allowed to go to school with us.  She had to go to a special school that had a classroom for handicapped kids.  I wish I had that photo here (it is at our Mom's house) of her first class.  She's so cute, all smiley and pretty.  In the photo, though she is maybe 6 years old, her classmates are much older.  They ranged all the way through high school age.  Most of them had handicaps of a cognitive nature.  I think Tina had a fun year and didn't know any difference, but that photo always makes my  heart sad.  I can't imagine how it made our Mom feel.

 Later, we lived in places small enough that there were no special classrooms for handicapped kids.  Thanks be to God!  Tina was a very smart little girl and needed a chance to learn alongside her peers.  

Unfortunately, Tina had more to endure.  When she was a third grader she had to go back to that hospital in Lincoln, Nebraska.  Our family had very little money and our Dad was trying to finish college and support us all at the same time.  Tina spent a lot of time in Lincoln, away from her family.  Later, that was repeated when she was in 6th grade or so, in a Shriner's Hospital in Minneapolis.  By then we were living only a few hours away and got to visit a bit more often but she still had to endure pain and frightening procedures alone.  On a side note, though, we all remain grateful to the Shriner's for offering all those services at no charge.  That's amazing.



Tina is smart.  In spite of her strange classroom experiences, she did well and later went through high school in only three years.  I think that those teen years were pretty tough, not that she'd say it to us then.   She was pretty, smart and sweet but a lot of teens, struggling to fit in themselves, did not take the time to get to know the girl on crutches.  I think most were nice to her, but few took the time to develop a true friendship with her.  That can't have been easy on her but it surely made her appreciate those who did see beyond the crutches.  Thankfully, as an adult, she has found a variety of kind and caring people who have been true friends to her.

Tina now writes a blog, Living With Cerebral Palsy, that helps others who are dealing with similar obstacles.  Her blog is also helpful to the rest of us, helping us better understand.  I spent my childhood with her and I still learn things from her blog!  I'm afraid that I was a typical kid, seeing things only from my own perspective and not always realizing what childhood was like for her.  Reading her blog can be eye-opening.  Today, she has a particularly clarifying post.  I really, really hope that you will click here to read what she has to say about living with constant muscle spasms. It's not a whiny post; Tina is not a whiny person.  It is, however, a post that may make you appreciate your own muscles a bit more.

I remember talking to Tina, when we were kids, about how it feels to be unable to walk.  She told me that it just felt normal.  In fact, she told me that the thought of walking like the rest of us was probably the same as it was for me to try to explain how it feels to not be able to flap my arms and fly.  She is, however, looking forward to heaven and to a time when she believes she will be able to walk.  I like to think she'll also be able to fly!