Life With a Sibling in a Wheelchair

I don't know how many times I've been asked what it's like living with my brother. And in my 22 years I have yet to come up with an accurate description to answer that question. He's special, he's different, and he's my brother. Is there really any more to it than that?

Sometimes he pouts; sometimes he gets on my nerves. Sometimes he makes me laugh so hard I can barely see. I don't always regard him as the gift that so many others refer to him as. I don't always like having him around. But I always love having him there.

The complications, the chaos and confusion that occurred the day he was born are not in my memory. I was three years old. All I understood was how to make tents out of blankets and play house with my Barbie doll. The most difficult decisions I faced usually dealt with what color of crayon I would use. However, I have heard stories about what happened March 2, 1983.

Some of them are from Mom; others are from Dad; never are they from both of them together. I only get answers when I ask questions, but sometimes there are questions you don't ask, even in a family as close as ours. When I was three, I wasn't able to understand. Now I'm older, and it is difficult to ask the hard questions that I have never known the answers to.

I know Mom blames herself. Dad wishes he could have done more and Shay--well, he doesn't say a lot about his situation in life. That's the amazing thing about him: I've never heard him complain.

See, he wasn't supposed to come to us until the end of May. Three months premature is a huge obstacle when you're a baby, especially when you only weigh two pounds. The doctors said it's common in cases like these. What they mean is Shay is a twin. His brother was born about 1 hour before him. Shay was the weaker of the two. Doctors also told my parents that sometime during the complications of labor Shay's air supply was cut off. They think that's when the damage occurred.

In the pictures he was so small. Mom tells me that after about three weeks in an incubator and hundreds of tests, the doctors discovered two small holes in his heart. One of the valves had not fully developed. The surgery required to fix it would be so strenuous that the doctors only gave Shay a 50/50 chance of living through it.

Dad says the day Shay was to be life-flighted to a bigger hospital for surgery he was out working in the fields. No one blames him. He still had three young children and a wife at home to provide for, but I think that working kept his mind off the situation. Besides, he hated hospitals. According to him, everything bad happens in hospitals.

This is about the time Dad found religion in his life. That day he knelt down in the middle of a field, surrounded only by onions and beets, and he prayed. I don't know exactly what he said, but I'm sure it was fairly simple, "Help my baby."

That day a miracle happened, one of many that were to come. Just before flying him out, the doctors ran one more test on Shay's heart. The holes were gone. The surgery would not be necessary.

Shay continued to grow and eventually his prematurity was not an issue. For all we knew he was as strong and healthy as his twin brother. We didn't find out until he was a bit older. Mom first noticed he wasn't crawling as soon as his brother. He couldn't hold his head up and his reflexes where slow.

She took him to the doctor. More tests. He was about a year old when he was diagnosed with spastic cerebral palsy. They told us he would never be able to walk without assistance and that his fine motor skills would always be weak.

I don't know if my Mom took it hard or if she just found out something she had known all along. It was a hard thing though, especially at first. Again, I was much too young to realize. To me he was just another brother. He was slower than most and of course he required a lot more supervision and care.

From the beginning though, he was treated the same as the rest of us. He was given weekly chores, and he was expected to keep his room clean. I remember once Dad built him a special bike so that he could ride with the rest of his brothers and sister.

So, there were little things that made it different, but having Shay around when I was little was so much fun. He had the best toys--a walker; that large therapy ball we used to roll around on; and my favorite: his wheelchair. It was a child's dreams come true! That thing would keep us entertained for hours.

I remember one time--it was school conference week and Mom was meeting with our teachers. For some reason Shay and I were the only ones at the school with her. We were waiting, and as many bored kids do we began finding ways to entertain ourselves. At the school there was a long sidewalk that ran from the main entrance to the street, a good 100 yards long. The sidewalk was skinny and full of cracks, and in our minds the perfect track. First I would take a running start pushing Shay in his wheelchair and when we got going fast enough, I jumped on the back and we would cruise down the sidewalk. When we got close to the street, I'd simply put one foot down and drag it along the sidewalk until we came to a full stop.

We had come up with the most fun game ever! We pretended like we were Olympic bobsledders. Then we were drivers in the Indy 500. Up the sidewalk and then down. Up and down. Up and down. It was on our final run I began pushing him, this time running as fast as I could, because by now we were afraid of nothing--we only wanted speed. I pushed and pushed, then finally jumped on the back of the chair. It was at this point I realized how fast were going so I put my brake foot down. I stumbled and was forced to bail.

I will never forget the look on Shay's face as he turned around to look at me, first with a huge smile, then with the biggest terror-filled eyes you've ever seen when he discovered I was no longer on the back of the chair. From there everything seemed to happen in slow motion: me running down the sidewalk yelling for him to stop, all the while two things running through my head: "Oh no, what if he rolls into the street and is hit by a car!" and "Oh man, Mom's going to kill me for this one."

Shay kept rolling. He even seemed to gain speed. Fortunately he was no longer riding towards the road. No, instead he was going towards the edge of the sidewalk, right for a huge crack that was sure to send him flying from his chair.

Well, to make a long story short, at the last minute he grabbed one of his wheels and jerked as hard as his little hands and arms could jerk. He stopped about an inch from the edge of the sidewalk, saving himself from most definitely a very painful tumble.

We didn't play that game again--at least not for a long time. We didn't tell Mom about that day either, not until many years later when she could laugh about it.

Shay has made us laugh. He is very quick-witted. I think it surprises people. They assume he isn't quite there mentally because he's limited physically.

A lot of people don't know how to react to him. From the time we're little we're taught not to stare at the kid in the wheelchair. So instead, they just ignore him. Shay hates to be ignored just as much as he hates being stared at. At least the staring he can understand.

I've wondered before if maybe his twin brother feels left out. Shay has required a lot of attention over the years, and due to his situation he always got a lot of it. That's one reason they were separated in school. In second grade Shay was held back a year in order to give him more time to catch up with things. I think this is one of the wisest things my parents did because Shay was never pushed to compete with his brother and his brother was able to have his own identity and limelight from time to time.

School wasn't always easy for Shay, but I think it was fun for him. He was popular and everyone seemed to love him. It's strange that it's all gone by so quickly. Now he's graduated.

Graduation--ahh, the day had come when he is no longer a child. "Is it possible?" we all asked ourselves. It rained that day, harder than it's rained for a long time. Graduation was held outside and we were all worried that he wouldn't make it up the slippery ramp. Mom started crying because she was so worried. She knew that if he tripped it would embarrass him but he'd pretend like he meant to do it or something like that. Mom knew how he really felt.

He didn't trip. In fact, when he walked up the ramp and across the stage and they announced his name, the cheering was deafening. The whole town seemed to be there just for him that night. They were proud of him. See, he was the one that everyone knew, if not by acquaintance then by sight. He was special to our little town and everyone knew it.

That was only a few short months ago. He takes classes at one of the nearby colleges now. I know it's tough--the courses, the long bus rides to and from school. Yet he always has a funny story to tell, like how the really good-looking girls on campus must not be too smart because they're all in his classes. The jokes make it easier for everyone. We all know that he's going to have to put three times much effort into doing things that come easy to the rest of us. For him that's how it is. He tells the jokes to make other people feel better as if to let them know that he's happy, just the way he is.

There are a lot of memories: funny ones, sad ones, simple ones.

So, back to the question, what is it like living with my brother? I guess I'd have to say it's good. Real good. Maybe you should ask him what it's like living with me. You might get a better answer.

By Shante' Tinsley