January 29, 2003 Student
News
Life
With a Sibling in a Wheelchair
From the Hard
News Cafe (1/28/03)
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
utah
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