Having a sister like Meghann has not always been easy. If she had only had a
problem every now and then, maybe it wouldn't have been so bad but her problems started from day one. Maybe it was because she was born on Friday the thirteenth, all I know is it seems like a lot of things have happen to her.
Ever since she was born, I've known that she has had different problems. I didn't care because I really wanted a baby sister. I had two older brothers and that was enough.
Right after she was born, the doctors decided that she needed to go to a
hospital that knew how to take care of children who were having problems. The
day she went down to Sacramento my Dad and I were driving around town getting
things together so that my Mom and I could go down and stay in Sacramento to
be near my sister. I carried a sign saying "I was the Big Sister" and when
people asked me about my baby sister I would tell them that her name was
Meghann and that she had a little problem with her throat. I was too young to
understand everything that was wrong, I only knew that things weren't exactly
the way they should be.
My sister was born with Pierre Robin Sequence. What that means is she has a
recessed jaw, a downplaced tongue, and a horseshoe shaped cleft of the soft
palate. When she was born, she had trouble breathing and my Mom said that she
couldn't be fed with a bottle. I got to go in to see her in a room called the
NICU. That means Neonatal Intensive Care Unit. She was in a incubator and
had a lot of wires attached to her and a plastic cover over her head putting
extra oxygen to her.
Because she had so much trouble eating they put in a thing in called a g-
tube. This is a tube that goes straight through her belly to feed her. My
Mom had to put Meghann's milk in a large syringe and connect it with the tube.
When she was done feeding her, she would shut off the tube.
I guess if you want to look on the bright side of this, she didn't have to
taste the awful medicines she sometimes would get when she was sick. Also the
syringes made fun squirt guns for my brothers and me. We use to use the older
used ones and run all over the place squirting at each other.
My mom told me when Meghann still had her feeding tube we were visiting some
friends and the woman's little boy came over to get a chip. My mom told me I
had to ask his mom if he could have a chip cause he was so young. I looked
back at my Mom and said, "we can't give Meghann chips either can we Mom?", and
she said, no we can't. And then I said that's because we can't break them up
and put them down her tube. My mom said she didn't quite know what to say to
that so she just kind of left it.
There are a lot of things I don't really remember when she was little, except
that Mom and Dad worried alot. There were lots of doctor appointments and
several surgeries during those first 2 years.
When she was almost two, she slipped and fell down. She started limping and
it didn't get better. That's when we found out that Meghann also had Juvenile
Rhuematoid Arthritis or JRA for short. Some days Meghann would crawl out of
her room crying, cause it hurt so much.
As her JRA got worse, she started to have to go to therapy. She has one leg
that will not straighten out and she has one elbow that doesn't straighten out
either. Sometimes it just didn't seem to be fair. She got to go swimming
three times a week and go in a spa. All I got to do is sit along the side of
the pool. My Mom kept telling me that this was work for my sister, but it
sure didn't look like work to me. It looked like fun.
Then Meghann's doctor in Sacramento retired and my parents had to look for a
new specialist. The closest one they could find was in San Francisco.
This was kind of neat. Before Meghann had to go to the doctors in San
Francisco we never had been there.
After Meghann's appointments, which sometimes took hours my Mom and Dad would take us to different places in San Francisco. We rode the cable cars, went to
Pier 39, and other places. We even walked down lombard Street, the part that
is really curvy. But we had to be very quiet when my Dad drove over the Bay
bridge, he said that people drove like maniacs and he needed to pay attention
to everything not us.
Sometimes I feel sorry for Meghann. At night she has to wear a brace. She
has to take medicines to keep her joints from being inflamed. She has to wear
special shoes sometimes. She has had to wear casts for months at a time and
once even had to stay in a hospital for 5 weeks and we could only see her on
weekends. She didn't want us to leave to go home on Sundays. I think
everyone cried at one time or another about that.
But there is one thing that makes me really mad. That is when people think
she doesn't belong doing something because she has some physical problems.
She might not run as fast as some people and she might not have the
straightest legs, but she does her best. She never takes advantage of the
fact that she has arthritis, but I see people all the time taking advantage of
things that are happening to them.
Meghann is my sister and I love her. But we are sisters. There are times
when I am mad at her, and we argue about who's turn it is to do things. There
are times she says things just because she knows it will get me in trouble.
But when people say mean things about her I let them know that she's my sister
and they better just be quiet.
My Mom has a poem called something like in other peoples eyes...My sister's
problems are in other peoples eyes, because as far as she is concern she isn't
the one with the problem.
by Robyn Gerfen
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Copyright & copy. 1999. Last Updated - 05/03/99 22:35:14