Twenty-six years ago I gave birth to a beautiful blue-eyed,
red head little boy. That first year was
a doozy! Ben was diagnosed with Opitz
C Syndrome, deaf-blind, and medically fragile at the age of 14 months. Like many of you we have spent many nights in
the hospital and many hours in the OR waiting room.
In looking back on all the adventures we have experienced
with my Ben I am grateful for the things I have learned. I hated, yes hated every transition to a new
school, new teacher, new doctor. I had to explain Ben all over again. I
would go through the grief process of accepting he wasn’t like all the other
boys his age every new school and I dreaded it.
I felt guilty because my other children had to mature faster than their
peers. I had to be able to rely on them in an
emergency. I had to know where they
were all the times in case we had to run to the ER. They spent many hours in the car traveling to
therapy and at doctor appointments, they cheerfully used sibling rivalry to get
their little brother to do things and reach his goals.
When Ben was little I thought things would calm down the
older he got, less illness, less parts of his body to fix, less stress. I was
wrong. The things I worried and stressed
over just changed as he got older. If he
had a good health year we would have issues with the teacher/classroom. If he had a great teacher, we had issues with
his health. I used to call it the Ben
game, and he changed the rules of the game every day.
We include Ben in everything we do. He was the unofficial mascot to many sports
teams. He went to most activities his 3 siblings
participated in; Band, soccer, football, swimming. He has gained great friends, and taught many
lessons of love. At this point all his siblings
have grown and moved out. He has nieces
and nephews now, (okay so he really isn’t very fond of them, they take all the
attention away from him.) but he likes attending their soccer games and playing
video games with them. At this point, we
are a family of cyclists. Ben and I are the
official support crew and we follow them on their longer rides. Ben loves blasting the music in the car for
the guys to ride to, and he is still making friends and teaching love lessons
to those around him.
I still consider Ben a kid.
I always will. We still have
hairy days, Poopy days, Non-poopy scary days. Days I know he is sick but no one believes
me. Scary, he is in shock and I don’t
know why days. And on the flip side we
have funny tease the Mom days, Play the
music really loud,(because he is legally deaf) days. Let’s just sit outside and watch the world
go by days.
Our lives changed forever when Ben was born. He has taught me lessons I would never have
learned any other way. As he gets older
he continues to teach me new lessons. I
may not have to worry about school clothes, IEP’s, and other school age things,
but I get a whole list of different things to worry about. I guess that is part of the life of a family
with a child with a disability. We learn
and grow, then we learn something else, and then something else again. Ben and I keep getting older. We keep learning new and different
things. He keeps me thinking, working,
loving, scheming. He makes me appreciate
what he is and what I have. He keeps me
living.
~~ Karen Cox, Utah Kids
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