My Beautifully Perfect Son
Since
October is Down syndrome awareness month, I would like to introduce my
beautifully perfect son.
I was
blessed with Chris almost ten years ago after being unable to conceive for six
years. I have endometriosis and after years of treatments, I finally decided to
stop the hormone shots/pills. Six months later I was pregnant! My pregnancy
was perfect. I had no morning sickness and I wanted to redecorate the whole
house! It was a really fun time in my life.
Chris was
born six weeks premature. I had no idea that there would be anything different
about my baby until he was born. At first, I was scared to death. Despite my
experience with Down syndrome children during my youth each summer, I was
terrified to have a "Downs baby" as my own child.
Chris was
also born with a complete Atrial/Ventricle Septal defect. He required extensive
surgery at four months old on his heart. Still, he was an amazingly happy and
beautiful child.
We went
through the massive amounts of screenings. At 10 months old, he got his first
set of P-tubes in his ears. Less than a month later he was diagnosed with
Congenital Glaucoma. Thankfully that Dx was incorrect and it turned out to be
asymmetry of eye refraction (AKA anisometropia). BIG difference, to say the
least. Still during the next two years he endured 8+ EUA's (Evaluations under
Anesthesia) to make sure it wasn't Glaucoma.
Fast
forward to age four. During the preceding years, Chris had been seeing his
cardiologist every six months. At the beginning of his fourth year, it was
decided by Dr. Cook that he needed another surgery. Turns out there was a
sub-aortic ridge of tissue that was progressively growing and blocking one of
the main valves of his heart. It had to be removed. So, almost four years to
the day, Chris had his second open-heart surgery. The ridge was removed and has
been monitored since then.
At nine
years old, it now seems the ridge has progressed to the point that it needs to
be removed again. I am thankful that he had five years without a heart surgery.
Still, there have been MANY ear surgeries during that
time.
I won't
get into it in this blog as it could go on forever. Needless to say, throughout
the past four years Chris has had three major ear reconstructions on his left
inner ear alone with multiple EUA's. The folks at Children's hospital in
Birmingham know us as family at this point! Once we get this one done, we
start on the right ear.
Life with
Chris is filled with numerous doctor's appointments, surgeries and surgical
follow-ups. It has been for almost ten years. Yet, in between those surgeries
and appointments I get time to notice that I am blessed with the GREATEST kid on
earth.
Chris is
in Special Olympics. He knows what it means to be a team player. He knows how
to give the greatest and sweetest hugs and kisses. He is a helper! He would
rather be a helper than play games, because helping makes him happy...and we try
to encourage this as much as possible.
Chris is
an exceptional reader, way above his grade level even for "regular" children.
He hates math, but loves science (much like his Momma!). His greatest joy at
school is to read to his class and show them the most fun internet game sites.
Yes, I admit, he's a "gamer" and we allow this in limitation. We monitor what
he plays and he has certain games he plays daily. He is really
good at learning most games very quickly. His dad and I are always amazed when
watching him. We joke that one day he is going to write game code. He has
mastered the computer and this is fine with me. Considering our current and
next generation will be totally computer and internet reliant, it will give him
a good career in the future.
Yep, I
think about his future a lot. I'm not going to send him to some stringent
school that robs him of joy. We are quite happy with the public school he loves
and attends now. He is treated as family. His needs are more than met. He is
happy there and he has ALL of his educational needs met. We are
blessed!
Every day is an adventure with Chris...in one way or another. He has taught me many things in life. Among these are unconditional love, great patience, joy in the midst of a storm, creativity, faith, endurance, and how to have a closer relationship with the awesome Father God who saw fit to bless me with such an amazingly beautiful child. My son Chris.
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