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.