It’s Down Syndrome Awareness Month 2013
October is Down Syndrome Awareness month, when we spread the message of hope and information about Down Syndrome. If you’re looking for clinical information on Trisomy 21 you should check out the National Down Syndrome Society or the Global Down Syndrome Foundation.
To me clinical data doesn’t spread awareness, but the real life stories of children do; so let me recap our son, John-Michael’s, life with Down Syndrome has been so far (he’s nearly 11 months old, so we’re still newbies at this too!).
As parents we believe with all our hearts that every child is born exactly the way God intended them to be and for some a child born with Down Syndrome is one of God’s catastrophic blunders. When the doctors started to suspect that John-Michael might have Down Syndrome, they recommended certain prenatal tests; which we promptly refused. Our view is that these tests are only for parents who may consider termination as an option. We simply don’t! (No judgment implied).
On November 26th, 2012 John-Michael came into the world at an alternative birthing center in Texas. The same place his two younger sisters were born. It was a homey experience without a bunch of white coats and nurses in scrubs; just a couple of mid-wives who left us alone until “it was time”.
When he was born and we first laid eyes on him, we immediately recognized some pronounced differences. His ears were so small and had a strange fold in them at the top; he had an extra neck so to speak. His face seemed to droop a bit and his stomach was huge compared to his chest.
Our mid-wife came in very somberly and told us that she suspected that he had Down Syndrome and that instead of going home with our baby boy in a couple hours (which is what we did when our girls were born) we had to go straight to our Pediatrician to have her check him to make sure he didn’t have more serious issues.
I wrote about our initial reactions on my personal blog: When You Find Out You Have A Child With Down Syndrome
The fact is I wouldn’t change John-Michael to “normal” even if it was possible; he’s perfect to us just the way he is; he’s our little boy who happens to have one extra copy of the 21st chromosome but that makes him John-Michael.
Have we had other issues… Yes! As a matter of fact we’re walking through infantile spasms with him right now and it hasn’t been
easy; frankly it can be overwhelming at times. But whatever we find we can’t handle if you look into the lives of others you can find that our overwhelming is often someone else’s wish… They wish they only had your problem. Plus, as believers whatever we think we can’t handle we give to God to handle and He does.
You can read some of our recent posts about our experiences with infantile spasms here: Unexplained Twitching, An EEG And Something About Infantile Spasms
However, we are still very young parents of a Down Syndrome child and we rely on some others who are a bit further down the road to help us work through some of the challenges. We have some close friends, the Forsythe’s, who invited us into their lives and introduced us to their son Landon who was also diagnosed. Just meeting and hanging out with him gave us hope that John-Michael is a boy like every other and he’s not disabled; he’s differently-abled and God has a plan for his life. Eric is a photographer and took our family photo just after John-Michael was born. We are truly honored to be able to call them friends! (Shameless plug: If you need a great photographer… CLICK HERE!)
One of the other families that we’ve gotten to know, though not personally, is the Smith’s from Noah’s Dad. His son Noah was also diagnosed and he started a blog to allow people a peak into their world. We read and often reference noahsdad.com and any new parents should do the same. We’ve been encouraged by them more times than we could ever express; and in times when we didn’t even want to talk to anyone; which I believe is the point.
Our lives are a testimony to how our children are a blessing to us, not a curse. There are parents out there every day getting the news that their son or daughter will be born with Down Syndrome and knowing you’re not alone… well, it saved us! I mean it, we were smiling on the outside but devastated on the inside and it quite literally saves you to know that you’re not alone and that everything will be okay. So, a special thanks to all our friends who don’t even know how important they really are.
The last thing I want to mention is that we are in the process of taking this message to a whole new level; we are working on a book project that expresses this exact message and we’re going to do it through the art of fiction. Please keep this project in your prayers and we’ll keep you updated on our progress.