Saturday, October 1, 2011

Happy October and Down syndrome awarness month!

October is Down syndrome awareness month. I can guarantee that with all the craziness in my life right now, that I will not be making the 31 posts. But here's a first try!

I was always around Down syndrome. My neighbor's niece had DS, and I was frequently around her. She was always fun, and I never saw her as anything different. Perhaps this is why I didn't go through the typical emotions when Jax was born. Or perhaps it was that I worked at the childrens hospital. DS kids were regulars for me. His medical problems didn't bother me. I knew in depth what his heart defect was and how it was fixed.
Jax started out very typical, and has slowly, over 6 years, grown more and more atypical.

This blurry cell phone pic is the only good pic I have of Jax beautiful smile before his brain injury locked it away. I treasure this picture as if I paid 100 dollars to have it taken. I can see his little personality, and the little person he was, before it was all taken away from him!

Jaxson has Translocation Trisomy 21. It only happens in 3 to 4 percent of all Down syndrome. The funny thing about translocation is he has the same amount of chromosomes on paper as you or me, because his extra 21st is attached to his 13th chromosome. It is the only type that can be inherited, although his is not. Mosiac is the least common, only 2 percent of Down syndrome people. It is thought to be a mild form, because not every cell is affected. Nondisjunction is the most common form of Down syndrome, 94 percent of all Down syndrome people. My geneticist didn't know if Translocation had more medical problems, it hasn't really been proven, Jaxson is just one of those unlucky few. He has Digeorge anomalies, although he doesn't have Digeorge syndrome. That just means that he has a few common things found in Digeorge syndrome, like hypocalciumia.
I always had a hard time being a huge advocate for Down syndrome. Partly because I am consumed by Jaxson's health (like spending 5 Buddy walks in the hospital) and partly because I have a hard time being all happy and trying to tell people how great DS kids are and then show them Jax. Not that he is not great, but he is very scary, and I hate to scare people to death by telling his story.
Jaxson is not a common DS child. A lot of DS kids will struggle for the first couple of years, with heart defects and such. But its not common at all to have kids be this fragile for this long. My geneticist also told me he had never, in 25 years, seen a DS child with this many medical problems, live this long. A hard pill to swallow, but a testament to my warriors strength and courage.
Having Arina has shown me a whole new side to Down syndrome. She is a DS advocate without even knowing it. Her flirtatious smile sucks in even the hardest of hearts. Walking through a store with her is not without many stops to talk and play with complete strangers. I can't wait to see what she will do. Drill Team, homecoming queen, nothing is out of reach for our princess.

Today we enjoyed the 80 degree October weather, and escaped the hotel to the park. Jax stayed awake this time, and had a grand time swinging, and going down the slide with his brothers.

Look at that tongue and windblown hair!


Kristin said...

Can you believe this weather?!

Alison said...

That photo of Jaxson is so precious - I can see why you treasure it.

The VW's said...

While you guys were in shorts yesterday, we were bundled up in sweatshirts! Lucky you!

Love that smiley picture of Jax! Sweet boy!

I also feel like sharing Gavin with others is not a good way of advocating for Ds. Only because of all the medical issues he's had.....but one look at his smile hopefully shows people what a blessing he is!

Patti said...

LOVE this post, friend- and I think YOU are a pretty tough warrior as well! :) oxox from Oregon

Melissa said...

I didn't realize Jax had translocation Ds. Love the pic of Jax's smile!! And Arina shoes are so cute!