Friday, June 5, 2015

The Hulk Goes to Washington

I mentioned in the previous blog post that there was something special about Caden's blue shirt and that I couldn't wait to share the reason why we needed it. So here it is. He needed it for this photo shoot:




That's right! Caden was selected to be the 2015-2016 Children's Miracle Network Champion for the state of Pennsylvania! That means we will work hard to spread awareness for CMNH and also to represent our beloved Penn State Hershey Children's Hospital and local community. We will also have the opportunity to travel with all the other state champions to Washington, DC next week and to Orlando in February 2016. It is an unbelievable honor and will be the most amazing year of my son's life so far. While in DC we will visit the White House and hope to meet the President or First Lady if their schedules allow. Which absolutely stuns me because where we started with this child and where we are now don't seem compatible.

My mind flashes back to having just received the prenatal diagnosis of Down syndrome and various doctors warning us of the future likelihood of heart issues, GI complications, leukemia, thyroid disorders, a spinal condition called AAI, etc that occur more often with Trisomy 21. Of course I understood their duty to inform and educate me but essentially all I heard was, "There's an 80% chance of this bad thing happening and a 60% risk of this one plus a 40% likelihood of that really bad one." Maybe they took it for granted that as parents we intuitively knew this but no one accurately predicted, "There's a 100% chance of unconditional love and a 100% risk of a new attitude about life plus a 100% likelihood that this child will be the best thing that ever happened to you." And most DEFINITELY, no one dared to say anything as crazy as, "There's a 100% certainty that this child will take you to the White House." What?!?! How can this be the same child that seemed to have nothing but negative outcomes predicted??

I have a feeling I'll be a hot mess during this trip. I need to pack more tissues. And waterproof mascara.

Finally, CMN made a beautiful video about Caden 3 years ago and they've updated it to show what he's been up to lately. They did a great job of capturing his personality. Watch it below:

https://www.youtube.com/watch?v=brpMee-N-tY

And now to pack for The Hulk's big adventure!

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