Yes, I know; I’m a few days late on this post. AMC Awareness Day was June 30th, and today is July 2nd. What can I say? I’ve been busy! Yes, I could have prewritten a post and had it ready on Friday, but as I’ve mentioned before, I like to write in the moment.
So yes, our third AMC Day has come and gone.
If you had told me, on March 5th, 2021, as I stood in the NICU at UK Hospital, looking down at this tiny, helpless, 1-day-old newborn with tubes and monitors everywhere. Who entered this world, already having to climb impossible mountains, that we’d be where we are right now, at this moment, I wouldn’t have believed it.
If we’re being honest, at that moment back then, I probably would have screamed choice words through tears, potentially coming up with new, creative, and colorful word combinations in the process.
I remember standing there, looking at Harrison, practicing saying this brand new word I had just learned 24 hours earlier, “arth-ro-gry-posis,” and simply hoping that one day, my son could just sit in a chair.
During that week in the NICU, Harrison’s first week in the world, beyond the doctors who gave us our son’s diagnosis, we only met one nurse who had ever heard of arthrogryposis.
Now, as our 3rd year acknowledging (celebrating) AMC Awareness Day, our son can sit on his own. (We’ve even begun working on him standing on his knees!)
And just as importantly, we are surrounded by people who know the word arthrogryposis and support our son. They support us and, in doing so, support AMC Awareness as a whole to help bring more awareness to the condition.
It seems that every year, this date is an emotional one for me.
If you know me personally, you know this past year has had its ups and downs, and as someone known for having too many words, there have been many times this past year that I’ve found myself lacking in the appropriate words.
Today isn’t one of those days.
Today, I want to say thank you. Thank you to everyone who took the time to wear blue to help raise awareness for AMC and support our little boy.
Family, friends, therapists, and even strangers that we’ve never met, I thank you all!
Simply taking the time to wear blue, take a photo, and share it, will always mean more to me than you’ll ever know. The emotions as I see the photos are always overwhelming. (One of these days, I will NOT tear up over seeing my uncle sporting an AMC Awareness shirt!)
Sincerely, thank you all.