I had no idea 15 weeks ago. I did not know what AMC was, or that it had an awareness day.
Today we received our package of all our AMC Awareness goodies. T-shirts, wrist bands, decals, temporary tattoos, and stickers. We’re decked out for our first AMC Awareness Day.
It a curious thing, having a child with an awareness day. In fact, June 30th being AMC Awareness Day was one of the first Arthrogryposis facts I came across when I started doing research after HG’s diagnosis.
So our son has an awareness day. Technically, up to this point, we’ve learned of three awareness days that relate to him; AMC, Clubfoot (June 3rd), and Rare Disease (Feb 28th).
So we have some new dates circled on our calendar, you could say.
We’re still learning as we go. Technically, we’re just getting started, and I’ll be quite honest, I’m still running around like a chicken with my head cut off most days.
For this year, for our first AMC Awareness Day, we’re taking it in stride. I’m sure we’ll do the family photo post in our AMC T-shirts. I’ll have another blog post to commemorate the day and share more information regarding it. For now, though, I’m sitting here, looking at all my AMC Support paraphernalia, and it is hard to determine the emotional process I should be having.
It’s a weird thing frankly. I don’t know any other way to say it. It’s strange. To look at all this stuff. To see the hashtags and the shirt with my son’s name on it, and it all be because my son has this rare condition.
I keep a pretty steady face most of the time, but there are plenty of days where that simple fact and that fact alone sits heavy on my shoulders.
For now though, here’s to AMC Support, to AMC Awareness Day 2021.