Today, July 22nd, is Fragile X Awareness Day. In the past, I’ve posted “Happy Fragile X Day” ironically on Facebook and left it at that. Or joked that those of us with a family member would love to have a day that we’re NOT aware of it. Or just told myself that I try to help out folks close by and national days are not my thing.
Then I am sitting at my dining room table having lunch with one of my oldest friends today. And she uses the R-word in conversation. And like a slap in the face, I’m reminded that we need all the freaking awareness we can get. Now in fairness, she’s here for a very sad reason and has a lot on her mind. In fairness to me, I’ve asked her to not use that word before.
Today, I have one child home. My child with Fragile X. His older brother and twin sister are at sleep away camp for the first time as of yesterday. As if awareness needed to be highlighted for us, he’s home alone without them because he can’t go away. We choose to send them to this camp, Camp Ramah of New England, because they have an amazing inclusion program that he can hopefully attend when he’s older. But for now he’s stuck at home. Alone. Aware that he’s not with his brother and sister.
Happy Fragile X Awareness Day.