This post is going to be about both my experiences with Fragile X as well as how Fragile X is portrayed in my forthcoming YA novel, DEVIL SPRINGS. (And if you want to skip to the punchline: it’s a spectrum disorder so my own son’s Fragile X and the book character’s Fragile X are vastly different.)
I graduated high school in 1996 and our 20th year reunion is scheduled for late July. High school me… she was a force. I think two things on that old resume sum it up though: SGA President and Most Outstanding Senior Girl of my large youth group
In April my friend Kendra, a friend formed in church youth group in high school, continued in college, and maintained with occasional lunch and dinner dates through the years, died of pancreatic cancer. Her death occurred about five months after her 40th birthday, about sixteen months after diagnosis. About two months since her death, that is still hard to type out.
It's my hope to get more regular with Fragile X posts. Perhaps two "Fragile X Fridays" a month--one personal story and one interview featuring another family in the FX community. It's a thought, a definite maybe, so along that line of thinking... a story from this week:
Usually we get the beach around 10am and stay about two hours then grab lunch on the way home. Sometimes we grab lunch and then go in the afternoon. Kevin’s favorite is when we grab dinner and go for sunset. Yes, it’s the east coast with the sun setting behind us, but we all still love the dusky glow on the water.
I have a line of cards in my head (Hallmark? You out there? Wanna make a deal?) Called Mom to Mom or some such thing. One of the cards would have a picture of a kid’s potty on the front and then when you opened it would read, “I’ve been there. AFTER you’ve cleaned the poop off your rug, I’ll come over with wine.”