Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…
The photos are awesome.
Look at that face!
The head bent over his work!
The smile for his teacher! Pure and total awesomeness, right?
Eric was immediately just so P.R.O.U.D. of him, of how hard he works, of how far he has come, of how much he is teaching us all about what is inside of him.
But what I saw in those photos was what we have lost. What he has lost. What I saw was the little boy he could and should have been if only I hadn’t passed the wrong X to him. I saw a long life of him trying hard, harder than anyone should have to try, and still falling short of his peers. He doesn’t seem aware of it now, but I know he will be in the not too distant future. He’s very, very socially aware. He loves to do what the other kids are doing. One of these days…he’s going to know…and that’s what broke my heart. It will always break my heart.
I wouldn’t give up a single curl on that head for any amount of money in the world…and I still hate what fragile X has done to him. Seven and a half years post diagnosis and I want to be done with it. Done with all of it. I want to not even know fragile X exists. That is a pretty good explanation for being so quiet here, I suppose.