I want to write a lighthearted, happy post about my little Monkey. An upbeat post about Saturday’s awesome fragile X conference in Connecticut would do in a pinch but…I don’t have either in me. Not today.
Yesterday, I was strong, I was upbeat, I was positive because that’s who I am when Monkey needs me. I was calm as I explained to yet another doctor how to best examine and treat my little guy. I ate celebratory donuts. I built a fort out of sheets and blankets to make sitting still a little easier for my bouncy boy.
Today, the memories of his tears, of our frustrated attempts to find out what hurt, of his uninjured leg banging against the couch to get the sensory input his too sore little body desperately needed…have left me drained and numb.
It’s been a very long time since I’ve said, “I hate fragile X.” but it’s back, rattling around in my head. It’s been a very long time since, “How are you?” resulted in tears, but my eyes burn with them today.
Today, my heart is just a little raw from knowing how helpless I am, and will continue to be, at times as we live this life with fragile X.
Tomorrow, I’ll be better.