It’s a little after 1AM and I can’t sleep, again. I do have a cold and that is playing a part but that’s not all by a long shot. Every time I have woken up in the last two nights my jaw has been clenched so tightly that I can barely open it. I have to flex my jaw, while it makes loud popping noises, five or six times to just get it working properly again. I wish I knew why this much stress again.
I think it has something to do with the fact that it is becoming more and more obvious, to even casual observers, that Monkey is delayed. We had a fantastic outing Saturday night to Castle Island in South Boston and I really enjoyed myself. We ate burgers and fries, we walked along the causeway, Monkey played in the water and joyously watched the airplanes. It was just a really nice time.
When I tried to fall asleep last night, though, I kept remembering the looks from people. It was not staring, people were friendly and smiled at me when I made eye contact but they were looking. They were noticing. How could they not? He’s the size of your average 5 year old child, happy, laughing but definitely not acting anywhere near his age. No one ever asks questions, they just look and smile. It’s hard not to smile, his excitement is contagious but I do wish I didn’t feel this need to explain. I just want to be a normal family. I want to do normal things and not have people notice. I want to be able to share information about Fragile X but it feels so forced to bring it up out of the blue. It also feels like we’re ignoring the elephant in the room when I don’t say anything.
I am beyond hoping that I will wake up to find that Fragile X was just a bad dream. My hope has now shifted to waking up and finding out we can cure it, that we can take it away and be a “normal” family again they way we were when he was little. I want to go back in time and shake myself, to somehow force myself to enjoy those first 22 months more now that I know it was such a fleeting period for us.
I wonder how long it will be before I look at this time now and feel the same?