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?
2 thoughts on “Still hanging in.”
I know what you mean about not bringing FX up when people are staring (or like you said, just noticing). It’s like I don’t want to make excuses for the behavior, but at the same time, the differences are quite obvious, and I know that most people are just curious. I find it difficult to start random conversations about it. I love talking about it to people, but I usually don’t initiate the conversation.
After seeing how fast the boys have grown up (and how amazing they are), I do make the extra effort to try not to stress too much about Evan (I know, so much easier said than done, and no, I haven’t perfected the idea either).
The stares usually don’t bother me anymore; in fact, I hope people “check out” my kids—they’re unique! Evan still sneaks under people’s radar, especially because he is so small for his age, but I know it’s only a matter of time.
BUT, I must admit, I love it when we are out, and people don’t realize there is something that is “different.” A very recent example: We were at a local festival here in town (The Hot Dog Festival 🙂 ), and I was looking at some bracelet charms for Chelsey. The boys were behind me nudging each other, and the woman at the booth laughed and made a comment about her boys still doing that—-at 19 and 23. If she had known that something was “different,” she wouldn’t have made a comment (when people realize there is a difference, they usually don’t say anything at all).
Okay, one more example: we were back in Connecticut vacationing several years ago. We were on a boat ride, and the kids were actually sitting calmly in their seats enjoying the view (with no flapping or hand twisting!). Several other children were running around, eating, and making lots of noise. An older woman behind me said to her husband, “Look at these kids, they’re sitting so nice and quietly, and they don’t have to have constant food going in their mouths.” (or something like that). I think it actually brought tears to my eyes, because we had had some pretty awful moments that day…like when Chelsey wanted to go in the castle, and the boys made it quite clear that they didn’t want to go anywhere near it!
I crave those moments of normalcy these days. Maybe they mean more to us when they do happen since they’re such a rare treat? They don’t take away the sting when things don’t go according to plan though.