Kodo has stopped eating and sleeping again. It’s been going on for a couple weeks now but peaked lately. He wakes up, sits straight up in bed and screams until someone comes to rescue him and chase away whatever it is that makes him feel so scared. On the worst nights, we give up around three or four AM and just give in to brutal wakefulness.
During the day he asks constantly to be carried. He pops up onto his tippy toes and panics, his chin quivering. I have to remind him that he is only to be carried when we’re outside, not when we’re inside. I would prefer to scoop him up and whisper to him whatever magic words would make him feel safe. I should be able to make him feel safe.
It’s like he doesn’t breathe the same air that we do. Like our oxygen is missing some critical molecule that he needs to maintain homeostasis. Without it, he can survive but never feels completely sound and satisfied. He can’t relax. Something is missing. Disaster waits, panting like a starving dog.
He doesn’t eat, except for gluten free Jojo’s from Trader Joe’s. His sister steals about half the box and we are forced to leave the house for more. Going out helps me to stay sane, but it can be tough. Kodo’s anxiety kicks into overdrive when we’re outside of the house. There are sounds that he can’t use his vision to identify, so we are in constant verbal communication. I describe every little thing that I experience and observe, hoping that I’ll be able to help him to better understand the tidal wave of sensation that washes over him like an ocean of broken glass. Sometimes it seems to help, other times it seems to help less.
These days are nothing new, but they never become normal. The dance required to manage it all becomes more familiar, but never natural. And so we keep practicing the steps. Counting and repeating, counting and repeating. All of this has happened before, and will happen again.