everything to say…
I find that without IRL friends – alive ones – I spend a lot of time internalizing my thoughts and I spend way too much time talking to myself and I spend shitloads of time talking to dead people that can no longer join in on the conversation.
My husband is fantastic – he’s my best friend. Has been for 29 years. But a girl needs more. I need to talk into the wee hours of the night and get our nails done and do lunch and all that fun stuff. I don’t have anyone to unload to about Jay. Can’t bitch about someone to that someone. That’s rude. I’d rather talk about him behind his back. Can’t do that to my mom because when you share negative shit with your loved ones, that’s all they remember. My sister is moving, but we only talk occasionally anyway.
Summer is quickly approaching its end. I’m sad because we no longer go to the pool or the beach or the aquatic park or the water amusement park. ~I a n~has bent legs and turned in feet. He needs cushions to sit in most places. Or his chair. It’s hard making it work. We are stumped with ideas on fun things to do in a wheelchair. I want his days filled with fun, not bottled up in his room always playing video games.
Although he loves those video games. I think they keep him sane. Or at least occupied.
I wondered today about what he’ll look like when he’s older. Then I choked up because that’s all it takes for my brain to remind me that he probably won’t be ‘older’. Immediately I feel punched in the throat. Reminder #475,987,346 that my son is terminal. Terminal. I found a website on Duchenne that had good information on research, and there was a flashing banner — Duchenne is 100% fatal – there are no survivors — And I thought – really? I get that they are trying to incite a donation reaction, but it made me nauseous. More than that – it made me very fucking angry that all I can do is watch blinking signs that countdown my son’s life. I can’t DO anything to his attacker. I can’t kill it. I can’t throw money at it. I can’t wait for medicine to work. I’m not sure if prayer works, but it’s all I’ve got. I find myself talking to God quite a bit too. I decided that yes, I’m agnostic to a point, but that doesn’t mean I don’t believe. It means I have questions. Lots of questions. I hope God doesn’t find that offensive.
I can’t believe it’s 11 already. I got home at 8:30 – sat down, paid a few bills, read a post or two (or 47), and sat down here to write. Hot Damn! I can lose some time. I’ll check my fitbit later to see if I took a nap. I never realized how many naps I get. I don’t realize I’m asleep, and when I wake up, I pick up where I left off. I think something’s wrong lol. I always thought narcolepsy was bullshit. I don’t think so anymore. I do it while driving. Yeah. I have done it while talking. While listening. While bathing. Very annoying.
I don’t sleep when I’m standing. So I’m going to go clean something.