Update on the whatsoever


He is doing….REALLY, REALLY GREAT. I mean, we still have all the health and disability and special needs stuff. Nothing magical has happened to make that disappear, or make healthcare a thing we can just pretend we don’t need. Ahem. Likesomepeopleinthiscountry argh argh argh. But E is doing well. Every day we, we spend lots of time:

  • in the gait trainer, with and without AFOs. Naturally, he likes “without AFOs” the best.
  • in an adaptive stroller. We picked the model that worked best for him, and are going to order this week, hopefully, if we can get all our paperwork and letters and referrals/preauths in a messy, towering paper stack.
  • stepping around the room, holding hands. His balance still isn’t great, but it’s improving!
  • sitting and working on trunk and head/neck control.
  • yelling and imitating weird sounds to each other.
  • Eating. Eating. EATING.
  • Making his car go, with his head, unfortunately — we are encouraging hands, and it’s so, so easy — and he knows it, the wonderful little stinker — to put his head down on the switch instead. (See Update on the Kid, #5981) Every time he makes it move forward, though, he squeals in a way I hadn’t heard before the car. So cool.
  • Grabbing stuff.
  • Reading books.
  • Sleeping. Napping. SLEEPING — I am not going to type anything more because I know how this blog jinx works. Damn you, but it’s great. You know, it. The sleeping thing.
  • Practicing vision activities with the light box and games.

I’m not sure what’s up with him, developmentally. He’s sleeping so well at night. (And A. and I are reviving again.) He’s so freaking happy during the day. He gives us his attention, and even though his vision is still pretty impaired (no true visual orientation, right, docs?) he still seeks us and tries to track us. He is learning to calm himself, little by little. His meltdowns are diminishing in length and severity.

I’m a little scared to write anything more. He’s doing so well, and he seems so delighted every day. I’m going to try to enjoy it and not think about time limits.


A few weeks ago I got swarmed by about a thousand blackflies while gardening and walking. The itching was unbearable, and I finally went to the doctor. They prescribed a short course of prednisone. I’ve been taking it in the morning, and last night I still spent two hours staring at the ceiling and counting all the ways that I am personally responsible for a family member’s current health crisis. It truly is and will always be the cheap devil of the pharmaceutical world.


Our new town has some decent regular arts stuff going on. Lots of music, theater, and readings. I went to see a fun, goofy performance of The Comedy of Errors. Another interesting thing — in a few weeks some local performers will be putting on a live reading of 12 Angry Men. I may have gotten a little too excited about that, to the point where A asked me, “Don’t you feel well?” and I said, “I feel PERFECTLY well, THANK YOU.” And that sums up our relationship to that play/film, I think.*


So many things to watch and read, so little time. And I’m even writing, so — you know. Time is an impossible negative resource, as usual.

  • Old Twin Peaks. We’re almost done, thank god. I love and hate this show equally.
  • House of Cards. Ha ha, just kidding. I watched the first season, and part of the second, and decided I really could not take fictional political intrigue bullshit when I have to read it in the news and think and make decisions based on it, every single day. Instead I rewatched part of the UK original. Should probably bother me, too, but it’s that lovely 80s-90s distance that has us all nostalgic and weeping right now.
  • Midsomer Murders. Included a cameo by Lucius Malfoy, sadly not by Jason Isaacs.
  • Wonder Woman. Made me cry. I may have tweeted too much about it.
  • In A World… I liked this movie, about a woman trying to break into the voiceover world. Warning for a joke about the word “retard” in, probably, the first ten minutes. It’s not that I don’t get what they were going for — the humor of trying to be compassionate (or just not thoughtlessly dickish and proud of it) and failing, but it just didn’t quite work for me. And of course, this is stuff I think more about these days.
  • Some unnamed books about writing. Work reading.
  • Fanfic. Fanfic 4-EVA. No links because I think the ones I’m reading are all older.
  • Original fic. Big h/t to sasha_feather for the link to this original SFF work by Avoliot on the AO3: The Course of Honor. I loved it.
  • He, She And It. A Marge Piercy book from the 90s (speaking of nostalgia, good lord, this is depressing) that the Vaginal Fantasy Book Club read a year or two ago. So good, and I’m only three chapters in — having trouble putting it down.

Going to go pick it up again.


*A movie with quotes that fit any occasion. Ask me how!


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