all quiet on the 7 west front

Well, our side of the curtain is quiet, at least.

Lars had a better evening than morning & afternoon. He's carrying a deep sadness which he expresses often when he wakes; the last few days have been especially tinged by it.

I was teaching through dinner, but Lars was able to eat some. I got a shower, thanks to Kali. Have been aware that this is our last night with a Larsbelly sans plastic button sticking out, at least for a while.

Thinking about Lars & his tactile explorations, Denise & I brainstormed a way to alter his shirts so they'll snap at the crotch, since he's outgrown all the commercial onesies. Our idea is strips of stretchy cotton fabric that snap onto the fronts & backs of his shirts. What we didn't get to was how to make a trap door for the tube to go in during feeds?

I've been realizing that Lars' next IEP meeting is Monday & we might still be here. Lots to do for that meeting, teaching again all day Sunday, so Lisa M. & I are going to work on the IEP this Thursday. I will post it somewhere on-line for you who know IEPs to offer your feedback. Virtual pre-IEP meeting? The draft the school came up with...shall I just say really needs help. If anyone happens to have Monday morning open, we'd love to both be at the meeting, but that would require someone to be with Lars, either here or at home.

Last night after we arrived home, Joa said, "I feel like I just lost life. I lost normal and I'm not going to get it back again until Lars isn't sick, and my friends start playing on club penguin again, and I get some more sleep. It feels like my life is just gone. Like somebody bought it & I can't get it back. I don't know how to explain it."

Wow.

Today Joa had a wonderful time at his sibshop--thanks to Denise for spending her day getting him up to Beverly for it, and then here to the hospital. Heartwarming story of the the day: Sibshop kids made "bugs" out of paper plates. One side was for writing all the things their sibling does that bug them. The other side was the lovebug side, where they wrote what they loved about their sibling. Joa reported to Denise that his bug only has words on the lovebug side because "there's nothing that Lars does that's under his control that bugs me." Such an amazing boy he is.

A wise old friend back in Portland wrote, "Thinking about Lars... and Joa's fascination with violence I am reminded how often these days I rage at a God I don't believe in, and have the violent desire to knock him off his throne and make a few changes in the way this world's working. I wonder about the frustration and rage Joa must feel about what's happening with Lars; and whether the song and computer game provide an outlet for him to express some of that and feel powerful and in control. Sort of a more primitive, less evolved version of doing sudoku." Indeed.

Joa's 8 1/2 birthday is tomorrow & we're having a party around 6:00, if anyone is free. In the 7 West playroom, featuring pizza & half a cake. Before that he gets to go with Andey's cousin Jean & her two sons to the science museum. Hopefully it'll be a good day for him. We're trying to make it special. If you promise not to spill the beans, I'll tell you that we got him a baby Martin acoustic-electric guitar. Sweet.

Odd how I've come to sleep better in the hospital. When I'm here, all my attention is here & that feels congruous. When I'm not here, I'm drawn in many directions & feel conflicted with the weight of the deluge. Being away for a short while is thorny because I'm reminded of the thousand life details I ought to be concerned with, but without time to think of them all, let alone do anything about them, my mind just gyrates out of control.

Now, however, I can barely stay awake. Big day tomorrow. Hmm, night nurse just woke him doing vitals. Sigh.