The struggle is exhausting

posted by Jeff | Tuesday, September 15, 2020, 5:00 PM | comments: 0

I mentioned two weeks ago that we've been really struggling at Puzzoni HQ. Things haven't gotten any better, and sometimes they feel worse.

For Simon, the challenges arise in unsuspecting ways. His doctor wanted to raise his ADHD med dosage, and we were thrilled to see him not just grasp the multiplication work he had, but just kill it. Then he woke up at 2:30 a.m., stayed awake, and at 4:50 just decided to get dressed and play quietly. You can only imagine how school went after that. That was all after the FOMO created in the afternoon by spending time with his ESE teacher led to a full meltdown trying to rejoin the regular class virtually. On the plus side, he's able to articulate how lonely he is, but even if there was no pandemic, the local kids are mostly unkind to him, and his time spent virtually with his cousin, area friends and such is limited. I'm not sure that being able to articulate the loneliness is even good, because nobody wants their kid to be lonely. See the weird places you start looking for light?

Diana basically has to be on standby all school day, from 8:30 to 3, so she has very little time to herself. She's knocking out puzzles because she can do them while near Simon, but she's not really sewing, exercising, watching stuff or really anything that's mostly for her. She's definitely not going back to her job, because theaters will probably be the last thing to open. I marvel at her ability to deescalate Simon and try to keep him on task, but I know from my limited success with that how exhausting it is.

Meanwhile, I'm sitting there with something like survivor's guilt, because I get to go to work with brilliant adults from all over the country doing great work in a difficult time. The work isn't easy, and takes a lot of sustained focus and thought, but when I hear tears in the next room, I feel like I'm comparatively in a better place. When you factor in my baggage around family relationships and a failed marriage, not amount of reassurance makes it easier for me to not wonder if I should be doing something more. I want to help, but don't know how. And then when things go south at bedtime over something simple like teeth brushing, with increasing frequency, to say I don't feel like I'm ever winning is an understatement.

Maybe the biggest part of this is that the circumstances are largely something that we need to endure, and can't really change. There are a lot of negative things that you can make deliberate choices about, like leaving an abusive relationship, leaving a suboptimal job (aren't those really the same thing?), making lifestyle changes for health reasons, committing to education to better yourself, etc. Raising a child with certain special needs in a pandemic has no out, and it can't be improved with money. That's an ominous reality.

Sure, we can all say that we're physically healthy at least (relatively), but the physiological toll of having the brain always on high alert and anxious is real. Last weekend, we were all in total slug mode, too spent to really want to do anything (it didn't help that it was a rare rain-out weekend). I think it's a long road ahead to endure and overcome. I've never felt quite this tested.


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