Gorgeous things.

It was the most gorgeous spring day yesterday. Jeremy biked to work and I pulled this photo up from our shared photostream, but I realized it wasn’t his bike. Is this a bike pulling a trailer? I think it is. Jeremy left at 6:30am and got back at 10:15 pm (he was still in DC at 8 pm which is when I thought he would get home). He biked home in the dark on the C&O canal which freaks me out a little bit, but he made it home and then we couldn’t sleep (this is what always happens when someone comes home late) and we were up in the kitchen at 11:30 at night eating leftover Chinese food and rehashing the day. Elka was very confused, nosing around for food herself.

I luxuriated in a day in the house by myself. I honestly don’t know why I love having the house by myself for hours, because when Jeremy is working from home, we have completely different work areas and we have such a low level of interaction – we don’t even eat lunch together most days, maybe it’s just a taste of before times. But I was in a great mood and got lots of things done.

A lot of things regarding Edda turning 18 are slowly resolving-ish, like she got approved for her Social Security (this took just about a year) and qualified for full adult services when she turns 21. Her aftercare seems steady, though everything still feels tenuous to me. I’m finally starting phone calls with the transition teacher at her school to start the two year process of moving her from school into her adult services situation. Things are still a mess from the pandemic, long waiting lists and full programs and staffing issues, but because I’m in a better place mentally, I feel like I can manage these things without too much trouble. Sometimes I complain that my life is boring, but I’m grateful for the boring life at times, because one knows that life can be exciting, but in the bad way – a lost job, an accident, a tragedy.

RSRT is going to start enrolling children in a gene therapy trial in the fall. Megan, Edda’s teacher, and I were at dinner a few months ago when we talked about what if Edda’s genetic error was erased right now and she had a fully functional genetic material. Could she learn to talk? To hold a fork? Would she be mad? or glad? Or would her brain be overwhelmed? After decades of missing out so much. So much of her body is deformed from not being able to move in the typical ways for so long. Her mouth has been unable to form words for a lifetime. It would be interesting. I wonder what would happen. Perhaps a nice problem to have.

2 thoughts on “Gorgeous things.”

  1. That’s great news about the genetic possibilities. Hope it’s such a good quality. And, your life is definitely not boring. I can’t believe you think it is ha ha.

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