It was a busy, social weekend. Though I still feel the repercussions of the pandemic in many psychological ways, we are getting used to going out now. Though I think Jeremy still wears a mask when he’s grocery shopping. Jeremy, Dara, Brian and Mike went out for a “guys night out” on Saturday night which involved beer, race car driving (?), axe throwing and steak. Turns out Mike is quite the aggressive driver when given a chance. This is not Jeremy’s natural environment, but he admitted that he had a good time.
While they were out, Sofie came over and we (including Edda) watched Quantumania (which was a bad movie) and had Chinese take out and then baked a cake and started watching Black Panther: Wakanda Forever (which is a much better movie and I’m still only 1/2 done with it). The cake was a Guiness cake and it turned out delicious, but there was a mysterious crater that formed in the center upon cooling which formed even though the cake was 100% done.
I also spent time trying to French braid Sofie’s hair.
On Sunday, I drove out to Annapolis to see Dominique and we had a long and wide ranging conversation about the state of the Rett community now. When Edda was newly diagnosed, I was more involved in the community and the internet was just a baby then, so it was interesting to hear about how the young families are more connected and have many more resources than I did when Edda was younger. It was so hard for me for at least 5 years after Edda was diagnosed (like unbearable to live each day, to open my eyes each morning and face another day), sometimes the families in the chat rooms and/or on Facebook made it worse. It’s a complicated thing, like trying to fit a wet noodle into straw. You can kind of see how it would work and be a simple thing, but also it’s hard to do. This metaphor makes no sense. I loved that I wasn’t alone, but also it felt like there was so much I was supposed to be doing that I wasn’t doing. Anyways, everyone mothers in a different way and I have my own way of mothering, but when I see someone else’s mothering methods I can get off course with what I feel in my core. Does that make any sense? And if you feel like the stakes seem high with your typical kiddos, it seems weirdly higher with your disabled kiddos because you’ve lost so much already. Honestly, I’m a little lazy with mothering. Maybe lazy is the wrong word. Lazy implies not caring. I do care! I care a lot. Laissez-faire? That’s too French and pretentious. Vince! What’s the right word for how I mother? I view my position as a mother as a safe harbor to return to if you are having a hard time or if you are having a great time. Sometimes it’s hard to share either/both to other people because of various circumstances. I try to let you be as person – you are your own person and have your own life and your own destiny. I believe this for Vince and Edda.
On Sunday night, I reunited with Pat and we went to the Kennedy Center to see Les Miserables. I know this music so well from the original Broadway cast recording. It was one of the 2-3 albums I had on cassette tape in the late 80s and I played it 10,000 times in high school. I’ve never seen the play in person and I really wasn’t intending to go, but Pat had an extra ticket, so I got to go! It was glorious and omg, the singing was amazing and I was thrilled. Sometimes it is unbelievable what people can do. Those voices!
This may surprise you, Doris. You’re one of the mothers I’ve always looked up to, and I tried to be more like you as a mother, even though Josh is older than your kids. You have this amazing ability to put 1 foot in front of the other on days when you don’t feel like it and you love your kids, in a way that every mother should take notice of and be more like. You never seem to get frazzled with all the juggling in the scheduling. And you do just let your kids be who they are. Most of us try to mold our kids into something else but not you. It’s one of the things I admire the most about you.