I’m a bit on edge these days, my mood is not good. But we keep going. A few nights ago – I told Jeremy – “I wish Edda…” and he thought I was going to say “didn’t have Rett Syndrome” but then I said “will someday not have lice.” And Jeremy laughed and laughed and assured me that he thought that was an achievable goal. I have conquered many lice infestations in my stint as a mother – almost always on Vince, but Edda’s lice has stymied me. I think I’m done, and then a few days later, I see tiny, tiny nits. These nits are too small for the comb if that makes any sense. I’ve combed a lot of nits in my life, usually, I can get them with my special comb (and I do have the special comb), but these are too small and slip by my metal tooth assault. And now that I’ve written these words, my scalp feels itchy.
I spent yesterday half listening to the Rett Syndrome Externally Led Patient Focused Drug Development Meeting. Hosted by both (IRSF and RSRT (omg! like they agreed on something)), it was a meeting for the FDA about personal stories of families living with Rett. So triggering honestly. So painful to listen to parents of kids who are between the ages of 2-7 (my painful, excruciating past). So painful to listen to parents with adult children between the ages of 24-54(!) (my future, which is unknowable and therefore, scary). I thought the meeting was well done and it’s available online if you want to see it. Painful in its own way were the parents who insist that their daughter was reading on grade level, or smart or somehow fully cognitively there trapped in their non-functioning body. This amorphous thing – “smart”. It makes me feel like I’ve failed Edda in some way. That if only I was a better mom, I would have unlocked the secret which would have revealed her smartness, lol. If you asked me what I wanted in my children before I had children, I would have said “smart” – like smart enough to win the Nobel Prize or if not that, then at least smarter/cleverer than me (honestly this is getting easier all the time, I’m getting dumber by the day, I can feel it.) Constantly, I field calls from Vince about how “smart” he feels in relation to his peers, suffering from a few points docked from his o-chem test – he feels “not smart”. But now I’m older and wiser and I want my children to feel like they are loved and supported and to have the strength to find their way in the world, those few points on an o-chem test are not important. They truly are not. I’m ready to be wrong on this, but I’ve made peace with Edda’s academic performance or lack thereof. I’m her mother, not her college admissions officer. Just because a person isn’t smart, does not mean we do not love them, care for them, spend resources on them. And honestly, if you think your daughter with Rett Syndrome is “smart” and “at grade level” and has opinions enough to cast a ballot on government issues or write op-ed pieces on the war in Ukraine, then, logically, when they are an adult they are able to consent to having sex with whoever they want (ugh.).
I’m trying to learn to be a regular person again. I went to a coworker’s baby shower. I got them some diapers and wipes and Jeremy made his famous butt rub chicken thighs.
Someone also always brings full fried fish which I love so much. This time, I ate at least half. Not the head half, but the tail half. (And not half the tray! there were like at least 4 fish in the tray!)
My favorite charge nurse and Pokemon Go lucky friend, Astra:
Mary saves my ass many days as my tech – I try to give her a ride to the Metro on days we are working together.