On Monday, the first day back to school, Edda had a record-setting-number of seizures. Seven. One almost every hour starting from 9 am. It was not very much fun watching her suffer in this way. Kitachi was caring for her, but we all rushed down to be together to soothe Edda through each one. We had just, on New Year’s Day, talked to Jeremy’s college friend, Eric Marsh, who incredibly coincidentally grew up to be a pediatric neurologist running a Rett Clinic in Philly. And we found this out only this year when, right before the pandemic, Jeremy was at a college track reunion where the conversation between Eric and Jeremy went something like this – J: “So what have you been up to?” E: “Well, I’m a pediatric neurologist.” J:”Don’t take this the wrong way, but I hate neurologists and I hope to never see one again in my life.” So! Awesome! Lol. (Edda had juuuusst started to exhibit the beginning of seizures in Jan/Feb of 2020 and we were slowly realizing that neurologists were going to be part of our lives again.) I like Eric very much, we are hoping to head to Philly to have a day’s worth of visits with various specialists including Eric. Of course, when we talked to Eric, Edda had been seizure-free for almost two weeks, so we were feeling good and confident that we would find the “solution” to Edda’s problems. I was at the hospital yesterday (Tuesday), Jeremy had important meetings all day and Edda had no seizures. But at dinner, she seemed to have forgotten how to eat. Jeremy spent 2.5 hours trying to get her to eat something (esp. the Keppra). Usually, when I show up at home at 8:30 pm, Edda’s long been put to bed, but last night, when I came home, I found Jeremy and Edda at the dinner table covered in all the chocolate pudding that Jeremy had tried to coax her to eat, but Edda had just tauntingly held in her mouth for a long time to only let it dribble out the sides of her mouth. We are figuring it out.
I’ve been reading and crying: Ann Patchett’s essay in Harper’s about friendship, Jamie Raskin’s eulogy to his son.
I have also been practicing handstands. Someday. Maybe. Or never. It’s all good.
Got you in my hearts