Back in olden times, let’s say the early summer of 1995, I had no idea about anything. Ok. That’s hyperbole. I knew about traditional French pastry, had trained in one of the finest kitchens in New York City. I knew a bit about modern poetry, a whole lot about novels in general and a smattering of French. I knew how to find my way around a library for sure. I knew how to flirt, how to be melancholy, how to nurse my newborn baby. I knew about nothing, in other words. Sophie was diagnosed with a rare seizure disorder, seemingly out of nowhere, on June 14th, 1995. She was just over two months old. Called infantile spasms, the disorder was a type of epilepsy with a “particularly bleak outlook,” as the bible of books about epilepsy stated, the one I ran to the new Barnes and Noble to find the moment I was told. O.K. That’s hyperbole. The moment I was told, I was sitting in a gray folding chair in the emergency room of New York Hospital, and I believe I stood up with my baby and shouted at the Fellows to get out, get out now. A little later, the doctor assigned to our care advised me to read nothing about infantile spasms. Reader, in 1995 I had no computer and the world wide webs were weaving themselves into existence. There were approximately two lines about infantile spasms in that book, and those stand out still. I’ve told this story a million times, but it’s still fresh, the moment I became a caregiver, a different kind of caregiver than I had imagined. It’s always like that, isn’t it? A stark moment of clarity, and then a blur. Over the next week, I learned how to inject a high dose of steroids into the 12-pound baby’s thigh muscle twice a day by practicing with an orange, and over the weeks following June 14th, I learned about a whole lot of other things, so many things, all the things.
I was a formidable caregiver from the start, for some reason, and began running the show.
For some reason when I say formidable in my head while reading this, it comes out in the french pronunciation when I think of you. Sophie is blessed to have you.
That picture. I stared at it for a long time. It so completely illustrates your words.