Here we are

It's hard for me to convey, over and over again, what it's like to watch Sophie struggle with seizures. I hate to do it, over and over again. I've been admonished not to do it, over and over again. I put restrictions upon myself and look for transcendence. I read the requisite literature. Yet still, as Sophie seizes, particularly now as she struggles with ESES I am struck by how exactly it, the disease, is following the path it did over five years ago. As I spooned beans and rice and guacamole into Sophie's reluctant mouth this afternoon, her second meal after a five hour nap, I remembered the pureeing of food, the stroking of her throat, the threat of a feeding tube. I thought, for a moment, that I might have something in common with those mothers whose children fall out of remission from cancer. Is this it? I think and quickly think The IVIG worked then, so it'll work now. I think does she possibly have a brain tumor that is only now showing up? Nonsense, I think. What if she IS a seizure? That's nonsense; she will get better, feel better, respond.  A spell, a curse, an imprecation, the antidote. When she wakes after these interminable naps, these naps that I imagine are the only rest her body and her brain receive, she lies in bed and has what we call a cluster. A cluster of jerks where her arms fly out and her head bobs, an almost exact mimicking of the infantile spasms she acquired when she was three months old. As I lay by her today, at 3pm, much of the day spent doing paperwork, fiddling around online and cleaning as she slept, I wondered whether I could be mindful as a sort of counter-action to the seizures. I wondered if that wouldn't be mindful at all as it implied judgement. Nonetheless, I breathed in and out breathing in I calm myself, breathing out I smile, breathing in I calm myself, breathing out I smile, the same exact words I chanted as I held the baby Sophie in my arms in the brown and white checked chair in the fourth floor apartment in New York City so long ago. So much is different yet so much is the same. There is a timelessness that is not transcendent, though, an infinite whose implication is not light and that is where I lay a bit, today.

Andrea, my friend from this strange, virtual world, sent me an email  with a message at the end, an epistolary quote used at the end of every letter sent by rural Indians when they sign off.  I don't know why, but it made me laugh and laugh and laugh.

 Here we are all very happy, living in bliss, and we pray to god that you, there, are also well and happy too.