To Know the Dark
To go in the dark with a light is to know the light.
To know the dark, go dark. Go without sight,
and find that the dark, too, blooms and sings,
and is traveled by dark feet and dark wings.
- Wendell Berry
I began writing my book about raising my daughter Sophie over six years ago, and while the first chapter is titled "Diagnosis," all it really does is recount that day when I sat in a metal folding chair in the emergency room of a New York City hospital, nursing my three month old baby while two impossibly professional Fellows in Neurology broke the news. Sophie was "diagnosed" with infantile spasms of unknown origin or cryptogenic epilepsy later that week when all the tests came back negative, and so began our fifteen-year odyssey of trying to figure out what caused the seizures and what might make them stop.
They have never stopped, and it was only last month, three weeks ago to be exact, that we learned what might, perhaps, be a diagnosis, the answer to her seizures. Or not.
Throughout this decade and a half I have remained steadfast in my belief that Sophie's intelligence is deep, so deep as to be only perceptible through the darkness of her eyes. It is that dark depth that has kept me going, hauled me up and out of another depth entirely, shaped and molded me, made me who I am.
What I have gained from these fifteen years of navigating in near-darkness is far greater, I believe, than anything I might gain from the sliver of light offered up in the ghostly digital reading of my daughter's brain.
Elizabeth wishes everyone a Merry Christmas and a joyous new year. The rest of her blogging world is over at a moon, worn as if it had been a shell.