This past weekend marked an anniversary that always passes uncelebrated and usually not even commented on out loud, but which never goes by without a great deal of internal musing.
Nine years ago, Schuyler was diagnosed with bilateral perisylvian polymicrogyria. Nine years ago, the monster revealed itself and the future fell dark.
It fell dark mostly because our meeting with Schuyler’s pediatrician and her neurologist at the Yale School of Medicine was largely an exercise in Worst Case Scenarios. That’s not their fault. It’s what we as parents and patients ask for and even demand. “Give it to me straight,” say a thousand tv patients to a thousand tv doctors. We rarely see the followup, that moment of “Holy crap, I would very much like for you to go back and give it to me a little less straight if I could, please and thank you.”
But we think we want to hear the worst of what can happen to our kids, and as their protectors, it is right and proper that we do so. So we heard that Schuyler would probably never speak, that she would almost certainly have seizures which could debilitate or even kill her, she would probably have difficulty swallowing and might require a special diet best described as “everything goes in the blender, enjoy!”, and she would very likely have some level of what was still quaintly but not quite charmingly referred to as mental retardation. Schuyler would drool, she would seize, she would stumble, she would choke, and she would very likely have neither the language or the mental capability to express her frustrations with this life that our infinitely unlikely combination of insanely rare genes had given her.
Nine years later, I would very much like to have a vintage Delorean with a flux capacitor parked outside my apartment, one that I could drive to Connecticut and hit 87 mph right outside the Yale Med School. I would like to be able to go back and find that broken father, the one walking alone out into a perfect New England summer evening with tears in his eyes. I would like to pull him aside and tell him that the future isn’t even remotely as dark as he fears, that it will in fact be the finest decade of his life.
I would tell him how the doctors and the teachers and the therapists he’ll meet in the years ahead will be smart and dedicated individuals, and that they will help Schuyler immeasurably. But I would warn him that those professionals would also largely be as wrong as they could be. Schuyler will break through the wall of Very Bad Things they were building in his mind. She wouldn’t even know she was doing it.
I would tell that father how Schuyler will have a developmental disability but it won’t be extreme, and it won’t keep her from developing into a vibrant, funny and clever little girl. I would tell him that seizures will be late to arrive and will do so on gentle paws, not the grand mal monster feet he’s imagining. Schuyler will eat regular food, I’d say, although she will do so like Jabba the Hutt and somehow remain rail thin, so budget accordingly. She’ll drool a little, but she’ll adopt funky skater wrist bands to address the problem while at the same time starting a little mini-trend both online and in her real world. And her speech will be largely unintelligible to most people, but it will vastly improve, thanks in large part to astonishing speech technology about which he doesn’t have even the slightest awareness yet.
I would tell this younger and sadder me that things for Schuyler won’t be easy, but they won’t be as hard as he fears. And I would tell him that the adventure he was embarking on with his broken yet perfect daughter would define and enrich him in ways he couldn’t even begin to imagine. I would send him home to his family and let him begin the fated work of his young life, raising a strong and wise little girl while becoming perhaps just a little stronger and a tiny bit wiser himself.
And then I would get back in my Delorean and I would return to the present, where my weird and wonderful little monster slayer awaited me.