They must train doctors to drop their impatience with human frailty long enough to strike a dulcet tone and tell a parent that their child is indeed broken. I had a car mechanic do the same once, “It doesn’t look good and I can’t tell you that it can be fixed.” I wanted to put my arm around him and tell him that it will be alright.
Impairments and disorders are fickle in how they introduce themselves. Some come through the front door covered in mud and sit with their feet on the coffee table. Others slither in through a gap or crevice that I should’ve sealed. Mother and child fade away. Well meaning friends wanted to know in what way can the world make room for this alien way of being that has a name. I told them what they could live with — I and my son had to make way, get out of the way, because the world was one way and we two another. He, always lost and I forever searching him out.
Utterly alone and in it together, we lie with eyes looking at nothing, black holes into which everything that ever was and could never be collapsing. My mind reaches out for the impossible because it’s all I know. Its what happens when the ordinary, everyday becomes spectacularly miraculous. The whole planet saturated with cheap, abundant marvels and my little boy stands outside all of that. Isn’t the world a lonely enough place then to win this insane lottery of utter alienation. “Its a test” they say. Affirmations of my special status in the after-life, my get-out-of-hell-free card, all cover uglier thoughts — I must have done something to deserve it. This because children only amplify or fix one’s state of being.
In my muslim community there were two women. One’s child had down syndrome and the other’s, autism. The doctor’s wife became saintly, the custodian’s wife whispered a nuisance before she dropped out of the social scene. Folks so very obsessed with reward and punishment look for reasons and patterns. Their faith is the lucky coin in their pocket. They fit all of existence on perfect little discs and rub it for strength and pleasure. Me? All I had ever known and had ever been told ran like ash between my fingers.
My son and I live inside awkward moments — the brief faltering before the steadying, the inchoate fog before thought, the stutter before purposeful speech. Its like we were getting ready to happen but didn’t. Like some aborted space mission we are fantastic yet interrupted. I walk into my house late one night and find him sitting, resplendent in his indifference to all, by the door. One fleeting look asking “and where have you been all this while” before he hydroplanes into his mind’s space. Another time I peer through a fever, my chest tightened by some vice, coughing till everything hurt and he sits beside me in my bed, the same spot he was hours ago. The impossibility of his always being there with me leaves me undone. What sort of love is this? Where does it begin and where does it end? No ready answers. And no questions, not really.