Everything about him compels me, unless it terrifies me, and sometimes it does both. Today, up in his room, before we clump downstairs one step at a time, hand on the banister – he always leads with his left foot – we have a pillow fight. It lasts 20 minutes, longer than I've ever known his enthusiasm to endure. For the first time in 10 years, I discover that he loves to be batted with a pillow. Astonishment – how did I miss this? – pleasure, a little boredom when it drags on too long, but (overall) happiness, because he is happy.
Before the chloral hydrate seeped into his system, while he was still standing beside his bed trying to defecate (his morning chore, right out of bed, whammo!), his defecation look on his impassive face (and the act does have its own look), he was cranky, rasping his fingers at the site of his G- tube as if it were an open- pit mine.
Not breaking the skin; just abrading it, minor stuff by Walker's self-punishing standards. The skin was white, chafed. I imagine it was painful, though he seems not to feel pain much, another sign of his syndrome.
In any event, I love to come down the stairs with him. It feels like progress. I hate his room, that forgotten lair on the third floor. I hate the wall-to-wall sky-blue carpet, and the Babar posters (which never change, like him), and the crick-crack, wooden, craft-show belt rack that's always falling apart (he's never owned a belt that has fit him, that was small enough for the tiny waist above the long-limbed legs).
The multiple chests of drawers (unmatched, wicker versus Ikea) packed with clothes we can't bring ourselves to throw away; the $10,000 veil bed hulking against one wall like an altar, encased in a tent of mesh, to prevent him escaping; the $1,200 stainless-steel IV tree standing in the corner of the room like neglected Uncle Bertie (but which we can't throw away, in case an emergency arises, in case we need it again: Christ, what if we need it again?); the rocking chair my mother gave me as a boy, now broken, one of her few connections to my son.
And of course Clarence the Clown, the nightmarish plastic clown's head that comes apart in slices, the eyes, the nose, the mouth, while Clarence talks to you, letting you rearrange his face – sad, happy, Cubist, terrorist.
Is that telling – that a toy whose face he can rearrange and distort should be my dysmorphic boy's favourite? Or is the appeal that he can turn the electronic voice on and off, unlike his own? You tell me.
He has the body of an old boxer: square, really, like a shirt box on end. His arm cans – rigid fabric tubes that prevent him from bending his elbows, so he can't deliver smashing upper cuts to his skull all day long – prevent him from developing big biceps, but he has tough lumps of muscle on his forearms. His face is heavy in the lower jaw, full in the cheeks: he has no chin to speak of. Curly hair, but no eyebrows, where he's as bald as a spaceman. A wide nose, characteristic of this syndrome (and of many others, too). Thick lips, especially the lower one, “patulous,” the doctors called it, back when he was still a novelty. Square teeth, yellowed from the formula, but undecayed.
