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.
Hands like gloves, huge for his size. The helmet he wears more and more of the time now is royal blue, a polished slippery foam - the blows glance off it. It came with a rainbow-coloured strap, someone else's gesture at inclusiveness. (Is Walker as strange to the outside world as a transgendered person? I sometimes wonder.) He can hurt himself and others swinging his arms, butting with his head; he even hits Ginny, our border terrier, unintentionally. She doesn't hold it against him. I, too, always give Walker the benefit of the doubt.
There are now 2 3/4 rooms in the house dedicated to his belongings. He expanded his domain gradually, but his empire is still the same size today, three years after he moved out to the group home. He spends a week-and-a-half there and then three days at home, but we keep our version of Walker's world intact. Because of course we can never let him leave us, even if he wants to.
There's an entire room on the third floor, next to his bedroom, dedicated to the storage of toys he's never played with and clothes he's never worn - the archaeological history of our futile belief that this or that plaything would pull him out of his closed-off world, into our own more public space. They rarely did.
There are drawers of clothes Walker was given by outsiders as presents - clothes that required too much threading or buttoning, clothes made of the wrong fabrics for his ultra-sensitive skin, decent intentions that had flummoxed dozens of people as they racked their brains wondering what on earth they could buy our strange and limited boy. The dinosaur castle that cost a hundred dollars and occupies him for five minutes a month, if he's up here within sight of it.
Mr. Wonderful, the doll that when you press its stomach says all the right things: "Honey, why don't you take the remote. As long as I'm with you, I don't care what we watch." That held his focus for 15 seconds. My wife, however, got a couple of laughs out of it.
On the other hand, a gable from an old gingerbread house stuck to a paper plate - petrified and long inedible - attracts him whenever he sees it. As does a plastic bag of Christmas ornaments, an invention of his nanny Olga's, good for a few hundred hand-rolls a day. Panels and puzzles and balls and sparklers and buzzers and Plasticine, activity boards, pop-goes-the-weasel boxes, enough educational toys to change the future of Africa, dolls, stuffed animals, costumes - all languish like a reproach in a series of white laundry baskets.
Downstairs in the basement, in the old sauna we use for storage (who has had time for a sauna?) are even more unusual objects, the truly frightening stuff we were lent by the social-services departments of various levels of government for the therapists to use when they came by the house.
When Walker was an infant there was a good chance that whenever I stepped into our house I would find a woman in her thirties or forties in denim coveralls, sitting on the floor of my living room, patting him, stimulating his cheeks, manipulating his hands, patiently repeating the same sound or the same gesture over and over and over and over again.
Every time I walked in and saw such a woman I felt both a pang of grief, as I remembered once more that I had a son who needed her help, and a surge of hope and gratitude - because perhaps this session would be the breakthrough that would send him on his way to a normal life. I still feel both lurches when I see him with a new, fresh, undefeated teacher.
To this day in the sauna, for instance, there is a set of plastic yellow half-buckets, each three inches high, each with a different gizmo in the bottom. One, for example, has a yin-yang wheel, a black-and-white swirl with a knob to twirl it. I understand the yin-yang wheel: Infants respond well to contrast, to black-and-white patterns. Around the edge of the yin-yang wheel, in turn, are metal rivets, which ding a wheel whenever the yin-yang wheel is churned. Ding-ding-ding-ding-ding! Something vaguely Nepalese, Tibetan. Surely that would work for my little Buddhist?
The gizmo, in any event, is inside, on the bottom of the yellow bucket. There are two holes in the bottom of the bucket, too, possibly finger-grips, possibly drool-drains, possibly both. I have never been able to understand, quite, how to use this device, and I have never seen it hold Walker's attention, not even for two seconds.
But we keep it anyway, because maybe (as noted) this will be the magic bucket, the contraption that changes everything.
A paper label has been laminated onto the outside of the yellow demi-bucket:
FINE MOTOR DEVELOPMENT MATERIALS, TWIST, TURN AND LEARN FULL CHIME MODULE #10
And beneath that, rubber- stamped in ink:
METRO SPECIAL PROGRAM (VISION)
I don't know which is more depressing: the awkward clunky design, the incomprehensible finger/drool holes, the bureaucratic stamps ("#10," one of many), the full-chime designation (perhaps the quarter-chime module would have worked more effectively?), or the even-more-bureaucratic division (vision) within the larger division (metro special program), with its inference of large and all-seeing provincial and national programs above, each nesting down, like a know-it-all, to smaller and smaller sub-jurisdictions until finally, at last, we reach this tiny, ugly, brutal, awkward, clumsy, two-holed, yellow, plastic corner of the system that has been reserved for my unfixable boy.
The touching hopefulness and yet utter hopelessness of that label, the grunting Neanderthal conception of human nature (stimulus-response, good-bad, on-off ) it reflects. Or is it just that there are four more yellow plastic activity buckets downstairs, just like this one but different? A plane with a movable propeller. A clown with a spinning bow tie. A bunch of flowers on wobbly stems. The major clichés, because children respond well to clichés - at least normal children do, but not Walkie.
Each yellow bucket is as awkward to operate as the next one, each one a reminder of how dark and murky and flat-out basic our understanding of childhood development actually is, how little we know. But stackable. The buckets have that going for them. I know how crucial stackability is in a house full of junk and disappointment.
Every time I look at the yellow activity buckets (and I put them in the sauna so I wouldn't have to look at them) I see the history of Walker's life in their minute details. They are only a few of the carefully labelled contraptions the educational councils and special assistance boards and special access groups lent us - lent us! Expecting us to wash them and give them back when the problem was solved! As if the problem would one day be solved.
As if when that day came we would be able to find them again in the avalanche of toys we lived under, figure out which of a dozen agencies they had come from, and where that agency was now, wash them up and then load them into the car - maybe Walker would come along - and drive them back! Lovely dream. I wish it worked that way.
Instead, the yellow buckets live in the unused sauna and make me feel guilty to this day - one more task I have not had time to accomplish. There was a clearly delineated system designed to teach skills to Walker. Acuity of vision! Gross motor skills! Hand-sound associations! The ability to stick his finger in a goddamn hole! Why could I not hew to the system? Surely other parents did - that's why the system was designed the way it was. So I was once convinced, in any event.
Never mind that the system never taught the boy anything.
The most mysterious of the loaned and purloined devices is the red-and-white triangular box. This contraption has a tape- laminated label too:
TOYS FOR SPECIAL
PRISM #5 CATALOGUED
The three long sides of the triangular box are red; the end caps are white. Four of the five sides are designed to stimulate the Child in a different way.
One side has a mirror - a mirror so scratched it resembles a patch of pavement, but a mirror nonetheless.
Another side has two buttons on either side of a light. The light is in the middle of a depressed circle.
A third side has another depression, in which there is a smiley-face pattern in tiny red lights; below the face there is a wooden roller that does not roll, but that clicks when pushed.
Finally, on the bottom of the contraption is a string that, once upon a time, lit up the face lights. In my experience the lights never worked, but that is the theory. The theory is that if the Child pulls the string, the face lights go on, whereupon the Child will be stimulated to move his or her hand toward the roller below the face, and the roller will make its little noise.
The intention and theory of the device are represented by a formula:
STRING + LIGHTS = FACE RECOGNITION WITH VOICE/NOISE ASSOCIATION
The purpose of the toy, then, was to teach Walker to associate faces with voices, to pattern into his mind the concept that a face and a voice might be related. At least that is my best guess. I tried to call the manufacturer, to learn just what the device was supposed to teach my boy, who sometimes smiles at me when I put my face next to his and call his name, but the manufacturer's name is not on the toy. Perhaps this would have been too distracting.
I still remember the day, back when Walker was an infant, when my wife came up with the idea of storing a toy basket on every floor of the house. I thought it was a stroke of genius; I thought we had the problem licked. But all these years later they're still there, stuck and full, as we often are.
Excerpted from The Boy in the Moon: A Father's Search for His Disabled Son. Copyright © 2009 Ian Brown. Published by Random House Canada. See the review today in Books, page 11.