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Alone with an out-of-date Vogue magazine, the waiting room walls have become my only confidants for the past two hours. I’ve been sitting so long, my backside is numb and my feet have gone cold. The back of my cotton blouse sticks and begs to remain with the brown vinyl chair where I’ve been seated. But my mind persists in its objective to pull this tired body from its resting place for yet another slow walk down the corridor. This incessant waiting and pacing will drive me mad. For now, it’s my husband Scott’s turn to sit with Jack and my time to wait. One parent at a time is better for Jack. At least, this is what the doctors have said, but I suspect that it is the doctors who find two parents a distraction. The corridor is quiet except for the soft din of women’s voices coming from the nurses’ station at the end of the hall. As I near the station, I find one lone window to the outside world. It hasn’t been washed in some time and the metal grating on the exterior obscures the view. I pause to consider the world outside of this hospital; a world I can just barely make out and so distant at this very moment. Rain is falling and forming puddles in the grooves of dirt underneath the adventure-playground. The large wooden sign on the front lawn reads Sunnyhill Hospital; a name that sounds so pleasant and warm, the words chosen carefully and designed to make a good impression. A reflection in the grimy window stares back at me. Creases outline my dark swollen eyes. More lines run downward from the corners of my nose, past my mouth to the jaw bone. The lines seem to pull the corners of my lips down into a full frown. I feel my teeth clench tighter and my neck stiffen. Who is this woman? All signs of optimistic youth now gone. "It’s one o’clock. Your turn." Scott’s voice breaks the silence of the corridor. I sense that he hasn’t come too close as if understanding that he has interrupted. The window commands my attention until I can’t avoid him any longer. "Already?" I turn to face him. He is leaning against the waiting room door. "Yeah, real funny. You looked like you were in the middle of something very important there." "How’s Jack...is he getting cranky?" "He’s holding up okay. It’s me I’m worried about." Scott is staring off down the corridor now so that he doesn’t have to meet my gaze. I'm relieved by his distraction. "Well, you won’t get any sympathy here. Are the doctors waiting for me?" "Yep." Glancing over his shoulder into the waiting room, he shuffles his feet to move. "Guess it’s my turn to assume the waiting position." I nod, turn, and head off down the hall. When I reach the end of the corridor, I turn back momentarily. What has happened to those broad shoulders, those huge forearms he’d wrap around me when we were first together? He was always touching me, comforting me. I call out to him, "Oh yeah...there’s a great ladies magazine in the waiting room you’ll want to check out." Still leaning against the door frame, he waves his right hand in the air but doesn’t look up from his feet. When I reach the therapy room door that hides Jack and the doctors from me, I pause and take a deep breath in. I was an optimist once, wasn’t I? Goddamn it, I’m still that person. I lift my chin and push open the door.
Almost three years later, our second son arrived.
He wasn’t like any child I’d ever known or imagined. A scrawny, screaming infant son we had immediately named Jack had come into this world and wasn't quite sure that he wanted to stay. He reminded us of how narrow the margin really was between life and death, between hopefulness and denial. Every day for the next two years he cried and wailed his way through each day and every night, with little or no sleep to be had by anyone who shared his life.
Walking didn’t come as easily to Jack as it had to his brother. And when all the typical age-appropriate milestones had passed and he still wasn’t walking, my husband and I were still not too concerned. He showed such fierce determination, he always had us believing that he’d do it any day soon. He was bruised and battered from all the falls he took, but his high tolerance for pain kept him from ever complaining.
When he did finally find the mobility of his feet, he ran. He ran to catch up.
Later, when all the children in the neighbourhood were riding bikes, he wanted to so badly too. A doctor told us that because of his small stature and poor motor skills, we should never encourage him to ride. "You’re setting him up for failure and you’ll be risking serious injury," he said.
So we hid his brother’s old starter bicycle from him.
That only worked for so long. Soon, he discovered it in the basement; knowing it was there all along, he hadn’t given up the search. And when I wouldn’t unbury it from its hiding spot and lift it out to the driveway, Jack begged, hollered and cried for three straight hours, clutching and gripping at the dusty bike, throwing himself on the floor, calling to his brother for help.
When I couldn’t stand it any longer, exhausted, I dug the bike out. It was clear that I was beaten on this issue.
After that, I’d look out my bedroom window that faced the long, circular driveway that entered our yard and see Jack repeatedly getting on the bike and falling off the bike. I’d grip the window sill and force myself to watch, but not rescue him. It was clear that he knew he was going to do it, I could see the strength of his conviction. It was also clear that I needed a little more faith.
When he did finally learn to ride, he rode better than he walked. He would ride and ride and ride. If I turned my head for too long, Jack would disappear on that little starter bike and we’d have to organize neighbourhood search parties to find him.
He definitely knew what he liked...and what he didn’t like. School was one of the things that he really didn’t like.
Jack was the boy who, in the first week of kindergarten, mooned the principal and received the first of many detentions. School was hard for Jack. He just didn’t quite fit. Sitting at a desk for any length of time was almost impossible and the school work only frustrated him. He had already caused far too many disruptions in class and, each day, he was becoming more and more isolated from his classmates.
In spite of the problems he caused at school, he still gave me such joy, especially at Christmas-time. Jack always believed in Santa Claus, even when every other child in the schoolyard told him Santa wasn’t real. Last year at the mall, he spotted a quick-witted Santa walking out of the men’s washroom, probably just returning to his duties from a break. He shouted across a crowded mall at him: "Hey Santa, it’s me. Jack. I been a good boy this year!"
And after only a slight pause, Santa replied, "Oh Ho, Jack. It is you! How’ve you been doing?"
Jack was the boy who told me he loved me whenever the mood struck. The mood struck him a lot. When I’d cry at sad movies, he’d cry too; then hug me and say, "Don’t die Mom. Please don’t ever die".
But it was brother Ben who was Jack’s biggest hero. He had this uncanny ability to understand Jack’s poor speech when no one else could decipher it. One moment he was his interpreter and the next he was his protector in the schoolyard.
Oh, they were regular brothers for sure, teasing each other, wrestling on the living room floor and, occasionally, out and out fighting. The funny thing with Ben and Jack was, without our words, they had established how they felt about each other. Whenever Ben would score a goal in a hockey game, Jack would call out to Ben until he’d acknowledge him with a wave. Sometimes at the ice arena, Jack would climb full up onto the outside of the boards, stretch his small body up the glass so that his head would just peak over and shout, "I love you Ben!"
Scott and I had committed ourselves to Ben's and Jack’s sports endeavours, spending hours at the arena and the ballfields with them both. It was just so disappointing for Jack when other kids and parents ridiculed his valiant attempts.
When Jack was ten months old, I spoke to Scott for the first time about the thoughts that had been filling my head since he was born. We had been up all night. We were both exhausted.
"I think there’s something wrong with the baby."
"Of course there’s something wrong with the baby," he responded coldly. "What do you think...that I didn’t notice the baby won’t stop crying?"
"That’s not what I mean."
He stared at me.
"I mean...I think there’s something wrong with his brain."
"Oh, come on," he drawled, throwing his hands in the air. "You’re just over-reacting. He’s gonna be fine once the surgery’s done. He’s just hungry."
"I think it’s more than that...I really want to take him to another doctor in Vancouver."
"No more doctors! There’s nothing wrong with my son."
I hear the psychiatrist say, "Jack is mentally handicapped."
The words are rolling, slowly, over and over in my head. These words have been chosen carefully, designed to make an impression.
I look at Scott and he doesn’t look back. His eyes are glassed over and he’s looking right through the psychiatrist, silent.
The odd thing here is that these words are not impacting. They’re bouncing right off me. But the feeling of fatigue is rolling right through me.
Jack, unaware of what we’ve been talking about but sensing that something is wrong, climbs up onto his dad’s lap without much help from Scott. Scott’s arms are sort of hanging at his sides and he makes no gesture to steady Jack. Scott’s gaze is still focused on the wall, his lips move only slightly to let out a small sigh. Jack props himself on his knees, reaches up with both hands and grabs his dad’s face in his hands and stares him square in the eyes.
"You’re skin is so rough, Dad," he says as he rubs the whiskers on his dad’s cheeks.
Scott breaks his gaze and smiles for a second so that I can just see saliva sticking to his lips as they part. I don’t really want to look at his face any more.
"What’s wrong Dad? Don’t be sad Dad. Please don’t be sad."
"I’m not, Jack...I’m fine," Scott says. But I can hardly make it out.
"I love you Dad. Please don’t cry."
Jack turns to look at me with an alarmed look, still sitting on his dad’s lifeless lap.
I hold my arms out for him to come to me. He climbs on my lap and begins to rock back and forth. The psychiatrist is speaking about the levels of mental retardation, but I can hardly make out what he’s saying. I’m concentrating on Jack now. His tiny little body rocking back and forth, back and forth.
I am so tired and I want to curl up right here with my boy in my arms and just have a little sleep. I’m not tired because of how hard it is to raise a son like Jack. It’s actually very easy. I love him, he loves me. It’s really pretty easy after that. I’m tired for what the world will do to him; for what it has just done to him.
He might not get to play hockey, because the coach will think that he can’t learn how. He’ll never get the chance to even take a driver’s test, because the government, through this doctor’s decree, will have already decided that he can’t. He may never be able to marry and have children because the world fears more genetic imperfection.
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