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David Means Beloved

One side of David's brain never developed. It just isn't there. But explaining her brothers in terms of what he can't do misses too much, writes SANDRA SHIELDS. You can forget what is there: motion, sound and life.

Saturday, January 27, 2001
SANDRA SHIELDS
Special to The Globe and Mail

I hold David's hand when I feed him. It's one of the warmest moments I share with my brother. So much of his body is hard to look at, pathetically frail to feel. But his hands are smooth and soft, pleasing to touch.

We sit together, my body holding his upright so I can feed him three crushed pills, yogurt and a bottle of juice. For more than two decades now, every time the nipple moves towards his mouth, David brings his hand up to hold the bottle. It's the most "developed" thing he does. While he gulps juice, I search out his free hand and hang on. He returns pressure. The responsiveness of his hand curling into mine reaffirms the bond we forged when I was nine and he was new.

It followed months of doctors and tests and the diagnosis of profoundly mentally and physically handicapped. One side of David's brain hadn't developed. It just wasn't there. But David was there -- every bit of my nine-year-old self knew that. One day when we were alone I talked to him about it. I still remember how I strained to reach him. Sitting beside him, I poured all of my thinking and feeling into making sure my little brother got the message.

"I know you're in there, David." I spoke softly, like a conspirator. I told him that even though he was shut in a world of his own, I loved him. "If you ever want to tell us something, I'm here. I'll listen."

Now, in my 30s, I still love David, and I still carry the conviction that he's in there. It's a conviction that I've fumbled occasionally. The clarity of my nine-year-old emotions has been muddied. Adulthood mixed up with six years of academic philosophy can do that -- quality of life arguments and such.

In terms of dollars and drugs and pain, it's hard to justify David. It's hard to say what being alive means for him. It's easier to tell what David's aliveness means to others. To me and my family.

David has been the quiet pool in the whirl of our family of nine children. I'm the oldest. When I was born our parents had two names picked out for me, mine and his. They went through four girls before they got their David.

His birth began on a Sunday in March. In a panicked voice my mother called me to the bathroom where the cold light of winter glinted off a white bucket spattered with blood. I wanted to ask what was wrong but her voice and face forbade it. "Go get Daddy," she said.

Family friends drove my three sisters and me out to the country for ice cream while our parents rushed to the hospital. David was born three days later. He was a month early so his four sisters could only peer at him through incubator glass. He looked gorgeous. Several weeks later we dressed him in blue and brought him home.

It was almost six months before the rounds of doctors and tests began. Waiting with my sisters in our station wagon, I watched while Daddy ushered a strained version of my mother across the parking lot, a blanket-clad David in her arms. My mother was wrapped in grief and I ached to make her happy again.

We learned the word "seizure" that year. A seizure was what caused my brother in his blue knit Sunday suit to convulse repeatedly, eyes rolled back, teeth clenched while neighbours were frantically summoned to watch the girls and David was rushed to the hospital where he seized for 45 terrifying minutes.

I've seen many seizures since. They visit David almost daily, gripping him for a few seconds at a time. They are frightful to watch although they've become a familiar enemy, their horror diminished by repetition.

Seizures and medication, bottles and diapers, after 27 years they are part of the fabric of our family. As David changed from a cute baby into a thin, awkward frame, we each grew our own relationship with him. My siblings share my sense that David is in some way present. As children we gave that belief form in our insistence that David always have a stocking at Christmas. I remember watching one of my sisters sitting next to him on Christmas morning, carefully going through his sock and showing him the contents.

But it's on our parents that the brunt of David's world rests. With the unwavering competence of love, our mother has calmly incorporated three daily feedings and changings into the routine of running a large household. It shows sometimes in tired lines around her eyes. When, as an adult, I cared for David for a week, I was astonished at the labour involved. She shoulders it quietly.

Quiet, I believe, is the basis of my father's relationship with David. For years the pattern has been unbroken -- the place to find my father in the evening is next to David, napping. Often it is Dad who gives David his supper. The two will sit for awhile after David has eaten, Dad rubbing David's back and David chewing contentedly on a cloth. Dad humming and David murmuring.

In the main, we people his world. There are occasional visitors like the hairstylist who is a family friend and comes to give him a cut twice a year. The sweet grandmothers who give him kisses and cuddles. The brothers-in-law and nieces and nephews who've been added in recent years. But beyond them, David doesn't meet a lot of people.

In explaining David to anyone outside this small circle, the focus invariably shifts to what he cannot do. This draws a remarkably bleak picture. Can't feed himself, can't walk, can't talk, can't even gesture really. It negates too much, defining David's life solely by disability. You can begin to forget what is there: motion and sound and life.

David's sounds form a powerful vocabulary. On the despairing end is a shriek of primitive intensity that punctures any calm. The penetrating power of David's cry comes from the utter conviction with which he pronounces every tone. He always sounds like he means it; so while his cries can be fearful, his small fits of giggling and his deep chuckles are heart-warming. Both pull answering noises out of our family. When David lets loose with a good natured guffaw, we join him. When he wails morosely, we ask how he's feeling and offer sympathy.

One summer evening my sympathy turned into shared pain. My husband and I were caring for David while my parents took a short vacation. Just as evening turned into night, David's sounds slipped into sadness. His seizures were going through an upswing, leaving him drained and fretful. This night his sorrowful sounds pulled me away from the television. I held his hand, stroked his cheek and watched tiny tremors shake him every few minutes. The tremors seemed to be defeating him, pulling him further and further away.

I wanted to stop them. Curling up behind him, I willed the tremors to end. They didn't. I lay there holding David for longer than I had in years. I began crying, no sobs, just streaming tears. There was such a huge sadness in my brother that night. It was as if he was mourning what the seizures take -- his alertness, his energy, the small space in which he lives and finds pleasure.

There are times when I wonder if I'm not projecting all this onto David. Maybe the bond is only in my head and heart. Is there really an answering echo from David's over-medicated, underdeveloped mind? I can be suspicious of my motives. Did I simply choose the happiest way to deal with a creature who shared my space as I grew up? Was it easier to grant him a small piece of humanity?

I find that when I'm asking these questions, my eyes slide around David. I ignore him. Inevitably, however, I feel I can only answer the questions by being with him again. I sometimes put it off, not because I fear a negative answer, a vacancy too hollow to deny. Rather, I seem to be reluctant to reconnect with David because of what connecting with him is. It's big somehow.

Before I finished writing this story, I went to David with my question.

I bent down beside him, touched his cheek and said hello. David squinted his eyes, rolled his head back sharply and murmured. It's his standard greeting.

"Hey love, what do you think, do I make it all up?"

David murmured again; rolled his head; gnawed on the arm of an old sweatshirt. I don't know what it means, but I wanted badly to hug him. That in itself seemed the answer.

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