At last, I get it. He’s not leering. He’s congratulating me. He thinks I am with child, he thinks I walk slowly like this because I am about to give birth.
At last, he leaves; I am alone. Overhead, seagulls wheel in the sky.
“WHAT WAS HE like?” David asked early on, about my father whom he only got to meet that one time, that night of our first date.
We were hiking around a lake when David asked, while overhead a hawk circled.
“Like me,” I said. “Like once we hiked this same trail and saw that same hawk…okay, not the same hawk, but one like it, and we sat in silence and watched it circling higher and higher until it disappeared into the whiteness of the sky. And then we hiked home.”
“I’m not like that,” David said. “I’ve already watched that hawk long enough. Is that okay?”
“Of course,” I said, and we hiked on but now I think of my father again, his honesty, his humor, his capacity for sitting still in nature. I think about the time he expressed doubt about his faith, the two of us alone at the dining room table, my mother washing dishes in the kitchen, the other three children scattered. I was visiting from college, it was clear I’d lost my faith, that it wasn’t a matter of finding the right priest, that I would never be confirmed. Still, my mother had hope. In a moment, she would hear him and rush into the room. She would whisk him away to their bedroom where I would for the first time hear them in serious argument, and then he would return and say it would be better for him to work out his doubts about his own faith in private. But for these few minutes, he was still talking. “It’s the word dominion in the bible that bothers me,” he was saying. “That word seems arrogant and dangerous. Dominion seems to put us at the top of a hierarchy of nature, and I’m not sure we are at the top,” he went on. “I think maybe we’re all just part of nature…”
ANOTHER DAY, ANOTHER hike. David’s right to persuade me. Going into nature feels necessary now. We go up this time: deep blue sky, lush green hills beginning to flash the golden heat of summer. As I hike, I am narrating to myself, without even realizing I am, narrating to myself what is happening; and then my narration shifts suddenly to a vision of a book cover: Silvan, Silvain, Silvano. As the endorphins kick in, I begin to feel triumphant, as if the creation of a child out of words is as good as the creation of a child out of flesh. As if the redemption in our suffering will come from the giving of Silvan to the world in the form of a book. Silvan, Silvain, Silvano: My Translatable Child. My life, Silvan’s life, will have been made worthwhile if I can give him to others in words. Then I hear my deluded chant and can’t go on.
I throw myself to the ground.
I’m on all fours, staring at the ground. Inches from me is a patch of wild chamomile. Rising from the fuzzy green are little yellow flower-balls that sway at the tops of their stalks like treetops in a silly, powder-puff forest. When was the last time I observed a patch of weeds this carefully? The sun warms my back. David waits.
If he worries that other hikers will come along and observe my freakish grief, he says nothing. But at the same time, he has temporarily run out of consolation. He seems almost to have run out of tears. He’s impatient now with my need to stop for every wave of grief. He stands higher up the hill from me, hunched in his gray fleece and jiggling one leg the way he does when he’s anxious to get moving again, looking back and forth between my prostrate form and the yellow scar of path that disappears around a corner up ahead. He is enduring his grief by keeping busy, by consulting outside doctors, dealing with insurance, filling the car with gas while I am left free to feel every ripple of emotion. The postpartum hormones coursing through me amplify my grief, make it come in waves that bowl me over. But I can’t stay like this all day. I can’t sustain this drama. The feeling is passing. The need to be prostrate is gone. There is nothing to do but go on.
I heave myself upright.
We climb.
From A to Z
FOR DAYS HIS EYELIDS HAVE BEEN TWITCHING, BUT ON the tenth day, they spring open. It’s only for a second, but long enough to see that bright flash of life. Dr. A has warned us this might happen. Knowing Silvan’s waking might confuse us, he has assured us that even if the swelling goes down enough for Silvan to revive, the brain damage will remain. At the same time, Dr. A has reminded us that he himself is going off service and a new doctor coming in.
“But you will like him. I have fully briefed him. He is very compassionate.”
Compassionate. How I cling to that word the first time Dr. Z rushes in. I am holding Silvan, chatting with my mother across the room, looking down occasionally to admire those newly-opened eyes. Dr. Z stirs up the gloom, all smiles and efficient energy. He says, “I’m going to conduct an exam of the baby now,” lingering on the “a” as if to make the very word cute. This is how the nurses used to talk about Silvan. Before they adjusted. Now I am suspicious of anyone whose voice does not admit a touch of pain, a sadness to their vowels. Silvan hardly moves, he never makes a sound, but those long-lashed, hazel eyes seem to look around. How pleased I am to see those eyes again.
An exam means relinquishing my baby, and I do so reluctantly to this sweet-talking stranger. “Oh, you’ve got some strength there,” he says to Silvan; and, “good reflex.” With each bit of praise, my heart leaps with pride, but what for? For having carried a baby to healthy term? For the little strength he has left? For the automatic reflexes? The beating heart? Is the doctor trying to torment me with hope? Is he saying Silvan might improve? At last Dr. Z turns to me. “Do you think he’s particularly sleepy right now? I know I took him straight from your arms.”
“Oh, no” I say. “That’s him wide awake.” I laugh nervously, laugh with the agony that my son, wide-awake, his hazel eyes sliding languorously from side to side, seems to the doctor to be asleep.
Dr. Z lifts Silvan’s little arms and pulls gently up. Silvan’s chest lifts, his cleft chin tilts up, but the black-haired back of his little head barely clears the mattress. Gently Dr. Z lowers Silvan back down. “He should have used his neck strength to bring his head level with his shoulders.”
But he’s asleep, I want to say. Let me wake him properly. Motherly pride wants Silvan to pass this simple-seeming test.
“So do you want to talk here or go to a conference room?” Dr. Z asks. There is no question: a conference room, away from my mother who now picks Silvan up. I don’t trust this guy in front of my mother. I know what she’s thinking: Silvan is praise-worthy. The nice new doctor has said so. The doctors last week were wrong. My prayers have been answered. The miracle has happened. He is revived. I know, because I’m tempted to think the same.
So here we are again, back in the old Bad News Room, back in the same two chairs. The only difference is that this time Silvan’s chart is enormous; at least two hundred pages fill his three ring binder. Dr. Z begins by telling us Silvan’s story, his untroubled labor, the meconium present at birth, the lethargy, the initial diagnosis of subdural hematoma – as if we have not been living this story right along with Silvan – then the EEG showing something worse. Dr. Z is like the neurologist with her pearl earrings, presenting a detailed case out of fear of getting to the heart of the matter. He has big white teeth like silent piano keys that he licks as he talks.
Then, I hear him say, “We don’t know if he can hear but we will test for that before he goes home with you.”
Suddenly, my brain is in high gear; like a mother lifting a car to release her trapped child, my brain is cutting through the bullshit to save my son. “Why on earth would you perform more tests on my son,” I ask, “if there is a DNR on him?”
“Oh,” Dr. Z says, flipping through the chart. “You’re right. You’re right. I’m sorry. We would not be testing his hearing in that case.”
“I thought you knew about this case?” I say. Hadn’t he begun the meeting by saying he had been thoroughly debriefed? In retrospect, couldn’t I almost hear resentment in his voice that Dr. A had taken so much time passing on this cas
e? I am shocked. “You will like him,” Dr. A had said.
“My mistake,” he says, “I hadn’t got that far in the chart.”
I say, “You know, it was painful for me to watch you perform that exam on him, praising him as if he were a normal baby.” I want to be honest with him, to show him that I have the fragile emotions of any mother with a child in hospital, only my emotions are reversed. Even if Silvan’s eyes are open, his prognosis has not changed. Or has it? I need to know for sure, for if it hasn’t changed, then even with his open eyes I still believe he should be allowed to die.
“I had to make my own assessment,” he says. He licks his teeth.
“So what is your assessment?” David asks.
Dr. Z looks surprised, as if we should have known by watching. “Even without the EEG results, just from that physical exam, there were alarm bells ringing.” Alarm bells. At last, we are coming to the same page. At last, he will confirm the prognosis on which we have made our decision. But instead he goes on, “I had a terminal patient once whose parents took him home. At home, he lasted six months.”
I gasp. “Is it actually possible to survive six months without food?”
“No, they were feeding him, and happy for every minute they had.”
“But we aren’t feeding our child,” I remind him.
“Are you saying,” David asks, “that you want us to take him home so you can have his bed?”
THOUGH DR. Z assures us that we are welcome to keep Silvan in the hospital as long as we need, by that evening we have a new problem. Silvan has woken up enough to want to suck. I figure this out when he wriggles in my arms, makes a little noise, seems to be fussing in a mild, damaged way. Not wanting him to suffer, I offer him my finger, and to my surprise he sucks it and is soothed.
That night on the way home from the hospital, the midnight streets dark and deserted – each night, it seems, we stay later and later – David asks, “Should we tell Dr. Z?” I look over at him. David’s face is ghastly, pale with exhaustion, lips stretched in a grimace.
“I don’t know, I don’t know,” I say.
David begins to weave in the lane, trying not to cry.
Though we want to believe this is all just part of the waking up that Dr. A had warned us about, with David’s question, we sense we are crossing a new ethical line. Not feeding Silvan now may no longer be as justifiable as it was when he could only eat artificially. With an adult who stops eating as death approaches, an argument can be made for not forcing them to eat against their will, but babies always have to be fed by someone else even when healthy. I find that the mother in me wants to believe that if Silvan can now suck, then he can eat, and if he can eat then perhaps he needs to be offered food. As in one of my childhood fantasies about sainthood, I want to believe if I only love him enough, he will learn to eat, go off to school, get Bs and Cs. I could write a book then about the heroism of my defiance of Western Medicine, the astonishing power of a mother’s faith. In fact, each time I peek at the newspapers stacked unread at home, I find these kinds of stories featured – it seems our newspaper is in the midst of a series on babies who have “miraculously” survived – but I refuse to be seduced. Silvan is not a baby who can “recover” if I simply have the right kind of hope. To think this would be to flatter myself at his expense.
BY THE NEXT morning, our secret is out. The nurses know Silvan can suck; they know that when you stick a finger in his mouth, he is soothed. How relieving to know that the nurses are so good here, paying as much attention to our son as we are, soothing him with their own fingers. “Did you already know?” asks the one who gives us the news, and when I nod, she says, “Of course you did. You’re his mother.” In this way, we are saved from our own secret.
That afternoon, Dr. Z comes in to talk about the sucking. “There has been a change in status” is how he puts it.
“What does that mean for us?” I ask.
“Whenever there’s a change in status, we have to review the course of treatment.”
Though he speaks in medical jargon, I think I know what he means and for a moment I am in that tunnel again, at the bottom of that well down which I fell when I first heard the news that Silvan was damaged. The future I want for my son is being yanked from me again. But then I remember this is not just something I feel in my gut; I have the language of the hospital to explain myself. Although I want to believe that Silvan might be able to eat, I still believe that he should be allowed to die because his prognosis has not changed. I say, “But the change in status doesn’t change his prognosis, does it?”
“No,” Dr. Z admits.
“With this prognosis, we don’t think he should have to live.”
“In that case,” he says, “we need to convene a meeting of the ethics committee.”
We don’t know what an ethics committee is and he explains, in brief, that it is a panel – of doctors, nurses, ethicists, legal counsel, lay people from the community – that has to be convened to give recommendations whenever there is a question about the course of treatment.
“Is that because you disagree with this course of treatment?” David asks.
Dr. Z repeats, “We do this whenever there is a question about a course of treatment.”
“But why, if you agree with us?” David asks.
Dr. Z does not say specifically if he agrees or disagrees. “I am not comfortable continuing this course of treatment without a review from the ethics committee.”
We feel at sea. This struggle has been there between us since his very first exam of Silvan. But it is always like this, strangely submerged. He is the only person in the hospital who seems to disagree with us and we want to get purchase on the ground and do battle with him, but everything feels slippery. I think of my father again. With what dignity he approached his dying, as if this were his last lesson to me. I was twenty-eight; he was sixty-one. He’d been given one year. “We’ve decided I’ll retire,” he said, “and go through the treatments, and then we’ll go on one last trip to Poland because we loved it so much there last time.” He got dressed the next morning and went off to work and named a successor at the lab where he’d been chief for over twenty years, a visionary scientist butting heads with state bureaucracy over lead in children’s playgrounds, bad air in buildings, passive smoking. He came home with a crumpled stack of reusable brown-paper lunch bags from the stash in his desk drawers. He made it into work perhaps five more times, and then he got too sick from the treatments to go anywhere. But he remained himself. He made the nurses in the hospital laugh. He called his catheter bag full of piss his “Gucci bag.” And once, when they were all acting as though he still had a year, a nurse tried to teach him how to walk with a walker. “Push it like a grocery cart,” she said. And my weak and trembling father started going haywire, rolling sideways with the walker, then lurching to a stop and swearing. “What’s wrong?” she asked in a panic, trying to grab his arm and keep him stable. “You said push it like a grocery cart,” he said, “so this one has a wonky wheel.” I remember my father, struggling as we are now, with his own doctor. “Once your fever’s down…” the doctor would say, “we can try this new treatment or…” At last it was my father who held the compass, who headed home with hospice, my father who recognized that it was time to die.
“Of course, it may be difficult,” Dr. Z says now, “to convene the members of the committee so quickly, by tomorrow, or the next day at the latest…”
“Why by tomorrow?” David asks.
“I won’t continue this course of treatment over the weekend without a review.”
“But what if you can’t get everyone together soon enough?” I say. I am in agony. I picture Silvan hooked backup to his machines. Fed again for a weekend. Hasn’t he already had his life prolonged enough to prove that dying is what he’s supposed to do?
Battles
ETHICS COMMITTEES, SO COMMON IN HOSPITALS NOW, were almost non-existent prior to the 1970s. It was not until Karen Ann Quinlan’s coma an
d the subsequent legal battles that the necessity of such forums became apparent. The absence of ethics committees prior to Quinlan is in part because, until the 1960s, the decisions doctors made for their dying patients were simpler. But with new technologies, patients could be pushed to the edge of what some would consider life. This is just as true for babies now as it has been for years for adults. While the age at which a fetus is considered viable has gotten younger, interventions have also become more extreme. How many stories there are about babies who have been saved. How heartening those stories. And how hidden and underreported the other story – that of children who go on to live on the tortured edge between life and death for years. Back when I was born, severely premature babies were called miscarriages. And a baby born as listless as Silvan might even have been classified a “stillbirth.”
When I first read this fact, that Silvan might at one time have been called “stillborn,” I experience both relief and shock. Back then, it was not uncommon for such “stillborn” babies to be starved. With the father in the waiting room and the mother in her twilight haze, the doctor would make the decision alone. He would decide what was best for the family, what would make it easier to go on and have more children. “Your baby did not make it,” he’d tell the parents while the baby lay hidden from them in a bassinet. The nurses would be told not to touch it. This fact is both shocking and affirming. While it makes me feel ill to think of Silvan dying without my knowledge and alone, how much easier it would’ve been in some ways to think Silvan had simply “not made it.” How much more like nature, cruel and efficient.
Holding Silvan Page 7
