Holding Silvan (11 page)

Go on
, I think,
go on
. I feel as though I've only made an introduction here, given the background. My voice has ended on an uptone, expecting more facts, more persuasive logic, something to come out, but then I hear my final word: love.

It is not everything, of course. I feel deceptive for not having strayed beyond my love for Silvan, afraid to lose the argument if I appear to care for anyone but him. And yet, what is the difference between Silvan and me? The lines between us are still blurry, fresh as he is from my womb. When I close my eyes for a nap, I still feel that I am him. When I touch my face, I'm startled to find my own nose there. And anyway, in the incredible way of our marriage in this crisis, David is taking up where I left off. “I know firsthand what it's like to have a developmentally delayed child in the family,” he begins. “My first cousin was born with a range of developmental problems, and I've seen how much her parents have had to struggle to raise her, the suffering of that family.”

I am afraid. Indeed, there is fresh movement around the room. Questions. About his cousin's diagnosis. And what exactly constitutes parental suffering.

“It sounds selfish, but a part of me is relieved,” David goes on, “that Silvan is as damaged as he is so that we can make this choice for him. Because if he was less damaged, of course we would take care of him. But I know what a toll that can take on a marriage, and on subsequent children, and on the whole community.”

There is a nodding of heads. People seem to understand
that Silvan is part of a larger community. What a relief this is. How much larger it makes Silvan himself that he is part of this larger family.

Now David is done and it's time for general questions.

First, someone asks if we understand that no prognosis is a hundred percent certain.

“Yes,” I say, “but this one is certain enough that I would not want to gamble for a miracle and have Silvan suffer more because of it.”

Dr. Z sits forward then and I stiffen. Will he say that we have to be more certain? Will he say that we always have to gamble on the side of life? After all, this is what some Christians say, as if staying alive is the greatest good, as if the longer we stay alive, the more likely we are to get to heaven. Instead, he says, “Do you have the support of your whole family in this decision?” For once, he is not using medical language. For once, he is not disagreeing. For once, he seems interested in us. Still I'm suspicious. Perhaps he thinks I'll be defensive and say, “Of course everyone agrees with us,” and then he will know I've closed down real conversation. How wrong he is. I think of my father, home with hospice, trying to sit through a family dinner with a neck brace on because he hardly had the strength to chew let alone to keep his head upright. Food kept running down his chin onto the cream-colored foam, until at last he turned to a friend of mine who was trying not to gawk at the pathetic scene, and teased her, “If you ever want to write about this, check with Monica first. I'm giving her the story.” After dinner, he gave me a stamp, “To start mailing out your writing,” he said. I think of my mother who married such a man, a man so honestly funny and kind even in his dying. How much I love her for marrying him. For her own honesty and generosity. Her tolerance of ambiguity. Her support. I look at Dr. Z triumphantly. “Not everyone in our family would necessarily make this choice for their own child, but they all support us.”

Sister C weighs in then, as if to counterbalance Dr. Z. “Any decision born of love is the right decision,” she says.

It is a lovely sentiment, though I doubt it's always true. But no one scoffs at her because love, I suppose, is part of what we're doing here. This committee is listening to the quality of our love, making sure that they recognize it as love, and that our actions are consistent with that love. This committee is not just about science and facts.

The mother whose child died tells us we are brave and unusual for coming here with this argument on behalf of our child.

Nurse Kerry agrees. “I'm learning a lot from you,” she says, “from watching you love Silvan.” She likes the boom box we've brought in for Silvan. She turns on music so she can dance with him around his room.

Then the ethicist asks if we are clear that euthanasia is illegal. What we are doing is not euthanasia. What we are doing is stopping a treatment that is futile – in this case, feeding – because feeding will not change the grimness of his prognosis, it will not keep him from dying of his condition.

“Yes,” we say.

He reminds us that morphine does not hasten death –
it only palliates a death that is already coming
.

Yes, we say, we understand.

We understand and yet we don't. We know Silvan has been trying to die since birth, through seizures, through forgetting to breathe. We know he should be allowed to die again. And yet, how is it that not feeding him is more compassionate than euthanasia? Why can we withdraw his food but not let him die in other ways? Later I will learn that this ethicist is a Catholic priest. Later, I will learn that the Catholic Church has been at the forefront of this issue for hundreds of years, providing much of our legal understanding of the balance between preserving life at all cost and considering the quality of that life. For the church, biological life is considered a “good,” but not the highest good. According to the church, we are sacred not just for having bodies,
but for having a relationship to those around us. Later, I will learn how our own advances in medicine have created a field of medical ethics out of what used to be a purely religious debate. I will also learn first-hand how ethicists may be able to navigate issues in the abstract while never living with the consequences, ethicists who might actually be made “queasy,” as one put it, by the details resulting from allowing Silvan to die while agreeing that it was a moral act. I think Silvan should be allowed to die, but is this a good death? On this day, we are too overwhelmed for such probing. On this day, we're only looking for agreement on a decision that feels right for our son.

The director of the committee is now saying, “You will be relieved to know that this committee agrees unanimously with your decision. You've shown great understanding,” she goes on, “of Silvan's diagnosis and prognosis. You clearly understand the challenges of caring for a child who would require around-the-clock monitoring for whatever remains of his life. And because feeding would only prolong a suffering you do not want for him and would not want for yourselves in the same situation, we agree with you that feeding is futile. So long as you understand that we cannot and will not practice euthanasia, we agree to proceed with the current course of treatment, including comfort care.”

Again, we say we understand.

Then David wants to know if there could be any change that would force us to come back to an ethics committee meeting.

“No,” she says.

“Not even if Silvan starts speaking in full sentences?” I ask. Though I joke, I can't help thinking this is possible in some dream world; I am relieved when people laugh.

Dr. Z does not laugh. He's not quite done. He leans forward, licks his teeth and says, “Is there any chance that someday you'll regret your decision?”

ONLY NURSES WHO AGREE WITH OUR CHOICE FOR SILVAN work with him. Perhaps these nurses aren't supposed to tell us how they feel personally, but now that we have public approval, more of them seem free to speak to us and this is helpful. One maternal-looking nurse with her hair up in a bun tells us that for seventeen years on this floor, she never questioned her job. For seventeen years, she accepted that her job was to save lives until the day she tried working at an institution for children whose lives had been saved. She no longer believes it is in the best interest of
all
children to be saved.

“They suffer,” she says.

This is the refrain. “They suffer. They suffer.”

“They suffer,” says a nurse who sometimes works with children a floor above ours, children who spend their lives in and out of hospitals. She also knows from personal experience. As a delivery nurse, she'd once delivered a baby whose mother died in childbirth. Over time, she'd fallen in love with and married the widower and taken such meticulous care of his brain-damaged baby that the baby survived until twenty-one. “He was considered high-functioning because he was able to roll.”

This really sticks with us: “able to roll.”

“He did know us so there was that,” she says, “but his only real pleasure was eating, eating also being a higher function. His favorite food was ice cream.” But it was hard to feed him, she went on. It was her full-time job. Often she had to insert a
feeding tube anyway. And eventually, despite the fancy wheelchairs and physical therapy and constant attention, he was terribly ill and it was discovered that his spinal deformation was cutting off his duodenum and this was the reason for his increasing pain and illness. Her own pain is obvious. “We had to starve him to death then, at twenty-one.”

Another nurse says, “I would do what you are doing for my own child.”

Another simply crouches at my feet, clasping my knees. “Let it out, let it out,” she says as I sob.

 

NEEDING SOMETHING TO occupy his mind besides Silvan, David becomes good at guessing at the problems of babies around us. For example, one day there is a new baby. We can see him easily from Silvan's room. He is a big baby. Must be a term baby. Already on artificial ventilation. And here comes the woman who did Silvan's EEG, the one who was evasive. As she did with Silvan, she attaches electrodes all over the baby's head and stares at her computer screen for twenty minutes. David overhears a nurse describe the EEG as “flat.” A very young woman shows up in a wheelchair then, looking dazed. Since the nurses are setting up a screen for privacy, we figure he's about to die. It's all happening very fast. We go on a break, and when we return the young mother is being wheeled away and her baby is gone.

I want to tell her that I empathize, but whatever I mumble comes out wrong, for she stares straight through me, stricken.

Her baby is dead whereas mine is still alive.

 

“IT'S HARDEST ON the nurses,” Nurse Kerry says, “when the parents aren't involved. At least with Silvan you can see that he is loved, but with those babies, it's the nurses who do all the work…”

“Does it make you want to hold those babies less?”

“You want to hold them more,” Kerry says. She tells us about one baby born without a brain at all. Those parents simply left the baby to die and never came back. “That was hard,” she
says, “because when the nurse picked her up, she didn't react at all.”

Is a baby with no brain even human? I don't know, but I feel ill. I can't imagine leaving Silvan. I can only imagine letting him leave us.

 

“TELL HIM THAT you love him and will be okay if he leaves,” Father B once said. “Tell him you're ready.” Hospice had warned us that it would be a day or two at most, but the priest seemed to know to the minute when my father would go. How familiar this seemed, the priest summoned, the family gathered, how familiar from old paintings, and from the story Maggy had told me in college of her mother holding out for Easter; it is the good death that many of us used to aspire to. As we settled in a circle around his bed, my father searched our faces one by one, and the pale blue of his morphine-hazed eyes seemed anxious. Kim, only eighteen but somehow already wise about death, said, “I think he's looking for Mark.”

“Mark is safe in heaven,” my mother reassured my father.

My father relaxed, stopped his search, and closed his eyes.

Still he lay there breathing. On and on we sat. One breath, a pause, one breath.

Then Kim said, “It's okay, Daddy, you can go.”

After the next breath, he was gone. His body sank and stilled like clay while just above the surface something skimmed, a sense of breath, of light.

 

MY MOTHER, WHO slept each night next to my father in his rented hospital bed, my mother who would do anything I ask of her for Silvan, worries that our love is only prolonging this agony. Silvan is now over two weeks old. Perhaps, she suggests, we shouldn't keep holding him so much if we really want him to go. Perhaps our holding him is keeping him alive.

This may be true, but it's what I want, it's what seems right for Silvan, and the nurses back me up. All day long we hold him;
and at night, a nurse tells us, they vie for him on their shift. From nurse to nurse he is passed, nestled in the crooks of arms, as the nurses go about their work. “So you're the mother of the beautiful baby,” a nurse says to me one morning, craning her neck to see me from the other end of the long sink where David and I and a bunch of nurses are all scrubbing our hands and arms. “No wonder he's so cute,” she says, which is about the sweetest thing anyone has said until now, because it's so normal.

Another normal thing the nurses suggest is that we take him outside, away from the stale air and constant light and noise. After all, he's never been outside. They describe the hospital courtyard with its beautiful trees. Unlike some hospitals, this hospital has no palliative care ward. It's designed only for babies they're still trying to save; but they want to help, to make this dying as good as it can be.

The courtyard we find is a ring of backless benches around a u-shaped driveway; it faces a three-story helicopter landing pad. Hospital employees come out there to smoke and helicopters land with a deafening racket, and the grass is almost always too wet to sit on. Over time, it will depress us. But the first time we take Silvan from his room, we feel giddy and alive. We free him from his monitors (only monitors for his heart rate and temperature now, attached by sticky pads, “So he won't, you know,” one most honest nurse admits, “die alone”) and we wrap him snugly and walk out of there.