Holding Silvan

by Monica Wesolowska

  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?”

  Holding Silvan

  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.

  He feels so small in my arms, so manageable, so mine.

  As we pass other parents with babies still hooked to machines, they look up at us with distant smiles. Dr. A had wanted us in our own little room so we wouldn’t envy the other parents taking babies home. But Silvan
is the only baby I want and I have him, right now, in my arms. I want to tell them, “Don’t envy us. He’s dying,” and yet I’m bursting with pleasure and pride. It’s a crazy feeling. I’m triumphant. I’m ecstatic. Mother and child, we stop passing strangers in their tracks. “Oh look at you,” they coo.

  Breaking Plates

  WE KNOW THAT PEOPLE REALLY WANT TO HELP, TO BE a part of this dying, to love Silvan now while they can alongside us. David even stumbles across a discussion online about how best to help when a baby is dying. From the details, he realizes the discussion is actually about us, and how we can be helped. Because the only help I think I need is to have Silvan held, we check the box at the front desk allowing anyone to come and see him and everyone comes: neighbors, coworkers, the receptionist of our chiropractor.

  My friend Eve flies out from the East Coast to help with the love that people want to give us. I’ve known Eve almost as long as Maggy Brown. Eve is a talker. She likes to ask questions, to probe. I like how she coaxes my interior world into the light, but I don’t think I can be probed right now without pain. I don’t want her to pain me. I can’t afford for this crisis to damage our friendship, to be disappointed by her. I will need to love her and be loved by her when Silvan is gone.

  So, after Eve has come straight from the airport to hold Silvan, I ask her to stay not with us but with mutual friends who set her up with a phone. Eve’s gift to me will be to call everyone I know, to pore through my address book, contacting people so that I won’t have to endure the awkwardness of telling people who don’t know – a month, two months, ten years from now – what has happened. She talks and talks, tells the story over and over. She draws my friends and acquaintances around us, giving them a chance to help.

  Other people offer to fly across the country, across the world, to help. I’m careful in selecting people, and in giving them jobs. My friend who still hasn’t told me her marriage is crumbling comes out and takes David to the grocery store. David holds Silvan and sings to him – he has a whole repertoire of songs with his own lyrics suited for Silvan by now; he sings “You are My Sunshine” with Silvan’s name in place of “sunshine” – but he can’t possibly hold Silvan for as long as I can. He’s hungry for some normal activity after all these weeks away from work, and I’m eager to be left alone to do nothing but hold Silvan more. Standing beside my love for Silvan, all other love seems dwarfed, so I send my friend off with David, in this way tending to my relationships without turning from my son.

  Next my sister calls from Brazil in a crisis of indecision about whether to come now or after Silvan is dead, and I tell her she needs to get on a plane immediately. Katya has been known to go into a tailspin when she is unsure of something, and I dread that happening to her now. I tell her she needs to meet her nephew.

  A few days later, Katya arrives and comes straight to the hospital from the airport. I walk into Silvan’s room, and there she sits holding him, next to my mother. Katya looks up, her eyes and face aglow.

  “What do you think of my baby?” I ask, the joyous words bursting from me, and I feel my mother flinch the way she does when her children’s exuberance stumbles onto the set of what she considers a somber scene.

  “He’s sooo cute,” Katya says.

  For a moment, the sibling link is forged in gold.

  The next day, Katya says, “Thanks for telling me to come. No one in Brazil was helpful. They were all saying, ‘He’ll be all right…’ or ‘I am praying…’ They couldn’t wrap their minds around doctors in America unable to save a baby.”

  “It wasn’t just for you,” I say, “Holding him is for all of us.”

  ONE PERSON WHO does not offer to help is our doula. She has been leaving messages that we still haven’t answered until it occurs to David that she’s anxious about her final payment. It is now almost three weeks since Silvan’s birth and yet I balk at paying her. “She still owes us a post-partum visit,” I say.

  “You want her to visit?” David asks, surprised.

  “No,” I say, “I never want to see or speak to her again.”

  David says I’m being petty and irrational and calls her back; and when she hears that Silvan is still alive, she diplomatically says we don’t have to pay her yet – but she does want to make sure that we keep the book she lent us safe, the book about the amazing brains of newborns. When he repeats this to me, my emotions flare again – “ What about the damaged brains of newborns? Would she want a book back about that?” I rant – until I realize she has become the scapegoat for whatever rage or shame or blame I feel. She was there when Silvan was damaged. She was the one who suggested I stand in the shower without the fetal monitor. It was in the shower that I felt that big kick that may or may not have had anything to do with Silvan’s damage. She did nothing wrong but she was there, and I have nowhere else to dump blame. I will give her back her book, I tell David, but only when she brings the photo of Silvan that she promised to take when he was born. If she expects to be paid, I expect her to face this death.

  ANOTHER TARGET OF my irrational scorn is the hospital’s social worker. Though she reported early on in her notes that we were dealing “as well as can be expected” and that we were “tender with each other,” now she begins to say we are “resistant” to her help. Even as she enters the room, she seems scared of us. But what help can she give? She knows how to arrange for housing, transportation, how to negotiate with insurers. But we are lucky enough (“lucky,” we keep calling ourselves) to live near the hospital, to have a working car, and good insurance through David’s company that continues to support him in his absence. I glare at her when she persists in offering these few things. Worried about us, she passes us off to another social worker. However, this second social worker does not find us resistant. She finds us open to her. She says that when she asks, “How can I help?” we ask, “How can a social worker help with a baby who is dying?” and so she offers help in funeral arrangements, cremation, whatever we will need. I wonder how the first social worker could be so afraid of death and am relieved when I learn she’s left this job for something less demanding.

  FRIENDS DO LITTLE better against the rising tide of my rage and scorn. Our old friends Claudia and Brian say they can’t come to the hospital. They’re expecting their third child and Claudia says she’s afraid she will “make a fool” of herself by crying too much.

  Instead, they take turns talking to me by phone, mostly in complaint about their own lives – Claudia’s ongoing morning sickness, Brian’s commute, which keeps him away from the family for half the week, the fact that this third child has come so late into their lives that they’ll be old before it goes off to college. Perhaps they really are engrossed in their own suffering, or perhaps they are trying to commiserate in misery; either way it doesn’t work. Maybe they simply disagree with our choice. After all, at the end of the conversation Brian asks, “Why don’t you let him die of pneumonia or something else more natural?” There is no judgment in his voice, but I’m so startled to be questioned about a choice that’s already been made that I hand the phone to David. And after they hang up, I don’t dwell on Brian’s question. Instead, I swell with my superior suffering, strutting for David in a rage that others “can’t deal.”

  STILL SWOLLEN, STILL strutting with disappointment and rage, I make the bed for David’s mother. She’s the only grandparent who hasn’t met Silvan and she’s arriving from New Jersey for a week. She’s hoping that she has timed it so that she can both meet Silvan and be here when he dies. In the best of times, Linda is loving and sympathetic but always she and David argue. They argue on the phone, too, but their arguments are worse in person. Sometimes David simply argues about her inability to argue well, how she says whatever comes into her mind. This week, Linda brings as fallback conversation her boycott of France. Though she considers herself a savvy liberal, we consider ourselves more liberal, more informed, better able to read between the lines; for us, her boycott of France is misguided. And yet, when David ar
rives with her from the airport, he tells me that for once he couldn’t be bothered to argue politics. I take her suitcase down to her bedroom and tell her what time she will be able to visit with her grandson. I want her to be as obsessed with him as we are. I don’t want her to fill the silence with other kinds of conversation.

  The week passes with little change in Silvan. He will not die while Linda is here. David and I spend all of our time at the hospital while Linda is ferried around by my mother and David’s sister, trying to fill the time she’s not with us. So here we are on her last night, at the end of a long day at the hospital, sitting in the living room – Linda, my mother, David’s sister – eating dinner in silence from plates on our laps. David and I have nothing to say beyond Silvan and no one else can think of anything appropriate to fill the gloom. Linda rocks back and forth, back and forth anxiously in the glider as if to fill the silence this way. Next to her foot on the rocking footstool lies her empty dinner plate. I watch the plate going back and forth, back and forth. I’m sure she’ll break it. I consider getting up to move the plate to a more stable surface, but then I realize I’d rather have the haughty pleasure of having known she would break it. I suppose I want something to break; I want not only the triumph of having predicted that it would break but also to feel this petty pain and anger, because the pain of losing Silvan is anything but petty; it is entirely unpredictable in its vastness. The strain of loving him is starting to take its toll.

  So: I am already primed when Linda begins once again saying what a shame it is but she’s never going to buy anything French again – wine, mustard, shoes – or even go to France for a visit, though she’s always wanted to see Paris, and I lose it. I jump up. I say, “How dare you talk that way?”