Holding Silvan (6 page)

PERHAPS CRISIS ALWAYS BRINGS US BACK TO CHILDHOOD, but I seem to be reverting. As we prepare to leave the hospital that night – Dr. A still wants us to go home and think about our decision before taking any action – we run into an acquaintance. She works on a different floor but has heard about Silvan through mutual friends. She has been looking for us to tell me what she tells very few people – she had a stillbirth before she went on to have the rest of her children. She is very beautiful, with smooth, olive skin and green eyes that mock the dull green of her scrubs. Her living children, whom I have met at a party, are just as beautiful. Standing too close to me, her earnest eyes on my face, she says, “I want you to know that whatever happens, you are strong enough to survive this.”

And I resist her comfort. “You were probably
younger
than me when you lost your first,” I say, as if my suffering needs to be greater than hers, as if this is a competition I need to win to make what I am losing acceptable, as if by proving that I am the champion of pain, I will be rewarded enough to make this pain worthwhile.

“But I had fertility issues,” this well-meaning friend of a friend says, opening her green eyes wider, playing along. We take a step away from each other, squaring off like fighters.

“Of course,” I say, catching myself, “you're right. Thank you.”

 

IT ISN'T FAIR
, I think bitterly on the way home in the car; and then I remember my father trying to teach me not to think this way. “Nothing's fair in life,” was his constant refrain, his greatest moral teaching, used mostly to head off petty arguments. Thursday evenings in my childhood, my father always had to “hold down the fort” as he put it, while my mother had choir practice down at the church. One Thursday evening in particular, my perfumed mother came wafting through the dining room, kissing us all goodnight, leaving my father in charge of a special dessert. There it sat, a
panforte
smaller than a Frisbee and many times heavier, all blackened fruit and nuts, on a plate beside him. I couldn't believe our luck –
panforte
on this ordinary Thursday night – it felt like Christmas. He began the task of cutting and distributing as equally as he could to four kids. He passed the first piece to me. Then I watched him cut the next. It was a good-looking piece, too, and as I would relate it to myself later, I thought,
I will be polite and pass this down to Katya
.

Abruptly, my father changed the position of his knife. “For holding out for a bigger piece than your sister,” he said, “you get half.”

I howled at the injustice. I told him I was being polite, generous, self-sacrificing. When he didn't believe me, I stormed from the room to hide beneath my green desk, pulling the desk chair in after me. From the comfort of my little green cage, I told myself I was right. By refusing to come out, I was punishing my father. When he saw the unfairness of my suffering, my father would give me the respect I deserved. But the longer I sat, the more complex things became. Even as I stewed in righteous pride, I felt as if my father could see a deeper truth. He could read between the lines of my own story. For the truth was, had that next piece not looked equal to the one in front of me, I would not have passed mine down whereas my father wanted me to accept that, even if the next piece was smaller, my life was fine. He wanted me to be grateful for
whatever
I got – and I refused. For being good, for caring about others, for suffering
enough myself on behalf of those others, I thought I deserved at least the same as everybody else.

 

“IT'S NOT FAIR,” I say to David anyway when we get home that night. The certainty of our beautiful green-eyed acquaintance that I will survive has not comforted me, coming from someone who has reached the other side.
A stillbirth is easier
, I think cruelly;
she went on to have more children; she has no idea what I am suffering
. Instead of letting myself be crushed by what we're enduring, I swell with arrogance over it.

But David is like my father. He won't brook melodrama. “If anything,” he says, “we're lucky Silvan's prognosis is as bad as it is.” And that's true. Although Dr. A has said David and I need to discuss this further, we barely need words to come to agreement. Because Silvan's prognosis is as bad as it is, because something much worse than stiff limbs and poor grades are in his future, we aren't faced with as much of a moral quandary, as much of a threat to our marriage. Silvan is in a coma. He's being kept alive artificially. Even if he revives, he'll never be able to survive on his own. Even if he revives, it will be to a life of constant dying. We sit on the couch together holding hands and feeling certain. We are still in shock; in some part of ourselves, we must still believe the baby we're waiting for has not yet arrived. But at the same time, we're certain this very same baby has arrived and is ready now to leave. We need such certainty to act.

“We have to tell Dr. A tomorrow that we're ready,” I say.

David gets up to call his father and stepmother, his mother, his sister. In addition to talking about it with each other, Dr. A has said we need to find out how our family members feel before taking any action. I lie on the couch listening to David on the phone, explaining. When he gets off, he tells me everyone is in agreement it's for the best. He says they sounded relieved that a decision has been made. David's mother had to make a similar choice for her own mother a few years before. Awful as it is, we are in intellectual agreement.

My family, I know, will also be in intellectual agreement, but still I hesitate to tell them. My mother especially. I hesitate even though I know she was there for all those family dinner table conversations in the 1970s when Karen Ann Quinlan was lying in her coma. All through my grammar and high school years, Quinlan appeared in the paper, her sober smile and smooth brown hair parted in the middle, Quinlan held up as a reason not to get carried away at parties. Thanks to this girl whose parents fought for the right to remove her from a ventilator, I have been able to make this choice for Silvan. Thanks to her, I know that my mother also does not believe in pushing life beyond reason. My mother has even given me a copy of her own living will and granted me power of attorney and had me store these documents in case I need them in a similar situation for her someday. Still, I hesitate because I dread her suffering. “Pretend that you are Christian children,” my mother used to say in despair at our unwillingness to sacrifice, to suffer for our siblings. Her refrain was more confusing than my father's line about nothing being fair in life – for we
were
Christian children; no matter how much we sinned, we had been
baptized
. But I know that somehow she equates suffering with love, and through her own suffering she hopes to carry ours.

In fact, her suffering for Silvan began before he was even born, when he was barely visible as a swelling of my belly. There we were on her deck having lunch – egg salad sandwiches and cucumber salad – and she was arguing with David about the baby. Though she had loved our wedding ceremony, though she'd found so many things that the renewal rabbi said reminiscent of Christianity, she was shocked that our baby would not be baptized; she even had a baptismal gown ready. Why did David's Jewish background “trump” my Catholic? When David pointed out that it was possible to be a non-practicing Jewish atheist but not a Catholic one, that baptism is religious, not cultural, she said, “But what if the baby
dies
and ends up in limbo?”

“Maureen,” David asked, “why would the baby die?”

“Babies
do
still die, you know,” she said

“But the chances of that happening…”

“And what about David,” I broke in. “Do you think David will go to hell?

“Oh, no,” my mother said, shocked, “because David's such a sweetheart.”

I want to call and remind her of this. I want to say that Silvan is a sweetheart. That he will go to heaven whether he is baptized or not. I remember how I used to add, as a child, the addendum to every prayer “… or whatever You think is best.” In this way, I'd tried to preserve my faith from the shock of not always getting what I wanted. Does she not know such tricks? She must be wondering how God can do this to us after all we have lost as a family. She must be hoping that through her own suffering she will be able to lessen my own. “It's not fair,” I say out loud. It feels so good to revert that I say it again, shouting into the sofa cushions, “It's not fair, it's not fair, it's not fair.”

THE NEXT DAY FINDS US ALL TOGETHER IN THE HALLWAY, my mother, my brother Kim, David, and me. It seems as if my sister Katya must be there as well, but she is still far away in Brazil. Only five days have passed since Silvan's birth, but it feels much longer. So then it is the four of us in a knot in the hall. I need to tell them. It's a peculiar position, and yet not as uncommon in the modern era as one might think. Medicine, which used to be the practice of keeping people alive long enough for nature to heal them, became in the twentieth century a success story. Medicine can now cure people. And in the twenty-first century, medicine has progressed to a point that most people in the United States no longer die of a disease. Instead, most people die of a
choice
to stop treating whatever diseases they have. Difficult as it is to choose death, every day people have to choose – for themselves, for parents, spouses, siblings, and even for children.

So we stand there in the way of other parents going to scrub their hands free of germs, in the way of nurses and doctors, in the way of gurneys with babies on them being pushed from one room to another, feeling wrong. For though people are making this choice every day, hope is still what we expect from medicine, and choosing death seems a failure. So we stand awkwardly, trying to begin. Just then the social worker appears at my side. Ever since we met for the first time in the Bad News Room, she has seemed strangely ineffective, hesitant, like a passing stranger sucked unwillingly into someone else's drama
on her day off. “Couple treats each other tenderly,” she has written in her notes, so we know she's watching us, making sure we're equipped to deal, but we're unsure how equipped she is herself. “Is there anything I can do to help?” she says now, looking scared because when we decline her help, as we always do, she will be at a loss.

But this time there's something concrete she can do. We need somewhere to talk. Without her. Perhaps in the privacy of her office. She hesitates, then decides she can do this. We file in, settle in a circle. She leaves, closing the door behind her. Alone together, I tell them, “We have decided to remove Silvan from all life support: oxygen, food, liquid.” Everyone looks grim, gray, shocked, as if we ourselves are the ones receiving the death sentence.

David tries to explain the diagnosis and prognosis. Even if Silvan survives his coma, he will be damaged beyond what they've ever seen, bedridden day and night, unable to control his limbs, his saliva, his mind. He might grow to look as if he has an inner life in the way he writhes and moans, but the brain scans suggest he won't actually have a life beyond his brain stem. I explain that, if we kept him alive now in the misplaced hope that somehow he might regain more of his brain function, we'd have to cross this bridge over and over each time his body tried to die. Kim is nodding and fighting tears. He will tell me later how the shock of this loss seemed to enter him and join to all his other losses and begin to shake him to pieces.

But my mother doesn't seem really to have heard us yet.

In addition to the distant look in her eyes, my mother is wearing a windbreaker so worn, so scudded with white, so threadbare and diaphanous, that its original color is a mystery. In clothing such as this, she was mistaken once at her church for a homeless woman instead of a volunteer come to help the homeless. She still dresses well to teach, but she is slowly retiring, and every few months it seems, she threatens to leave us all for the nunnery where she can do “more good” praying
for the world than she can by living an ordinary life amongst us. How she suffers on behalf of others. How generous and not materialistic. How strong she has always been, raising four children, foster parenting, teaching full time, nursing the ill, grieving the dead, not at all afraid of death for herself; and how weak as well for not being able to bear the pain of others – as if it is her job to bear it for us. What is she thinking now with her eyes on the middle distance? Is she praying for some sort of miracle? What miracle would that be?

 

YEARS LATER, MY mother will explain. “No one was helpful to me. Everyone had a story for me, but they were all stories of hope,” and she will give me a few examples from letters sent by friends: “He was not expected to live, but now he's a strapping young man going off to Oxford…” or “Caretakers come to learn something from such damaged children and feel that they are here for a reason…” Years later, she will say she still sometimes wonders if she could've prayed hard enough for a miracle.

My mother is at a loss. With no one to talk to her about accepting the death that she has been worrying about since before Silvan was born, she doesn't know how to talk to me about it. I know she will accept my choice. My mother, for all her suffering, is entirely supportive. It is not that she is meek or overindulgent. She certainly speaks her mind. It is only that she knows where the line is between loving and controlling her children. Perhaps she only wants to make sure I am solid in my choice. Perhaps she wants to make sure David and I have considered more than one opinion, just as she has, allowing herself to be buffeted by opinions, trusting that only out of confusion can a solid choice come. As her eyes return to the room, she begins to pepper us with questions.