“Oh, no,” I say, “If there’s a heaven, all souls go.” I don’t know if I believe in heaven anymore, let alone souls; and as I say it, I realize I have not even prayed for Silvan yet. What happened to my need for prayer? When I was young, I used to pray for everything. When Mark was ill, I prayed. When my father was ill, I prayed. But after that? After all those prayers went unanswered? I am here with Silvan, standing over his bed, simply trying to accept that he too will die, and that life will go on without him.
“So what did you tell Father B?”
“I told him I’m worried about my mother.”
David nods. “And what did Father B say?”
“He said he can tell my mother what he tells lots of grandparents in this situation. She can baptize Silvan herself, just with water, or even by desire alone, that she doesn’t even have to tell us.”
I feel such relief, but David is horrified. “Silvan’s Jewish.”
“But if you don’t even believe in baptism,” I say, “who cares? It’s just a little water.” I can even picture the water, in a little plastic bottle from the trip to Lourdes when I was young, saved in a back corner of the kitchen cabinet all these years. Though nothing in me needs Silvan baptized, it’s easy for me to imagine how much someone might still need to believe. This is my mother’s way of caring.
“But why do it if it’s just water? What does it matter?” he asks.
“It matters to her.”
“But it’s so illogical, it’s so obviously made up,” David says.
“But if it’s made up,” I say, “why do you even care? ”
SHORTLY AFTER THIS conversation, Sister C shows up at Silvan’s bedside. Now it’s David who has gone home, to return the messages building up on our answering machine; and I am alone with Silvan. He’s wearing only a diaper under his heat lamp, and I admire the frog-like spread of his chubby legs, the crow’s-foot of wrinkles raying out from his armpit, the little starfish hand that I hold in mine. Though Sister C is the “non-denominational” chaplain for the hospital and wears lay clothes, she is obviously a Catholic nun. Exhausted perhaps from all these conversations, from this struggle between my mother and my husband about something that matters so little to me, my first response to her is to echo David. “My son is Jewish.” I’m startled by my own vehemence. What does this even mean for a comatose newborn? Perhaps I’m afraid that she will try to interfere with our decision; that she will appeal to the side of me that once yearned for sainthood; remind me of my namesake Saint Monica who spent her life praying for the soul of her sinful son Augustine; make me feel bad about my soul and the soul of my own son. Or perhaps I’m just being loyal to my husband. I keep hold of Silvan’s hand.
Sister C smiles. “So he’s Jewish. I’m still wondering if there’s anything I can do for you or for him.”
With her question, I understand why she’s here. She’s here to relieve suffering. And so I beg her, gesturing with my free hand, “Take care of my mother. She’s Catholic like you. She’s out in the hall saying her rosary. She wants to baptize him.”
Already I am turning away with relief.
“Is that all?” Sister C asks. “Nothing for you?”
But I have returned to Silvan, to his little body, here and now.
Distillation
FOR NOW, SILVAN LIES ASLEEP AS USUAL, THREADED with tubes and wires and the medical tape that holds it all in place. He is five days old, and nothing has changed. We have a plan, but Dr. A still wants us to wait, as if we ourselves might change. Silvan has not opened his eyes since his first night of life; a fat tube in the mouth helps him breathe; thin tubes give him fluids and medicine. To help us hold him, nurses transfer him with all his equipment onto a pillow, and then pass the pillow to us. For all of this, Silvan seems sweetly asleep. He has the flushed cheeks and lips of a baby who has just finished nursing. He keeps his two little fists curled up, one on either side of his face, the way I do sometimes in bed because I find it comforting. I watch him lying calmly on a pillow in my brother Kim’s lap.
Now at last when we have made our decision, there is time just to mother Silvan.
At the next bed, a mother and grandmother of a baby who is ready to go home sit silent as always, taking turns feeding and burping their baby. They seem self-conscious about speaking to him in the silly way that people usually speak to babies. The only words they speak are to each other. Perhaps they will be less self-conscious once they get him home alone but I doubt it. Although they were told weeks before that he was ready, the mother is afraid. Afraid that he will choke on his food at home and die. Perhaps he is brain damaged too. I smile at them and turn to my baby who will never go home.
With Silvan on Kim’s lap, I find I can reach his little face through his equipment more easily than I can when he’s on my own. I bend to kiss his forehead, then his nose, then the space by his ear that is free of medical tape. And then I cannot stop. I kiss the front of his neck below the breathing tube, those warm wrinkles, and the side of his neck, so smooth, so smooth, and his shoulder, and the creases at the edge of his armpit and across his naked sternum and down towards his belly button, all the while making smacking noises, eating him up.
When I raise my head I am renewed as if, after hours on the trail, I have found water. But Kim is inscrutable. A distant smile on his face. I think of the kisses I gave him, kisses just like these, when he was a baby newly arrived from Korea. I think of his birth mother, too, wondering if she kissed him like this, the newborn she was about to let go. If so, I feel linked to her pain.
The mother and grandmother at the next crib stare in surprise.
“That was quite a kiss,” the grandmother says.
“Well, once I started I couldn’t stop,” I say.
My time is limited. This is a mother’s love distilled.
“SOME PARENTS TAKE weeks and weeks to make this decision,” Nurse Kerry says in praise, standing with us in the door to his little room. Nothing has changed. Or rather, we have stopped the flow of phenobarbital and Silvan has carried on. We’d thought he might die of a seizure; now we are relieved that he has not.
Nurse Kerry is a new nurse, very young, and this is her first terminal baby; she is sweetly emotional, her fresh young skin flushes pink and her big eyes gleam with tears as she talks. Dr. A has secured this tiny private room for us so that we don’t have to suffer the extremity of our grief in the middle of the nursery floor. “And don’t forget,” she says, “there’s always morphine to make this easier.”
For a moment, I think she is speaking in code. I think: At last, here is someone who will help him die more easily. For I am still in shock that not feeding him is an option. I’m hoping we don’t have to go that far. I’m hoping nature will be merciful.
Whatever she reads on my face, she blushes, says, “I mean, to make him comfortable.”
EVEN IN HIS coma, Silvan seems uncomfortable. He has begun tugging with a hand at his breathing tube. Some babies have been known to “extubate” themselves this way. Seeing that little hand tug, I’m frantic and aching to give him this simple relief, even if it means he will die, right then and there, in my lap.
I arrive in the morning prepared. Silvan is six days old.
But it turns out that sometime in the night, our private room has been given away to a contagious baby. Now they’re cleaning the room to give back to Silvan before they extubate him. I’m frantic to be with him, to relieve him, to know if he will die or live. But we’re stuck outside in the hallway. My mother is pacing with her rosary and Sister C when my nerves are at their frazzled worst. If Silvan has been baptized by now, I don’t ask. Instead, I swear in front of Sister C – “They’re taking so goddamned long to clean the room,” I say, before clapping my hand over my mouth – but Sister C is, of course, unfazed by my swearing and eager to help. She rushes off to see if she can speed the process.
At last the room is ready. I sit in the rocking chair. Someone transfers Silvan to my lap. Gently, gently, Nurse Kerry
peels away the tape that’s been holding the tube in place for almost a week. Dr. A begins to pull the long tube out. It’s unbearably long. I cannot look. But at last, he is free and there he is, my little Silvan. Just like that, he closes his mouth. He lifts his little hands up towards his face. One hand settles under his chin, the other cups his tape-reddened cheek. He breathes.
He breathes and seems to smile.
NOW EVERYONE POURS in to see him. In our private room, there seems no limit to the number of visitors; we are bending all the rules. We photograph him free of his breathing tube, we photograph him in the arms of grandparents, uncles, aunts, friends.
Free of the tube, he is also free to lie on his stomach. Noticing his backside is red, I try to put him down on his stomach for the night. When a nurse comes in and says she isn’t comfortable with that, I ask, “Why not? Are you afraid he’ll stop breathing?” but I return him to his back.
Desperate for him to stop breathing, I am in love with every breath he takes.
NINE DAYS FROM birth we say that we are ready. The anticipation is awful. That morning, I can barely leave the house. In the same way that I was both inside and outside myself when I heard of his brain damage, my grief is both overwhelming and melodramatic. I’m on all fours in the living room heaving, gasping for breath at the thought of becoming a mother who is not feeding her child. David holds me from behind, trying to get me to stop; then I am no longer crying from the depths, I’m coming back up to the surface where I am sure of what we have to do.
Back at the hospital, I’m stunned by how much more exquisite he is in the flesh than in any image I can hold in my mind. His skin calls to me to stroke it. His head must be sniffed. When he pees, I marvel. I can’t help being proud. Of his long bones. Of his long eyelashes. We say that we are ready.
Hours later, I notice a bag of fluid still hanging from his IV pole.
I call a nurse in and ask, “ Why is he still getting food?”
She looks upset. She says, “I’m just letting that last bag run out.”
“Okay,” I say to her. Okay, I say to myself.
Let him die easily, I think at each step; and then again, not yet.
We Climb
WHATEVER LUCIDITY, WHATEVER STRENGTH I HAVE IS partly biological. My body is healing apace: my stitches are healing, my womb shrinking, my milk drying up. Not only that, crisis releases hormones that make our brains and bodies work faster, more efficiently, our senses sharpen, we become less sensitive to pain, our memories work better. As if this is normal, as if we have lived a lifetime together like this – David, Silvan, and me – we adjust to crisis.
Sleep, spend day at hospital, sleep.
Each day stretches long as a year.
A lifetime is packed into a week.
One night, I notice the chill of almost-summer fog coming in from the ocean, on another I register that the month is now May, but none of this means time is really passing. Not the way it used to. Things are happening in the world, bad things, other children suffering in the headlines without medical care in war-torn countries while my son dies surrounded by equipment; I know this is unfair, but there is hardly room for other people yet. I’m still waiting for the end of his first day. But with his healthy heart and lungs, his great reserves of fat, no one knows how long he will go on. If anything feels miraculous to us, it is this ability to go on. Sometimes I can’t believe he’s not still inside of me. “I have a son,” I record in my diary as if to make it true.
In addition to starting a diary, I let myself sleep in. I wake from tortured dreams. No longer pregnant, I dream about having been pregnant and giving birth to a baby who’s not okay. I wake from the dream relieved, until I realize it’s true. I fall asleep and have another dream. Silvan is saying, “Linda, Linda,” which is the name of his paternal grandmother who has yet to meet him. I’m desperate to find the neurologist to see if this changes the prognosis. Is it too late to reverse the effects of not feeding him?
“I have a son who is dying,” I write in my diary. “I have a son whom I have chosen to let die.” My mind is trying to understand, my mind is searching for patterns.
During the day, I feel ready. I say it out loud: “I’m ready. I love you. You can go.” But at night, my tune changes. “Don’t go,” I say, leaning over his crib, “until I’m back in the morning” as if he will understand my words and do all he can to make this easy for me.
If I have faith, if I have hope, it is not that a god will overhear and grant me this wish. It is rather that between us we have some power to do this right, to pay close enough attention that we can let go when we both are ready. I am thinking of my friend Maggy Brown and her mother. I’m thinking of the tender certainty of youth. This was the first Sunday in college, the first delicious day of deciding not to go to church, and Maggy had invited me to spend the day studying with her. Though Maggy seemed so much wilder than me, with her crazy black hair, her boasts of debauchery, she seemed familiar too. She’d come from a big Catholic family in Wisconsin; she liked to drink wine. I accepted her invitation, and we set out from our dorm to find the perfect spot. We found it at the edge of campus, a slope of lush, forgotten grass overflowing into a nature preserve full of spindly, leaning trees. We lay in the dappled shade with our books spread before us and pretended to read about the death of Achilles. Overhead, white clouds swelled. All around us, bees hummed, alighting on the clover flowers, on our books, on our hands and hair as we blossomed.
“My mother was dying of breast cancer my whole childhood,” Maggy explained to me then, “that’s why I was sent away to a boarding school for wild youth.” So here was someone who’d actually survived my greatest fear, and I listened intently. “She sent for me at school so she could say goodbye, and then she held out until Easter.”
How moved I was. Though Maggy said she no longer believed in God herself, she believed her mother believed and that, because of this faith, she was able to die when everyone was ready. This was a faith I could embrace, a belief in the power of belief. I told her that I too had lost my faith but I wanted to believe in something greater than ourselves that linked us.
I found a four-leaf clover then; Maggy found a four-leaf clover; there were lots of four-leaved clovers suddenly, and we made wishes on them.
We were young and we were going to survive the dying all around us.
“You’re the first person,” Maggy said, “I’ve ever met who can talk about death. You can deal.”
I shrugged, hiding my pleasure.
FOR MOST OF the morning as I resist rushing straight back to the hospital, we are occupied by the ringing of the phone. Family calls every morning in order, my mother, David’s father, David’s sister. Later in the day, his mother, his stepmother, sometimes my brother. In between, we get calls from the hospital, from outside specialists, from friends. People call from all over the world – how fortunate we feel – Washington D.C., Oregon, even Israel. One friend calls every morning at ten a.m. from New Mexico. The calls are brief but crucial. She lets me do the talking. Her husband has told her he no longer loves her after twenty-one years together and is going to leave her and their newborn baby, but she doesn’t tell me this. For now, she considers the bigger crisis to be mine. She says she just wants to make sure that I get out of bed.
For my doula, I don’t get out of bed. Her messages sound angry and impatient. Studies show the consistent, calm presence of another woman can help ease labor, which is why we’d hired a doula, but now she wants to know what the hospital did wrong and when we will have an answer. She doesn’t sound like she should be in the business of birthing children; she sounds too impatient, too shocked that something has gone wrong. Even while I was in labor, I realize, she sounded wrong, more concerned about her own comfort than mine, complaining about her lack of sleep, her hunger. I try not to think about her and us together in that distant time.
On the other hand, for my obstetrician, I run to the phone. Because she was not the one to deliver him, because he
was born on the one day she’d warned me she could not come, I can still be loyal to her. That first week, when she comes to the hospital to meet Silvan, I like how she says, “Oh my,” taking Silvan from my arms, “everyone told me how beautiful he was, and I thought, yeah, yeah, I’ve seen newborns before …” I like the way she has to pause to control her voice, “but he really is exquisite, isn’t he?” I like her present too – she’s the only person to have brought a present – an angel bear with wings and halo that David hangs above Silvan’s crib. I like the honesty of her present.
While she is visiting, she checks my leg. Though I have been trying to take care of myself, to eat and sleep, I sit hunched over Silvan for so long that my feet and legs are swollen and now I have a cramp so severe in my calf that it is hard to walk. Worried that maybe it was a blood clot that damaged Silvan, and that I might be prone to them myself, she sends me to a specialist when the cramp won’t go away.
On the day I go, the waiting room is full of old people who look as if they’ve been waiting there for years, but I am rushed right in. This new doctor hooks me up to a machine. He shows me on a monitor how my valves open and shut to let blood flow through my leg like sand through an hourglass. He praises my venous valves. “There’s nothing wrong with your leg,” he says. “Let me get you back to your baby.” I am grateful but also strangely bitter to hear that my body goes on healthily as if indifferent to whatever injured Silvan.
AFTER THE SCARE with my leg, David insists that we not only eat and sleep well, but that we spend more time away from the hospital moving our bodies while other people stay behind to hold Silvan. One day, we go down to the park at the Berkeley marina. It’s an unusual, still, slightly-muggy afternoon. No one is there. We go a different route than usual, away from the water and into a hollow between hills. I am still walking slowly, still swollen and loose from giving birth, so we don’t plan to go far. Wildflowers riot on the hillsides. We go to see up close. There is an old man there, with wild hair and billowing clothes and four dogs roaming around him. He keeps leering at me. David wants to use the Porta-Potty but is nervous leaving me with the man. We climb up to the wildflowers and then David makes a dash to the Porta-Potty as the man calls his dogs to leave. As the man wanders off, he looks over his shoulder at me with that strange smile.
Holding Silvan Page 6