It is awful, that my mother knew, that I knew, that still we failed to stop him. The strain was tremendous. I didn’t want him to die. His suffering was temporary, it was cyclical. I wanted him to recover enough to see that life was worth living. But I felt trapped in the house with him, pressed up against his misery, or against his need for me to scale heights I could not achieve, and I writhed away from him. I spent whole evenings with him, trying to make him feel loved, but I also just wanted his need for me to stop so that, when he finally killed himself, it was not so much his escape from his suffering that pained me, but my own failure to ease that suffering in other ways.
On his last night, he asked if I was going to eat dinner with the rest of the family and I said, “No.” I needed a break. No. My final word to him. The next morning, I found the garage door open, cold air pouring into the house, and I slammed it closed, not knowing. Did he leave it open on purpose? Was he hoping someone would follow him down into the lower basement and save him right up until that last second? How is it possible that it was only then, after he hanged himself, that I noticed the bathroom ceiling had been freed of mildew, that he had bleached away every last powdery flower?
NOW I NEED to learn from that final, ugly word “no” to end Silvan’s story better. A nurse tells me that most babies die between four and six in the morning. Each morning, I wake up terrified. For weeks, we have considered spending nights on chairs by his bed, but with his heart still chugging along, unbearably strong, we have gone home to sleep, saving our strength. But it gets harder and harder to stay away. Not only am I afraid he’ll die while I’m gone, but I suspect the only reason he needs the morphine the nurses have begun to give him is because we aren’t there. Even though a nurse usually comes and offers to hold him when we leave for the night, I suspect he knows the difference. Always within an hour, the nurse reports that she has had to give him a dose.
I want to be his morphine, his solace to the end.
Still we hesitate.
It doesn’t help that each time we bring up hospice, Dr. Z seems cagey. “It’s very hard to get a slot with hospice,” he says, “sometimes you have to wait weeks and by then…” On a Friday, he tells us we’ll have to wait until Monday even to make a call. There is always a reason why we shouldn’t even bother trying.
But if we don’t have hospice to vouch for us, his death could get complicated. Without institutional support, we could be accused of murder. If he dies at home without hospice, 911 will have to sign the death certificate, and who knows how the paramedics will react. What will they think of us as parents? Anyone seeing Silvan for the first time would be horrified beyond belief. Though he is still beautiful to us, no one we know has ever seen a starving newborn quite like this. Not even in the news do babies starve like this, with enough medical care that their dying goes on and on.
At last we reach outside the hospital for help. We contact the nurse at the hospital where we’d considered transferring Silvan prior to the ethics committee meeting. She has a private line to the hospice organization that works with dying children. We call her on a Monday afternoon, she arranges to have a hospice nurse come and meet us at Silvan’s bedside that evening, and we arrange with the hospice nurse to have Silvan discharged the next morning. In Silvan’s chart, Dr. Z. takes note of this. He says we have “actually” contacted hospice without his help.
ON TUESDAY MORNING, I wake shaking. What if he has already died? What if he dies while we are on our way? What if I never get to bring him home? All the way to the hospital, I shake. In the elevator, I shake. As we sign in at the NICU and start to scrub our hands and arms, I’m still shaking. But at last we’re in his room. And there he is, calmly sleeping in my mother’s arms as he does each morning on her “shift.”
And yet, I do not stop shaking.
Now I shake out of a different fear. Who am I to be responsible for this fragile being outside my womb? What if I hold him wrong? What if I drop him in the bath? What if he dies? I’m suddenly afraid to take him away from the safety of all this, his monitors, his nurses, all these people who know how to keep babies alive.
But the decision has been made: a nurse we’ve never met before is in charge of discharge. Efficiently, she shows us the bag of stuff the night nurse has prepared: diapers, saline solution and lube for his eyes, a thermometer, a stethoscope, his music box, and all his clothes. The night nurse has even changed him into a new undershirt beneath which I find no wires at all. All the monitoring is done. He is entirely free at last!
My shaking shifts again. Now I shake with eagerness to get away from all this, this artificial light and air, the beeping and whirring of machines, the constant press of strangers, to get away with him.
But, though he is free and mine, there is still more to do. Nurses come to say goodbye to him, all but Kerry who already said goodbye at the end of her shift the day before. She has danced a final dance with him, waltzing round the room to the music on his music box, both of them made ghastly and beautiful by impending death. He was her first terminal baby, and I have found her in tears more than once, and how I love her for it, that he is special to her. These other nurses are brave and beautiful, too. They spend as much time praising us and our decision as they do stroking Silvan’s cheek and calling him “little man.” We get his medications and instructions on how to administer them. He has morphine for pain, and lorazepam for anxiety, and phenobarbital for seizures, all given in teeny doses as needed, the only liquid he gets. We make sure we have our DNR form prominent so that he won’t be resuscitated, whisked away, taken over by the state if we call 911 in a panic.
Finally, Dr. Z arrives.
“There is,” he begins, “one little problem that has to be worked out before you leave.”
Here it comes. He’s going to throw up some roadblock and we will be trapped here forever, Silvan will die in this room.
But all he says is that we need to have a pediatrician lined up.
“Oh, yes, we have lined up…” we say and mention Dr. Z’s boss.
He looks surprised. Once again we have worked behind his back.
Diplomatic David says, “It makes sense since he’ll be on service after you.”
Now we have one little problem for him. For weeks we’ve been pressing him on the question of organ donation. He thinks a newborn can donate corneas and heart valves. At least, before we leave, he can help us figure this one issue out.
He blinks his eyes, licks his lips. He takes up his soothing, hallmark tone of voice and says, “Your concern about organ donation is noble, but what you really need to be thinking about right now is yourselves. You need to be focusing on yourselves and your son.” Behind him, a resident and a nurse nod somberly at the doctor’s wisdom.
I feel slapped in the face. Is he suggesting I’m not focusing on my son? And what does he mean, I need to focus on myself? The gulf between us deepens. I feel like he’s telling me the only way to survive this ordeal is to insulate myself from the world, whereas I feel that the only way I have been able to survive this ordeal – the only way I’ve been able to make this choice – is by seeing myself as part of a community. Because we’re focused on more than ourselves, we can love Silvan enough to let him go.
We will have to do the footwork ourselves. When we get home, we’ll call the organ donation number, and it’ll be confirmed: corneas and heart valves. But then the woman on the other end of the line will ask his weight. Four pounds and falling. He’ll be disqualified due to prematurity. But he is full-term, David will argue. Of course, this makes no sense to the woman. There is no space on any of her forms for term babies starved to death.
But I say nothing now and Dr. Z is safe in his element, floating in a river of clichés. “We do the best we can for our patients,” he says for the millionth time, and, “You’ll never regret the time you spend with your son.”
Then he shakes my hand.
He shakes David’s hand.
And then he leans down to where my mother sits
holding Silvan. Already our comfortable leather glider has been given to another mother and my mother sits in a hard, wooden rocking chair. He leans down to where Silvan lies, eyes open and hands at his cheeks, and he shakes my mother’s hand.
Then he leaves the room.
Dr. Z leaves without saying goodbye to Silvan!
I am furiously insulted. I am heartbroken. I’m not his patient. Silvan is! In my anger, I remember my father’s doctor, who wouldn’t tell my father if he was close to death. Instead, my father’s doctor took the family out into the corridor a few days after Christmas and at our insistence told us, “soon he’ll stop eating.” He left us standing there, pondering this, wondering if it was necessary for my father to keep eating to stay alive, wondering how long that massive Christmas meal of duck à l’orange and plum pudding that we’d brought to his room, how long that champagne would last him, while my father lay in his bed yelling, “Tell that little schmuck to come in here and face me like a man.”
WE STILL HAVE a good hour of hanging around, waiting for paperwork to be sorted, medication to arrive, but at last we’re in the hallway at our locker for the last time, retrieving the boom box, the picnic blanket, and here comes Dr. Z, going by on rounds with his residents around him like a hen with her skittish chicks, and I think perhaps he will redeem himself in the final hour. Indeed, he does not pass us up. But then he starts to talk again, the same clichés. I keep looking down at Silvan to give him a clue that he should pay attention to his patient more than to us, but he doesn’t catch on. He’s all big smiles and nods of his head, clearly relieved, almost ecstatic to be rid of us, and then he’s on his way again, to babies whose lives he can save.
But one resident lingers. Here it is: is she still “here” for our family as she had told us on the first day of this ordeal?
“I just want you to know,” she says, twisting her fingers in the beads of the necklace that holds her hospital I.D., “that I’ve learned a tremendous amount from you, both professionally and personally, and I will never forget it.”
Then she leans towards Silvan. Her eyes fill with tears. With the backs of two fingers, she strokes his cheek, over and over. “’Bye, little Silvan; goodbye, little man.” Then, with a nod, she is off, following the others.
First Night
FIRST THING I DO AT HOME IS PUT SILVAN DOWN IN A swing seat. No need to buckle him in, though, since my boy never moves. It is the 27th of May; he is exactly one month old. On the way home from the hospital, I held him in my arms in the front seat while David drove. Damned if I was going to make him suffer a car seat. I kept up a one-sided conversation in the car, remarking on every change to Silvan’s face. He seemed to be listening to this car ride. Whenever a particularly loud, deep engine passed us, his body stiffened slightly and he’d move his eyes side to side as if excited or alarmed.
“Like all little boys, Silvan is interested in cars,” I told David.
At home, after putting him down in his little jungle swing seat, I move a stack of papers. Again, he moves his eyes from side to side, listening. For the next few days, each time I fiddle with paper, he wakes up and listens. But when I bring him to hear the kettle whistle, there is no response; and, even worse, there is no response when David plays him “Twinkle, Twinkle Little Star” on the saxophone. After a few days, he stops responding even to the paper crinkling. But he does still wake up when David drops something on the kitchen floor. David’s friend Michael is over once when Silvan is awakened by lunchtime preparations. Michael is in residency, training to be an obstetrician, and he kneels beside Silvan’s rocking chair and moves his finger from side to side in front of Silvan’s eyes. Though we have told him the diagnosis and prognosis, Michael wants to test this for himself.
“He can see,” he says. “Look, he’s tracking my finger.”
But no, we say. That’s just what he does, moves his eyes side to side. Now do something different, we say, stay in one place awhile.
Sure enough, Silvan’s eyes continue moving side to side.
The thing is, though we can pass along to others a diagnosis and prognosis in which we’re by now well-schooled, we ourselves are still tempted to search for signs of health. Maybe he no longer reacts to paper crinkling not because he’s getting weaker, but because he’s figured it out, the sound no longer interests him. Maybe he doesn’t want to play Michael’s finger game.
PUTTING SILVAN DOWN in that rocking swing is a sweet relief because it’s normal. Until now, whenever I was with Silvan, I was holding him. While we were in the hospital together, he was a patient I tended but now he can be near me while I do normal, parent-as-person things: cook dinner, make a bed. We are home at last with our one-month-old.
The first night, we make the bed carefully. Margie has lent us her solution to sleeping with a baby without fear of crushing him. It is an odd, inflatable wedge we place between our two pillows so his head is raised higher than our pillows but his body can be partially tucked beneath our blankets. He’s so cold all the time, he needs the warmth of our blankets. Afraid that he will be dead before I wake again, I place my head directly next to his and put his little hand in mine.
“I’m right here,” I tell him in the dark. Without the monitor to plug him into, I am his new, human monitor.
Two hours later, at the time he always woke me in utero, at the time he always woke in the hospital, he wakes me with his new, little cry. It is, as David calls it, his creaky door cry. He makes this noise at most two or three times a day.
“I’m right here,” I tell him. How much closer can I get? Yet, when I do not respond with more than that, he actually cries a sweet, dove cry that I have never heard before.
This wakes David who tries to soothe Silvan, too. We sing, touch him, rock him in his little bed. Nothing works. I will have to get out of bed with him and give him morphine just like the nurses did. And yet, in the living room, in my arms, he’s instantly calm. It’s me he wants, it seems, my full attention. Or perhaps I’m projecting. I want to feel his need. But not wanting to risk him crying as soon as I get back in bed, I lie on the sofa. I remove the back cushions and curl with him between me and the sofa back. For a moment, he paws my chest like a kitten, pushing me from him, then settles. I place his little, bumpy skull in the palm of my hand.
When David wakes us at dawn, Silvan’s little head is still cupped in my palm.
MARGIE’S HUSBAND GAVIN tries to think of something to occupy us now that we’re home all the time with our child, but I tell him I’m as busy as any parent with a newborn just getting things done. Of course, things for Silvan are not ordinary. There’s his medicine – for after that first night’s triumph, I find my arms don’t always stop his cry. With the hospice nurse, we work out a morphine schedule to minimize his suffering. He can barely choke down his dose – I hear it chugging through him as if he’s hollow inside – and I call his doctor and beg for something more concentrated, so a drop will be enough. We also give him phenobarbital after I spot little hand seizures. The phenobarbital seems too much for him too, both in size and effect; he lies there in a glazed daze. I call his doctor again to describe the seizures I am trying to treat, I mention how the seizures seem to make him anxious more than pain him. Instinctively, I ask if I could treat him with the anti-anxiety medication lorazepam instead, and the doctor agrees. When the lorazepam also stops the seizures, I feel triumphant as a mother, as if I’ve guessed just what food my picky baby will eat. In addition to this, there are things like his diaper to check. The first week home there’s still a little pee, like saffron, clinging to his penis. And there are baths to give. There’s Vaseline to apply to his drying lips, no longer plump and magenta like his father’s but pale pink and thin, but still exquisitely shaped, and the Vaseline makes them look alive again, though the reason we apply it is for his comfort. Same with lube for his eyes – he blinks so infrequently they get dry. We apply lube so earnestly that one day we realize the little cracks appearing on his eyeballs are actually fluff and a
tiny strand of hair that have stuck in the lube, so we have to flush his eyes with saline. We flush them so well the first time that the space behind his eyeballs fills with saline; we have to squeeze it out like tears.
But these things do not perturb him. In fact, he seems particularly calm as David ministers to him. Because it is David who does the nursing. Caring for his son in this way is perfect for David. As he carefully drops the saline into Silvan’s eyes, everything in the room becomes still and calm. Father and son. I watch with amazement that tenderness, and understand Silvan’s calmness in those hands.
Holding Silvan Page 11
