Once, my belly big with Silvan a few months back, I’d complained to David that he wasn’t verbally loving enough, and he’d said he preferred to show his love in action. Weeks from now, he’ll show me what he means again. I will step on something small that lodges in my foot. Night after night, David will hold my foot in his steady, warm hands and search for this tiny, invisible source of my pain.
TWO DAYS AFTER we bring Silvan home, I call the NICU to let Kerry know how Silvan is doing at home. She asked me to do this. Everyone expects he will die soon, but still Kerry wants to know how he’s doing while he remains alive. With disappointment, I realize as I dial that I have missed the shift of the husky-voiced Shelley by a few minutes. I’m yearning for her soothing tone. The afternoon receptionist is quite the opposite, harried, unfriendly.
“Kerry?” she says in a cold voice. “There’s no one here by that name.”
“I’m sorry,” I say, “I mean Nurse Kerry. Nurse Kerry Campbell.” I am strangely near tears, as unsure of my place in her world as a runaway child.
“There’s no one here by that name,” she repeats.
“Yes, there is.” I try another tack. “This is Baby Boy Wesolowska’s mother.”
“That baby was sent home,” she says.
“I know, I’m his mother. He’s home with me,” I say. “But Kerry has been his nurse for the last month.”
“On this shift?”
“Yes.”
“I’ve been here twenty-five years and we don’t have a nurse by that name.”
When I insist, she says she’ll go ask the charge nurse.
A few minutes later, she returns, sounding irritated. “She’s a new nurse. I’ll transfer you.” I almost want her to continue insisting there’s no Kerry. For if there is no Kerry, perhaps the world Kerry belongs to no longer exists. Perhaps it was a world made up by a genie who whisked me there for awhile before returning me to real life. Perhaps the whole thing was a bad dream. Perhaps I am about to wake up.
Circuit Tester
“OH MY GOD, I THINK HE HAS NECROSIS,” DAVID SAYS. We stare in horror. Now that he can’t possibly get any skinnier is Silvan’s skin dying? We run our fingers gently along the odd pattern of depressions on his thigh. The days creep by even more slowly now than in the hospital, immersed as they are in such horrifying detail, the unknown end always receding before us. He is thirty-three days old, then thirty-four. We wait eagerly for the next home visit from the hospice nurse. When she arrives, we place him on the sofa beside her and take off his diaper to show her the necrosis. “Hmmm,” she says, leaning in close and running her own fingers across it. “I’d say this is where the diaper was a little too tight.” She’s not trying to make us feel foolish, but we do.
Another time, he smells funny. The smell seems to come from his mouth but it is strong enough to mask the sweet loam of his head, the powdery perfume of his neck.
Is this the death smell one nurse told us about?
I’m sure it is; and I am heartbroken.
But sniffing again, I find it more medicinal than deathly, and I remember how his tongue had turned blue from morphine in the hospital. No one had seemed particularly concerned. Still, we open his mouth wide to check. My god, not only is his tongue bright blue, but he has stalagmites and stalactites of yellow goo, an accretion of medicine, lifting from his tongue and falling from the roof of his mouth.
Baby. Is it unpleasant for you in there?
We are now on a mission to clean his mouth of goo. There’s nothing in any of our baby books about this. After trying a wet Q-tip and a rubber spoon to no effect, we try some mouthwash sponges we were given at the hospital, little pink lollipops of foam on sticks. I cannot watch as David forces the sponge into Silvan’s mouth.
“Silvan doesn’t like this one bit,” David says.
I’m relieved. If Silvan can still protest what he does not like, then in his usual quietness he must not be suffering.
EACH AFTERNOON WE have a variety of visitors, family, friends, neighbors. We sit in the backyard in the swinging seat I bought when I imagined being a nursing mother this first summer of his life. We pass him around and chat and enjoy the flowers and the sun. It is the end of May, the unruly jasmine on the fence is bursting with sweet smells despite our singular focus on the sweetness of Silvan. He’s been home now for only four days, though each day feels as long as a week.
In that time, the flow of love from others has not stopped. But, with other people around, the horror of Silvan’s dying is more obvious to us. He is yellow as a cheese rind, he looks as fleshless as a skull. His mouth has started hanging open. His eyes are huge and round. They are still beautiful, brown and blue and green, with thick, dark lashes around them, and pupils that respond – how proud we are of those responsive pupils! – but he can longer close them. He is too weak, or his eyelids have shrunk, or he’s forgotten about blinking. Day and night he stares without a blink. He is thirty-four days old, then thirty-five, always staring out.
People hold him still but now there is more sadness, more exhaustion. One day my mother even says he looks pathetic. My mother, who has held him more than anyone, for hours and hours and hours, has said he looks pathetic. I am crushed. How can she call him pathetic when he is doing the most amazing thing, staying alive, day after day? I don’t want people around who think he looks pathetic. I want everyone to adore him as much as I do.
“Day and night?” Claudia asks us to clarify. I’ve just explained about Silvan’s eyes remaining open all the time. Claudia visits now that we are out of hospital, but the difficulties continue. She clutches an open-eyed Silvan to her pregnant belly. “It doesn’t matter, it doesn’t matter,” she repeats in a mysterious chant. She paces our house late one afternoon, going from window to window, as if looking for a place to escape. Perhaps she disagrees with our choice, but she hasn’t said as much. The closest she’s come is saying, “This would be a lot harder if you already had children and knew how much you were going to lose.” It pains me that she doesn’t think I’m suffering as much as she would. It pains me that she has no idea how much I love him. It pains me that she hasn’t yet realized he is my child.
“So if his eyes are always open how can you tell if he’s asleep?” she asks now.
“We know,” David says, “because when he’s awake, his eyes move from side to side.”
“But how can you tell he’s not in pain?” In the same way, Brian had grilled us, wanting to know how we had chosen this method of death over something “more natural” like death by pneumonia as if death by pneumonia were more compassionate, as if we have a rational answer, as if we have proof or comparisons to rely on. As if we’re not suffering through our choice because we feel it is right.
“He makes a noise when he’s uncomfortable,” David says.
“And when he’s not awake, how can you tell he’s still alive?” she goes on.
“Well,” I say, unsure how to answer this. “He breathes …”
“Oh, yes, breathing,” Claudia says, visibly embarrassed. She still clutches Silvan but thoughtlessly, like a football, as if she has forgotten he is no ordinary baby but one who is dying and must be held with that thought in mind. I ask her to give him back. She refuses. For a second, I take pity on her, whatever terror holds her in its grip. I try to let her into my world. I say, “It’s true, sometimes you can’t tell, through all the blankets. That’s why my sister was so happy to discover a special button. We call it the circuit tester button.”
I reach towards Silvan to demonstrate. Sure enough, it works.
David and I laugh. When you touch Silvan’s nose, he blinks; or tries to. How cute he is. How sweet that little blink. How sad that his blink is almost all we have.
Claudia does not laugh. She looks horrified.
Again, I ask her to give Silvan back. We are standing by a window and there’s coldness radiating from it, the fog of early summer blowing in from the ocean. She looks as if she might leap out that window with him.
>
I’m afraid he’s getting cold.
She hesitates.
I insist.
Miracle Baby
PERHAPS HE IS MY MIRACLE BABY, AFTER ALL. PERHAPS he will never die. Thirty-five days old, thirty-six. I’m lying with him on the sofa, both of us under a blanket. It’s evening and everyone has gone home and Silvan’s mouth snaps shut. As if he’s determined to be cutest for us alone. He pouts, and I coo with pleasure.
Some nights I read with him in my arms. Another night we watch a movie. It’s almost normal. I stroke his head over and over until, engrossed in a silly romantic comedy ending in marriage, I forget there’s anything wrong: I have become what I expected, mother and child, and my grief when I realize the deception of this image is explosive.
Later in bed, I lie in the dark trying to figure out if he’s gasping. I have to keep waking David to turn on the light. I panic about the room not being warm enough, insist on turning on the heat, even though it’s already June.
His little hands. Cold and floppy.
The next morning, I wake up sure he’s dead from the feel of that hand. But he is very gently breathing, cupped between my arm and my side, and when I let go of his other hand, the one that has been engulfed in mine all night, it stays warm, warm, warm. Thank god. More time.
IT BECOMES HARDER and harder to turn out the light each night. Thirty-five days old, thirty-six. Time has stopped, time is repeating; but what if he dies before we wake? What will happen to time then? As David goes through his bedtime rituals, I lie beside Silvan and admire him. Although he’s pale as wax and his cheekbones and eye sockets are too prominent, he still has a beautiful profile. He still has the profile of the little boy he should have been. From the side, I can admire the shape of that face, the sloping forehead, the button nose. When David finally gets in bed, we take turns kissing Silvan. Always I have to give the last kiss.
With his first cry later in the night, I’m relieved. I’ve just been wrenched from a dream in which he is ill and dying and my first thought is “Thank god that was a dream.” By then I am fully awake, comforting my son, relieved he’s alive and also horrified to find the dream is true.
THE SKIN ON his forehead is hard and dry as cheap suede by now and I have to be careful with his bones, his joints; there are positions in which he doesn’t like to lie. He’s no longer a malleable bundle. He doesn’t like to go on walks in my arms. When I stroke his back, each vertebra protrudes and it is a relief to reach his buttocks which, along with the soles of his feet, are the only part of him with enough fleshiness still to feel soft as a baby’s feet should. Those soles get me every time, soft and pale with a crease down the middle, those peas for toes.
One morning, I ask David to take a photograph so I can see the sweetness I’m feeling as we lie together in bed. I can feel Silvan’s eyelashes moving on the skin of my neck, the butterfly kisses I have not felt since my father used to give them, telling me to stay still and quiet, to pay attention to this tiny gift of his eyelashes moving on my cheek. But the outside view of this moment tells a different story – there I lie, exhausted, with a creature on me, his arms as thin as sticks, his lips open against my chest as if making one last attempt to feed. It is the only photo that truly horrifies me. It is an image I would prefer not to have created with words. But I must be honest. In a different world, loving him enough to let him die could have been less awful.
“WHAT WOULD YOU say if I gave him a fatal dose?” David finally asks. He’s hitting a wall. Morphine was held out to us as the panacea, and yet now that we’re here, we’re told that people get used to morphine, that a baby especially can metabolize and live for a long time on increasing doses. Thirty-five days old, thirty-six; perhaps he will always be alive.
“Is there even such a thing?” I say.
David doesn’t know and the question is stalled for another day.
Each day it seems Silvan can’t possibly survive another; and then it is morning again, and David is having thoughts of morphine. I worry my husband will lose his sanity if he can’t give his son a fatal dose. And I’m afraid he will lose his sanity if he does. If our suffering is necessary proof that we have made this choice out of love, then we are proving our love in spades. This is not the slippery slope towards callous euthanasia; this is the steep climb, I think, towards something more selfless and noble. But finally, I have to ask David to stop talking about it. I tell him I can’t risk having him accused of murder. I can’t risk him feeling like a murderer. This is the law, whether we like it or not. We don’t have this choice. Besides, we are nearer to the end than the beginning now. Can’t he wait?
And maybe it’s easier this way, to forbid him.
Forbidden, David admits he couldn’t have done it.
AND THEN IT finally comes. In the middle of the night, in the middle of our bed. We think our baby is gasping his last. The sound wakes us from heavy sleep to horror. David turns on the light. I hold Silvan while David fills the dropper with morphine.
This will be, we are sure, his final dose, the dose given to relieve “agonal” breathing, the dose that relieves the pain of death. And yet I’m sick from having been jarred from sleep. My arms feel too weak to hold my baby. David thinks we should each administer half the dose so that neither of us will feel responsible. He goes first. We’re both sobbing. The bed sheets are in a tangle beneath us and it is hard to sit up. I don’t want to say goodbye to him like this, half asleep, in the mess of our bed. David says we should sing. He breaks into our song:You are my Silvan, my only Silvan
You make me happy when skies are blue
You’ll never know, dear…
I try to join in but my throat closes and still David goes on –
I dreamed I held you in my arms
– but I am so sleepy, I want nothing more than to flop down and maybe I can, because Silvan seems to have recovered.
We stare in disbelief. Yes, his breathing has become soft and easy again. In a flash, the terror that he would die is replaced with the horror that he has not, which is replaced with relief that he’s still with us.
“YOU DID THE right thing,” the hospice nurse tells us the next morning.
“But why did he recover?”
She looks surprised. “The morphine just relaxes his breathing so he’s not uncomfortable. It will only help him die if he’s already dying.”
All that next day, we stay home alone with him, but there is no change, no more scares. At last, needing relief, I call my mother. She’s at our house within ten minutes. As David and I walk around the neighborhood together without Silvan, I am at peace knowing he’s in his grandmother’s arms and that within a short while, he’ll be back in mine, and that we may go on and on like this forever. Just like with Mark in those last weeks of his life, it’s impossible to believe that Silvan will ever really give up. After all, I’m getting used to him, to the strain of loving him to death.
Joy
“HIS SYSTEM IS STARTING TO SHUT DOWN,” THE HOSPICE nurse finally tells us. It is early June; Silvan has been alive for thirty-eight days. We have been waiting since April, and yet now that I’m told his end is near, I no longer believe it. The phrase itself repels me. “Shutting down.” I remember seeing his heart in my first ultrasound. To my surprise, the sight made me cry. There it was, this new life, this second heart beating right inside me. The last thing in the world I want is for that system to shut down. Shutting down means we are past the point of no return. His beautiful kidneys, his exquisite liver, his heart. They are being ruined. They are betraying him. We have betrayed him. Soon he won’t even be able to take another breath. Don’t leave me Silvan. Please don’t leave me. I didn’t mean it. I’m sorry. I’m so very sorry. And so it passes through my mind and yet, here I am, still sitting in my armchair holding my dying son and nodding at the hospice nurse.
But she can tell. “What will make it okay for him to go?” she asks gently, turning, for the first time, all of her attention on us.
“I j
ust need him to die in my arms.” As I say it, I feel all the desperation in my voice of someone making a final wish. I am bargaining with the genie again. If I’m to have a baby who will die, then please just let him die in my arms. After having come so far with him, how can I not be granted this one, tiny wish that he not be alone at the end?
“Do you understand it may not happen the way you need it to happen?” she asks.
Of course, this is death we’re talking about. I nod. Just as I could not control his conception, his birth, I know I cannot control his death. And yet, I am pleading. I cannot imagine any other end but in my arms.
His temperature is way down, she reports. He has not peed in days and days. His heart is beating slower and his breathing is irregular. “His system is definitely shutting down,” she says, “but as to time, it could be today, it could be a couple of days.”
“Could it be another week?” I ask.
“No, no, I don’t think another week,” she says.
She doesn’t think so? No one has ever thought it could be another week. But if it is another week, does that perhaps mean he will go on forever?
He takes three breaths. We wait. He takes another breath.
DAVID SETS UP the little inflatable mattress on the table next to my plate. We’re eating chicken with Gavin whom we’d called that morning and begged to come soon, to come today. Gavin hasn’t been by since we brought Silvan home and there isn’t much time left. Every so often, I turn from the lunchtime conversation and check on Silvan. He’s so calm, his brow unwrinkled. I run my finger across that brow and the day seems perfect: good company, good food, my baby there within reach. How glad I am to have that balance; everyone at peace. There is a veil of clouds on the sky, a golden warmth to the day, that pleases Gavin and me. We talk about favorite temperatures and humidities and the simplicity of our pleasure is satisfying.
Holding Silvan Page 12
