Holding Silvan (15 page)

“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.

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.

“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.

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.