Holding Silvan (13 page)

Now we have different questions for the doctors than when we first arrived. Back then, we had the kinds of questions they could deal with – questions about cord blood gasses and EEGs – but now our questions are ones that never appeared in their
textbooks. “What am I in for visually? How much worse will it get?” I ask every doctor I encounter, and every doctor looks bewildered.

“Be prepared for some weight loss…” one says.

“He will get thinner, perhaps,” says another.

Vaguely, they deny the horror of his shrinking and move on.

One day when I ask Dr. Z what we're in for, he suggests we seek “outside help” but as usual his euphemistic way of speaking confuses us. Does he mean help from a doctor other than him? Fortunately, David's stepmother is in the room to help. Carole assures Dr. Z that, seeing as both Larry and she are trained therapists, no one has forgotten about the benefits of therapy. Now Dr. Z misunderstands. He thinks she means that Larry and she will give David and me therapy. He launches into a story about the time his youngest child was a newborn and developed infant acne, and his wife freaked out and wouldn't let him diagnose it as something harmless. This is not the only time he's brought up his kids. Perhaps these stories are meant to give us hope for the future, but they don't. Or, rather, the only future I care about right now is Silvan's. Silvan has his own acne. There it is in the crease between lip and chin, a single bead, something to love, more proof that he's here, still alive, with the only pimple he will ever have.

When Dr. Z is done with his story, there is silence. “You know,” he says, “this is really hard on the staff,” as if we should take pity on him for burdening him with our son. When the silence remains, he licks his teeth. “But it's probably harder on the family…”

When he is gone, Carole tries to soothe me by saying, “What terrible bedside manners that man has.”

 

BECAUSE WE'RE IN the hospital, because all of Silvan's life has been medicalized, we seem to think there should be an answer to this simple question: when? Not knowing feels like torture. But no doctor hazards a guess, not even based on statistics. Dr. Z
won't even use the word “die.” He says “pass” instead and the first time he uses it I think he's talking about passing gas.

How grateful we are, in contrast, for the nurses, for their honesty, their emotion.

The night nurse is particularly blunt. In future years, she predicts, we'll look back and say:
that was barbaric
. “We would never do this to an animal, we would never starve an animal, we euthanize our animals,” she says. But is that true? I think of my cat Snowflake and how I failed her after college. She was my cat, it was my decision, my father said over the phone. However, surgery was expensive and the tumor likely to return. They were willing to pay for it, but she was twenty years old and a cat to whom surgery could not be explained, so euthanasia might be more compassionate.

And then, the clincher. “If you decide not to operate,” my father said, “we will donate the cost of the operation to a human charity of your choice.”

At that point, the washing machine in the background stopped. Both my parents were on the line, their voices made faint by the splitting of the call, but now my mother said she was going to put her receiver down to change the laundry. As soon as I heard that hollow thud, I saw my chance. In front of my mother, I was cautious, I was wary of her need to comfort, but alone with my father on the phone, I burst into tears because I wanted Snowflake to survive long enough for me to see her.

So I know it's complicated. I know that sometimes even for animals our emotions confuse our decisions. Because I cried, my parents operated on Snowflake, and I came home to see her, and a few weeks later she died anyway. We accidentally ran her over with the family car. There she lay, flopping in the driveway, dying in agony, after having survived a surgery so that I could pet her one last time.

After Snowflake died, I went down the hill to a cafe with paper and pen to write a letter to Maggy Brown. By then she was across the country in graduate school. With my innocence intact,
I wrote to her that at last I understood her grief. I had only an inkling of what I was talking about. Within a year, Mark had killed himself; within a year from Mark's death, my father died. Shortly after that, Maggy's father died; then a close friend from high school. Each time someone died, we called each other. No one else, we said, could understand.

And then I got the call about Maggy herself.

“I know I won't die yet,” Maggy told me. We were in Baltimore together when she said this, passing a lush garden enclosed by a picket fence. “I know because I haven't learned the names for all those flowers yet.” I had flown to her when I got the news. Her breast cancer was advanced, the treatments extreme, but she walked so fast, I couldn't keep up. Neither of us had hit thirty yet.

Maggy kept working, she won a prestigious grant from the French government, she moved to Paris; and she was flown back on a stretcher. The culture shock, the difficulties with the language weren't her fault. The cancer had spread to her brain. And here's where I failed her: though we'd grown proficient in talking about other people's deaths, we had no idea how to talk about our own. And yet even from a distance, I knew Maggy's death would come on Easter. In fact, I was so certain that even as I planned a brunch for that day I told David, “Maggy will die today. The call will come in the middle of the party, and I will excuse myself,” which is exactly how it happened. The phone rang, I excused myself, and then I returned to the living room where I proposed a toast in honor of Maggy Brown.

 

FOR A DAY, David and I consider our options for Silvan as if his dying should be more in our control. Perhaps we should flee to a place where we can euthanize him. We know Oregon has some sort of legislation. Though the legislation has to do with consenting adults, perhaps it could be stretched to cover parents consenting on behalf of their child. We know that there always has to be someone to take the first public step for policy to change.
We know that, though Karen Ann Quinlan's parents were acting simply out of love for their child, their legal battle has made things better for us. Because of them, we were able to take that first step of removing Silvan's breathing tube. And because Quinlan survived the removal of her tube and went on to live for years in a coma before she finally died of pneumonia, some other family with some other comatose loved one must have fought for the right to remove artificial hydration and nutrition as well. Perhaps, we think, Silvan's life and death will have had greater purpose if his death allows future children to die more easily than he is.

For a day, I am fueled by rage again. I imagine us fleeing in a car, being stopped at the border, having to fight for the right to keep our son. I imagine our little family martyred. Again, I imagine some future book, this one fighting for the cause. But what cause is that? Silvan lies peacefully in my arms. A hundred years ago if he hadn't died at birth, if he hadn't died of his coma, he would have been one of those babies who mysteriously withered away. It would have been tragic even then, but at least there would've been a fund of common stories to help those parents through. Not knowing when he will die is horrible, but it is natural not to know. It is part of living. We are forced to ask ourselves whose suffering we care more about, our own or Silvan's.

“TAKE HIM HOME,” THE NIGHT NURSE FINALLY SAYS ONE morning as she prepares to leave for the day. “At least do that.” Though we've only ever met her a few times in passing, each time we do, she's blunt like this, this woman who spends her nights tending to our son. Silvan is almost a month old when she says it. She's not the first person to have asked why we hesitate. Friends have asked, doctors, nurses. But she's the only one who sounds certain this would be better.

At first, we resist even her bluntness. We remain afraid. We're afraid of not having institutional support, afraid of being the family that panics in the moment of death and calls 911 and has our baby revived yet again. David is afraid of having Silvan die at home and having us associate our house with his death. Though I'm not afraid of this, I also know there are no rituals around this kind of dying. Would people come and sit with us at home? Would we want them to come? How long are people willing to pay attention? Would we become isolated, alone with our dying baby? How long would we be able to sit with him alone? Would the demands of being at home distract us from the purity of this vigil?

For a few days, we carry on as usual. We scrub our hands and arms with antibacterial soap until our skin flakes; we listen to the parking attendant “pray for a miracle” for us each morning, and smile at the man at the front desk who easily spells my name now on the badges of our many visitors. Running into my
mother around town, I see that she never bothers to take hers off. Sometimes I leave mine on, too, because it seems to explain what I'm going through. Wearing my badge, I hope to avoid the petty rage of pedestrians on the sidewalk who glare at me when I'm slowed by a sad thought against the usual flow of city life. It's a relief to get back to the hospital where everyone knows.

And yet, even in the hospital, the badge does not spare me awkwardness.

There is the nutritionist, a tall, handsome woman who breezes into the room one day and says, on her way to Silvan's chart, “Hello. I'm the nutritionist here.”

“We're not doing a very good job of feeding him,” I joke as she reads.

Spinning around, she leaves the room without another word.

There's the therapist who suggests that Silvan might benefit from massage, reads the chart, and also disappears.

And then there is Dr. Z with his constant refrain, “You will never regret this time with your son.” This is about the only thing he says anymore. It seems almost a nervous tic, something he learned in med school, a useful protocol like checking blood pressure. He says it so often that one day I ask how he knows. “You may not understand now, but you will really know what I mean in the future, ” he says.

At first I'm angry, I want to ask if he has done an objective study comparing the feelings of parents who starved their children to death with the feelings of parents whose children died in other ways. I want to ask how he knows about the future. I'm certain he's simply a coward. But at last his refrain begins to work on me. I think about “this time” with our son as something that will soon be gone. Until now, I've written in my diary with ambivalence. I've been suspicious of my penchant for thinking in terms of narrative. But now I realize what my mind is doing. If I understand my past by way of stories, I may also understand my future that way. I'm trying to find the story of Silvan that I'll
someday tell myself. I want it to be a story I can bear to hear, a story of loving him well.

 

I START BY paying more attention to his bath schedule. What mother doesn't bathe her child? I bring him changes of clothes from home, washing my favorite outfits frequently. Then there's the problem of his hat. Though I keep bringing in new ones from home, hand-me-downs and gifts from his baby shower, at last his head shrinks so much that none of them will stay on, and I arrive one day to find that a nurse has made him a hat from the sleeve-end of a hospital onesie. Her effort is so loving, so attentive, and yet it depresses me, that he will die wearing this scrap made by a stranger. Late one afternoon, I announce, “I'm going to buy a hat for Silvan.”

“You're crazy. You think you can handle being in a children's clothing store?” David asks.

“I'll be fine,” I say, ruffled by his question, for am I not a good mother who can shop for her son? Don't I want someday to be able to say that I did this? And I am fine, and a good mother, except that I'm holding my breath, and the hats are refusing to be small enough, and the clothes hanging from the racks are swinging back and forth in playful mockery:
we are for children who are growing up
, they sing. I think I might faint. Finally, I have to ask the clerk if there are any hats that are really, really small because I have to get out of there fast. She pulls a range from a basket and they are so cute: little dogs, polka dots, a jungle scene. But which is right for Silvan? What is exactly him? I need a hat that will remind me of him forever and ever. A hat to die in. The hot spring sun blazes through the plate glass windows and the little hats keep coming; they are blurring, and in that blur is the only hat I will ever buy my son.

“Will any of these do?” the clerk asks.

I moan.

“They're certainly as small as the hats they give out at the hospital,” she says.

“That's the problem. My son's in the hospital and needs an even smaller hat.”

“How old is your son?” she asks.

I'm stunned. Have I just told her I have a son? I have a son! How amazing to be out in the world telling people that I have a son. I have a son, I repeat to myself, I have a son about whom people can ask this question. “Almost a month,” I say. Can he really be so young?

“Don't worry, he'll be okay,” she says.

“No,” I wail. “No.” And it is too awful, being in a children's store where everything is full of expectation. It is impossible. It is impossible that I am no longer an expectant mother. Who am I? Where is he?

HE MUST COME HOME. HE MUST DIE AT HOME. IT IS AS if I'm bargaining with a genie who has given me three wishes. First, I asked for a baby but forgot to specify he should survive. Then I asked for him to die easily but forgot to say where. It is being in the hospital, I tell myself, it's being distracted from anything but Silvan that is making this so hard – as if death itself is not hard.
Good deaths happen at home
, I think. Even Mark knew this. Even Mark whose death I do not want to dwell on, whose death I've avoided telling until now, that final year, those final days. Halfway through college his misery had begun, his highs and lows. He'd managed to finish college, managed to find an apartment and get a job, but at twenty-five he'd moved back home, right before Snowflake died. For weeks we felt something coming as oppressive as a storm; for weeks he was vacillating ever higher and lower, hiding in the closet all one afternoon, insisting on another that I taste the orange juice he had made from the frozen concentrate in the freezer, insisting it was the best juice of his life while he paraded around in the vintage hats he kept bringing back from thrift stores. He lay in bed for hours, got up raring to help me clean our parents' house though I was the one paid to do it; I gave him the basement bathroom to clean and he was gone for hours, finally coming up in glowing triumph to lead me back down to admire what looked so much like the same old dingy bathroom with the beige tiles that I was surly in my thanks. He took me out for a beer saying it was my birthday,
though it wasn't; and he spent most of the time raging around the bar, wooing strangers until the bouncer came over and shone a light in his eyes to see if he was on drugs. The next day, my mother called his therapist, begged her to do something, get him back on his meds, but the therapist, seduced by his charisma, said he was doing better than ever. He went to the neighbors' house and had them take his portrait in a crisp, maroon shirt. He spent that evening at home with me making beads out of clay. I saw later how he had been worrying in his diary for months about our feelings if he left us. I asked if he was suicidal and he said, “No.”