Here is the first time I stopped thinking about the possibility of my eight-month-old son, Sam, dying.
It was the day before Christmas, and Washington, D.C. was in the middle of a freakish heat wave, the air so balmy and humid, we opened up all the windows and the doors.
We hadn’t bought a tree. The doctors had advised us against having one in the house. Any mold or fungus it carried with it, they said, could be dangerous to the baby, with his freshly rebooted immune system. So my husband, Michael, had decided to set up luminarias on the railing of our porch, and he’d spent the afternoon pouring the sand into the brown paper bags out on the driveway in nothing but his T-shirt.
After dusk fell and the candles were lit, I carried Sam out on my hip so he could see. He’d been home from the hospital for over a month by then and was still struck dumb by the great outdoors, all that sky and open space that he’d barely seen.
His hair was growing back; it was now a velvet buzz cut that appeared nearly black from certain angles and an angelic silver from others, less like hair than a faint aura, though one still too tentative to read. The two of us stood together outside for a long time looking at the lights, until he got too heavy, and then I carried him back inside.
I had just bought a copy of Lauren Groff’s novel, Fates and Furies. After I put Sam down, I stretched out on the bed, in between the piles of jeans and onesies and I opened the book to the first page. A newly-married couple was walking up a beach somewhere in Maine, a man and a woman in a green bikini. It was raining there and the birds were screaming overhead.
I knew other women, smarter and better read than I was, who had stopped reading when they had babies, and more than anything I did not want to join their ranks.
All my thoughts were obliterated then. They blew from my head like dust. I just turned one page after another, and when I stopped and looked up at the alarm clock on the dresser, an hour had passed.
It was the first book I had read in almost a year.
Before and during my pregnancy, I had all the run-of-the-mill reservations about having a baby, including the ones about losing the extravagant amounts of time I had to myself. In my head, I made a bargain. I would give up all other things: my sleep, my (admittedly few) nights out, all my leisurely hot showers, as long as I kept reading. I knew other women, smarter and better read than I was, who had stopped reading when they had babies, and more than anything I did not want to join their ranks. I was a writer, after all. Reading was like breathing. It didn’t matter how noble the calling of motherhood. If I gave up books I was as good as dead. Anything but that, I silently vowed.
At first, I made good on my word. About a week after Sam was born, as soon as I got the hang of nursing and could manage a free hand, I picked up reading right where I had left off. I sat in the cheap, squeaky glider we’d acquired, and rocked what was probably the seated equivalent of miles, a novel in one hand, baby in the other. I was beyond sleep-deprived and yet also weirdly focused. While the glider shrieked and squealed, and Sam shifted between napping and gnawing my nipples raw, I plowed my way through Thomas Hardy and Dan Chaon. There’s a picture of me Michael took around that time. I’m sitting in that glider, a burp cloth on one shoulder and Sam on the other. My face is tilted toward the window, bright with late-May sunlight, my eyes are closed and purpled with exhaustion. You can’t see the copy of The Empathy Exams spread open on my lap but trust me, it’s there. I remember, because it’s the last breath I took before I went under.
About a week later, Sam woke up one morning with a bruise the size of a quarter on the top of his left foot. I was changing him out of his pajamas when I first spotted it: a sinister red circle, flecked with a darker violet at its heart. I lifted it up to the light to inspect it. For a second or two, there was no concern, just reflexive curiosity, the way there is when you catch the flicker of a shadow out of the corner of your eye. Wait a second, what’s that? you think. And you turn your head, expecting nothing but a simple explanation.
That moment, standing there with Sam’s foot cradled in the palm of my hand, was something I would return to again and again in the months that followed. About seventy-two hours later, in the ICU of Children’s National the attending hematologist gave us his diagnosis: Sam had an extremely rare, fatal autoimmune disease. A bone marrow transplant might save him. It might not. My father and mother, my sister and brother-in-law were all there. Everyone in the room was crying except for me.
The doctor had a great deal to tell us; I heard almost none of it. I just stared through the prison-like metal railing of Sam’s hospital crib. If I had only known, I thought. I would have lingered there at the changing table, reveling in the most mundane of tasks and trying to draw them out as long as possible: painstakingly securing the tabs of my baby’s diaper, carefully snapping all the snaps on his onesie. I would have paused to caress his tiny toes, marveling at the lovely ordinary life that had so briefly been ours and now was about to be lost.
From Sam’s room on the fourth floor of Children’s, you could see a reservoir, sparkling and chopping, like a miniature ocean, and a large, empty field studded with storm drains. On any given day, you could watch the bright yellow medevac chopper as it ferried in children who were on the verge of death. I would sit with my back to the door, my bare chest draped in an afghan while I used the hospital-grade pump the lactation consultant had procured for me when the chemo made Sam stop eating. I would watch the helicopter as it descended cautiously down through the wind, until it disappeared past the jutting wing of the building, covered with its galaxy of dark windows.
Somewhere in the bowels of my purse was a Nadine Gordimer novel, a tale about struggle and strife in a country half a world away. I had tried a few times to start it without success. On their own, the sentences made sense, but together, they failed to cohere, to draw me in. Or maybe they were drowned out by my own thoughts. My whole life, I had used stories, both my own and other people’s, to check out of grocery store lines and long bus trips, stints in doctors’ waiting rooms, heartache, my own depression, and finally of the tedious exhaustion of new motherhood. Now, here I was in this 15-by-20 room, where monitors and alarms were constantly beeping, and there was no way out, except the unimaginable.
Life in a hospital requires you to continuously exist in a sort of survival mode. It was like we were living in an internment camp. We survived its discomforts without complaining because we couldn’t escape, because we had no other choice.
We had to live strategically, to ration out our sleeping time, to concentrate on procuring the necessary supplies: cups of coffee and caches of gummy bears, the orange pacifiers that Sam liked, batteries for the psychedelic firefly mobile that he loved, the one that looked as though it had been designed during a bad 1970s acid trip. We had to scrounge for sustenance in the cafeteria, choking down servings of the scabrous macaroni and cheese or congealed prepackaged sushi.
In the halls, I avoided the gazes of the other parents, our fellow inmates. I didn’t want to hear what they were in for. I didn’t want to know what worse things might still lie ahead.
We learned to ignore the muffled wailing we could sometimes hear through the walls. Or we desperately tried to, anyway.
There were other ways to self-medicate besides books, of course. Drinking was the obvious one. There was watching TV. There was stuffing yourself with ice cream bars. One could always luxuriate in self-recriminations – God knows, there was no end to those.
It was like dropping a stone down into a well or the long, black shaft of a mine, and listening and listening and having no sound come back.
I didn’t blame myself for what had happened to Sam. I knew his fate had been sealed the moment sperm met egg—the biological version of a Greek tragedy. In hindsight it was clear that we, the mortal fools, had all been rejoicing when we should have been weeping, when we should have been steeling ourselves for an ambush, a battle, a long period of wandering in an existential wilderness, far from comfort of any kind.
But I did think about those weeks in the rocking chair, all that obsessive reading, and its uncomfortable resemblance to flight, all that time when my mind was not on my new baby, but somewhere else, somewhere he was not. It was hard to remember, but I think I had been trying to prove something. What it was I could no longer say.
The days ground on and Sam’s counts dropped toward zero. This was the most treacherous period, the weeks between the time the doctors decimated Sam’s immune system with a regimen of intensive drugs and the time before his new T-cells, donated by a 20-something-year-old stranger in California, began to proliferate and function well enough to keep him safe, both from himself and the outside world. Death loomed as an invader in the form of a single, invisible microbe or fungal spore. Everyone coming into the room wore gloves and lavender paper masks. Michael and I scrubbed down the crib rails with hospital antiseptic so strong we later discovered it was carcinogenic. We were constantly dowsing ourselves in Purell. It looked like we were perpetually wringing our hands. Which, of course, we were.
With our days whittled down to logistics, governed by a single, all-consuming goal, keep Sam from dying, I found myself reduced to a wordless, almost unthinking state, which even now is hard to describe. People were always asking me how I was doing, and I was always answering, OK, when what I really meant was: terrible. But there were long, disorienting stretches of time when I wasn’t sure if these two states weren’t somehow actually the same. I believed I had lost most of my basic feelings, even those good old atavistic standbys, grief and fear. It was like dropping a stone down into a well or the long, black shaft of a mine, and listening and listening and having no sound come back.
There were moments though. Sometimes leaning over the rails of Sam’s crib, I would study the expressions passing like clouds across his face. As young as he was, he could emote with a startling amount of nuance and force: skepticism, indignation, outrage, the impish appreciation of a joke.
He was stalled out in those series of milestones American parents obsess about: rolling over, sitting up, learning how to swallow spoonfuls of puréed peas and applesauce. But he had figured out how to clasp his hands together, to raise them to his mouth when he smiled with delight. It was his own little utterance of overwhelming joy. That’s when I knew I was still feeling something, that’s when I could hear the booming reverberation of the stone traveling back toward me with such a terrible and ferocious force that I had to put my hands over my ears and turn away.
We’re supposed to have brought back a souvenir with us, a handful or two of dark and harrowing grit to spin into gold.
The days ground on and Sam’s counts started coming back up. We were too exhausted and leery to allow ourselves to think maybe we’d survived the worst. One day we brought his car seat back to the hospital. We strapped him into it and then we drove him home.
The day after Christmas, I finished reading Fates and Furies. I started another book. Then I finished it and started another.
I’ve read stories like this one over the years, well enough to have a sense of the form.
I know this is the place where the triumphal note is supposed to sound. My son survived; it seems, perhaps, we have found our way back to the country of the fortunate ones. We’re supposed to have brought back a souvenir with us, a handful or two of dark and harrowing grit to spin into gold. But on the subject of redemption I have only this to say: sometimes there is none.
Still. It’s spring here in D.C. as I’m writing this, a trite piece of symbolism if ever there was one, but true nevertheless. The trees outside our kitchen window are coming into flower. In another couple of days, they’ll be in the kind of full bloom that makes them appear as though they’re emitting light.
That old restless writer’s habit of trying to inhabit other people’s lives is back with a renewed, unsettling force. On the walk from work this week, under a gloomy overcast sky, I was passed by a teenage girl driving a decrepit minivan. Something about her face caused me to conjure up her life, the slick feel of the worn steering wheel under her palms, the particulars of the home she was driving toward. I was trying to bestow upon her a problem, her blessing or her curse, the one mysterious and secret pivot on which her life might turn and suddenly become unrecognizable.
The thoughts were so vivid that I got distracted. I wasn’t looking where I was going and I almost ran head on into a jogger and her dog coming out of nowhere over the crest of the hill. As they passed, they both bestowed upon me a warning look.
My heart was thundering away. I lifted my head up and looked back over my shoulder all the rest of the way home.