Kawasaki disease is about time and space: it’s about measurement. If the coronary arteries expand too far—the difference is in millimeters—the damage is irreversible. There are only thirty-five hundred cases a year in the United States, but it is suspected that more are undiagnosed. It’s apparently not contagious. Occasionally, there are geographic clusters, three or four children from the same area, but there’s no real evidence. The dose of immunoglobulin retards the expansion of the arteries, and it matters how quickly the child receives the dose. The product has to be mixed. The components are frozen and they have to be defrosted. Her dose is ordered by the Kawasaki team at midnight, but it doesn’t appear on the eighth floor until 5 a.m., because for two hours the order sat on someone’s desk.
We are so exhausted that, even as wretched as we are, we could probably manage to sleep, but at 3 a.m., the room is rocked with noise. It’s a double room, and three feet away, beyond the curtain, someone heavy is hurling himself (herself?) against the wall of a crib. Bang, bang, bang. Then a high-pitched keening, with no words. Yelping. In the din, a woman’s voice says, “Oh dear, you got up too early, didn’t you, didn’t you.” She croons this. The banging and the growling continue. Holding hands, we hide in the white bed. In this long night, we have plunged, hapless, into a fairy tale. A nurse comes in on the hour to check her vital signs. What is that noise? I ask the nurse. She shakes her head at me, censoriously. The roar continues. A nurse comes in, finally, with immunoglobulin, which replaces the hydration IV pack. The countdown starts. Gray light creeps into the room. At eight, a head peeks around the curtain. It belongs to the night crooner: a pale, dumpy woman with short, dyed-red hair. She is wearing a Red Sox sweatshirt and navy-blue sweatpants. She could be forty, or sixty.
“Did she keep you up?” she asks. There is no word for her tone but consoling. “She’s deaf and blind, you know, so she can’t hear herself. I’m sorry if she kept you up.”
We look at each other. We have known from the beginning that things could be worse. Here is worse. Sunny, composed, the woman emerges from the bathroom. She says, “I’m going to brush her hair. She loves to have her hair brushed.” We listen, and from the other side of the curtain comes the sound of crooning, and what we can just make out as laughter.
A few minutes later, she rounds the curtain again. She is pushing a wheelchair. In the chair is a little girl with gleaming hair. She is wearing a pinafore, pink socks, and white sneakers. Her arms hit out at nothing, and her legs are oddly flaccid. Her ears are too big for her face, and the lobes are pointed. How terrible, I am thinking, to bear such a child.
Her mother looks at her. “She’s four. She’s adopted,” she says to us matter-of-factly. “When she was ten weeks old. Her parents couldn’t take it—you know, the problems. They’re wealthy, in California.” She pauses, stroking her hair. “Sometimes he send me money. I send him pictures, but I have to mail them to his office. The mother—she can’t stand to look at them.” She looks at us fiercely. “Their own flesh and blood.”
Then she’s benign again. “We live in New Hampshire, but we’re here a lot. Cyclical vomiting. But I think we’re going home today.” She unbuckles her from the wheelchair and takes her by two hands, like a toddler.
“Look who’s walking,” cries a nurse in the reception area. There’s a muffled sound of applause. Our own child, in bed but awake, looks after her. “That girl is like me,” she says. We look at her aghast. She points to the IV in her hand. “She has a mitten, too.”
A moment later, the same nurse—the nurse who would not speak to me in the early dawn—comes in again. She is all of twenty-five, twenty-eight, Boston Irish. She shakes her head. “There are three more of them at home. She takes care of them with her sister.” She pauses, checking the monitor. “I think she’s very religious.” Later, we will tell our friend Storm, a priest, about the little girl, and we will accuse Storm of sending her to us. For now, we are stunned.
The days blur. Her father goes back to the Cape to take care of the other children, to round up their socks and flip-flops and towels from the houses of friends where they’ve left them. He drives back to the hospital the next day. We make telephone calls. No one’s ever heard of this. Everyone goes on the Net: the phone rings with facts. Her grandmother flies up from New York, and takes up residence in a hotel across the street from the hospital. I become an old hand, I know where the Jell-O is kept down the hall. I do not leave the hospital. The immunoglobulin drips into her arm.
Her temperature drops, and for a few hours she responds. The fog lifts, and in those minutes we can see her, we get our child back. She wants blue Jell-O, she wants red. She wants ice cream. “I think my soup is actually warm,” she says. “No, it’s actually cold.” But three hours after the IV drip stops, her fever almost immediately shoots back up again and she is gone. We have to do it again, says the Kawasaki team, which has become one person, a doctor from Nebraska in a violet sweater who has been in the hospital two days. In 1 or 2 percent of the cases we see, she says, this happens. What she actually said, first, was: I don’t want to tell you this.
Because I am an idiot—even now!—a person (still!) who would send her children to school with a cough, I point out that it’s early evening, the witching hour: everyone’s fever goes up at night. She’s cranky and tired. I have four children, I know this. No, the doctor, whose name is Dr. Woodward, says. Her pale face is rigid with sleeplessness. I am sitting on a hard wooden chair, a rocking chair, next to the monitor. By now I am so far, far away from anywhere I have ever been that I barely recognize my own voice asking a question. I know the thing to do is to turn and look directly at the doctor, and I do this. “What happens,” I ask, “if the fever doesn’t go down this time? What will we do?”
The answer is nothing. There will be nothing to do. They had left the IV tube in her hand after the first dose of immunoglobulin in case they had to do it again. I didn’t know that, now I do. Her father is on the way back to the Cape. I wait to call him until he’s off the road, but he calls from the car. We decide he will stay with the other children. This time, Dr. Woodward takes the request for the immunoglobulin down to the lab herself. It is mixed quickly: the new dose starts three hours later.
By now, she has had Kawasaki disease for seven days, during which she’s been feverish for all but three hours. At night, she and I sleep in the same bed. In the middle of the third night she sits bolt upright in the bed and screams, “Where’s my mommy?” The immunoglobulin drips into her arm through the clear tube. Wires cover her chest. Despite the tube, she tries to get out of bed. “I’m looking for my mommy!” she screams. Her body is covered with wires, the fluids leach from the IV into her bandaged hand.
“Don’t look at the monitor,” the nurses say. “It doesn’t mean anything.” When it flashes, they run in to check. Four aspirins a day keep her blood from clotting, and I grind them up and put them in her blueberry yogurt. “Just a spoonful of sugar helps the medicine go down,” sings Julie Andrews, on the video screen. Everyone passing by looks in and says, “I love Mary Poppins.”
She has two echocardiograms. Her heart is like a pulsing flower. She lies on her side while I tell her the story of “The Nutcracker Prince.” She is coated like a jujube with the blue jelly. We go further and further into the forest. We learn the first findings. The function of her left ventricle is slightly depressed; there is a small pericardial effusion, which means she has fluid around her heart; her aortic root is at the upper limits of what’s considered normal, as is her left coronary artery. This is what they would expect to find with acute Kawasaki disease. When I was a little girl, I played every summer on the same beach where my children play now, with the children of my parents’ friends. When the phone next rings, it is one of those friends. Now he is a pediatric cardiologist. Listen to me, he says. He sets up appointments—here, there, for when we return to New York. I call Dr. Lazarus in New York. Good, he says.
Good. These are the people to see.
The second treatment works. She eats a dish of rice and peas. The nurse comes in every hour and checks her temperature. I become more superstitious than ever. I cross my fingers. Her fever stays down.
We have not been outside the hospital for five days. The night before we leave, another child, a little boy, is admitted with Kawasaki disease. His mother is a nurse. “I called my friend on the way here,” she says, “and I said, ‘Look it up.’ My friend called me right back, and started reading.” The mother pauses. She is in tears. “I thought, How can he have something I’ve never heard of? I had to pull off the road.”
I decide to make the homecoming festive, and take the ferry across Cape Cod Bay to Provincetown. Her grandmother accompanies us. The day is warm and windy, and the bay glistens. If her fever goes up even half of one degree, we are to return to the hospital immediately. Over the next days, I will put my hand on her forehead so often she swats me away. Back in New York, she’ll see four doctors in three weeks, and the one they all lead to, a large, kind man, the wizard at the very center of the maze, who listens to her heart intently for a full five minutes while she sits absolutely still, as she has learned to do, will say to me, in early October, She’s fine. Her left aortic root may be slightly enlarged, but she’s fine. Two weeks later, she’ll cough while she’s eating breakfast and I’ll start to shake and have to leave the room.
When the ferry pulls in, the wind stops. Her father brings the other children to meet us at the dock. She has slept on my lap during the ride, and the button on my jacket has made a red mark on her face. The children are horrified: all their anxiety is centered on that one splotch. What did they do to her face? they cry.
There is news right away. The waves are good, the waves are bad. They ate marshmallows. The biggest news is the mouse. They have found an infant mouse, in the grass at Lev and Joseph’s house, and Daddy said they could keep it.
“No mice,” I say.
I am instantly a pariah.
“You can’t tell them they can’t have this mouse,” their father says.
“What?” I say. We have been down this route before. We have two turtles, two cats, a fish, and four children, and we are not going to have a mouse.
“Wait,” he says.
When we arrive on the top of the hill, the door to the cottage is plastered with homemade welcome-home signs. The mouse is in a matchbox. Hairless, pink, it is only a little bigger than a fingernail. They found it the night we went to the hospital, and they have kept it alive by loading a grass stalk with milk and waiting while he sucks it. They have taken it in turn to do this.
Coats
When my friend Joan came to see me I coveted her coat. It was violet, and the snowflakes that had attached themselves to her as she walked through the park were small spangled stars. I coveted Joan’s coat because my first reaction, always when I see I coat I admire, is to wish I owned it. When I see a dress, or boots, or a bag, or hat—I may think, I would like to have something like that, and I may even set out to find one, not that thing but somethingclose— but that is because my relationship to dresses and boots and handbags and hats is not tinged with remorse and loss.
It is not only because I am always cold, although that is true. In winter my children need to be convinced to put on overcoats, and once they are outside, they take them off, holding their coats under their arms and sometimes letting a sleeve trail on the ground. In the summer when they were small they begged to eat supper without their shirts on. At night, they sleep naked and in the morning there are mounds of their bedclothes on the floor. Implicit in this is that to be hot is to be a person of vitality. When, long ago, we huddled by the fire on the steppes, a person who allowed cold to seep into her bones was a fool. People who feel the cold are always complaining of old-fashioned ailments: they feel drafts under the door, they suffer from rheumatism and neuralgia. When my grandmother was very old, she always wore a knitted white cap, to avoid a cold in her head. Now when I go out, I always wear a hat; and on the bus, I choose my seat carefully to avoid the air that pierces the weather stripping. My books are sodden from where they have fallen into hot steaming tubs; sometimes I have to buy another copy, so that I can find out what happens. My husband, who is almost always too hot—the only time he is cold is when we are at the sea in the summer and he stays in the Atlantic for hours, and then when he comes out blue and shivering, he is surprised and takes short, noisy showers. My eldest daughter, although she goes out without a coat—because it is a sign of weakness to admit to cold when you are young, and she wears a thin shirt in every kind of weather—without fail takes a hot bath when she gets home to warm her bones, but the youngest comes home from school with her anorak bunched up in her backpack, sweat on her brow. Now that she is older she is cold at night in our drafty house: once when I called when I was away she told me that she had worn gloves to bed, and I thought, not for the first time, What kind of mother am I? Like mine, her hands and feet are always cold. Sometimes, even when it is not very cold out but damp, my fingers turn a yellow-green in the cold, from the first knuckle to the tip—when I was a little girl my father would warm my fingers but cupping them in his hands and blowing into them, as if blowing out a candle.
The first coat I remember was made for me by my mother. When I was very small she made almost all of my clothes. The clothes I wore as a child, and that were worn by my playmates and my cousins, were uniform. We wore smocked cotton dresses in the summer and in the winter we wore what we called jumpers, but were really pinafores, made of wool or corduroy, over blouses with Peter Pan collars, or sometimes turtlenecks. On our legs we wore black or white or sometimes navy heavy tights, and we wore lace-up shoes or Mary Janes, with buttons that were impossible to do up by yourself. There was a little steel stick, button hook, too hard to manage. During my mother’s period of most intense homemaking she stitched the smocking herself; the coat I recall—and which I still have, and was worn by two of my daughters—was a red corduroy double-breasted coat with a round red velvet collar. The quality is such that the coat can stand by itself. They were “good cloth coats.” Now my children wear coats stuffed with goose down in bright colors, or old leather jackets they have found at Goodwill. When they were little they wore snow pants that matched the bright jackets; even in New York City we were ready at a moment’s notice to ski down slopes and survive in arctic conditions, but when I was a girl and it was very cold our snow pants were made out of some kind of intractable black serge that turned to iron the moment it was wet, and winter was inseparable from the smell of wet wool steaming on the radiators, and the knocking of those radiators, which had to be “bled” and which interrupted our dreams, as if heat was pounding on the door, damp and bloody, to be let in.
Lately, a friend whom I have known all my life as been reminiscing about a certain kind of coat that girls he knew wore in the seventies: these coats were made of Mongolian sheepskin and were brown or the color of milky coffee. They were trimmed with pile on the collars, which were worn open (then, we never closed our coats but wore them open, nonchalantly, in the coldest weather) and the leather was embroidered all over with flowers and leafy stems. I never had such a coat. As a student I was too shy. Now I do have a sheepskin coat. I bought it on the Internet, during a time when I was unhappy and had both too much and too little time. It looked a little like one of those coats my friend recalls so fondly, but it was not like those coats: it had a notched collar of dark sheepskin pile, and a band of dark pile around the hem, and a line of horn buttons. When I received the coat in the mail, in a brown-paper package tied with string and fixed, haphazardly, with stamps, it looked like a package that had arrived from the past. When I put it on in front of the mirror on the top floor of our house, the only mirror that does not distort, but because we put it there years ago for the children is set low on the door, so that you have to bend, slightly, to fit your reflection in the
glass, I went downstairs and found scissors in a kitchen drawer, and cut off the hem. It was exactly like shearing a sheep. The scissors cut through the skin with a hiss.
I have had that coat now for three years, it is the second sheepskin coat I’ve owned, and it is the warmest coat I have. When I bought it, it was stiff and old and like the corduroy coat I had as a child. It could almost stand up on its own, a straw man, a Guy Fawkes coat; like the coats my friend recalls so fondly it has a slightly madcap air: when my husband, to whom I was married when the coat arrived in its time capsule and I put it on, saw it, he said— My mind stops. What did he say? If I think, I will remember it, at the risk of remembering other things. Although when we were married my husband often chastised me mildly about my habit of running up bills, on the subject of new coats, of which I have acquired many, he was silent: on the roster of checks and balances that at that time made up our marriage, I was still a few coats short, for a decade ago when we moved into the house where I still live now, it happened that he threw all my coats away.
This house has five floors and huge drafty rooms, and in summer a honeysuckle climbs into the living room through the iron railings, which are shaped like sunbursts, but before we moved into this house, we lived in an apartment that looked down on this house and across to a church that looked, to me, like a church in Prague. For six people there was one proper closet: the apartment had been built at a time when people used wardrobes, great heavy armoires that were packed like trunks for great voyages, with clothes and shoes and overcoats, although often the people who owned them went nowhere. The closet in the hall was long, and part of it was for all purposes inaccessible: the door opened on the “front end” but six feet of the closet stretched beyond the door—it was possible to retrieve anything from the back of the closet only by crawling on all fours, with a flashlight. For many years, before we abandoned the apartment, we discussed opening up the closet wall, but as my husband had a particular aversion bordering on mania against sliding doors of any kind—an aversion that has been borne out in this house, as the sliding louvered doors of my closet, painted very pale green, a color called Abingdon Putty, are perpetually coming off their tracks and jamming. But when we lived there we did nothing to the apartment. It fell apart around us. In the summer I moved all the winter coats to the closet’s tight back alley, and switched our summer wardrobe of slickers and ancient linen jackets to the front end. In between, often for a day or two, the winter clothes would be strewn around the bedroom, as if a party were going on in the next room, and the guests had left their coats in a mound on the coverlet and chairs; a room full of coats where a couple quarreling or not could sit in a burrow of pelts as if retreating, for those ten minutes, into a dream of intimacy, and in the morning I would find little piles of ashes on the windowsill, from where someone had smoked a cigarette out the window, their breath freezing in the cold and leaving a smudge of smoke on the sash.
An Enlarged Heart Page 8