by Pia de Jong
On the morning of the appointment Robbert and I steel ourselves. It seems hard to concentrate on the simplest things. Tying shoes, gathering insurance papers, finding the house key. We are both nervous and excited at the same time, as if we are preparing for a long trip. Charlotte’s lip trembles, and I expect her to burst into tears at any moment. But she does not. She hardly cries at all, as if that takes too much energy. Reluctantly we leave our home.
“I’ll need a small piece of tissue from her thigh,” says the nurse, an energetic woman with a stentorian voice. Charlotte lies defenseless on my lap. “Because it leaves a scar, I’ll do it as high as possible,” she continues, “so when she is older, she can still wear a miniskirt.” She first numbs the spot, then pushes a device that reminds me of an apple corer effortlessly into Charlotte’s delicate skin. I fight a sudden rising nausea.
A trickle of blood leaks from the small wound. The nurse wraps a pink bandage over it. “There,” she says. “That’s it.”
She drops the biopsy into a container. Charlotte, I read on the small sticker glued on it. While I stare at the letters, they begin to dance, rising into the air. They become birds. Away they fly, away from her. No, no, I want to scream, stay, please stay with her.
We both are uncomfortable. It’s over, the woman did what she was supposed to do, we can go home now. But it does not feel right to leave a piece of our child here, on a counter. It belongs to her. What will happen to it? Who are the people who will examine it under a microscope in some laboratory, God knows where?
“Charlotte,” I say softly, “I am so sorry.” It’s my fault. I wanted her more than anything. A daughter to love. A daughter for whom I dreamed up a wonderful life. For whom I would stretch a tightrope to walk on, with her head in the clouds. But instead she is in pain. Instead I allowed someone to make a hole in her leg that will become a scar. A spot that she will one day have to hide under a miniskirt.
Behind me on the wall hangs a colorful medical poster. Robbert and I study the close-up pictures of the most diverse bumps and skin blemishes. They are all symptoms of scary diseases. Not one resembles the blue bumps on Charlotte’s skin.
A sliver of light falls on her face. My beautiful summer child starts to glow. I put my finger on her back and press gently. Under her skin lies a hidden pond. I could dive into it, let it cover me with its clear blue water. Maybe then I will be able to fathom her secret.
Just as we start to dress her, a doctor pokes his head around the corner. His white coat hangs open; his skin looks pallid with fatigue. Out of breath, he asks if he can have a look at Charlotte. He has heard other doctors talk about her.
Is it his voice that makes me trust him? Is it the sound of the night hovering around him that takes me back to a time long ago, when my father came home late at night, full of stories of worlds still unknown to me?
The doctor rubs her back gently. His eyes are as blue as the mysterious lakes on her skin. Time dissolves.
“I once saw a child with something like this,” he eventually says. “Long ago, during my internship in America. A newborn boy covered with blue spots.”
“And?” Robbert asks. “What happened to him?”
He pauses, looking suddenly sad. “Let’s not prejudge things,” he says. “Let’s wait for the results of the biopsy.” Then he disappears down the long hallway, his lab coat flapping behind him.
Charlotte is hungry and I sit down to nurse her. It’s almost dark in the room. The photos on the poster now are difficult to distinguish from each other, as if in the twilight it does not matter what disease you have; they are all the same.
I hold my hand over the patch on her leg. A miniskirt, the nurse said. I try to imagine Charlotte as a girl about ten years old with skinny legs below a flimsy skirt. Nothing, not even an innocent image like this, is certain anymore. Robbert and I are silent. What’s there to say? And what difference can words make?
Charlotte cries the rest of the evening and the night. I try to calm her. But why is she so restless—what is wrong with her?
The next morning her skin looks different. Some blue spots are still there; others have disappeared. Clearly, something happened. Robbert assumes her immune system was shaken up by the biopsy.
The following days we spend waiting. The boys and I stay indoors and barely get out of bed. We put together a puzzle that shows different birds on pieces of wood. “Bird of prey!” exults Jurriaan, taking the eagle. He runs through the room, flapping his arms. He hooks his fingers to make claws, jumping high in the air again and again without getting tired. Matthijs tries to do the same thing but falls flat on the floor. The rest of the evening he cries inconsolably.
At night I constantly wake up. I dream that dark blue water gushes from the spot on Charlotte’s leg. The flow is unstoppable, no matter how hard I to try to block it. It becomes a river that flows into an ocean filled with infinitely deep waters.
A week later the results are in. We prepare for our departure to the hospital, slowly, as if we want to gain as much time as possible. Extra time that will fall from the sky in our laps as a special gift. Robbert arranges for a babysitter for the boys.
As I dress Charlotte, I try to say the name of every piece of cloth I put on her. But my throat tightens and I hardly recognize my own voice. But I can still hum and, to my relief, after a while even sing. Words seem to float on the melody that just bubbles up.
I sing about every pearly button I push through its buttonhole, each cotton sleeve I pull down. I sing about the white collar with the yellowish spot I drape around her neck. As I sing, my voice gets stronger, my tone purer. Charlotte looks carefully at me. She seems to understand everything, as if my words go straight into her soul. I get her ready with the same care with which I previously prepared for her birth. Painted the walls, hung the curtains, and folded her little dresses. Only then I fantasized about a girl who would dance one day. Now I prepare for a judgment.
Finally the three of us go outside. I’m still shaky and weak from childbirth. My legs are heavy. It’s hard to move myself forward, to place one foot in front of the other.
A dull glass sheet has come down between me and the world. I hardly recognize my beloved Amsterdam. A carillon plays a familiar tune, which I cannot identify. Two men move a piano, cursing. Charlotte clings to me. Robbert and I draw closer to each other. We are insubstantial shadows trying to survive against a much too colorful background.
The table in the doctor’s office is littered with dirty coffee cups and torn sugar packets. The pediatrician, a woman with laced-up shoes below her white smock, wipes grains of sugar off her sleeve. Then she offers us a firm handshake. She waits on the edge of her chair as we sit down.
“I have bad news,” she begins. “We now know that the spots on her skin are tumors.” She pauses as she looks at each of us. “Your child was born with a very dangerous form of leukemia. Congenital myeloid leukemia, to be precise.” She pronounces each word separately, the way a stonemason places stones, one after another.
She takes a sip from a glass of water and looks around. More sugar grains fall off her sleeve into the spilled coffee on the table. I know why she does this. It’s in the playbook for delivering bad news. For years I taught courses on it. Hand out the bad news right away, clear and direct, then wait patiently for the emotions to come up.
But the only things getting through to me are the hum of the air conditioning, the wispy clouds in the sky outside the window behind her, the paleness of the air. Charlotte makes smacking sounds. She’s hungry and will soon be nuzzling for my breast.
“How dangerous is it?” asks Robbert. “I mean, isn’t leukemia in children rather easily treatable?”
“Yes,” she says, “generally it is. But the kind your daughter has is the most dangerous. I’m sorry, but you should prepare yourself for the worst. Charlotte may have little time left. Very little time.”
I put my hand on Charlotte’s head to protect her from the curse of this evil fairy. I want to sing
for her through it, loud enough to drown out all other sounds. A children’s song, like mothers all over the world sing to reassure their children.
The doctor seems to expect something more from us. With her green eyes wide open, she looks at me, then at Robbert, then at our child.
“Is this it?” I ask. “Or is there more you need to tell us?”
She sits back in her chair and then leans forward again. “Have you understood what I just said?”
“Certainly,” I say. “It is absolutely clear. But now we want to go home.”
“Are you sure you have no questions?” she asks again.
I notice that Robbert is sitting on the edge of his chair, like me, ready to go.
“No,” I say. “No questions. Only the name of the disease. Could you please write that down for us?”
She picks up a yellow notepad lying among the packets, plucks a pen from the pocket of her white coat, and slowly writes down the words.
I grab the notepaper from her and put it in my bag. Robbert and I stand simultaneously. She gets up as well. As we walk to the door, she walks with us. I try to move faster. I want to leave this room, this bizarre drama featuring the life and death of our child. Charlotte is restless; she flails her arms and legs, trying to wriggle out of the sling. It will not be long before she starts crying.
“One more thing, before you go,” says the doctor. She takes a step forward, so she stands between the door and us. “It’s hard to love a child you have to let go. For many parents, it is too heavy a burden.” She puts a sticky hand on my arm. “If you cannot handle it, you do not have to. You can always bring her. We have a place where she can stay. She will be well cared for.”
I turn away from her and leave the room, afraid she may decide that this moment has come. That she will say, “I notice you cannot handle the situation. You will have to leave her here. We know what to do with her.”
“We will contact you as soon as a hospital room is available,” she calls as we rush into the hallway.
Away we walk, down the white corridors of the hospital. Charlotte immediately lets out a scream. Her fingernails dig into my arm. Who would have thought that those nails, so thin and tiny, could scratch so painfully?
“Ouch!” I yell. “Stop that.”
Still walking, I try to pull her out of the sling. I stumble, which makes her choke, turning her face red. I lean over her and frantically rub her back. It’s my fault if she suffocates. “Breathe,” I yell at her. “Right now!”
We start to hurry through a hellish maze of corridors, stairways, and glass doors. Where’s the exit? I feel caught in the tentacles of this annoying doctor with her bad news. Robbert, who always knows the way out, who has never been lost in his life, now cannot find the exit either. We are both out of breath.
Several times we have passed a wizened man in a wheelchair, but now he beckons to us. With a trembling hand wrapped in bloodstained bandages, he points to a sign that says EXIT. Perplexed, we stare at the green letters.
There it is, close to us. We can escape after all. Only it is not clear what we are escaping from.
As we approach our house, I see my older brother talking to the hooker. He is the only one of my family who has not yet visited since Charlotte’s birth. He must have heard we were seeing doctors today. Afraid it would turn out to be too late, he must have decided not to wait any longer.
He casually leans a shoulder against the hooker’s window, wearing a handsome jacket that suits him well. She looks trashier than ever, poured into extremely tight shorts and teetering on ridiculously high heels. Everything that was previously girlish about her has vanished. She and my brother smoke cigarettes. He must have bummed one from her, since he stopped a long time ago.
It’s incongruous to see my brother at precisely this moment with precisely this smoky-eyed girl. As if she were not a whore. As if he is not my big brother. As if I had not just been told my daughter will die. When he sees me, he straightens. “I have been waiting for you,” he says. “I am worried to death. It took so long.”
“Come in,” I say, hugging him. I have not seen him for a while, since he travels often. We were close as kids, sharing all our secrets, but then drifted apart.
A few minutes later he sits on our couch, holding a bottle of beer. I get some cheese from the refrigerator and cut it into little cubes. I very precisely put toothpicks in each of them.
“How’s Charlotte?” he asks after a few sips of beer.
“She is not well,” I answer. “Her prognosis is not good.”
He winces, does not know what to say. There is an awkward silence. I open a new bottle of beer for him. Empty time passes. We are family; we are supposed to be there for one another. That is why he put down everything today and drove to me. But now, sitting across from each other in my living room, we have no idea what to do.
Later that evening our family doctor knocks on our door. No, he does not have to come in, he says with a glance at the beer and cheese on the table. He just wants to know if we have understood what the pediatrician told us that afternoon. “Do you have any questions?” he asks, looking at us expectantly.
“Why are you here?” asks Robbert.
“According to the pediatrician, you reacted rather unusually,” he says.
“How do people usually react?” Robbert asks.
“Well,” he says, “often they are emotional. Many cry. Some scream.” He pauses. “Did you understand what she said?” he asks again.
“Of course,” I say. “We have the diagnosis. I put it in my purse.”
He nods, glancing again over my shoulder into the living room. “I’ll come back again soon,” he says as I start to shut the door.
While Robbert picks up the boys at the babysitter’s, I ask my brother to leave. We are tired, I say; there is so much we have to take in. He jumps up, relieved to go back to his own family. He must have felt awkward as well. When he kisses Charlotte, I wonder if this will be the first and the last time he will see his niece. Once outside, he turns and waves to the hooker. She absentmindedly lifts her hand.
I clean up the mess on the table, and then Robbert and I take the boys to bed. They crave a story, and then another one. Afterward Robbert and I sit together on the couch. In the silence around us, we try to find a beginning. Any strings to pull that will help us start a conversation. But nothing comes to mind. The words we heard today have somehow remained in the hospital room, with the doctor with her laced-up shoes who tried to break the news to us according to the rules.
Defeated, we soon go to bed. Charlotte snuggles in her favorite place, the crook of my arm. Robbert and I hold hands. In the gloom, I see the familiar contours of his profile.
Slowly the day sinks deeper and deeper until it drowns in itself.
Charlotte wakes me up in the middle of the night, breathing heavily. Outside, a bicycle rattles down the street, followed by a black carriage pulled by a horse, a new tourist attraction that scares me every time it passes my house. Slowly the words of the physician float to the surface. Your daughter is not all right. Something is seriously wrong with her. You must prepare for the worst.
I lean over my baby. Her yellow terrycloth sleeper stretches with each inhalation and then collapses again. Moonlight that enters through a crack in the curtains captures her face. A fleeting image of shadows and lines, precise as an ink drawing, then flowing like a dance. Her lip quivers, ever so lightly. A ripple, like a gust of wind over a lake.
I think about what the doctor said. She is given little time. Very little.
How can I measure this amount of time? Years are much too large for a baby. Huge, like pyramids. Months are a giant’s strides forward. They make the difference between standing and walking. Days are short trips, packed with exciting adventures. Hours, maybe. In which you can go from a daydream to a laugh. Or was this doctor thinking minutes? The time it takes to sing a children’s song? Or a catnap? Would I be able to measure the time given to her in breaths? All of them
different. But each of them is countable, breath by breath.
I feed her, and then we both fall asleep again.
The next morning my legs are leaden. All strength has fled my body, and I am unable to stand up. Robbert, I try to say, but my throat clamps shut. In a panic I grope for his hand. He is there, there for me. He begins to caress me with long strokes on my back, just as he did during childbirth. He does not stop until finally I am able to talk and to move.
“What now?” I ask. “What lies ahead of us?”
“We will get through this,” Robbert says. “We’re in this together. We will be there for each other.”
Then the boys jump on the bed.
“Lotje! Lotje!” shouts Jurriaan as he balances his baby sister on his lap, as cautiously as a nearly four-year-old can. He looks proudly at me. “She likes being with me, Mama,” he says.
“Of course she does,” I say. “She is lucky to have you as her big brother.”
Later that morning I take the doctor’s note from my wallet. I stare at her words, in childish handwriting. They are a threat, a verdict in three hammer blows. Congenital. Myeloid. Leukemia. I try to comprehend each word, one at a time. But they are like fish in a rapids. Whenever I catch one, it squirms and slips from my grasp.
I put the notepaper back in my purse. As long as it just sits there, next to the receipts from the supermarket, this gruesome diagnosis cannot take hold.
The day unfolds as if nothing is out of the ordinary. Robbert makes pancakes, and the boys devour them while playing. It is a languorous summer day, one of those days I remember from my childhood that yawn and stretch as afternoons melt into evenings.
“Let’s go to the park,” I say. “It is too nice to stay indoors. We should enjoy it now, while we still can.” We gather our belongings, and when we are done, I tie a light blue sunbonnet on Charlotte’s head. She gives me a faint smile.
Just as we close the door behind us, Mackie crosses the alley. He wears an unbuttoned shirt that hangs to his knees, the smell of mothballs all around him. His face is even more tortured than usual.