by Pia de Jong
“There’s something wrong,” he rasps hoarsely. “Your brother and the doctor have been visiting. I am so worried I could not sleep.” Nervously, he bounces up and down in his plastic sandals.
“We have been told that Charlotte will die,” I say.
Shocked, he stares at me. His eyebrows flare in all directions. “Charlotte?” he says. “No, that can’t be true. Not our Charlotte.”
I nod, suddenly realizing the awful truth of my words.
“Oh, my dear girl,” he says, and he wraps his arms around me, his beard tickling my face. Then he steps back, grabs my shoulders, and looks at me. “We will not accept this!” he says, with the intense indignation of the student activist he once was. Mackie, who divides the world into people who will save you or who will betray you in wartime. I realize that in his own unpredictable but ever-so-fierce way, he will fight for her.
Oddly, his words give me exactly the strength that I need.
“What now?” I say to Robbert later that day, as we sip tea at the Vondelpark playground. The boys wave at us, sitting on either end of a long yellow seesaw. “How do we go on?”
“They said they will contact us if there is a place in the hospital,” says Robbert.
“And then?” I ask.
“I do not know,” he says. “They want to know more, do more research. This is just the beginning.”
“What is there to investigate?” I say. “We know the diagnosis. And the prospects.”
“Doctors always want to know more,” he says. “Especially in this case. It is so rare, and so little is known about it.”
“How far do we want to go?” I ask.
“I do not know,” he says. “But let’s be mindful. She is so delicate and small.” He takes Charlotte from me and kisses her forehead. “Did that doctor really tell us we could bring her to the hospital if we could not deal with the situation anymore?” he asks.
I nod.
“I do not want to be apart from her at all,” he says. “I just want to be with her every single moment.”
I get ice cream cones for the boys, which they lick tentatively. They too sense that something is wrong. We are all restless, and no one is really enjoying himself.
“We have a room available,” says a woman on the phone the next morning. “You should be here tonight. Charlotte will have a bone-marrow biopsy early tomorrow. She will need to have full anesthesia.”
“Isn’t that dangerous for a newborn?” I ask directly. I remember I read this somewhere.
“There are always risks associated with anesthesia,” she says. “But it is necessary for the investigation. The benefits outweigh the risks.”
“Why can’t I come tomorrow morning?” I ask. “I prefer to spend the night at home. I want to be with my husband and our sons.”
“Sorry, but that is impossible,” she says.
“Why?” I ask. I do not see why I cannot be at home with my family tonight. If I say yes to this, what else will I be made to do that I do not want to?
“Ma’am, I’m counting on you,” she says. “The department is counting on you. We need to start first thing in the morning. You must check in tonight.”
I agree, reluctantly.
“It is difficult for me to leave the boys alone,” I tell Louis that afternoon. We walk together through the children’s playground, he with his hands behind his crooked back, I with my hands over Charlotte, sleeping on my stomach. The sky is gray as a dove’s feathers. Rain drips from tree branches. The canal behind the park has been abandoned. Gone are the fair-weather boats crowded with happy tourists. The windows of the West India House are shuttered.
“The boys have never spent a night without me,” I go on. “They wake up frequently and cry when I am not there.”
“Oh, oh, so much to deal with,” he says somberly, digging the tip of his shoe into the muddy earth.
Louis wants to make everyone happy in the small town he rules. Soothe away all grief and all pain. But he cannot do anything for me right now.
A little girl in a plastic poncho runs toward him, sobbing. Tiny drops of blood glisten on a scrape on her elbow. He picks up his box with colorful bandages and lets her choose one. “This one,” she says through her tears. “No, that one.” But even with the Minnie Mouse Band-Aid on her elbow, she continues to cry.
That night Charlotte and I arrive at the hospital. Our room is square, with bright white walls. A metal cot stands in the middle, like an altar on wheels. The iron bars are cold. I lower the high railing so I can feel the mattress. I doubt if I will put Charlotte in it. She has never slept in a bed, let alone one made of metal. I hold her closer to my body and walk around it. At one end is a white card with her name in bold black letters—CHARLOTTE, the most beautiful name, chosen with so much care. The only time I saw it in print before was on her birth announcement. The last week before her birth, when I was lying on the couch, Robbert did a drawing of birds in pastels. As the flock flutters into the air, they spell her name in the sky: Charlotte.
Her name does not belong in this room. I slip the piece of paper from the clip on the bed, fold it up, and put it in my pocket. Then I inspect the place. A minitube of toothpaste, a comb wrapped in plastic, liquid soap in a dispenser, diapers size extra-small. A table, two chairs, a metal nightstand. If the smell of disinfectant were not so piercing, this could pass for a minimalist hotel room. Beside the cot is a bed for me.
Charlotte opens her eyes wide, anxiously. Whenever I’m out of sorts, she is too.
I lie down with her on the bed. My whole body aches, as if I have the flu. But no matter how tired I am, I cannot sleep. I cannot even rest. Time passes slowly.
Across the hall, through the open door I glimpse a small boy. He is about eighteen months, not a baby anymore, but not yet a toddler either. A clear plastic tube snakes from his nose, and a wire runs from his chest to a device that blinks. Above his dark eyes is a tangle of black curls. He lies on a metal cot just like Charlotte’s.
A man and a woman sit on either side of him. The woman bows her head. She appears to pray. The man sits quietly, his arms limp at his sides.
The boy lies motionless, staring at the ceiling. Now the mother takes his little hand and rearranges it on the sheet, as if it were a precious jewel. Carefully she parts his fingers, one by one. They slowly curl back. I want to avert my eyes. I am not supposed to witness this, but I cannot make myself look away.
The woman’s long hair is gathered into a bun at her neck. Even now, in this impossible place, there is a hint of seductiveness about her. She is the sort of woman who could effortlessly take you to a hidden world. A place with low lights to illuminate her perfect skin, a boudoir full of sultry scents, a caressing hand that awakens desires. Yet here she is in this jarringly white room with her child, whose quietness is unsettling.
There is something unreal about this scene, as if I am watching a movie. The boy is there, still breathing, but his body seems detached from the sheet, almost hovering above it. For a fleeting moment the mother brushes the back of her hand on his cheek. It is getting dark, and I need to squint to see what is happening. I now feel even more like a voyeur. Darkness is meant to keep secrets out of sight.
Take this child in your arms, I want to urgently tell them. Hold him close while you still can. But as time drifts away, I understand why they do not. This boy, slowly dying, demands respect. Respect for the other world he will soon enter.
For a few minutes I stare at this frozen tableau while I wait for someone to hit the Play button. Something has to move.
A little later, a woman in a nurse’s coat enters and takes the mother’s arm. Like a ghost, the mother glides out of the room, her head, with a smooth brow, held high. Her dark hair, the color of her son’s, shimmers blue. The father follows a few steps behind. He walks stiffly, stumbling as if his leg is asleep.
Soon thereafter the bed is pushed away, with a small hillock under a draped sheet. I bow my head. Something big has happened, in all its smallness.
After a while, when Charlotte wants to nurse, I remember I am not allowed to feed her. Her stomach needs to be empty for the operation. But how can I not give my newborn what she asks for? Frustrated, she wiggles her feet against my stomach. She does not understand why I refuse to give her what she needs. Then she starts screaming, which makes me angry.
I cannot stand that I’m forced to frustrate my child. She is hungry; she is entitled to be fed. What kind of mother am I? How important is this operation anyway? What should be documented exactly, and who will benefit from that?
Charlotte now gags and turns red. I try to soothe her by walking in circles around the high bed, until the walls of the room close in on me. I need to get out of here. I tie the knot of her sling around my neck and leave the room. Perhaps walking will calm us both down.
Ours is just one in a line of similar rooms down the hallway. Doors behind which the sickest children can die quietly. I pass a room full of beds and peer inside. I have never seen so many sick children together. A multiplication of sorrows. A girl of about twelve sits upright in a bed near the window. She has curly blond hair that frames her face like a halo. Her eyes are bright blue. She holds her hands with her fingers outstretched in front of her, as if kneading the air. The boy next to her, who is at the most three years old, whines plaintively, like a forgotten puppy.
It’s too much despair for me, all these children, each drinking the black milk of fear. I want to comfort them, holding each and every one, but I have my hands full with Charlotte, who only wakes up the other children with her crying.
I firmly walk on, hoping to calm her. I open a door that leads to a staircase and find myself in the basement. Deep under the earth, where it is chilly. Scarily shadowy and empty, as in an abandoned subway station at night. Through the shadows I read all kinds of signs:
EXIT
BLOOD COLLECTION RIGHT
WAIT BEHIND RED LINE OUT OF RESPECT FOR
THE PRIVACY OF OTHERS
THANK YOU FOR YOUR PATIENCE
But there is no one here to follow the instructions.
The door in the glass wall of the office in front of me is closed. I once saw a man smash a glass wall like this one. I was eight years old, and my mother and I were in a doctor’s waiting room. My broken arm was not healing well. An older gentleman sat next to us. He had neatly folded up his newspaper after he had stopped reading it and put it into his spotless briefcase. He already had gotten up several times to ask the receptionist when his turn would come. His jacket lay on the chair beside him. I remember his manicured hands with perfectly filed round nails.
Then he stood up and, just like that, slammed his fist through the glass panel. The glass broke, barely making any noise, even when pieces scattered on the ground.
Petrified, the receptionist stared at the man. She sat behind a few shards of glass that still stood like sharp teeth, upright in the groove. Her orange lipstick gave her face a ghostly pallor.
“Finally I have your attention,” the man then said matter of factly, a broad smile on his face. He acted as if nothing had happened. As if blood were not dripping from his hands, as if a shattered window were not on the floor.
It took a while for my mother to breathe normally again. Red blotches had formed on her neck. She would have wanted to leave, go home, but could not. After all, we had an appointment, for me. I felt terribly guilty. My mother had to go through this ordeal because of me, because my broken arm would not heal.
That was then. Now I’m the mother. I too cannot escape this bizarre situation because of my sick child. I have to keep her calm, to guide her through the night and continue to refuse food until after the surgery tomorrow.
I walk on while Charlotte stares at me with watery red eyes. My child is totally dependent on me. She cannot even hold up her head. She needs my help with everything. What’s more, as long as she cannot talk, I am her spokeswoman.
The floor is still gleaming wet, and an acrid smell of chlorine hits my throat. Someone must have just scrubbed it. I start coughing, having a hard time catching my breath. I need to get out of here as quickly as I can.
But I only find myself in another corridor, part of a larger maze where it is just as dark and just as cold. Whenever Charlotte starts moving, whenever she starts to cry, I walk faster. My cadence soothes her. This is the only way for both of us to keep going.
Meanwhile, I have no clue where I am. There is no sign that says EXIT. Perhaps there is no exit. Maybe there are countless underground passages, an infinity of universes, in which all the sick children of this earth roam at night.
At every step my shoes stick to the linoleum, as if the tiles are coated with glue by a trickster who wants to play a joke on me. If I stand still for too long, I may be stuck here forever.
Am I part of a preconceived plan? Is there a place where I am expected? Where someone will say to me, Ah, there you are—I have been waiting for you? Perhaps the doctor with her white coat, who will say, “This is clearly too much for you, ma’am. Now, do hand your child to me.”
Charlotte loses control. She squirms, cries, as she tries to wiggle from my grasp. This was never meant to be. We have taken a wrong turn. We are not supposed to be in the Stygian bowels of this hospital, this inflamed abdomen. We should be at home right now, deciding which cute dress to wear tomorrow, which matching socks to cover her little feet, rejoicing in our bliss.
In the middle of life we meet death. Our family’s priest used to start every funeral homily with those words. I would stand with fifty children from the church choir, before the altar. Next to us was a life-sized image of Mary with her child. Her beautiful baby son, whom one day she would hold lifeless in her arms.
Why am I now in this portal of death, stinking of chlorine? I do not want to give up my daughter. She’s mine—I’ve earned her. For nine months I prepared for her. I gave birth to her. And what’s more, I love her. Insanely. But perhaps that does not count.
As I walk through the hospital’s catacombs, she is getting heavier and my arm starts to cramp. I need to rest, to sleep. Why does nobody care? This is no place for a young mother with a child. And, last, where are the stairs?
I walk faster, folding one arm around her while I reach out with the other to keep my balance. Suddenly I glimpse a man darting in front of me. When he notices me, he runs away.
I run the other way, enter a random corridor, go through a door on the right, and then turn left. But just when I think I’ve finally lost him, I see him again. Who is he? What does he want? Playing a sinister underground game of hide-and-seek in the middle of the night?
Then I feel a chill. It is Death, of course. I thought I got rid of him, outwitted him, only to find out he is hiding here, in the basement of the hospital. Too clever to be fooled. With my last bit of energy I clasp my daughter even closer to my chest. Exhausted, I fall down. Everything around me dissolves into blackness.
The next morning a woman in a white coat shakes me awake. I’m in the high metal bed. Charlotte lies on top of me, breathing heavily. I am extremely tired. “I have been trying to wake you up for a while,” the nurse says. “It is time for the operation. We expect you in ten minutes.”
Ten minutes, I repeat softly. Ten minutes is not nearly enough to get myself together. I am made of porcelain, fragile, unable to get up. My stomach is empty. My head still can’t contain the diagnosis.
I try to push away the pain in my head with my fingers. Then I stand on my weak legs. Leaning against the wall, I regain my strength little by little. If it is for my child, I can do anything.
But when I arrive at the nurses’ station, it is not Charlotte’s turn. And still I’m not allowed to let her nurse. How did I let us get into this situation? Why did I not take charge? Charlotte fights and screams for half an hour and then gives up, collapsing limply against me.
When she is finally called by the nurse, she has to be pried off me. I beg to be allowed in the operating room with her. She is my child, I plead, I ha
ve to protect her. But I am left behind while they roll her away from me. A little girl on a bed too big for her. She slowly disappears down the long corridor, while I lie in cramps on the sofa in the waiting room.
When Robbert arrives, he takes me in his arms and presses me against him. I relax somehow. This unfathomable waiting is easier to endure together.
There are no other people, no magazines, not even a brochure in the room. The walls are bare—no paintings or kids’ drawings, no posters about diseases. It could be the jury room in a courthouse, where we face our verdict. Or an airport lounge, before we head out on a journey to God knows where.
High in the air outside, I see a wispy puff of condensed steam. I try to follow it with my finger, but it dissolves under my hand. I’m afraid Charlotte’s life, and mine as well, will fade away, just like that, until there is nothing left of it. And, even worse, no one will ever know there was anything there to begin with.
Ninety minutes later Charlotte is brought to us, lying in the same large bed. She has not yet recovered from the anesthesia. Her face is paler than the white sheet. Except for her barely noticeable breathing, she does not move at all. Robbert and I do not dare to touch her.
“Now we know more,” begins the oncologist later that afternoon. He is a somewhat chubby man with a reddish mustache, which makes him look older than he probably really is. It is 5 p.m. Robbert and I sit in his office, across from one another on low chairs.
Two medical students with perky ponytails stand in a corner of the room, huddled behind their notebooks. “Is it okay if they are here?” the doctor asks, looking toward the girls. I nod. I am afraid that if I say no, they will disappear. Who knows, they may turn into my guardian angels one day.
I hold Charlotte firmly in my arms. Through the fabric of her hospital gown, I can feel the little plastic clip on her umbilical cord.
The results of the bone-marrow biopsy are on the table in front of the doctor. A stack of loose papers in a folder, with a sticker on it with her name: Charlotte.