by Pia de Jong
This afternoon my parents are walking with their friends and acquaintances to a small chapel in Roermond. Kapel in ‘t Zand, the chapel in the sand, was built on the spot where centuries ago a shepherd found a statue of Mary in the gritty soil. Now it is a place of pilgrimage, where people gather from all around.
At that precise time I walk with the kids on my own pilgrimage, from our canal house to the playground. There I meet Louis, whose face looks puffy. He’s not so talkative today.
“Yesterday I went to bed late,” he mumbles. “I drank way too much beer.” He then starts to pace back and forth.
I sit beside the sandbox and picture my parents: my father in his Sunday suit, my mother in her church dress. They look serious while they pray and beg for mercy for their only granddaughter. Like me, they are scared. Since Charlotte’s illness, we all live on our own island. But the difference is that I can hold her. I can nourish and cherish her. They need to find their own way to help from a distance.
A little later, while I bake mud pies with the boys, I see them entering the chapel at the end of the long road, which, as I learned in school, is exactly one kilometer in length. I know this chapel well. The narrow aisle is decorated with numerous engraved tiles from the pilgrims that mention blessings in spite of adversity. Out of gratitude for the healing of our grandma, of our son, of our dear aunt, they read.
Now my parents dip their hands in the holy water and make the sign of the cross. On their sturdy shoes they walk along the corridor, then kneel at the side chapel. In front of them, behind gold bars, stands the statue where everything started. The small nativity scene, so impressive in its simplicity. Mary is depicted as a young girl with a childlike face, fourteen at the most. In her arms she holds her baby son, who is way too big for her.
Charlotte is lying quietly on the quilt my mother made during the long hot months when I was waiting to give birth. Pieces of fabric sewn together, in different shades of turquoise. She looks serene. Hail Mary, full of grace, my parents pray, in a chapel far from me.
I look up when Matthijs runs to me, his face screwed up into a grimace. “Mama, there’s sand in my eyes,” he cries.
“Don’t rub it,” I say as he jumps up and down in pain. Louis brings a bottle of clean water that I pour over his face. While the pain subsides, he sits besides me, sobbing for a long time.
I don’t think about my parents anymore for the rest of that day.
A chilly morning stroll leaves Charlotte shivering, with blue lips. Her afternoon nap is shattered by shouting in the street. Some boys are quarreling over who gets to see the girl in the window first. Today, more than ever, these constantly horny men annoy me.
I fill the bathtub and slowly undress Charlotte and myself. Carefully I step into the water with her and let the two of us float. We enjoy the water, the warmth, the peacefulness of our afternoon.
I imagine that my ceiling with the crack in its stucco is heaven. A gray sky which will soon break open when the sun starts to shine. Behind the window a cloud drifts by. Charlotte is silent. I blow bubbles in the water, but she does not want to play. Today she is too tired to laugh. I study her skin, a sheet of paper on which blue lakes are spilled. Lakes filled with blood.
I wonder if the tumors are in the same place as before. I try so hard to remember where they were. I should have mapped them. Some have disappeared over time, but then new ones show up in different places. In the beginning I woke Robbert when I saw one, or I called him, panicky, at work. We would bend over her body to study the spots. Could this be the beginning of the end? we wondered. We don’t do that anymore.
Before she was born, she floated inside me. Sometimes she somersaulted, and then I tried to catch a foot or a hand. Where I was, she was. Why is my little girl sick? Did something go wrong during pregnancy? I have wondered about this so often. But no matter how much I torture myself, no answer makes sense. Everything went according to plan; nothing unusual happened. Yet it continues to gnaw at me. How is it possible for a baby in the womb to develop leukemia?
One morning in the hospital, at the end of Charlotte’s checkup, her oncologist puts his hand gently on my arm. “I would like to take a new biopsy,” he says. “From her foot this time. I’m sorry,” he says when he notices that this upsets me.
I’m not surprised he wants to know more about the stubborn, large nodules on her feet. “We want to examine them,” he says. “To understand what’s going on with the DNA. Maybe the new insight we gain will help her.”
“I have to think about it,” I say.
“Of course,” he answers. “Let me know.”
That evening in my bedroom, I put my nail under one of the limestone bumps behind the wallpaper and try to loosen it, the same way I did as a child when I was afraid in the dark. My finger gets white with the powdery dust inside. I taste and smell chalk.
“What do you think?” I ask Robbert when he comes home.
“Maybe it’s worth it,” he says. “Maybe they’ll find something that can help Charlotte, or perhaps future children.”
Under his eyes are violet pools where his skin is thin and transparent. Ever since Charlotte became sick, I have neglected him, barely even touched him. Day after day we jump on a broken trampoline. Sometimes high, sometimes low. Occasionally we fall off and have to climb back on, because we have no other choice. I stroke his back, trying to rub away the desperation we both feel.
“Your hands are shaking,” he says.
“I don’t want to lose you,” I say.
“We won’t lose each other,” he says, and pulls me toward him. In the dark we find each other. His mouth tastes mine; my hands roam his body, which I know so very well.
The next day we make an appointment for the biopsy. I mark the date in large block letters in my otherwise empty datebook.
“Hey,” hisses the blond girl as I walk by. As if I am the whore and she a customer who wants something from me.
I stop in front of her window. She wears jeans and a diaphanous blouse. Her hair falls over her shoulders and breasts; her lips are velvety purple. She reminds me of those cheap paintings, so kitschy they become strangely beautiful.
“How’s your baby?” she asks, fingering her necklace. “I think about her all day.”
She waves at a guy who eyes her, a twenty-something in jeans and a hooded jacket, one of the hundreds of guys roaming past her window in jeans and a hooded jacket. “Hey, you,” he says. “See you later.”
“Whenever you want, sweetie,” she says in the singsong voice she reserves for her clients. Slowly she turns her face back to me. “Every day I pass a church,” she says. “It’s ugly from the outside, but inside is a statue of Mother Mary. You know, I don’t believe in God and all that. But the statue, it’s so beautiful, it’s almost real. I burn a candle for your daughter. I will keep doing it until her sickness is gone.”
“Hello.” I hear a familiar voice. Elated, I look up and see my brave little friend.
“Hello,” I say, savoring his presence. His wet hair; the raindrops beading up on his forehead. “Is it raining outside?” I ask.
“Yes,” he says, “but that doesn’t bother me at all.”
“Your cast should not get wet,” I say. “You should wrap it with plastic when it rains.”
He waves my worries away. “Look,” he says. “Your signature is still there.” He points to my red felt-pen marks, faintly visible.
“Isn’t it about time for the cast to come off?” I ask. “It’s been there so long.”
“Not yet,” he says. “The doctor says I have to be patient.”
“It takes a long, long time,” I say.
He jumps off the windowsill into my bedroom.
“Careful!” I shout.
The soccer ball bounces through the room and rolls out the door. Once again, Sammy runs after it.
“Wait a minute, please,” I say. “Bear with me—I have waited such a long time for you. Don’t leave so fast.”
I get up and try to
grab his arm, the one without the cast, but I miss him and tumble backward in time.
I’m eight years old, playing outdoors on a beautiful day in May. I jump rope on the sidewalk behind our house. A little behind me, my father is talking with the neighbor. My mother is inside, working on a jigsaw puzzle with a thousand pieces on the dining room table. I’m wearing the new white dress I wore a week ago, at my first holy communion. I am not afraid of anything. Leon, who always hangs out behind our house, will not dare come near me with my father around.
The sun is so bright I have to squint to look at the blue sky. Not a cloud to be seen. High up, a straight white chalk mark slowly appears, like graffiti in the sky. Condensed water droplets, I learned in school, from an airplane. I jump up and try to catch a dancing butterfly out of the air.
Next I am lying on my back on the street. My arm is bent in a strange position. I dare not move.
“Papa!” I shout.
“I’ll be there soon,” he says without looking up. He leans against the garden gate with his arms folded over each other.
“Papa!” I cry louder. Why doesn’t he come right away? I don’t remember ever being in such pain. I close my eyes against the bright sunlight. All my thoughts dissolve into dark reds and blues. Then my father walks over and lifts me up. Cradling me like a baby, he carries me to the car.
That afternoon my father and I wait in the damp and chilly corridor of the city hospital. I cringe when the X-ray nurse unhesitatingly cuts open the sleeve of my communion dress.
“The plaster cast should come off after six weeks,” says the doctor. “Just in time for the summer holidays.”
My friends write their names on my cast in rainbow colors with their felt pens. I learn to live with it and to ask for help with difficult things like tying my shoelaces. But after six weeks my arm has not healed. The doctor decides the cast needs to stay for another six weeks. That whole summer I sit at the edge of the public swimming pool and watch my friends having fun. They disappear underwater and come up again, shaking water droplets off their heads, which glitter like diamonds in the sunlight.
By the end of the summer, all their names on the cast have faded.
“Please remember that the biopsy will be taken tomorrow,” says the assistant on the phone.
The day I marked in my calendar has come. Something is going to happen. I need to prepare myself, even if it’s something I’d rather not prepare for.
Robbert and I soak Charlotte in lukewarm bathwater, wrap her in a soft towel, and pat her skin dry. I rub her feet with rose oil and kiss her toes, one by one. Then I slip them into fluffy socks. She purrs like a kitten.
Outside, spring is unapologetically showing off. The tree in front of our house is bathed in a soft green haze. Beneath it grows a single lemony daffodil. Skirts blow in the breeze around the bare legs of girls who fly past us on their bicycles, chitchatting loudly. The world basks in its superfluous bounty.
Robbert takes the long route to the hospital, from one winding road to another. Maybe he hopes to get lost and end up in a different reality.
Inside the building there are no seasons. The airtight windows do not let in fragrances. No daffodils either, since flowers could irritate the sick children. The colorful playship in the waiting room lies desolate, forever stranded on a deserted island.
I lean against a wall and hold Charlotte firmly in my arms. The hum of the air conditioner drowns out the rapid beating of her heart.
“Is it normal that his heart beats so fast?” I asked the midwife shortly after Jurriaan was born.
“Certainly,” she said. “Don’t worry.”
“But his heart beats twice as fast as mine,” I said.
“That’s because the world out there seems so exciting to him,” she replied. “He just cannot wait to become part of all the joy.”
After a while the door of the treatment room opens. The consultant father comes out, looking confused. His son, whose face is almost twice as big as before, shuffles behind him. The father is unshaven, his shirttail hangs out of his pants, and he looks grim. He is no longer a man with whom I would like to have a chat. Rather, he scares me. We brush past each other, and I manage to avoid his gaze. We both have become unsociable.
Someone comes out to apologize: our doctor has been called to an emergency. I try not to think of possible scenarios, but the image of some child spitting up blood won’t leave my mind. I feel an overwhelming sadness.
When the doctor finally sees us in his exam room, he tries to act as normal as possible, but I know he’s upset. Today his composure is a pose, his smile forced.
As we peel away Charlotte’s clothes, he pulls nervously on his ginger mustache. Then he listens to Charlotte’s heart, takes her blood pressure, and examines her skin. He does what he always does, in exactly the same order. We are silent as usual. But this time he lingers extra-long over her foot. Again and again his finger moves over the blue lump.
Then he picks up a cotton ball and disinfects her skin. The room now smells of alcohol. I hold Charlotte close to me as he takes her foot in his green latex glove. It disappears into his huge palm like a snail into its house. My stomach growls, and I cover it. He reaches out for the syringe next to him.
Then he drops his hand. “I’d rather not do this,” he says, and puts down the syringe.
I feel a strange relief.
“Why not?” asks Robbert.
“I’m concerned,” he says. “What if I damage something? A tendon, a nerve. Something deep inside her foot.” He sits down on the chair beside the treatment table and rubs his eyes. “I would not forgive myself if she would never be able to walk because of this.”
Slowly I turn to him. For the first time we do not look away, but we stare into each other’s eyes. The man who holds the key to the health of the sweetest and most delicate person in my life. Who can read and explain her blood work. He now tells us, in his indirect, restrained way, what we had not dared to imagine: the possibility that maybe one day Charlotte will walk.
It dawns on me that this man, her doctor, has been through so much as well. The same feelings of powerlessness, visit after visit.
At home we bend over her, as we did constantly the first few days after her birth. I put my index finger with its bitten-down nail on the tumor on her foot. The doctor wanted to decipher her genetic code and find her secret. But then, in the end, he backed off from it. What stopped him was not only his fear of hurting her, but also respect for the mysteries in her body. She does it in her own way, he tells me at every examination. He may be right.
“She is changing,” Louis says. “She is starting to act more and more like her brothers. Look at her mischievous smile.”
Charlotte has rolled over onto her stomach on the blanket. She tries to push herself up. It takes her all her strength, but she gets it done. I watch her, astonished. How is she able to do this? When did she get to be so strong?
Louis makes a funny face at her, which makes her giggle so loudly that she gets the hiccups. We all three laugh now.
“She seems to be making up for lost time,” he says. “Soon I will have to get a scooter for her.”
Did he really say that? Louis, who never mentioned nor asked anything about her for a whole year. Louis, who walks around in worn-out shoes and glasses repaired with adhesive tape. A broken man himself, who carries the burden of his unhappy boyhood with him every day, feeling sorrow each time a child is hurt. The patron saint of wounded children.
“The spot on her back has disappeared,” says Robbert. We are about to bathe her. He holds her feet in the water.
Curious, I trace the tips of my fingers along her back. Here and there I press gently. The blue place that the midwife noticed when Charlotte was born has indeed vanished—gone, disappeared, however long I search. As if we cannot find a lake in a faraway forest where we used to swim.
“This is big,” Robbert says. “It was the first spot, the largest. I do not understand how she did it, how it works i
nside her, but she has overcome this one on her own.”
Just as Louis defines his place in the world by pacing back and forth, I do so by constantly walking up and down the stairs. From the kitchen to the bedroom, dozens of times a day. When I feel completely lost, I climb all the way to the attic. There I lie sprawled on the floor, listening to the cooing pigeons, feeling light and heavy-limbed at the same time.
Mackie helps me with things I don’t ask for. He trims the boxwood by my doorstep and sprays oil on the rusty chain of my bike. Fat drops of grease spill on the cobblestones of the alley while he bends over my bike. His hair is getting longer, his beard grayer, his voice deeper. I allow him to do me favors I do not need, because I realize he needs an outlet for his uncertainty too. Besides, there is no way to go against Mackie.
One day while walking downtown I happen to see my reflection in the window of a shop. I scare myself. I have become sepulchral, a pasty shadow in a crowd of busy people. Be patient, just keep waiting, says the oncologist at each visit. We still don’t know what turns Charlotte will take. We just hang in there.
“What’s taking them so long?” asks Matthijs. With the children I sit at the window on the couch, waiting for my parents, who will visit us today. The boys have lined up their toy dinosaurs in a row on the windowsill. A long procession of plastic animals on the road to Paradise Valley, as Jurriaan explained to me earlier. The row goes up the stairs, all the way to the pillow on the bed, where a small stuffed baby dinosaur lies.
“How much longer do we have to wait?” asks Jurriaan, who then spills his glass of milk on the floor. The girl across the alley waves languidly at him. He stretches out his hand, which holds a T. rex. Mesmerized, he looks over into the brothel, where a man sits down on the bed and glides his hand higher and higher up her thigh. “Mama,” he says, “why is that girl behind the window always in her panties?”