Saving Charlotte

by Pia de Jong

  “The results confirm what we already know,” he says. “Charlotte was born with a rare but extremely dangerous form of leukemia. Sadly, her prospects are not good.”

  His voice sounds flat, rehearsed, scripted. He wants to do this properly. He knows it is important. He knows that the girls behind him will take notes. He knows that I will remember this conversation for the rest of my life.

  “We have to discuss the treatment plan,” the doctor continues. “Choose what is best for Charlotte.” He pauses. “The only thing we can offer for leukemia is chemotherapy,” he says. “Unfortunately, chemo is very dangerous for children. For newborns, it is so dangerous that it can cause them to die. And if they survive, the side effects can be severe. They can become blind, infertile . . .”

  The rest of his words I don’t hear because Charlotte is slurping loudly from my breast.

  He looks at her. “To be honest,” he says, “we don’t know what is best for Charlotte. So little is known about this disease. Only a few articles exist to gather information from. Most children have been treated with chemo, almost always with a bad outcome. With some, the doctors postponed the treatment until the child was older and stronger. A few did better, but that was only temporary. The leukemia returned, and they died after all.”

  Charlotte is done drinking and starts to burp. I gently pat her back.

  “Can I see those articles?” Robbert asks. “I am a physicist— I know how to read scientific papers.”

  The doctor gets the articles out of the binder and puts them in front of us. My eyes wander to the first sentence: “In general, congenital myeloid leukemia is deadly,” I read. Below it, a graph. An x-axis with codes, a y-axis with age. Black bars with different heights. Every one of those bars depicts the life of a child.

  The room starts to move, and slowly I leave my chair. I become a bird, floating above the room, above the doctor, above the blond girls with their notepads. I see Robbert leaning over the articles. Far below me, I see myself, the mother who just gave birth, with her limp, pale child in her arms.

  The doctor continues to talk, but I no longer hear him. I just see his mouth moving. Charlotte kicks softly against my belly. Slow shifts, then sudden kicks. Movements I recognize from when she was in my womb.

  “Charlotte,” I say aloud, as if I am waking up from a dream in which she told me her name.

  Through the closed window I can see meadows behind the hospital, great open fields filled with the lush green grasses of summer. I can already smell them. If I were running there, the grasses would bend, then ripple back with every step I took. It would be like dancing with my child in my arms.

  Farther and farther away I would go. At the end of the meadows, I would cross the highway, very carefully, and from there run over the cobblestones and the asphalt sidewalks into town. Oh, it would take some time. As darkness would fall, I would hold her even closer to my body, but I would get there. With blisters on my feet, I would reach the canal. I’d open the door of my house and climb the stairs, the thirty steps of the spiral staircase, until we reached the bedroom of our old, proud house.

  The doctor coughs, trying to get my attention. He wants to know what I think.

  “About what?” I ask.

  “The treatment,” he says.

  I reach for my bag, which I had put on the floor near my feet. My red backpack with all the things I had packed the day before: my toothbrush, my pajamas, her lavender knitted vest with the zebra embroidered on it. I zip it shut. Then I put on my sweater and put Charlotte snugly in her sling. I kiss her and stand up, pulling my backpack over one shoulder.

  The room is still. The girls have stopped writing. They stare at me, as does the doctor, who looks at me with worried eyes.

  Suddenly I long for the sweet-and-sour smell of freshly cut summer grass.

  “What are you doing?” the doctor asks.

  “I’m leaving,” I say.

  “Why?” he asks.

  “Because I am,” I say. Charlotte presses herself against my body.

  “You cannot leave just like that,” he says. “We are here together to discuss the treatment plan.”

  I search for Robbert’s eyes. He will understand.

  “We are not going to treat her,” I say. “We are going home. All three of us.”

  “But your daughter is sick,” the doctor says. “You cannot leave, just like that.”

  Robbert now stands up too. I know he will follow me, wherever I go. He has from the day I met him.

  “She will get very sick,” the doctor says. “What will you do then?”

  “Why don’t you tell us what will happen?” I ask.

  “We never do that,” he answers. “We only discuss that later, when the disease progresses.”

  “I want to know it now,” I say, sitting down again in my chair. I decide not to leave before I have the answer.

  “Well, then,” he says softly. He turns to the girls and says, “This goes differently than we are used to.” To us he says, “She will become weaker. And very pale.”

  He stops talking. He finds it difficult to discuss these painful things.

  “What will happen then?” I ask. I cannot stand such reticence. I would rather know than have to guess.

  “She will get bruises,” he says, “at the slightest touch.”

  I picture Charlotte on the big bed in our bedroom—the boys and Robbert all close to this pale child with blue bruises, quieter than she is supposed to be. In the dusk her skin gives light. Our girl.

  “How will the end be?” I ask him.

  “I will be honest,” he says reluctantly. “In the end she will spit blood. That will be difficult to watch.”

  “We will make sure she can die at home, in her own way,” Robbert says.

  The air inside feels heavier. The two girls lean against the wall. Their arms with the writing pads and pens hang at their sides.

  “Are you sure this is what you want?” the doctor asks. “Just waiting, no treatment? Parents always want to do everything for their children.”

  “We do nothing,” I say. “That can be a lot.”

  “Will you be coming for consultations?” he asks.

  “Yes,” Robbert and I say simultaneously. We cannot do this on our own. We know we need this gentle man as our ally.

  “I will do everything in my power to help Charlotte in the best way,” he says. “I will see you next week for her first checkup.”

  The doctor and the girls watch us as we find our way down the corridor.

  Outside, it is high summer. Thankfully, we are once again just the three of us. Charlotte blinks in the bright light and closes her eyes. No one stares at us here. We are an ordinary couple with a baby—new parents who escaped the heat of their house to take a late-afternoon walk to buy an ice cream cone.

  We settle on a bench and watch the boats floating by. A big boat full of students, a boat with a man in a captain’s hat and a woman in a bikini on the forecastle. A yacht full of cheerful people drinking champagne. All the boats sail high on the waves, the wind fills their sails, the city laughs. I want to wed myself to this simple pleasure of a summer day in the city, a couple with their new baby out in the sun.

  A fully rigged sloop sails by slowly. On the bow sits a girl in a tight red dress who is flirting shamelessly with the man behind the wheel. I flirted shamelessly with Robbert when I first met him.

  I could sit here for hours. Stealing time from the future and pulling it into this moment, this city, this summer. Save it where I can find it and enjoy it forever.

  Robbert pulls me out of my daze, and I leave unwillingly. My legs are asleep, my ankles weak. My daughter is two weeks old. I am two thousand years old, and at the same time I am a scared child.

  The house embraces us like a feather cloak. It’s a relief to be here. I am comforted by familiar things. The burn mark on the mat in the front hall, the porcelain lamp with the crack, the children’s drawings of dinosaurs stuck on the refrigerator with magne
ts. I put my right hand on the tin wall tiles and let their pleasant coolness reassure me. It’s as if we have been away for months and the house missed us.

  The sounds of our voices echo in the marble hallway. They mix with the usual honking in the alley, bumping of bikes over cobblestones, and constant footsteps of men coming for the hookers.

  Charlotte is lying like a rag doll against Robbert. Her right hand hangs over the edge of the yellow sling. She’s still groggy from the anesthesia.

  “Please don’t worry, Charlotte,” I say. “We’re not going to leave. From now on you will be here with us.”

  Robbert walks gingerly up the stairs, carrying Charlotte. I follow behind them. The old wooden steps creak. At the door to our bedroom I stop. Thank God, everything is still the same. The yellow curtains, the woodchip wallpaper. The bedside table with a copy of the newspaper the day her birth announcement appeared. Filled with happiness, we announce the arrival of our daughter Charlotte. The cards, the daffodils in a vase, still fresh.

  The duvet is exactly as we left it, kicked into a messy pile at the end of the bed. In the mattress is a hollow where we were tangled up in deep sleep.

  Robbert leaves to pick up the boys. I lie down on the bed with Charlotte and inhale the lingering aromas of stale sweat, baby shampoo, and the disinfectant that we carried back from the hospital on our clothes. She searches for her favorite place in the crook of my arm. Together we stare at the ceiling until her eyes fall shut.

  My love for her is so big it overwhelms me.

  “Charlotte,” I whisper, “stay with me.”

  I kiss her as gently as I can, again and again. My tears drip onto her hair, fine as cobwebs. From her half-open mouth I can smell her breath. I savor her aromas, trying to find words for them—sweet, round, warm. I want to remember that on this very day she smelled sweet, round, warm. I want to bottle it, to keep it with me. For later. Delicate veins shine through her pink skin, as if backlit. Her eyelids twitch occasionally, like the wings of a butterfly resting in a breeze.

  Her face still surprises me. Her features keep changing by the hour. I want to know her by heart, I want to be able to describe her thousand faces with my eyes closed, but I can’t. She is a beautiful angel with clipped wings.

  Her head weighs so heavily on my arm that she pinches a nerve. I shift her, oh so gently. But she immediately returns to the exact same niche on my arm. As if she has no other choice.

  Her sleep is deeper, her breathing slower. She reminds me of a Madonna in a Botticelli painting. Mysterious. Knowing. Beguiling.

  With my fingers I try to trace the outline of her face in the air, but my hand has no sense of direction. Maybe I should just look at her and do nothing else. If I, her mother, can’t describe her, who can?

  When I try to stand up, her eyes pop open and she looks at me, startled. As if my every movement is an attempt to leave her. “It’s okay,” I say, “I’ll stay with you.”

  I let my index finger rest gently on the spots on her feet. My finger seems to graze the surface of a clear pond, leaving a trail of blue bubbles behind it. Night birds with silver wings alight to sit on the bank. They stare at us, then fly away. Clumps of dry dirt stick to their legs.

  Outside, the night turns and rolls, restless as always. A drunk yelling, car doors slamming, a man whistling to attract the attention of a girl. A door squeaks open and bangs shut again. Sounds I treasure, since I know them so well.

  Will I ever be able to sleep again? Do I want that?

  Sleeping is a waste of my time, of Charlotte’s time. I want my heart to become like a freshly plowed field where I sow every one of her life’s moments. I will harvest the experiences later. I want to prepare myself for a life filled with memories of her.

  I feel myself sinking into sleep, but then, just in time, I wake up. No, I can’t sleep. I have to watch over her, make sure her sleep is not too deep. So that she will not slip unnoticed into another world, from which there is no way back.

  That night Charlotte and I are both awakened by shouts from the street outside. An ordinary argument, as we have been hearing here often. Mackie’s nasal tenor sounds loud above it all. The fight escalates: more shouting and screaming. Sirens wail over the canal. A woman weeps. Then it is quiet again.

  I do not know how long we have been awake. Any sense of time is gone. Charlotte and I search for each other’s eyes. We belong together; we are part of a whole. She depends on me, but I depend on her as well.

  Here is what I know. It is August. I have a daughter. Her name is Charlotte. She sleeps in the crook of my arm, where she pinches a nerve. It hurts, but I do not care. She still lives, she still breathes. I can still smell the sweetness of summer in her hair. It’s real, here and now, and for that very reason I let myself be embraced by her scents. I try to become her smells.

  Parents always want to do everything for their child, the doctor had said. Not us, I had replied that afternoon in the hospital. We do nothing.

  Why was I so determined to take her home? Was it the graph showing the statistics, which so clearly demonstrated that children have little chance against this disease? Was it hearing about the side effects of chemotherapy? What all that poison would do to her delicate body? Was it my own fear of facing this ordeal?

  I turn on the light and flip through a magazine I brought home from the hospital. It is glossy, filled with color pictures of little kids. They are photographed in what could be a park with a playground. Come here, all you young ones—there is room for everyone. We will make sure you have a wonderful day. We will play in the sand and pour water from plastic buckets in bright colors.

  But if you look closer, you see what you do not want to see: a tube in one girl’s nose, a port for IVs in another one’s forearm; children with puffy faces into which their hollow eyes disappear. These kids are outcasts, stranded on an island from which it is difficult, if not impossible, to escape.

  In one picture a scrawny little boy with bony knees beneath his cycling shorts does his best to look happy and excited for the photographer. Next to him stands his father, a tall blond man holding a brand-new red bike. He also wears cycling shorts. The father, I read below the picture, is on a bike tour to raise money for an experimental drug for his son, who cannot be saved by regular treatment.

  I keep on reading what the father says. Even if the chances are only one in a thousand that this drug trial will save my son, I do not want him to miss out on this opportunity. I want to justify to myself that I have done everything for my child. Otherwise I would blame myself for the rest of my life. If I have to wait until the drug is approved, it might be too late. What does it matter that the drug has side effects? As long as he is alive, as long as I can keep him with me.

  The magazine is already a few months old. When did the father give this interview? What happened? Did he indeed finish the bike ride, collect enough money? Did the boy get the drug? And, most pressing of all, has the father of this boy with his bony knees been able to keep him? Can he still hold him at night before he goes to sleep?

  In the back of the magazine is an interview with a specialist undertaker. A woman speaks about designing custom funerals for children. How artisanal that sounds. Suits and shoes are custom-made, kitchens sometimes are, but children’s funerals? Should I find this touching or terrible?

  Think about a basket, the interview continues in purple lettering. A resting place nature provides. Next to it is a picture of a wicker basket festooned with ribbons.

  A wicker basket: so sweet, so innocuous. As an infant I slept in a cradle made of reeds. A blind peddler sold it at the door when my mother was expecting my elder brother. She sewed its lining from yellow fabric. On the sheets she embroidered a mother duck with a procession of ducklings in baby-blue silk.

  But someone made this basket knowing that one day a mother will put her dead child in it. Then cover it up for the last time.

  The sweetest, the loveliest, and the dead. I cannot reconcile them. A mistake made when hum
ans were created, a combination that should not be.

  I close the magazine and put it away. But its images and stories don’t really disappear, they come back and haunt my half-sleep. The boy and his fearless father, who wants to cycle to the end of the world and back in order to keep his son with him. The girl with the cornsilk hair and blue eyes in the back of the hospital room who painted the air with pointed fingers. And, most of all, the boy with dark curls, as beautiful as a prince, who so quietly died in the room across from us.

  Nothing, I had said in that hospital room when the treatment plan was discussed. We do nothing.

  Robbert and I were not planning to visit Fatima. It was our first holiday together, and we decided to go to Portugal, a country neither of us had been to. But when I saw the name of Fatima on the map, I suddenly was transported back to my classroom with Sister Josepha, the head of my elementary school.

  This is what she told us. Three poor peasant children lived in a mountain village. They could not read and write. One day they were herding their sheep when something unusual happened: Mother Mary appeared to them. A true miracle, Sister Josepha explained, whispering in awe.

  She was a tall nun, dressed in a dark blue habit with a hood. We could see only her face—her deep-set eyes, her cheeks with the pallor of beeswax. She folded her hands, standing in front of a painting of the miracle that hung on the wall in the classroom. In it the three children were shown in rags and with dusty hair. Above them hovered Mary, in a beautiful blue dress with a white collar. Above her blond hair gleamed a halo of gold.

  “I’d like to visit Fatima,” I said to Robbert when I saw its name on a road sign.

  “Fatima?” Robbert asked. “What’s there?”

  “A pilgrimage,” I said.

  “Why?” he asked. He knows I am not religious.

  “Just because,” I said.

  Soon we are driving in the murderous hot sun over dirt roads through peasant hamlets. After a while we pass an inn with a kitschy sign of Mary with the three little shepherds. A man on crutches slowly crosses the road in front of us. I brake just in time to avoid hitting him.