My four-year-old daughter is wearing a crown like the Swedish Saint Lucia, only Clara’s is made of rubber straps that hold in place the electrodes recording her brain waves. “You’re a princess now,” I tell her, squeezing her sweaty little hand.
Clara’s hospital roommate Carlos is curled up on his cot like a woolly caterpillar, playing a game on his phone. A fifteen-year-old girl with thick glasses occupies the other bed, sleeping deeply despite the constant din of nurses, doctors, cleaning staff, and visitors. Ilyanna is her name. Next door are a set of twin babies, with a worryingly thin mother, and an infant called Maximilian, who takes gurgling breaths through his tracheotomy tube as he crawls about the playroom, smiling at everyone. His parents bundle him up and pace the balcony late into the night.
This section of the hospital in Würzburg, Germany, is called the Blue Mountains. Some of the kids here sit up in their beds, others rest. Some will leave today, others later. Some will go home, and others will be moved to different hospitals. When the resident clowns, Candy and Baguette, visit our wing, Baguette pretends to cry, and the kids laugh. He juggles his striped pins, somehow suspending all five in the air at once.
Carlos has told me he is too small for his age and is being tested to see if he qualifies to take part in a study on growth hormones. He takes a break from his game to call his mother and say good night. Seconds after he hangs up, he calls her back to ask her to bring his slippers tomorrow. He says good night again, calls her again, then once more, talking under his sheet as though this might keep us from hearing the conversation. I can’t help noticing that there is never any mention of a father.
Ilyanna has diabetes and can’t get her insulin levels right. She says her parents hate each other, then she pushes her glasses up on her nose. She has been through several failed foster settings and now lives during the week in a juvenile home.
Other parents see our little girl running up and down the hall, or performing a dance in the playroom, or climbing onto a stool to get the Funny Bunny game from the closet, and they ask why we are here. I have told the story so many times to so many different doctors that I’m beginning to wonder if I’m keeping the details straight. Was it four in the morning or six? What woke us—the trembling and shaking, or the lack of breathing, or the choking sounds?
Two abnormal EEGs later, we now know our daughter had a short epileptic seizure. We are waiting for an MRI to confirm that there are no other abnormalities inside her head. (The possibility of a tumor has been mentioned.)
We still don’t know what caused the spikes in her brain waves. After hearing several doctors say the word spikes, Clara lifts my hair to whisper in my ear, “Am I a hedgehog now?” Her own explanation for her seizure is that she was dreaming she was lavender blowing in the wind. We have started referring to the quivering, shaking episode as her “lavender dance.”
Christmas is approaching, and we’ve given Clara an Advent calendar that plays birdcalls when you open each day’s window. Today’s bird, the wren, has a sweet, chittering song—a relief from the hospital’s beeping monitors. Clara has a new roommate, a girl about her age who has been paralyzed from the neck down in some kind of accident. Her mother doesn’t speak to anyone but the doctors and spends the day rubbing coconut oil on the girl’s legs and reading her stories. Later, as I try to sleep, I can hear the mother crying. The next thing I know, she is waking me to ask me to please stop snoring. I roll over and spend the rest of the night watching Clara’s monitor.
We are staying overnight so we don’t lose our inpatient status, which is supposed to allow us quicker access to the most important tests. We pass the time drawing pictures, playing Funny Bunny, and giving Mr. Bun Bun shots and ports. I am often impressed by the other parents’ resilience.
Johannes and I lost our first child at thirty-six weeks. Clara was born two years later, when I was forty. Until now she has been a healthy girl, receiving a perfect Apgar score and going to the doctor mostly for checkups. I can still see her happily hopping across her pediatrician’s office on one foot, placing the blocks correctly, and acing the hearing and vision tests. What did we miss? I search my phone for answers. What causes childhood epilepsy? Can you die of epilepsy? Is epilepsy more common in children of older mothers?
My job is to prepare Clara for the tests, to escort her through the labyrinth of hospital buildings and elevators, to explain—in words a four-year-old can understand—what is going on, to advocate for her, to distract her, and, worst, to hold her still when needles are being inserted and ports are being placed. I whisper into her hot, teary ears to breathe, just breathe.
The MRI—or the “tunnel test,” as we are calling it—is the final one. She is not allowed to eat that morning, and for some reason the nurses bring me no breakfast either, probably thinking I won’t want to eat in front of my hungry daughter. So I feel faint when it is finally our turn around 1:30 pm and the doctors begin injecting the anesthetic that will keep Clara in a sleeplike state while she is in the “tunnel.” Partway through the injection, the port blocks, and the doctors scramble: “It’s not working. Quick, get me something for all this blood. We need another needle! Hurry!” I hold my half-sedated and struggling daughter while they pull out her first port and put another in her wrist, this time with no local anesthetic.
In the hallway where they send me to wait, I tell myself to breathe, just breathe. A man sitting next to me reaches into his pocket and hands me a tissue. A woman touches my arm, tells me to put my head between my knees, and asks if there is anything she can do.
When the doctor finally comes out, he walks straight to me. I wait for him to say Clara has not awoken, something went wrong, she lost consciousness and they can’t get her back, which is almost what happened to my elderly mother when she went under general anesthesia: She lived but never came back mentally. Through the blur of my tears I watch the doctor’s mouth carefully, expecting it to form the words You don’t deserve a child that sweet and healthy anyway. She is gone, just like the last one. The hallway here looks the same as the ones my mother walked absently in her Alzheimer’s-care home. The smell is the same, the patients’ confused looks are the same, and I feel the same desire to crawl through all the wires and needles and tunnels to feel my daughter’s body against mine, to touch lavender in the summer wind.
What the doctor says instead is “You can come get her now.”
Clara is lying on a hospital bed, still asleep but, yes, breathing. A nurse helps me wheel her back to the Blue Mountains, where Clara wakes and wants to go to the playroom right away, despite tipping over into my arms. She has pooped her pants in the tunnel, I notice, and I ask a nurse to bring me some warm water and a washcloth. Then my husband and mother-in-law arrive, and I step out for air.
The outside of the hospital is an active construction site. I walk quickly past the orange lights to where the city turns back into countryside. A machine here has harvested an enormous pile of sugar beets and left them at the edge of the field, large and grayish white, like stones. Later they will be turned into sugar, but for now they wait on a white sheet, quiet as sleeping children. I kneel at their side. Corn stubble surrounds the pile like ranks of soldiers. The light will soon return; we are only days from the solstice. Please, beets, I begin, folding my hands. Please.
Today is the sixth bird of the Advent calendar—the crested tit—and also Saint Nikolaus Day, when children’s shoes are filled with treats. The fire department has arranged for men dressed as Santa to belay from the roof, stopping at each floor. We put on our coats to meet them on the balcony that connects all our rooms, and for a half hour everyone seems to forget where we are. The six Santas all come down at once, holding their beards in place with one hand and their giant sacks in the other. A local TV news crew has shown up, and Carlos tells the reporter he has just learned that he doesn’t need growth hormones after all—he’s likely to grow on his own. He can go home tomorrow. It’s the first time he’s put down his phone since we came.
Ilyanna says she’s too old for this. All she wants is pelmeni—a type of Russian dumpling—for lunch and to get out of here. “The only person here who makes me feel well is Patricia the cleaning lady,” she says, rolling over and putting in her earbuds.
Clara is given a bag of chocolates and can’t stop jumping up and down.
That evening, our room lit only by the hall lights leaking under the door, the full moon peering through the drawn curtain, and Carlos’s smartphone, I wonder again what has caused Clara’s epilepsy. Was it the way I poked my belly over and over during the pregnancy, needing reassurance that she was alive? Was it the shock of her cesarean birth? My not wanting her to sleep too deeply lest she not wake up? Or is she simply lavender, blowing in the wind of a dream I can never be a part of? In any case, she has more humor about the situation than I do, angrily calling me an “EEG” when I make her brush her teeth, a “tunnel test” when I say she has to put on her jammies right now. “You’re such a seizure!” she shouts, laughing.
My life has stopped while she is here in the Blue Mountains. I haven’t thought about work, haven’t washed my hair in days. I’m beginning to long for what I now recognize as the luxury of the daily grind: taking out the compost, arguing about petty things, using our own toilet. My husband comes and goes, bringing us healthy food and supplies and reminders of the outside world. If it weren’t for the Advent calendar, I would have no idea how long we’ve been here. I lie awake listening to the quartet of heart monitors while, outside the window, clouds form and re-form in the moonlight. One looks just like my old math teacher, who died young in a biking accident. The morning sun shows up lazily around 8:45.
Finally we are given good news. The MRI is clear. There is no tumor. Clara has a childhood form of the disease, called “Rolandic epilepsy,” which she might even grow out of. I never thought I would call learning my daughter has an illness “good news,” but it is. Tomorrow we will be released back into the old world, which is now the new world.
I begin gathering our things, preparing for Clara’s discharge. After dinner, which includes a glass with a rolled fish inside it that makes us all laugh—how could they expect this to make anyone feel better?—Ilyanna begins busily packing up her things as well. Her young father arrives with his girlfriend to bring her home, and they introduce themselves shyly. We talk happily as we shuffle around each other, two families pushing clothes and toiletries quickly into bags, aware that we may never see each other again. Ilyanna’s favorite cleaning lady, Patricia, is on duty, and she jokes with her about not having eaten enough of the fish, a pickled herring fillet called a rollmops, which in Patricia’s opinion is delicious. We discover that we are all from the same part of Würzburg, even Patricia, and we end up chanting, “0-8-2!”—the last three digits of our postal code—dancing and raising our fists in solidarity and nervous euphoria. Then Ilyanna and her father leave, her bed is rolled out, and a new clean bed gets rolled in.
The next morning, while we wait for the final release papers, we draw alley cats in Clara’s journal and lift our feet and move various suitcases and chairs out of the way of the cleaning staff. Morning turns into afternoon, and Ilyanna is surprisingly back again, standing in the hallway with her duffel bag, checking in as we are given the OK to leave the Blue Mountains. When asked why she’s back, she mentions her blood-sugar levels and shrugs. As we drive away, I wonder what fate will bring our former roommates and neighbors. Although I already have a strange feeling of nostalgia about our time there, I hope never to return. Clara is happy to be outside again, to see snow, to get a soft pretzel at the bakery, and to finally be back in our apartment.
In the days that follow she is close to her old self, though her journal is soon filled with pictures of cats in tunnel tests, farting big black clouds on all the doctors, and I often find her reenacting scenes from the hospital with her stuffed owl, Fikutu: spreading paper towels over the couch to turn it into a hospital bed, inserting knitting-needle “ports” into Fikutu’s wing, telling him, “Sorry, but you’ll have to stay another whole month!” and then jumping up and down as though she derives pleasure from this. She asks me to conjure my wildest owl-pain noise while I make Fikutu tilt his head at her, the four-year-old doctor in her painting smock.
The Advent calendar is almost completely opened, and Clara can now identify a dozen birds by their calls. My husband takes her to his parents’ house for a few hours so I can walk into the city and do some last-minute Christmas shopping. Wreaths and big red balls have been hung along the main street, as they are every year. The river is high and loud, the castle like a toy on the hill in the background. I wonder if Clara’s medication will work, if it will have side effects. The market offers fish, and evergreen boughs for homemade wreaths. I buy one of the ready-made ones with four candles on it at a discount, since we’ve already missed so much of Advent. A man on a sleeping bag asks for coins, holding a hand-lettered sign above his bare legs. Someone has dropped a mitten. Tourists with selfie sticks take photos at the entrance to the Christmas market, and I wonder how I will ever be able to sleep knowing Clara’s seizures are most likely to recur at night. Will she be traumatized from all the pokes and prods she has suffered? Will we? I buy her fluffy pink earmuffs, a new drawing book, and a juggling set, then walk home over the Old Main Bridge. Below me, where the barges carry coal through the lock, a lone duck preens his bright-purple feathers. Up top, an older woman breaks bread into tiny pieces and throws them into the air.
