We arrive at the pediatric intensive care unit in the middle of the night. My son’s kidneys have failed. He is nine years old. The surgeon inserts a catheter into Tien’s neck so that he can start dialysis where he remains, quiet and unresponsive. He has been transferred via ambulance from Kaiser Oakland, across the Bay Bridge, to the University of California, San Francisco, Children’s Hospital. I have never entered a pediatric ward so silent – or maybe something has happened so that my ears no longer function normally. Clipboards are waved at me. Are you the mother? Sign here, on this line.
Someone is talking to me, someone from the pharmacy. I can barely understand the words, talking about an address for when my son will leave the hospital. The words make no sense to me. Do you see him over there, silent and still, without any movement? Does he look like he’s going to get up and walk to this address you’re asking about?
Countless doctors file through the room. Their faces seem a blur, except for the medical student named Theresa, my mother’s name. It’s her job to keep pressure on my son’s surgical incision until it stops bleeding. The nurses keep handing her changes of gauze. She sits for half-an-hour, then an hour, and still she sits.
Dawn arrives outside the hospital, but inside the PICU, the pediatric intensive care unit, the light remains the same, never changing. Doctors assemble outside for their morning rounds. The initial diagnosis was lupus, but now they agree that the kidneys failed so suddenly and so completely that there’s another disease underlying the lupus. A blood disorder, something rare and unexpected.
Sitting by the hospital bed of your child, you’re waiting for a sign. The dull, continual drumming of fear drowns out your thoughts. You’re afraid that there’s no flicker beneath the eyelids, no movement of the hands, no movement at all.
An hour, two hours, a day passes. Everything inside you stops.
A doctor is talking, but the words don’t make sense. Fluid is collecting in the abdomen, your husband explains, repeating what the doctor says. You heard the words the first time.
Tonight there’s an intern who seems very young. He has dark hair and his eyes are blue or maybe green and everything he says irritates you. The nurse smiles at something he says to her, something harmless and inconsequential, small talk. He keeps this exchange brief, a few words at most, but their chit-chat infuriates you. You say nothing. You’re waiting, sitting by the hospital bed.
The first round of dialysis takes three hours. The nephrologist and the rheumatologist then discuss a plan for plasmapheresis to follow the next rounds of dialysis, the two procedures together taking a total of five hours.
My husband and my daughter arrive with a box wrapped in layers of plastic and cardboard. The plastic rustles and crinkles as they remove the layers, revealing a small silver rectangle. My son remains motionless after his first dialysis and he stays silent, his eyes closed, all during the opening of the box and as my daughter hold the silver rectangle close to his ear. She says: hey Tien, Nintendo DS! Something that Tien has impatiently awaited for months. A long moment of silence passes and then my husband puts his arm around her and leads her gently out the door.
A few moments after they leave, the intern picks up the DS. It’s a gift from my daughter, I say.
What’s this? the intern asks loudly.
It’s a gift from my daughter for her brother, I say. It seems that we’re just repeating words now.
This is for Tien?
Look at this, he says in the same loud voice. A Nintendo DS for Tien. Does it have a game in it?
I’m so annoyed, I almost don’t reply. Yes, I say finally.
Hey, he says again. Hey, look at this. Tien’s eyelids flicker, followed by a tiny rustling of the blanket, the first faint movement.
Wow, says Tien very faintly.
The intern and I look at each other, and I burst into tears.
Until then, I felt that I was listening to words and more words – multisyllabic and technical. Plasmapheresis, antiphospholipids. Words that meant very little, it seemed, as Tien drifted further and further into silence. I can’t remember all the exact movements – the flickering, a hand moving – but I remember the feeling that Tien was no longer drifting, that he was still far away but that he had changed direction somehow. He was drawing closer.
Around this time, my daughter Vanina dreams that Tien is asleep in a round basket-like boat, a coracle, and that she’s paddling the boat. It’s night and the stream is dark.
The in-between, neither night nor day, the murmuring of hospital machinery, the tubes and catheters. Sleeping next to Tien’s hospital bed, on strange unfolding chairs that stretch out into a type of furniture that’s neither a bed nor a chair. Sleep descends in intervals of an hour or two hours. I awake to find another nurse drawing Tien’s blood or checking his blood pressure, another group of doctors entering the room: rheumatologists, neurologists, hematologists, nephrologists, the attending doctor of the PICU, the residents, the fellows, the interns.
The state of constant fear, felt upon arrival, grows into a prolonged, continual state of dread.
The attending and the residents sleep on the pediatric floor on bunk beds in rooms the size of closets. I discover this one night when searching for a blanket from the linen closet – a door opens that I thought was a closet, and the attending doctor emerges, his bed-hair flattened in the back of his head. He nods before walking away down the hall, but not before I catch a glimpse of rumpled sheets and narrow, ascetic bunk beds.
Tien has discovered the blanket warmer, or rather, he has discovered that blankets can be warmed and that the nurses and I will go fetch a cold blanket and pop it in the blanket warmer for him. Tien is confined to his bed, and occasionally moved to a toilet. The tenuous nature of life has shifted all priorities so that Tien and I are completely overjoyed by the appearance of poop and, one night, a small bit of urine, spreading to the size of a coin, on the commode. Poop and pee, Tien says in his frail voice.
The doctors believe that the chances of his kidneys recovering are nearly non-existent. There are thousands of micro-clots in his kidneys. He will remain on dialysis.
I dream one night of a vast space containing water, completely empty. There is only a luminous sort of light that emanates from the water, and then I see something very tiny, an odd infinitesimally small creature swimming in the water. It looks like a type of water snail, swimming through the liquid, or a miniature nautilus, propelled by delicate cilia. I don’t know what it is, only the definite realization that the water is no longer empty. There’s something inside, something alive.
After a month inside the hospital, I realize that I don’t know the way to the exit. I arrived with Tien in an ambulance in the middle of the night, and I have yet to go outside.
A dog enters the pediatric ward, accompanied by a woman who explains that this dog is hypoallergenic. Tien glances at the dog from his hospital bed and the woman lifts the dog so that Tien can put his hand on the dog’s fur. The dog looks only at Tien’s face, not at all the tubes and machinery that surrounds him.
The dog, a messenger from the chaotic world of doggy breath and doggy poop, is carefully chosen and seems almost unreal – too peaceful and too clean.
The dog lies quietly next to Tien in the hospital bed. Tien stares up at the bland-grey lighting that illuminates his room.
When the dog leaves, Tien says for the first time that he’s hungry.
The nurse’s cafeteria sells spongy Chinese steamed buns that I bring for Tien who eats one slowly and completely.
In an attempt to stop his lupus flare, Tien is administered high doses of liquid steroids intravenously. It takes time for the steroids to enter through the IV tube, but the moment it does, Tien begins to scream. Sometimes he screams during the entire steroid pulse. The duration of the pulse varies, sometimes taking twenty minutes, sometimes forty.
Dialysis takes three hours, four times a week, Monday, Wednesday, Friday, and Saturday. Plasmapheresis follows dialysis, taking an additional two hours, so that Tien is hooked to machinery, the tubes bright red as his blood passes through, for five hours, four days a week.
On some nights, Tien will ask what the vending machines sell. The pediatric ward takes up the sixth floor, including the pediatric intensive care unit. The cafeteria and the vending machines are on the second floor. The nurse’s cafeteria is in a separate, adjacent building. Strange statues stand on the courtyard lawn in front of the nurse’s cafeteria: large sculpted heads, one on its side and one upside-down, the rest normally positioned, but with bulging eyes and odd expressions. Are they meant to express discomfort? Fear? Alienation?
Tien’s favorite item from the vending machine is Skittles, the multicolored candy labeled as fruit-flavored, while really tasting predominantly of sugar. He doesn’t leave his bed, so the Skittles are brought to him. Sometimes his sister or his brother gets the Skittles for him; sometimes he asks me to get them in the middle of the night. This is the type of candy that I would ordinarily not approve of, but now I find myself in front of the vending machine at three o’clock in the morning, getting the tropical fruit-flavored variety. The tropical ones come in different colors: orange, yellow, green, pink, and blue. I’ve never seen a blue-colored fruit in the tropics, but the Skittles of this color are flavored as something called pineapple passion fruit. Whether I’ve heard passion fruit called barbadine in Tahiti, or lilikoi in Hawai’i, I’ve never tasted anything in the islands that tastes like the blue-colored candy, something too sweet and too easy to swallow.
Very few expected to be here, in the pediatric intensive care unit. The children, and the parents and guardians that accompany them – their lives were sideswiped by accidents, aggressive diseases, genetics, poisoned environments, fate, destiny, blind chance.
We thought our story was going one way, and then we ended up here.
From the time that Tien was first diagnosed with lupus until the time that his kidneys failed: three weeks. A month earlier, he was going to birthday parties, rehearsing his part in the school play, complaining from time to time that his feet and his hands had started hurting. A rash had appeared on his legs, but he had always been prone to rashes. One morning, he awoke with a puffy face and I took him to the pediatrician. She looked at his rash and examined his hands. She ordered blood tests.
The hospital called at two in the morning. The blood test results were in and we were instructed to take Tien immediately to the nearest emergency room.
Walking down the halls of the hospital late at night, the voice keeps repeating: you did something wrong, you did something wrong. That’s why Tien is here, tethered to an IV, to monitors and machinery. Lupus is rare in children, still rarer in boys. All the things that I did wrong play in an endless loop in my brain. From that time on, I will never swim again in the South Pacific. My octogenarian father will live out his days in his house by the sea, but whenever I visit him, I will never swim in those warm, limpid waters. The voice plays over and over again saying that I poisoned myself this way, during my puberty and adolescence, critical years when I swam in an ocean contaminated by nuclear testing. Other wrongdoings rattle around in my mind. There’s the biblical phrase that obsessed my mother, something about the sins of the parents falling on the children. The list of wrongs continues, dull and hateful. The Pakistani doctor, on a pediatric nephrology fellowship, arrives daily at the hospital at five in the morning, and she tells me that I can’t keep thinking like this, blaming myself, looking for blame – that these things are complicated, and not black and white.
Tien beckons to me and whispers that he noticed something on one of his trips outside of the PICU. He’s wheeled in his hospital bed onto the regular pediatric floor and into the elevator to different floors for innumerable tests. He tells me that he noticed that there’s a box in one of the rooms. “I think there’s toys in there,” he says. He’s able to borrow different games from the Child Life playroom, but Tien says that this box is different. He’s memorized where the room is located from the times that he’s passed this room while being wheeled to different tests. I begin to understand that Tien believes that this is a box of trinkets such as he might find at the dentist. “The box is there,” he says.
That night, I follow Tien’s instructions and walk outside of the PICU, down hallways and around corners. I find myself inside a hallway on the far north side of the pediatric floor. It’s after hours and the rooms are dark. This part of the hospital seems older so that the walls are painted a shade of olive green, an institutional type of color. I open one of the rooms, empty except for a conference table and folding chairs. In the darkness, I see a box against the wall. It’s the size of a small chest and, suddenly, it reminds me of when I was a child in the early 1960s, during the rubella epidemic that swept through the United States. Every class in the Catholic school attended Mass on Friday and, on occasion, in the middle of the center aisle, there would be a small white coffin holding the body of one of the student’s siblings: an infant who had perished from rubella.
I kneel down besides the box. It’s just a conference room in a children’s hospital, but as I bend over the closed lid, all the darkness and sorrow of the past weeks weigh down on me. Without really knowing why, I feel a sense of dread gathering at the bottom of my stomach. I haven’t turned the room lights on yet and suddenly the shadows grow ominous. I want to flee, to leave, shutting the door behind me. I’ll tell Tien that I didn’t find the room or that it was locked and I couldn’t enter. Tien’s face lit up with enthusiasm as he described the room with a box, but I know that the world isn’t what children think it is. It’s filled with disappointment.
I open the lid. For a moment, with the lights turned off, I can’t see what’s inside, and then the glimmer of cellophane appears: small packaged toys, trinkets and kid’s jewelry. There’s an assortment of different stickers, temporary tattoos, miniature watercolor sets, boxes of coloring markers, necklaces of pastel beads, shiny rings, and an abundance of toy frogs and butterflies, faint gleams within the darkness, and I reach in to bring something back for Tien.
Lillian Howan spent her early childhood in Tahiti and later graduated from the University of California, Berkeley, School of Law. Her writings have been published in Asian American Literary Review, Café Irreal, Calyx, Jellyfish Review, New England Review, South Dakota Review, Vice-Versa, and the anthologies Ms Aligned: Women Writing About Men and Under Western Eyes. Her debut novel The Charm Buyers (University of Hawai’i Press) received the Ka Palapala Po’okela Award for Excellence.