A few moments after they leave, the intern picks up the DS. It\u2019s a gift from my daughter, I say.<\/p>\n
What\u2019s this? the intern asks loudly.<\/p>\n
It\u2019s a gift from my daughter for her brother, I say. It seems that we\u2019re just repeating words now.<\/p>\n
This is for Tien?<\/p>\n
Yes.<\/p>\n
Look at this, he says in the same loud voice. A Nintendo DS for Tien. Does it have a game in it?<\/p>\n
I\u2019m so annoyed, I almost don\u2019t reply. Yes, I say finally.<\/p>\n
Hey, he says again. Hey, look at this. Tien\u2019s eyelids flicker, followed by a tiny rustling of the blanket, the first faint movement.<\/p>\n
Wow<\/i>, says Tien very faintly.<\/p>\n
The intern and I look at each other, and I burst into tears.<\/p>\n
Until then, I felt that I was listening to words and more words \u2013 multisyllabic and technical. Plasmapheresis<\/i>, antiphospholipids<\/i>. Words that meant very little, it seemed, as Tien drifted further and further into silence. I can\u2019t remember all the exact movements \u2013 the flickering, a hand moving \u2013 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.<\/p>\n
Around this time, my daughter Vanina dreams that Tien is asleep in a round basket-like boat, a coracle, and that she\u2019s paddling the boat. It\u2019s night and the stream is dark.<\/p>\n
4<\/h4>\n
The in-between, neither night nor day, the murmuring of hospital machinery, the tubes and catheters. Sleeping next to Tien\u2019s hospital bed, on strange unfolding chairs that stretch out into a type of furniture that\u2019s neither a bed nor a chair. Sleep descends in intervals of an hour or two hours. I awake to find another nurse drawing Tien\u2019s 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.<\/p>\n
The state of constant fear, felt upon arrival, grows into a prolonged, continual state of dread.<\/p>\n
The attending doctor 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 \u2013 a door opens that I thought was a closet, and the attending doctor emerges, his bed-hair flattened on 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.<\/p>\n
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.<\/p>\n
The doctors believe that the chances of his kidneys recovering are nearly nonexistent. There are thousands of micro-clots in his kidneys. He will remain on dialysis.<\/p>\n
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\u2019t know what it is, only the definite realization that the water is no longer empty. There\u2019s something inside, something alive.<\/p>\n
5<\/h4>\n
After a month inside the hospital, I realize that I don\u2019t 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.<\/p>\n
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\u2019s fur. The dog looks only at Tien\u2019s face, not at all the tubes and machinery that surround him.<\/p>\n
The dog, a messenger from the chaotic world of doggy breath and doggy poop, is carefully chosen and seems almost unreal \u2013 too peaceful and too clean.<\/p>\n
The dog lies quietly next to Tien in the hospital bed. Tien stares up at the bland-grey lighting that illuminates his room.<\/p>\n
6<\/h4>\n
When the dog leaves, Tien says for the first time that he\u2019s hungry.<\/p>\n
The nurse\u2019s cafeteria sells spongy, steamed Chinese buns that I bring for Tien, who eats one slowly and completely.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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 nurses’ cafeteria is in a separate, adjacent building. Strange statues stand on the courtyard lawn in front of the nurses’ 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?<\/p>\n
Tien\u2019s favorite item from the vending machine is Skittles, the multicolored candy labeled as fruit-flavored, while really tasting predominantly of sugar. He doesn\u2019t 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\u2019clock in the morning, getting the tropical fruit-flavored variety. The tropical ones come in different colors: orange, yellow, green, pink, and blue. I\u2019ve 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\u2019ve heard passion fruit called barbadine<\/i> in Tahiti, or lilikoi<\/i> in Hawai\u2019i, I\u2019ve never tasted anything in the islands like the blue-colored candy, something too sweet and too easy to swallow.<\/p>\n7<\/h4>\n
Very few expected to be here, in the pediatric intensive care unit. The children, and the parents and guardians that accompany them \u2013 their lives were sideswiped by accidents, aggressive diseases, genetics, poisoned environments, fate, destiny, blind chance.<\/p>\n
We thought our story was going one way, and then we ended up here.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Walking down the halls of the hospital late at night, the voice keeps repeating: You did something wrong, you did something wrong<\/i>. That\u2019s 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\u2019s 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\u2019t keep thinking like this, blaming myself, looking for blame \u2013 that these things are complicated, and not black and white.<\/p>\n
Tien beckons to me and whispers that he noticed something on one of his trips outside of the PICU. He\u2019s 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\u2019s a box in one of the rooms. \u201cI think there\u2019s toys in there,\u201d he says. Tien is able to borrow different games from the Child Life playroom, but he says that this box is different. He\u2019s memorized where the room is located from the times that he\u2019s passed it 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. \u201cThe box is there,\u201d he says.<\/p>\n
That night, I follow Tien\u2019s 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\u2019s 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\u2019s 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 a student\u2019s sibling: an infant who had perished from rubella.<\/p>\n
I kneel down besides the box. It\u2019s just a conference room in a children\u2019s 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\u2019t turned the room lights on yet and suddenly the shadows grow ominous. I want to flee, to leave, shutting the door behind me. I\u2019ll tell Tien that I didn\u2019t find the room or that it was locked and I couldn\u2019t enter. Tien\u2019s face lit up with enthusiasm as he described the room with a box, but I know that the world isn\u2019t what children think it is. It\u2019s filled with disappointment.<\/p>\n
I open the lid. For a moment, with the lights turned off, I can\u2019t see what\u2019s inside, and then the glimmer of cellophane appears: small packaged toys, trinkets and kid\u2019s jewelry. There\u2019s 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 \u2013 faint gleams within the darkness. I reach in to bring something back for Tien.<\/p>\n
\n
Pediatric Intensive 1 We arrive at the pediatric intensive care unit in the middle of the night. My son\u2019s kidneys have failed. He is nine years old. The surgeon inserts a catheter into Tien\u2019s neck so that he can start dialysis where he remains, quiet and unresponsive. He has been transferred via ambulance from … <\/p>\n![\"\"](\"https:\/\/www.hawaii.edu\/vice-versa\/wp-content\/uploads\/2020\/12\/lillian-400x283.jpg\")
Lillian Howan<\/strong> <\/span>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, Caf\u00e9 Irreal, Calyx, Jellyfish Review, New England Review, South Dakota Review, Vice-Versa,<\/em> and the anthologies Ms Aligned: Women Writing About Men<\/em> and Under Western Eyes.<\/em> Her debut novel The Charm Buyers<\/em> (University of Hawai’i Press) received the Ka Palapala Po’okela Award for Excellence.<\/p>\n","protected":false},"excerpt":{"rendered":"