The impending arrival of the baby is thrilling; it’s been so long without a baby in the family. The parents, the kids, the aunties and uncles, the cousins, and the grandparents are beside themselves with anticipation. When she finally comes home, born on Thanksgiving Day, the baby feels like a gift, like a blessing.
The family chooses her name together; each voting for their favorite. The brother is 10 years old and the sister is 14 years old. They feel included; like this is their baby, too.
She’s an easy baby. She eats well, she sleeps well, she loves people. She’s darling. The brother and sister adore and dote on her. They play with her for hours and can always make her smile. She lies on the couch with the father every evening; seemingly content to watch the nightly news with him. The father announces that the baby’s first word is “maylee’ — the name of her imaginary friend. The mother wakes up at night to nurse the baby and it feels like an island of bliss. She’s exhausted, but she jealously guards these nights with just the two of them. The extended family falls in love with her; always visiting, always wanting to hold her. The grandmother holds the baby on her lap and kisses her fat little hands over and over. The grandfather flies her around like an airplane.
The baby is 9 months old when she gets sick.
She is sick for six days. Her fever is above 104° for four days. The doctor says she has a double throat infection: both bacterial and viral. He gives her an antibiotic injection and a prescription for phenobarbital.
Then she is well, and again her normal sweet, funny self. She’s talking a lot and using many more words. The family is relieved; the long stretch of fever days was worrying. The mother feels a ball of anxiety melt off and roll away. The relief is palpable. A week later, the top layer of the baby’s skin on her fingers and toes bubbles up and peels off.
Then she is sick with fever again. Baby aspirin doesn’t help. The doctor tells the mother to bathe her in a cool bath. It doesn’t help. The doctor says to put ice in the bath, which they do, but it doesn’t help. The baby screams in the freezing water. Her face is beet red; her feet are discolored — purple and blotchy. The brother is called to bring in more towels. He finds it too disturbing to see the baby like this; he leaves the bathroom and swallows down his roiling fears. The baby’s fever spikes to 105.5°. The sister is called to bring in more ice. As she comes in, the baby’s eyes roll up into their sockets — the sister can only see the white part of the baby’s eyes. The baby’s limbs stiffen and she jerks rhythmically. She’s having convulsions; not one, but one after another after another. The sister leaves the bathroom and leans into the wall, face first, tears streaming. She can’t breathe. When the brother asks her what happened, she doesn’t want to tell him. She doesn’t want him to feel the way she feels. The father puts his thumb in the baby’s mouth to keep her from swallowing her tongue, which is protocol in 1965. The baby bites the father’s thumb with her new sharp little teeth. The father bellows. The father and mother look at each other and pull her out of the bath; dry her off and dress her quickly. The mother tamps down her rising hysteria. They get into the car and drive to the hospital. Later, when the sister sees the baby in the hospital, she is wearing only her diaper and is lying directly on ice. Her skin mottled and red; the baby screams. She has a throat infection and an ear infection. Her feet are still oddly discolored and swollen; her legs stiff. The doctor tests her blood, which is normal, and tests her urine, which is positive for protein. They send her home with a prescription of sulfa and chloromycetin A week later the baby’s fingers and toes peel again.
The baby won’t go to sleep without a pacifier. The family is constantly searching the house for them. They dig them out from between the couch cushions or under the bureau, covered in dog fur and dust. The brother and sister are put on pacifier duty; making sure there is a clean one available at all times. They finally attach one to a ribbon and put it around her neck. The father says it is her rosary.
The fever comes again. Seven days of fever between 103.6° and 105°. She has a rash on her stomach. Her lips and mouth are bright red. She cries continuously. The doctor says she has an ear infection and lances her ear. He starts her on antibiotics on the second day of her fever, and by the seventh day, he is puzzled by the lack of response to treatment. He gives her an injection of terramycin. A week later the baby’s toes and fingers peel.
The mother begins to keep meticulous notes about the baby’s illnesses. When the baby is sick, she takes her temperature several times a day. She gives her several cool baths a day, sometimes 7 or more. The mother logs every temperature, every dose of medicine, every indication of pain, every bath, every change in disposition, every change in sleep, every change in appetite. She logs the number of days each illness lasts, and the number of days between each illness. She logs the average temperature for each illness, and the average temperature of all the illnesses combined. She begins to compile the symptoms at each stage and how they progress. The mother is adamant that everyone logs every bit of information on the chart. They do. When she shares this with the doctor, she is ignored.
Four days of fever over 103.7°. The baby is keyed up, high strung, nervous, fretful. She can’t sleep, she won’t eat. When she finally takes the bottle, she vomits immediately. At night, she wakes every 10-15 minutes with violent pain. The family can do nothing but hold her. She screams if she’s moved at all. The brother and sister are awakened in the night to help with the baby. While the brother fixes the bottle, the sister holds the baby but she can’t keep her eyes open and falls asleep; the brother takes the baby. In the morning, the sister remembers and feels worthless. The mother and father are both overwhelmed and they argue. The doctor gives her oxytetracycline and phenobarbital. The baby’s fingers and toes peel again.
The doctor says the baby has no infection, but her fever is steady at 103.4° to 104.2° for five days. She is hysterical. She has cold sweats; her face is chalky pale but her cheeks are bright red. The whites of her eyes are pink. Her mouth and throat are deep red. Her tongue is coated in a white substance. The doctor says it’s thrush. She seems to have leg pain. She won’t eat; she’s very cross. The doctor prescribes nembutal and phenobarbital. A week later her finger and toes peel again.
As she grows into a toddler, she is a happy, funny thing when she’s not sick; so sweet, so smart, so loving. She giggles often. She keeps her kisses in her training pants; she pulls one out of the waistband and puts it on her lips before bestowing a kiss. She keeps her hugs around her neck; pulling them around her shoulders like a scarf before embracing. There are only so many to go around, but she isn’t stingy with them. She plays tough, asking “Wanna fight?” She juts out her jaw, tightening her top lip; trying to look fierce. She balls up her small fists and waves them around like a boxer; the brother and sister always say yes. She walks on her tiptoes; no one knows why. She loves her dog, Bowser. She sits over the heater vent with him and they cuddle. Bubble baths are her favorite thing — often Bowser keeps her company in the bathroom. She loves going to her grandparents’ house and they adore her. She plays with the black and white magnetic tricky dogs, and a chorus of golden angels holding tiny musical instruments.
This fever is between 103° and 104.6° for four days. The toddler cries uncontrollably. The mother asks her where it hurts. She points to her throat, her feet, her hand, her chest. The toddler won’t take the baby aspirin, no matter how the mother disguises it. She’s continuously thirsty. She wakes every half hour at night. She won’t take a bottle; she only wants water. On the fourth day, her fever suddenly drops to 96°: considerably below normal. The parents wonder if their thermometer is broken. Like clockwork, her fingers and toes peel again.
She begins to talk about a quartet of imaginary friends: OrangyPinky, HonJohn, FlowerShower, and HoonkaPoonka. Somehow they live in the mother’s clothes closet. The brother and sister love to talk to her about her friends, but the toddler withholds a bit. She’s hesitant and protective of her friends; they are special.
Five days of fever over 104°. The toddler’s face is pale again with bright red cheeks. Her skin is cold, clammy and dotted with tiny beads of sweat. Around her red, swollen mouth, the skin is blueish. She’s suddenly extremely frightened; trembling all over. She seems very insecure. She calls for each family member to hold her; one person after another. The mother gives her phenobarbital and baby aspirin. The mother takes her to the doctor, but he can’t remember which patient she is. The mother reminds him of previous illnesses and the hospital stay, but he doesn’t remember. He doesn’t understand why the mother has brought her into the office. He asks her to come back when it’s more worthwhile. On the 5th day, her fever drops to 94°, again way below normal. The peeling starts again.
The toddler and the mother lay on the mother’s big bed with the window open, sharing a picture book. The day has been warm and sunny but a storm begins. Every time the wind blows, the curtains fly up and a fine mist of rainwater sprays them through the mesh screen. The toddler shrieks and giggles. The mother wants to safeguard this rainy day forever.
The fever comes again; 103.3° to 104° for six days. She has a constellation of canker sores in her mouth and down her throat. She’s very thirsty, but it’s excruciating to swallow. She can’t walk or stand. She explodes if anyone touches her feet. Her chest hurts, her head hurts. Her hands tremble like she’s nervous. The mother gives her sulfa and phenobarbital. Her fever drops precipitously and she screams in pain if moved. When it’s over, the peeling starts, of course.
The fever comes. She vomits again and again. Her feet hurt; her chest hurts. She’s wound up and extremely cross. She’s very thirsty and cries when anyone takes her cup of water away to refill it. She wakes up repeatedly with nightmares. The mother gives her baby aspirin every two hours along with nembutal. The brother and sister are again awakened in the night to help with the screaming toddler. The peeling starts, as usual.
The days are warm and the house is open: all the windows and doors. The toddler dashes out the side door and something catches the edge of her sight. She turns back and looks up. There is an explosion of purple above and around her, hanging down in cones. She runs her hands through the delicate flowers, breathes in, and rubs her face in them; she grabs two handfuls of torn, bruised blossoms for her mother.
Four days of 103.2° to 104.8° fever. Her feet are sore and swollen and the purple blotches climb halfway up her shins. She cradles her head in her hands and cries. Her eyes are pink; her mouth is red; her face is tinted blue. She won’t eat, she won’t nap, she lies on the couch, lethargic. The family gives her 8 baths throughout the day to try to bring down her fever. The mother gives her baby aspirin and nembutal around the clock. She’s very subdued. Her fever suddenly drops to 96° and she shakes without stopping. It’s no surprise when her fingers and toes peel again.
At the 4th of July picnic, she races around the grandparents’ yard and pretends to climb the cherry tree. She is delighted when she spies a green snake in the flower bed. She hops on her tiptoes and chases the striped croquet balls. She wants seconds of her mother’s potato salad. She’s mesmerized by the red flowers in the yard, but is startled when she finds a bug in one. The grandmother makes her a summer top out of a hand-towel and a ribbon because it’s too hot to wear her heavy dress; she wears the hand-towel-top with her training pants.The grandfather holds her on his lap and lets her pretend to smoke his corncob pipe in between bites of frosted ginger cookies.
The brother and sister show the toddler the raspberry bush, hanging with pink fruit. When they pop one into her mouth, the toddler’s eyes open wide and she lets out a squeal. They pick every ripe berry and put them in a bowl with milk and sugar. The toddler eats every bite, then pulls on their arms, begging them to return to the now-naked bush.
The fever comes with thrush again and stays for seven days. Her mouth is coated in white, continuing down her throat. Her legs are stiff and swollen. She’s unsteady on her feet and drags her left foot as she walks. She has a rash on her stomach, groin, and underarms. She’s doubled over with stomach pain. She won’t allow anyone near her feet. She wakes up at 5am in pain or delirium, or both: talking to someone who isn’t there. The mother gives her phenobarbital and sulfa. Her temperature plummets to 94° and her lips are blue. Her finger and toes peel again.
The medical bills accumulate into a teetering tower. The family is wrecked. The parents can barely cope. When will it stop? Will she ever be normal? Is she going to die? They are desperate for answers. The house is somber and the tension is crushing. Then she’s well again, and their fears slightly recede. Then she’s sick again and the weight of it is unbearable. The parents hide nothing from the kids; how can they? The brother and sister feel a creeping dread; an awareness of something beyond horrible. The claws of fear dig deeply. The doctors have no answers and the family has no relief.
Six days of fever: 102° to 105.6° and it brings convulsions again, for which she’s given ice baths. The father puts a blue toothbrush in her mouth this time instead of his thumb. Her hands and feet are covered with purple blotches, as well as her groin and underarms. Her face is white and she looks wild. She has violent chills and wants to be held. She’s unsteady on her feet and falls frequently, leading to tantrums. There’s a large brown patch on her tongue, and her eyes are pink. She has screaming fits that last over 5 minutes. When her fever won’t come down, she’s taken to the hospital, to be again laid on a bed of ice. The mother watches as the doctors carry her away, down the hallway, wondering if she’ll ever see her daughter again; pain blooms in her body and she holds her breath. The doctor gives injections of terramycin, oxytetracycline and sulfa. The toddler’s temperature drops to 94°. She comes home from the hospital and then the peeling starts.
The mother is devastated. The father feels helpless and is continuously exhausted; working two jobs because the mother misses so much work. They argue. The brother and sister are stunned into silence by everything they’ve seen; too young to know how to process their terror, their heartbreak. The grandparents hold hands and stare at each other — just a whisper of shaking heads — but neither one is foolish enough to speak about it out loud.
The family brings home a Christmas tree. The toddler is spellbound by the ornaments, the tinsel, the tiny houses. Bowser leaps up in excitement and the tree falls over, breaking the fragile ornaments and spilling water on the carpet. The toddler shrieks, dances away from the mess on tiptoes and dissolves into giggles. The father puts the dog outside.
The monthly sicknesses continue for years. The doctors have no idea what is wrong with her. The family always hopes it’s the last one, but at this point they don’t really believe it will ever end; unless — until — she dies. The horror of that thought is paralyzing.
The family decides to have her blessed by the ministers. They come to the house — three of them in dark suits — and they each lay a hand on the girl’s head. The family does as well until there is a giant pyramid of hands on top of her head. The ministers close their eyes, mumble some words, and the family prays for a miracle.
The mother finds a doctor who finally listens and he starts treating the girl with gamma globulin shots and large doses of aspirin. She is taken twice a week to get a shot, crying each time.
The father moves out. They divorce. The sister tucks the girl into bed the first night he’s gone. She plants a thousand kisses on the girl’s neck; the girl squeals, drunk with laughter. The sister vows to come every night from now on, religiously.
Finally, finally, the girl gets better. By the time she is nearly five, she is well. She never again has the week-long fevers, the purple blotches, the overwhelming pain. Her finger and toes never again peel. She is a bit fragile, a bit frail, but she is well. She’s now shy and careful around people; quiet, reserved; never wanting to make a scene or to stand out. Too much focus on her feels unbearable. She remembers her imaginary friends, but doesn’t see them anymore. Did they only come to help her get well? She misses them.
As a teenager, she is introspective and feels unformed. She wonders if the sickness changed her into someone else. More than anything else, it feels odd to be herself; her body is such a stranger to her, such a traitor. Was she meant to die? She tries hard to no longer be a burden to her family. She very much wants to be unobtrusive, to be unnoticed, to be ordinary. Books become her refuge and her shield.
Kawasaki Disease began to emerge across all continents in the 1960s. Beginning in Japan, it was soon discovered in America. The cause is unclear. Typically patients are between six months and five years old. It is an acute febrile illness in which the walls of the blood vessels become inflamed. The symptoms include a high fever for at least 4 days; red mouth, tongue, and throat; abdominal, chest, head, and limb pain; bloodshot eyes; cool and clammy skin with discoloration and rash; and the peeling of the skin on the fingers and toes. Behavioral symptoms include night terrors, agitation, anxiety, and altered mental state. The duration of the active state is usually one week, once per month. Treatment is high doses of gamma globulin along with high doses of aspirin; antibiotics are not effective.
Dianah Hughley has been a bookseller for Powell’s Books since 2008. She mainly writes staff pick reviews, so this essay is a big stretch for her. She works in the blue room and specializes in literary and Pacific Northwest fiction. She lives in Portland with her husband and many, many — too many — books.