Self Preservation

Self Preservation

By Antonia Malchik

Screen Shot 2015-03-17 at 1.02.09 PMAn hour into my peach canning session on a hot August afternoon, I’ve peeled five batches of fruit. I’ve long since ceased to think about how the ripe, sinful flesh, blush-colored and naked, always brings to mind Georgia O’Keeffe paintings and sex. Instead I hustle, doubtfully eyeing the diminishing, discounted box of orchard-run peaches, the ones that have fallen off the trees and bruised. I picked them up three days ago at a farm five miles away. Some are already growing mold. The waste angers me as I cut away bruises and green fuzz, sometimes throwing away most of a peach, but I haven’t had time to get to them. The wedges pile up in the pot, splashing into squeezed lemon and leaking peach juice. Even as I pick up the pace, I try to remember that I’ve chosen this time-consuming and unnecessary hobby, that it’s a process to enjoy. I move the knife too quickly against the naked peach in my palm and it slips close to my thumb.

Water spits constantly onto the hissing gas burners. I’m working alone, lifting peaches from a boiling pot into an ice bath. The skins slip off peach-flesh—dusky, firm, and slick. The peaches are freestone variety, chosen for their rich flavor and the ease with which the flesh falls off the pit. They boil for a scant thirty seconds to release the skin, no more than six at a time in the pot because that’s the most I can dip in and out before the fruit begins to cook.

Upstairs, the baby wakes up crying. I brush sweat-soaked hair out of my face. His nap lasted thirty minutes less than usual. I’ll have to wrap up early. The baby’s fingers are too eager and his curiosity too persistent to allow him near an activity that requires scorching hot burners and my full attention. I’ll be lucky to finish this half after he goes to bed tonight.

The last six whole peaches come out of the pot. I slough the skins off as fast as possible, turn off the boiling water, put the gigantic pot of skinned, sliced fruit on a back burner; contemplate washing up the bowl full of shed skin and pits, the knife and cutting board, the lemon juicer, the thick puddles on the counter splashing silently onto the floor, before everything turns sticky and mixes with cat fur.

Through the baby monitor, my son’s crying increases in intensity and violence over the rattling of his crib bars against the drywall. I stop wiping the counter and try not to begrudge his theft of my time alone. But the resentment comes anyway: Get me. The fuck. Out of here.

*   *   *

Everything about canning season, including the crying from upstairs, reminds me of my son’s birth. My first attempts at this old-fashioned practice took place a week either side of his delivery, seven weeks early. Bored with pregnancy and summer heat, my husband and I played at freezing peaches in sugar syrup on one oppressive Wednesday in August. We made jokes about the pornography of the fruit and covered the kitchen with juice and sugar. The next Sunday we bought a box of tomatoes, thinking to cook them down and likewise install them in freezer bags. By then I was, unknowingly, already sinking under the effects of HELLP Syndrome, a rare, often fatal pregnancy illness. Complaining of stomach pain, I put off the tomato project and went to bed. I thought I had a mild case of food poisoning. By Wednesday, my liver was failing. The obstetrician performed a Caesarian while I was unconscious. I met my son thirty hours later, after the machines in Intensive Care stopped monitoring my breathing.

The next Wednesday, my son was still lying in Neonatal Intensive Care with the other tiny, sick premature babies. The doctor had called at seven a.m. to warn us they’d found a second air bubble next to his lungs and might have to move him to a tertiary care center two hours away. I can’t leave him, I kept saying to the nurse, who’d heard the same from countless discharged mothers and would continue hearing it long after my child was strong and growing. I kept putting off withdrawing the tip of my thumb from his miniscule fist, the only part of him we were allowed to touch until they removed the chest tubes and oxygen sniffer. I spent the drive home twisted in tears. I didn’t want to stop crying, thinking somehow it kept me connected to him, forty-five minutes away.

Nine o’clock at night my husband found me blanching tomatoes in the kitchen, stripping their torn skins.

“You should be resting,” he said.

“I need this.” I fished six tomatoes out with the slotted spoon and tried not to cry. The incision from the C-section ached; my feet ached; my head ached. But the movement from box to pot to icy bath to bowl, knowing I was making something without having to eat any of it, kept the tears at bay. “I need to do something real,” I said.

Splash, roll, split went the tomatoes. Their skins didn’t slide off like the peaches’ did. I had to peel them, papery on top with a squishy underbelly dripping watered-down red.

*   *   *

I’m descended on both sides from families in which competence is the predominant religion: the ability to make things, fix things, grow things. The knowledge that you could scratch out a life far from the conveniences of modernity. For my paternal and maternal grandparents, food was simply about survival. But more than that, its production and preservation defined the value of a woman. My Russian grandmother kept my father and his siblings alive during World War II by digging potato beds and scouring the woods for mushrooms after working double shifts managing the metallurgical lab at the weapons factory. On my mother’s side, my forefathers went West to Montana, where the women, no matter how soft they’d begun, grew hands puckered and hard from the sweltering woodstove, the endless kneading of bread, the maintenance of the vast pickling crock, the coaxing of vegetables from the water-starved soil of Eastern Montana, the drying and preserving and pickling that ensured—they hoped—a winter free of hunger.

The summer my little sister was born, another August, my mother sweated, short and swollen, over a stove bubbling with jars of beans drowned in vinegar. Dilled pickled beans became her signature side dish. In later years, every time a jar was opened she restrained my sisters and me from eating the entire thing at one sitting, and we would negotiate over the chunks of pickled garlic on the bottom.

I was four that summer. My mother grew her own beans, and I marched colanders full of them from the garden to the quart jars waiting in ranks on the counter. The jars lay on their sides, each dosed with feathery dill leaves, cloves of garlic, dill seed, and crushed red peppers. They waited to be packed with beans and filled with vinegar.

In many families, this would be a story about the harmony of the kitchen, mother passing down to her daughter the practices of her pioneer grandmother. But it isn’t. My mother didn’t want me kicking my heels on the alderwood kitchen stool, didn’t want me snapping the tops off the beans with eager, sloppy fingers. She didn’t want me there at all.

“Sweetheart.” Snap, snap, snap went the beans. She worked fast over the chipped enameled colander, her huge belly pushing her well back from the sink. A light-blue kerchief kept her blond hair out of her face. “Go outside and play.” Stuff, stuff, stuff went the straight beans tighter and tighter into the jars. The rogue skinny curled ones landed on top, once she’d set each jar upright again.

I studied the orange diamonds worked into the ugly brown kitchen carpet. I didn’t want to go play. I wanted to help. But my mother’s explosive temper was formidable. Her statements were not requests or suggestions; discipline was another thing she had brought from frontier farm life: brisk and painful. I slid off the stool and went out to the garden with my toy tin bowls, where I pretended to make a soup of Jerusalem artichokes and red currants.

The dilled beans joined the rows of jams and jellies and crocks of melon balls in liquor already established in the cool earthen root cellar below the back porch. After my little sister was born, my mother was happy to let me help change diapers, but shooed me away from the bubbling in the kitchen, where she was squishing bitter chokecherries for jelly into a conical metal sieve.

It would be easy to say that my mother practiced and maintained her frontier-woman, pioneer-wife skills because she loved them, the rhythm and movement of the seasons and the process itself. Part of that is true. Canning was also the only way she could escape from motherhood and still keep a fingertip in the creative life she passionately wanted. She chafed at being a mother of small children. More than anything, she wanted to spend her time writing stories, a dream she put off until my sisters and I were grown.

Raised to believe that the only time well spent is spent producing something or fixing something, she could not bring herself to throw her children on neighbors, friends, or her own parents so that she could write. Who would have understood, then, in that small Montana wheat-ranching town, where everyone was poor and few women worked outside the home and the only daycare was a bedraggled part-time place run by the local Kiwanis in the basement of a church?

Canning was the only household activity that was marginally creative and belonged solely to her. She did not want help. On the contrary, she wanted her husband and daughters far away for long days so she could devote her energy to an act that would for a time both soothe her artistic urges and satisfy the expectations of her competent, long-dead grandmother.

Mostly, she pickled beans.

*   *   *

My son, the baby upstairs, is almost a year old now. A month of hell followed his birth, a month of breathing and heart monitors, a month of chest tubes and oxygen. We almost lost him twice. I love him with a fierce possessiveness I never thought myself capable of. Whenever he gets sick, I vividly imagine losing him, and I hold him tight and cry like an idiot.

We brought him home from the hospital when he was four weeks old, scraping the five-pound mark—lighter than the smallest of our four cats, barely the size of a bag of sugar—and still three weeks to go until his official due date. We’d been turned inside out through that month, our priorities shaken out and stomped on. The freelance copy editing career I’d planned on returning to seemed pointless beside his need for me, and mine for him. I couldn’t imagine ever being tired of his presence.

He cried for months. He nursed every hour and a half around the clock. He slept flat out on my chest every night until he was four months old. Each morning I woke up, back aching, to remember I would not have a minute to myself for at least thirteen more hours. I woke up to resent the life I now had, to resent the baby whose life I, an atheist, had prayed for. On the days when he cried the most, when neither the breast nor swaddling nor pacifier nor his bouncy chair could soothe him, the mother I dreaded becoming seemed dangerously close. The kind of mother I’d grown up with: angry, impatient, unhappy, frantic to have a day alone.

I envisioned terrible things that I don’t want to admit to, screaming back at him being the least awful. One day my arms, meant only for motherly comfort, felt weak after a desire for violence surged through them, and I laid him gently down in his crib, shut the door on his cries, went to the garage, and shrieked at the top of my lungs until I grew hoarse. Then I sat there among the dirty garage smells, trying to work out if I still existed, under the exhaustion and frustration and constant nursing.

I had never envisioned being a full-time, stay-at-home mother, yet there I was with a high-needs child I couldn’t imagine abandoning to daycare but one I couldn’t continue sacrificing every moment to. If I kept trying to devote myself—myself—to him, one of us would get hurt. I foundered, fumbling in the dark, looking for a way back to the person I used to be. Before marriage, before mortgage, before who I was became defined by the small, delightful, draining individual whose life I was responsible for.

Every now and then my father used to take my two sisters and me out for the day so my mother could write. We’d go fishing or run errands. When we came home, there’d be hot jars of peach chutney or dilled beans resting on the counter, but rarely did any writing get done. It’s a hard thing to battle those demons every day, the ones that tell you that putting pen to paper without knowing what will come of it is pointless or worthless. To do it occasionally is almost impossible.

It’s hard to admit how many years I’ve spent trying not to be like my mother, trying not to let an urge to create pickle in frustration. After I had a child, it was hard to find out that, I, like my own mother, felt I had to purchase the right to create by doing something useful. Much as I enjoyed the canning itself, I wanted the approval of my dead ancestors. And I couldn’t shake the feeling that if I could give my grandmothers and great-grandmothers a bright quart jar of peaches I’d put up and an essay I’d published, I know which one they’d be proud of.

When I started to can peaches and tomatoes, I was grabbing at anything that would restore a sense of self as someone other than a nursing, soothing, rocking mother. A hobby I could pick up the instant my son went to sleep.

It was surprising to discover I liked it. Now, when I turn down a social invitation in late August because I’ve got a box of tomatoes to put up, I do it because for the last two months I’ve been looking forward to skinning and bottling those just-ripened San Marzano tomatoes. The sight of those jars standing in ranks in our cool basement is immensely satisfying. It makes me feel … well, competent. And achieving those jars—the canning process itself—has a soothing rhythm that quiets all the tense, trivial thoughts I tend to obsess over during the day.

I know that my passion for canning is often a stand-in for something more. Sometimes I’m sweating over a boiling pot of blueberry-lime jam because I badly want to be sitting somewhere else with a notebook in hand. I’m reminded of my mother then. The difference is, I can change that feeling, acknowledge that there doesn’t have to be one predominant self—whether mother, writer, or competent frontier-woman—to feel whole. Canning, which began as an escape, has simply become part of the ebb and flow of who I am.

*   *   *

I put a lid over the stockpot of peaches, switch off the baby monitor. The kitchen is awash in canning detritus: a pot of cooling sugar syrup, three sticky knives, a dripping cutting board, the wide-mouth funnel and jar lifter, the dishwasher full of clean, hot quart Mason jars, the flies around the bowl of skin and pits, fruit flies still feasting on the box of uncut fruit. Peach juice everyfuckingwhere. I wash my hands and forearms where the fruit dripped. I step barefoot into an unseen puddle and wash that, too. Then I take a deep breath and look around the kitchen, preparing to shift mentally, if regretfully, from the time that is mine to the time that is ours.

Up in his bedroom, my son is facing away from me, and my heart turns over as I see how big he’s gotten, how vigorously he’s using the lungs that began life so tentatively. I pick him up and hold him against me until he snuffles and his crying slows. This year he might be able to eat those canned peaches. I won’t. All I need is to skin them, pack them in jars, dance through the kitchen, making my own little thing, over and over and over.

My mother’s lesson is now a lifeline: It’s the sealing in of self, hoping to get reacquainted with me later, when the diapers are done and the school bus has stopped coming by and rides aren’t needed to sports events or music lessons. When everyone can wipe his or her own bottom. When the babies are finally in college, on their own, busy with jobs and lives. Then, maybe, I can pop open the sealed lid of that jar and taste the self again.

Author’s Note: This is written with gratitude to my mother, for being who she is, and a request for the dilled beans recipe, please.

My older sister commented that this essay made her sad because my life with young children sounded so insufficiently rewarding. This got us discussing women (like me) who struggle with their sense of self after having children, and those (like her) who are generally happy with the balance they achieve, and why. When she said of herself, “[Maybe] it’s natural for me to err on the side of self-indulgence,” I thought her word choice said mountains about how easily mothers still judge themselves for meeting their own needs.

Our son is now three. Our daughter was born a year ago. She was nine days late, and we spent those tedious nights making more than a hundred jars of jam. We still have most of them.

Antonia Malchik’s essays have appeared in The Boston Globe, The Walrus, and the Jabberwock Review, among many other publications, and been nominated for a Pushcart Prize. She lives in upstate New York and can be reached through antoniamalchik.com. 

Brain, Child (Summer 2011)

The Geography of Normal

The Geography of Normal

Biography of Normal ArtBy Asha Dore

Right after my daughter, Margot, was born, her doctors noticed that she held her hands clasped together at her chest, her elbows bent at a 45-degree angle, her arms bowed out like wings. Her knees stayed bent like a tiny frog’s. The soles of her feet did not arch; instead, they bowed out, convex, like the bottoms of boats. The doctors in the NICU weren’t familiar with her condition so they didn’t tell me that, like most kids born with tight joints, my daughter looked “her worst”— that is, the most affected—at birth. They didn’t tell me that over the next three years, I would learn the language of her body: how to stretch her arms, legs, and feet to loosen her joints, how to navigate parenthood beside her, how to speak up for her before she learned how to speak herself, how to eventually step back so that Margot could navigate her own space in the world.

Margot was born with a condition called arthrogryposis, which means “curved joints.” About 1 in 3,000 children are born with some form of arthrogryposis, and every child born with this condition has a different level of tightness in various joints, anywhere from stuck straight to stuck bent. Any joint of the body can be affected. Some children are affected in all of their joints. Some are affected in only their hands or feet or hips.

All children with arthrogryposis have joint contractures in at least two areas of the body, and all of these children are expected to have atypical development.

For typically developing babies, those intuitive shifts of the body—sitting, crawling, standing, walking—roll forward like a series of soft waves. For Margot, those shifts develop like a line of dominoes spread too far apart: Pick them up. Set them up. Try again.

Let’s go back to the beginning.

Because of Margot’s bent joints, right after birth, she is immediately locked into a plastic bubble to be observed. Related conditions have to be ruled out. Blood is drawn, chromosomes are counted. An ultrasound wand is rolled over her chest and belly and head. The neonatologists use words like remarkable, impressive, and atypical to describe Margot’s body. Because of the tests, my daughter and I live in the NICU for seven days.

In the NICU, I learn about all the conditions for which Margot is being tested. Most are terminal. I learn that when a doctor says she is unimpressed, she means that whatever condition she has searched for on the topography of my daughter’s body has not been found.

On day eight, when no known cause for Margot’s tightened joints has been found, the automatic hospital doors open for us into a wet winter evening. I hold Margot’s tiny body against my chest. The sky is grey. I walk to my car through a freezing mist. I don’t want to set her down in her car seat for the twenty-minute drive to our apartment, but I do. Far away from my body, strapped in the seat behind mine, she is just my daughter there, just a baby, just Margot away from the skeptical gazes of doctors, their charts and diagnoses, the notes they took about our family history, as if it was a scavenger hunt leading to the elusive explanation for why Margot was born “different.”

Driving home to my husband, I replay the last conversation I had with one of the neonatologists. “Her life will be different, compared to other children,” the doctor said.

“What do you mean?”

“It’s hard to say. You’ll need to follow up with orthopedics, genetics and neurology until they agree on a diagnosis. Hopefully then you’ll find some answers about how her life will look.”

For the next year, I drive Margot’s small body from doctor to doctor, trying to determine the cause of her tight joints, even though she’s thriving. Finally, an orthopedic surgeon glances at Margot and decides that arthrogryposis is her definite diagnosis. I download the single medical text that has been published on the diagnosis and read it all the way through. Afterward, I have to spell arthrogryposis for almost every new doctor we see. At first, I hear myself spelling it with the pride of discovery. Like choosing her name, except this one was chosen for us. Even though it is a vague condition, the diagnosis itself is our compass, my entry point into her world.

Soon, spelling the name unfolds a new narrative: Most doctors have no knowledge of her condition, but in their profession, they are taught to speak in definitive terms.

They say, “She will not walk until she is five.”

They say, “She will never walk.”

They say, “She will need a ten-hour operation for each foot.”

Little they say turns out to be based on science. Margot’s physical therapist tells me, “Doctors lower your expectations so that you’re constantly, pleasantly surprised.”

She shows me how to stretch Margot’s knees and advises me, “Take joy where you can get it.”

I look down at Margot’s hands as they try to press a little triangle into a square-shaped hole. I want to kiss her gorgeous, gentle fingers. They remind me of grass and wind.

Right after Margot turns one, I find a doctor who understands her condition. He works at a hospital two states away. Twice a month, I drive Margot twelve hours round trip to watch this doctor bend her feet into a standing position. He wraps rolls of plaster around her feet and ankles and calves. A couple of weeks later, he saws off the casts, bends her feet and wraps them again. He does this again and again, stretching the muscles until the soles are flat. Later, the doctor will perform a short surgery to build a small arch in the middle of each foot.

A month into Margot’s first series of casts, she catches a bad respiratory infection. I take her to a local children’s ER, and she is admitted. While I’m there, I spell arthrogryposis for the nurses and doctors. As I say the letters, hands scribble them down. They sneak suspicious glances at her casts, then at me. They ask me to explain, again, why she wears them. I give them the phone numbers of the doctor who casts her two states away and her local pediatrician, but it is a Sunday. By the middle of the day on Monday, the doctors have gotten hold of someone who has confirmed my stories. They stop asking questions. They stop staring at Margot’s casts. They shake my hand. They give me a chart to monitor Margot’s O2 saturation. Finally, I’m part of her care team again. When the numbers I record on the chart declare Margot’s again in good health, she is discharged.

Margot wears the casts for almost six months before her scheduled surgery. People approach me to ask the questions, “What’s wrong with her?” or “How did she get hurt?” Or, they declare their judgment more directly, “Watch out. Don’t want to hurt her again, Mom.”

I learn how to squirm my face into a smile. I answer their questions. I spell arthrogryposis. I print out cards that list the name of a website with information on the diagnosis. People approach me at the grocery store, the post office, the mall and the park. I find out that I’m no good with these unexpected social demands. I feel like I have to be friendly. To put on a good show. To fix their language about disability, even though it is a language that I barely understand. I say, “There is nothing wrong. Her name is Margot. This is her diagnosis.”

Some people walk up and point to Margot’s casts and say, “My daughter/granddaughter had to wear casts like that. They’re so heavy, aren’t they?”

I want to hug these people and thank them for closing the space between us. I try to mimic their vibe. I ask one woman whose daughter was born with clubfoot twenty years ago, “How did you deal with the scrutiny from strangers?”

She says, “Back then, we didn’t really leave the house. The world gets better all the time.”

I nod and think about all the times I hurried away to avoid a stranger’s questions instead of trying to smile and connect. I promise myself I’ll reach further. I tell myself, this is my job. I am a parent. Parents are supposed to carve out a space for their kids to move through in the world. I have to carve better.

Margot has surgery on her feet. A month later, her casts are removed. She’s eighteen months old when she is fitted for braces that wrap around the back of her calves, under her foot and around her ankle. It’s summer, so the braces are visible. As more people approach me with questions, I learn how to pack as much information as possible into a short phrase. I learn that sometimes, it’s okay to kindly tell them that our story is none of their business. Still, I feel a responsibility to answer their questions with a small story—her life, seen through the lens of her diagnosis. Like the story I’m telling you right now.

A week before Margot’s second birthday, she starts to crawl. Then she belly laughs and claps and bangs her feet on the ground. My husband and I call everyone in our family to share the news. Mobility. My mother-in-law says she’s so happy to hear it. Then she says, “I’m sure Margot will be normal in a couple of years.”

I don’t know how to respond, to relay the information that my mother-in-law already knows: Margot will most likely wear braces, use various devices and attend therapy throughout childhood. She will also go to the park and school. She will play with her friends and watch T.V. She will love different animals and argue with her sister about who gets to read which book. This is normal.

We’re already there.

Asha Dore’s essays have recently appeared in The Rumpus, Sweet, Burrow Press Review, Best of the Net and other venues. She lives with her husband and two daughters in the Pacific Northwest.

Nine Years After the NICU

Nine Years After the NICU

By Rebecca Hughes Parker

NICUI consider my daughters’ birthday to be in January. But I am the only one.

Their birth certificates read November 17, 2004 and that is the day they were hastily scooped out my womb, neonatologists standing by with oxygen. But, in my head, they did not fully join this world until January 2005, when the tubes and leads were removed from their tiny bodies and they were finally declared ready to breathe and digest on their own. The day they came home—a bitter cold day like the ones we have been having this winter—they were five-and-a-half-pound newborns. They looked and acted like two-day olds, but really it had already been two months.

We are lucky, so lucky. I know that. I know they are fine now. Better than fine. But I’m the one who was toting them around, slowly, inside of me at 29 weeks 5 days of pregnancy when my water broke in the middle of the night. And it didn’t feel so lucky then.

It didn’t feel so lucky when they were put in the more “intensive” part of the intensive care unit, with one nurse just for the two of them. I did not get to hold them when they were born. I was wheeled down hours later to their incubators so I could look at them. Look, but not touch.

It didn’t feel so lucky when I was told how much oxygen they were being given. When I was told that they each had a brain bleed. That one had a hole in her heart she would be given drugs to help close. That they needed caffeine-based drugs every day to stimulate them. That though they were relatively big for their gestational age, they were still far from ready to be born. We will “approximate the placenta” as best we can, they said, but the conditions in the NICU are not as good as the ones in the womb.

It didn’t feel so lucky when I peered at them through my tears and the thick plastic of the incubators. Lost in a web of tape, gauze and wires, their faces were hard to see. Their legs were bent in a frog-like position, common with preemies, I was told. What we could see, throbbing through paper-thin sheaths of downy skin, were their tiny, purple and stubbornly beating hearts. The lights overhead were harsh, the sounds loud. This was not the womb.

It didn’t feel so lucky when I had to pump breast milk eight times a day for babies who could not suck and had to be fed through a tube.  Or when one developed an intestinal infection and couldn’t have breast milk at all for weeks. Just “total protein nutrition” and lipids—predigested food through IV lines, IV lines that eventually caused her veins to collapse. They brought in the “IV specialist” nurse. She failed, her attempts punctuated by faint screams from the baby, now at least strong enough for her voice to be heard. The nurse shaved a bit of her hair and put the IV in her head. “It’s a good vein,” the nurse said sadly, “but we know parents don’t like to see an IV in their baby’s head.”

It didn’t feel so lucky when a phone call came late at night, four weeks in. Baby A is on a ventilator, the doctor said. She has two infections at once and her body has shut down. We were at the hospital as early as they would let us come. The head of the infectious diseases department and his interns stood around her incubator, taking notes. The tubes coming out of her nose and mouth were even bigger than they were at the beginning.

The sicker twin recovered slowly the next few weeks, the flood of antibiotics performing its task. The other twin still struggled to breathe on her own. She would go a day or two without an “episode”—when she started to turn blue and needed assistance, the numbers on her vital stats screen would cause the shrill beeping that rang in my head at night. She had to go five days with no episodes before she could be released. Those five days passed breath by breath.

We celebrate their birthday in November, of course. That is the only date that matters to the twins and to our friends and family. It is the date the NYC Department of Education used to determine that they should enter kindergarten at the (unadjusted) tender age of just 4 years 9 months old. The cutoff is December 31. To me, they were not even “here” on December 31. Now, they’re in school with kids who were a year old on that first cold day they left the hospital.

“They are tough,” my husband says whenever I voice concerns. He thinks that the NICU, while an awful experience for us all, had no long-lasting consequences for them. I know I’m being irrational and emotional, given my twins’ perfectly normal development after 18 months old, and the doctors’ shedding of the “adjusted” and “unadjusted” nomenclature at that point, but I’m not sure I’ll ever be fully convinced.

When the twins first came home, they had small dot-like marks all over their heels from the frequent blood tests. Every time I saw those marks I was reminded of the needles that pricked their heels all those days, days they should have been floating serenely in my womb.

As they grew, the marks faded. Recently, one of the twins was reading a book on the couch, her bare feet propped up on the arm. I saw a mark on her foot as I walked by and looked closer. It was a speck of dust. I blew it off. Her nine-year old feet, long and narrow like mine, were flawless once again. It appears that I may be the only one still scarred by the months in the NICU. There are no scars on their feet. Just in my head.

Rebecca Hughes Parker lives in Manhattan with her husband, a stay-at-home dad, and three daughters (including twins).  She is the Editor-in-Chief of an online legal publication about anti-corruption issues.  Previously, she was a litigator at a large law firm and a broadcast journalist.  She writes at rebeccahughesparker.com. Follow her on Twitter or connect with her on Facebook.

Have a Nice Trip

Have a Nice Trip

By Jill Cornfield

hollandartwebIf you have a baby with obvious problems, sooner or later someone will hand you an essay called “Welcome to Holland.” It compares having a baby to taking a trip—a valid enough metaphor. But this is a trip for the parents of “special” children. Instead of going to Italy, as they’ve planned, the parents wind up in Holland, where, Emily Perl Kingsley writes, the pace is slower. They are disappointed at first—they’ve dreamed about, planned and looked forward to Italy—but they come to appreciate the special beauty of Holland. Instead of Michelangelo, espresso, and churches, they come to love Rembrandt, tulips, and chocolate. For what it’s worth, some parents find solace in the metaphor. I’m just not one of them.

Our older son spent his first thirteen months in the hospital. He was a tiny baby, our first-born. My obstetricians—a quartet of women—were used to a more orderly sort of pregnancy. They were equipped to handle morning sickness, slightly high blood pressure and routine C-sections. When our baby was found to be way below the average weight on a sonogram, they stopped making quips about junk food and put me on bed rest. They grew increasingly distant as our son stubbornly refused to somehow make up the weight gain and catch up with the rest of his second-trimester cohort. Gradually my doctors handed me off to the high-risk doctors at the hospital, where I was ordered to leave bed rest and come in for daily sonograms, my main form of entertainment. “I promise you won’t be bored when the baby comes,” one said.

From the beginning, it seemed like a bad idea to have a baby delivered more than twelve weeks before term, but this is what the doctors planned. “We’ll take him out and they’ll make him grow,” said one perinatologist, referring to the neonatal intensive care unit (NICU) where he’d be placed. This sounded far-fetched to me, and I didn’t say anything, but I must have looked doubtful because she declared, “A lot of parents are really glad to have the baby out and in the nursery where they can take care of him.”

This was the day I went in for a sonogram and the perinatologist came in, went behind the curtain, and looked at the technician’s numbers. She sighed loudly before greeting me. “I’ll pray for you,” she promised. Meanwhile, the baby (I didn’t know he was a boy yet) zoomed around inside me, back and forth, over and over, in the vastness of my uterus, his tiny size making him hard to find on the sonogram but giving him lots of room to dive and roll. How bad could things be when the baby was so lively?

We spoke to the head of the neonatal unit, a dapper man with a silvery goatee who spoke in calm, measured tones. He didn’t think it was out of the ordinary to have a baby delivered between twenty-six and twenty-eight weeks’ gestation. “Most of our babies go home around the time of their due date,” he informed us. “At twenty-three, twenty-four weeks, things are rough. But you’re looking at something like a ninety percent survival rate.” My husband asked him what had led to his interest in prematurity. “All three of my children were premature,” he said, and we believed him, though we later found out they were premature for having arrived two to three weeks—not two to three months—early.

We were afraid to ask the real questions. Would our son walk? Talk? Would he walk with us to the local kindergarten, or would he ride the short school bus? We reasoned that the doctor would tell us anything we really needed to know.
Nothing prepared me for the sight of Alexander: one pound, five ounces. I’d used more butter than that to make flourless chocolate cakes. I spent about a week in a crying marathon, which made the intensive care nurses very uncomfortable, although one nurse sang to me and then said, on our second day there, that it was all right to cry and that the baby was still connected to me. I found this somehow comforting, even though we hadn’t done a very good job, Alex and I, of making him grow.

“Did he have a brain bleed? Does he have necrotizing enteral colitis? No? Then he’s fine,” snapped my cousin, who is a doctor. But I was not happy, not hopeful. Everything—including breathing, eating and medical adjectives my spell-checker didn’t recognize—was a struggle.

People tell you with the best of intentions that you’ll find yourself on a roller coaster in the NICU: There are ups and downs, good times and bad. We found it to be more like a game of pinball, with our little son playing the part of the metal ball that gets smacked around. Our highlights included intubations, painful eye exams, and spinal taps without anesthesia (“We don’t like to anesthetize these little ones—it’s too dangerous,” said the ophthalmologist), an almost total lack of weight gain (“It’s hard to gain weight on the vent,” said one doctor ruefully, although they had always been so enthusiastic about the benefits of artificial respiration), a respiratory virus that landed our son back on a ventilator, chemically paralyzed so he wouldn’t fight the vent down his throat (still no anesthesia). “Well,” said the neonatal attending physician, “I’ve seen children get this and get over it. And I’ve seen children get this and not get over it,” prompting my brother-in-law to say, “Sounds like the doctor’s taking it pretty well.”

All our “happy” news was happy only by dint of not being tragic. An X-ray: the baby’s lungs are less cloudy! An eye exam: the baby isn’t going blind! A head sonogram: the baby’s brain isn’t bleeding!

Our two months’ stay turned into three, then four months. I watched summer shimmer on my way to the hospital each day. Then leaves were falling. Then I had to dig out winter clothes.

Our insurance company paid and paid without comment the bills for $19,000, $38,000, $16,000. I think when we were all done, thirteen months later, the total topped out at close to a million, a figure that had been negotiated downward by insurance.

*    *    *

“It’s slower-paced than Italy, less flashy than Italy,” writes Kingsley in “Welcome to Holland.”

I was confused when someone gave me Kingsley’s essay during Alex’s second month or so. We certainly didn’t know at that point that he would be disabled in any way; we certainly didn’t know we were in for many more months of invasive medical presence in our lives. Did the person who gave me “Holland” think Alex would be mentally retarded? Did she think I needed a different lens to view our experience as one that was beautiful if you looked at it the right way?

It turns out that lots of people with babies in the NICU (Neonatal Intensive Care Unit) are given the Holland essay, a piece I think is completely off the mark for anyone with an extremely premature baby, because Kingsley specifically says, “It’s just a different place.”

But most NICUs aren’t just “different.” Most NICUs are alarmingly alien. You have to adjust to flashing monitor lights and tiny sirens, the nurses and doctors and residents and fellows and social workers and sub-specialists—pulmonologists and gastroenterologists and geneticists and neurologists and radiologists and administrators—that come and go. You learn a hierarchy and a discipline you never dreamed you’d have to learn just to have a baby.

Our NICU experience has forever separated me from mothers of typically developing children, even though since the birth of my second son I’m the mother of a typically developing child myself. Watching women—other mothers—leave the hospital with their babies, balloons, and still-swollen bellies filled me with jealousy, rage, and misery. Rage that I’d been put in this situation. Jealousy over what they had and what I’d lost. Misery that the sight of someone else’s happiness filled me with hatred.

Soon after I read “Holland,” a therapist breezed into the isolation room we shared with another family and introduced herself. “Hi! I’m back from maternity leave!” she said. Unable to smile and greet her pleasantly, I settled for a mumbled hello, looking down at some knitting that I’d intended to be stress relieving.

Kingsley writes that it’s important to note that you’re not in a “horrible, disgusting, filthy place, full of pestilence, famine and disease.” But the experience of having a baby in the hospital is akin to being tortured in a Third World prison, leading many NICU survivors to write their own parodies and responses to Kingsley’s piece. A mother I know wrote “Welcome to Afghanistan.” Another friend agrees that having a baby in the hospital is like taking a trip to Holland—under German occupation.

Two pieces floating around the Internet—”Welcome to Beirut,” by Susan F. Rzucidlo and “Holland, Schmolland” by Laura Kreuger Crawford—give the perspective of life in another country from mothers of autistic children.

“Are they kidding? We are not in some peaceful countryside dotted with windmills,” writes Crawford. “We are in a country under siege, dodging bombs, trying to board overloaded helicopters, bribing officials—all the while thinking, ‘What happened to our beautiful life?'”

“Bruised and dazed, you don’t know where you are . . . You don’t know the language and you don’t know what is going on,” writes Rzucidlo. “Bombs are dropping . . . Bullets whiz by.”

We now live in “our own country, with its own unique traditions and customs,” says Crawford. “It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.” She goes on to describe Schmutch customs, which mirror the traits of autism. “The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful.”

“Holland” has apparently struck a deep nerve.

Parents of autistic children find “Holland” particularly irritating, I think, because the stresses of living with a child who is semi- or non-communicative are tremendous. There are no smiles from sympathetic native speakers. You don’t speak the language, and there’s a real chance you never will.

“Holland” makes it seem as though disability is a one-size-fits-all package tour, when disabilities and their effects on families are as finely shaded as the differences among pensiones, hostels, and four-star hotels. Most families learn to cope with mild dyslexia, but most parents of severely brain-damaged children generally grapple with serious depression throughout their lives. It feels like “Holland” is telling us not only not to feel sad, but to feel happy in a specific way. Like the hospital personnel who seemed amazed or put out whenever I expressed sadness or anger, Kingsley seems to believe that emotional responses can be generated consciously, and that a little positive thinking is all that’s needed to smooth some ruffled travel plans. Hey, it’s not a canceled boat ride or a closed museum. It’s an adventure!

How should I feel? “Holland” told me, back in those NICU days, that I should feel good. But I didn’t. There is a crumb tossed at the end, where Kingsley acknowledges that the disability of a child is indeed cause for sorrow, calling it “a very, very significant loss.” You’ll feel sad, she says, but if you focus exclusively on the sadness you’ll miss out on the beauty of the life of your child. The mother of another premature baby wrote that her problem with “Holland” is that it was always sent to her by someone without a disabled child, and it made her hesitate to express any negative feelings—”kind of like they were saying, ‘This is how you should feel. Now no more talk about pain, grief, depression, and exhaustion from you!’ “

To the social workers and perinatologists who claimed that parents are thrilled to have a live baby—even one in a hospital—I can say only that not everybody responds identically to similar situations. One mother used to post on an online board for the parents of premature babies. Her child was in the NICU for eighteen days, and I used to wonder why she would post messages at all when so many of us had children who spent months in the hospital. Now I realize that those eighteen days were hell for her—a nightmare that she still relived—and that her worries for her child were every bit as real and valid as mine for my son.

*    *    *

At the same time parents are struggling with their baby’s NICU course, they are reassured by NICU staff that all will likely turn out well. The prevailing NICU attitude was (and still is) that most premature babies do just fine. That more than sixty percent of babies with a birth weight over three pounds grow up without significant disability.

But my gut always said otherwise, and seven years after the NICU, our son is, in fact, developmentally disabled. Not delayed: that implies he will catch up with other children. When Alex was three, the school board reviewed his evaluations and classified him as a child with significant and severe delays, about fifty percent in most areas, qualifying him for a funded special-ed preschool with built-in therapists. We were glad, because it was what he needed. We were sad, because it was such a clear-cut case.

By now, I’ve had plenty of time to reflect on the sort of expectations Kingsley writes about in “Holland.” I never wanted brilliant children. I never dreamed of my children going to Princeton, Yale, Harvard, taking the academic world by storm in physics or comparative literature. All I really wanted was a baby to play with and some more company at the dinner table. I imagined taking walks in late winter, looking for trees in bud and the first crocuses, discussing how little birds sometimes take their baths in water, other times in dust. I looked forward to all the school stuff–the mimeographed homework assignments and gluey projects and teachers mean or nice and leaving the house on a dark October evening for open school night after a hurried spaghetti dinner.

In the NICU days I used to pray that Alex not be retarded, that he not have cerebral palsy, which I always thought meant not being able to talk. What I didn’t foresee was a child who would hug affectionately and even kiss, sort of, but be so lukewarm about reciprocating anything, from a word to a ball to a willingness to engage in play.

Today Alex is six and a half. He is a child with PDD-NOS, pervasive developmental delay, not otherwise specified: a notch on the autism spectrum. In theory, that puts us quite squarely in Kingsley country. Where once we had a small baby and some hopes of a typical life, we realize now we live in a strange land we didn’t plan to visit.

For years we didn’t go anywhere, and it seemed that having a child with a communicative disorder was more akin to staying home while other parents traveled: we watched them take off for the Hamptons or the Netherlands while we were stuck in the same hot neighborhood. Instead of rejuvenating changes of vista, we summered on steamy streets. While other people spent some time in air-conditioned airport lounges before arriving at beach houses or charming old-world cafés, we were left with nothing more cooling than the sprinklers in city parks and an occasional Mr. Softee truck.

In fact, life with Alex brings to mind not travel, but a different metaphor. Alex is a cat of a boy: smaller than average, he’s sleek and slim. He has my dark eyes and his father’s dark hair and sometimes, it seems, the mannerisms of a cat we used to have—a quiet, self-contained creature who didn’t often seek attention or affection, though he did welcome it. If Alex has a toy or a puzzle or a video he likes, he doesn’t need you.

When your child can’t tell you what’s bothering him, whether it’s a fever or nausea or a bad day at school, it’s not so very different from a sick pet. I never knew how simple a child’s illness could be until my younger son got into bed with me late one night, hot and crying. “My ear hurts!” he moaned. He had Motrin; we went back to sleep; we went straight to the doctor in the morning and said, “He says his ear hurts.”

Alex’s teacher for kindergarten and first grade writes daily to let us know if he seemed tired or enjoyed circle time. If not for her detailed letters, we’d never know that he was doing yoga, that he is fond of carrying around a plush hippo, that he seems to like spending time with his classmate Robert, never know what the red Special Olympics ribbon was for: courage, sharing, joy. What did he share? What gave him joy?

We live in a Hispanic neighborhood where the neighbors know Alex and seem fond of him, perhaps because they have a relative or another neighbor with an autistic child. “Alex is drinking from the puddle at the sprinklers!” they’ll holler at me on the playground. When he rummages through their strollers or bags, they laugh and let him. Often they share with him the chips that attracted him. Occasionally they gently lead him away.

In the playgrounds of more moneyed neighborhoods, we get the looks. Yes, I know he’s in someone else’s stroller. I know he’s taking a plush Elmo doll from a toddler who is walking with her Jamaican nanny. I know he’s spinning with his eyes shut, or leaning too far back on the swing, his expression different from other children’s. Why am I not getting up every fifteen seconds to stop him? If he’s in someone’s bag, I will intervene. But the toddlers are always well attended. The spinning or lapping from a puddle isn’t hurting anyone. And I need to sit in the sun, on this bench and, for a moment, not chase, not intervene.

Perhaps my biggest problem with Kingsley’s metaphor is that it simply doesn’t hold water. A traveler can always catch the next flight out, but no matter which parental country you find yourself in—whether typically developing or autistic or wheelchair-bound—you can’t fly out again.

Author’s Note:  Ironically, in the United States outcomes for children born prematurely are poorer than those of their counterparts in the Netherlands, where neonates below specific birth weights and gestational ages are generally not resuscitated.

Brain, Child (Summer 2005)

Jill Cornfield lives in New York City with her husband and two sons.

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