Raising a Rare Girl

Description

“A remarkable book . . . I found myself thinking that all expectant and new parents should read it.” —Michelle Slater

A New York Times Book Review Editors’ Choice

In Raising a Rare Girl, Lanier explores how to defy the tyranny of normal and embrace parenthood as a spiritual practice that breaks us open in the best of ways.

Like many women of her generation, when Heather Lanier was expecting her first child she did everything by the book in the hope that she could create a SuperBaby, a supremely healthy human destined for a high-achieving future.

But her daughter Fiona challenged all of Lanier’s preconceptions. Born with an ultra-rare syndrome known as Wolf-Hirschhorn, Fiona received a daunting prognosis: she would experience significant developmental delays and might not reach her second birthday. The diagnosis obliterated Lanier’s perfectionist tendencies, along with her most closely held beliefs about certainty, vulnerability, God, and love.

With tiny bits of mozzarella cheese, a walker rolled to library story time, a talking iPad app, and a whole lot of pop and reggae, mother and daughter spend their days doing whatever it takes to give Fiona nourishment, movement, and language. Loving Fiona opens Lanier up to new understandings of what it means to be human, what it takes to be a mother, and above all, the aching joy and wonder that come from embracing the unique life of her rare girl.“Lanier’s memoir is now on the short list of books I’ll give, when the time comes, to my own pregnant daughters. It’s not just because a wise woman ought, in this as in all else, to be prepared for disaster even as she hopes for delight. It’s not even because Lanier’s writing is clean and beautiful. . . Lanier shines a clear light on what we sign up for when we allow a human soul to come through us and into the world, in whatever ‘interesting and beautiful package’ that soul might find. . . [She] teases out the glory, charm and humor of these moments, letting us adore her child with her.” —Kate Braestrup, New York Times Book Review 
 
“Raising a Rare Girl, a memoir by Heather Kirn Lanier, is a remarkable book…I found myself thinking that all expectant and new parents should read it. Lanier’s thoughtful, complex, loving account of raising her daughter Fiona—now 8—who was born with an extremely rare genetic deletion that results in a syndrome called Wolf-Hirschhorn, is a beautiful and hopeful book that is also unflinching about the day-to-day challenges of her family’s life. While every family’s experience of raising a child with disabilities will come with its own specific challenges, Lanier’s ultimate realization that the question to ask herself was not Will my daughter ever walk or talk? but How can I best love her, just as she is?” —Michelle Herman, Slate
 
“This is an intensely reflective and honest account….Readers share moments of anguish, terror, laughter, and triumph, as feisty Fiona grows and conquers milestones in her own unique ways. The book ends as Fiona enters Kindergarten, confident, quirky, and rare, indeed.”—Booklist 

“Moving and insightful . . . Lanier struggles with the attitudes of physicians and others who regard her daughter as ‘damaged’ and beautifully details her own acceptance. . . This intimate, powerful memoir will resonate with parents, whether of ‘superbabies’ or not.” —Publishers Weekly
 
“Lanier writes with powerful humanity as she charts her course. . . Her abiding love for Fiona is clear throughout, and it’s heartening to watch her learn to reject the idea that disability is deficit. . . A book of pluck, spirit, and great emotion with an appealing perspective on the value of each human life.” —Kirkus Reviews

“Heather Lanier has written an exquisite narrative that is full of joy, honesty, and pain, as she details the unexpected change in her life as a new mother when her daughter is born with a rare syndrome. In Raising a Rare Girl, Lanier writes with passion in each line, infusing wisdom in her stunning prose as she shares the most intimate moments of new motherhood.  Lanier has created a book that could only be written by someone with the skill of poet and heart of an optimist. And at a time when mothers are expected to be perfect as parents, advocates, professionals, and partners, Lanier redefines the word perfect, and in doing so, teaches us all to find beauty in the necessary imperfections of our lives.”—Elizabeth L Silver, author of The Tincture of Time

“This gem of a memoir reminds us that when we become parents, we are signing up for the precarious vulnerability of being human. Gorgeously written, and simultaneously as warm and intimate as a conversation with your wisest friend, Raising a Rare Girl is a moving testament to the transcendence of unconditional love.”—Liane Kupferberg Carter, author of Ketchup is My Favorite Vegetable

“Heather Lanier has written a brave and beautiful memoir on her journey in early pregnancy as she hoped to create a SuperBaby, and then as she coped with the shocking news that her newborn daughter had been born with a rare syndrome that would require ongoing interventions for walking and talking. Lanier’s prose is dazzling, and her honesty is crushing. In Raising a Rare Girl, she demonstrates the depths of maternal love—and, in our historically perfectionistic society, the true meaning of triumph.” —Gabrielle Glaser, author of American Baby

“Heather Lanier’s Raising a Rare Girl is that rare soaring book: a gripping read that delivers spiritual reflection and serious cultural analysis on disability and parenthood. These sentences are sheer poetry, and in the service of dissecting the ableism in our culture, they are also piercing and necessary.” —Sonya Huber, author of Pain Woman Takes Your Keys and Other Essays from a Nervous System

“Heather Lanier has crafted a provocative examination of the difference between who we think we are and our being. Raising a Rare Girl is, at turns, heartbreaking and heart-soaring. It’s a hard-earned, generous, and insightful investigation of our bodies and our souls, grief and joy, holding on tight and letting go, as well as the worlds that take shape around us and the worlds we create from within.”—Julianna Baggott, author of Harriet Wolf’s Seventh Book of Wonders

“Raising a Rare Girl is not just a memoir about Heather Lanier’s first few years as a mother, nor is it only about the challenges of raising a child with a rare syndrome in a world that does not welcome differences. It’s a tender and powerful book that asks us to look honestly at what we expect of our children, each other, and ourselves, and explores the unexpected joy that comes when we release those expectations. Lanier had no choice but to let go of her expectations of motherhood, herself, and her baby when Fiona came into this world, and we are the lucky recipients of the loving wisdom she gained in doing so.” —Kerry Egan, author of On Living

“What does it mean to be a ‘good’ parent in an age of over-parenting? And why do so many of us assume if we just do everything ‘right,’ we can make the ‘perfect,’ baby? With immense tenderness, intelligence, and humor, Heather Lanier explores these questions in her memoir about raising a rare girl. The result is an arresting and beautiful book about the transformative power of unconditional love. Everyone should read it.”—Kim Brooks, author of Small Animals  

“With Raising a Rare Girl, Heather Lanier has written a luminous memoir about disability, life, and ardor. There is wholeheartedness and passion in this tale of parental joy and wisdom.” —Stephen Kuusisto, author of Have Dog, Will TravelHeather Lanier is an essayist, memoirist, and poet. She’s the author of two award-winning poetry chapbooks: Heart-Shaped Bed in Hiroshima and The Story You Tell Yourself, winner of the Wick Poetry Open Chapbook Competition. Her nonfiction has appeared in Salon, The Southern Review, The Threepenny Review, Fourth Genre, Brevity, Vela, and elsewhere. She has received an Ohio Arts Council Individual Excellence Award and a Vermont Creation Grant. A graduate of Ohio State University’s MFA program, she’s now an Assistant Professor of Creative Nonfiction at Rowan University. Her TED talk, “‘Good’ and ‘Bad’ Are Incomplete Stories We Tell Ourselves,” has been viewed over two million times.Chapter One

When I was pregnant, I tried to make a SuperBaby. I didn’t realize I was doing this. I thought I’d long ago shed the theory that a body could be made perfect. But looking back, my goal was clear. I swallowed capsules of mercury-­free DHA to help grow my SuperBaby’s brain. I filled my grocery cart with organic fruits and veggies, letting our monthly food bill consume a quarter of our income. Of course, I followed the medical advice standard for women of my generation. I avoided soft cheeses and cold cuts, and I microwaved my smoked turkey slices so they curled into crispy-­edged Frisbees. But I went above and beyond. I gave up wheat for reasons I forget. I kept my flip phone at least an arm’s length away from my belly to avoid damaging my Super­Baby with electromagnetic waves. I tried not to let a kernel of GMO corn touch my estrogen-­laden tongue. I spoke to my Super­Baby, welcoming it into my body so it would feel loved and supported. I avoided finding out my SuperBaby’s sex so I wouldn’t project gender roles onto her/him/them. I slept on my left side because I’d read it was best for my circulation, which was in turn best for Baby’s. In the last months, I never once reclined on a sofa because I’d heard the position could put a baby posterior, which would dramatically increase my chances of having a C-­section, which would rob my baby of certain vaginal bacteria that was beneficial for reasons cited in academic journals I couldn’t explain. Instead, I always leaned forward, my elbows propped on my spread knees like I was forever on the verge of imparting a proverb.

And I prepared meticulously for an unmedicated birth. In the final months of pregnancy, I ended each hip-­aching day by popping earbuds into my ears, closing my eyes, and listening to Hypno­babies, a natural-­birthing program that guided me through self-­hypnosis.

My baby will be born healthy and at the perfect time, a woman’s voice uttered as I descended into a dreamy soup of electronica chords and affirmations.

My body is made to give birth nice and easy.

I look forward to giving birth with happiness.

My baby is developing normally and is healthy and strong.

The words were supposed to lodge in my subconscious, creating the reality I wanted: a pain-­free birth and a perfect child. I focus on all going right . . .

After thirty-­six hours of labor, the last five of which can best be described as an apocalypse in my perineum, I pushed my baby out and into the warm waters of a hospital tub. For a second, she dangled before me, legs curled toward her chest. Without my glasses, my child appeared to me as a bean-­shaped blur suspended in midair.

My husband, Justin, later told me that this was the point at which the nurses became palpably anxious.

“A peanut,” said the midwife. “Just a wittle peanut.” That was about the kindest thing a medical professional would say about my newborn’s body.

Put Baby right on Momma’s chest, the books had told me, because oxytocin would flow and enhance SuperBaby with strong bonding. That was in our birthing plan.

But the midwife ordered my husband: “Dad, you need to cut the cord.”

“We were gonna wait until the cord stops . . . ,” Justin said. Cutting a cord prematurely, I’d read, could rob SuperBaby of vital nutrients and . . .

In a voice used to direct people swiftly but without panic toward an emergency exit, she said, “No, we need to get Baby on the table now.”

My husband took scissors to the cord, and just like that, the stranger who’d lived inside me for nine months was detached, then whisked from my fuzzy line of vision. Too spent from the thirty-­six-­hour feat, I closed my eyes and felt the weight of the nine months lift. I’d made it to the other side.

I moved to a bed. Flat on my back, waiting to deliver the ­placenta, I turned my head to the nurse beside me. “Is the baby okay?” I asked. Labor thrusts a woman into the psychological stratosphere, and I was coming back down.

But the nurse didn’t answer.

A few minutes later, though, the midwife returned with my new family member. “She’s fine. Just small.”

And there she was, my daughter, this product of wheatgrass and self-­hypnosis and free-­range eggs, of hope and risk and love and a maddeningly loud biological urge. She lay on my chest, perplexed and limp. Her vernix-­covered head was no larger than a grapefruit. My hand cradled its entirety. Her black eyes stared up at me, alert and confused. My husband curled beside me and gazed at her in awe. Someone snapped a photo.

We named her Fiona Soen Ray. Fiona because I liked it. Ray after Justin’s father. And Soen after Soen Nakagawa Roshi, an eccentric Zen master who played jokes on his students. We weren’t trying in the least to be prophetic.

“Welcome to the world,” I said. A nurse was inflating a blood pressure cuff around my arm. “Or at least, one very small corner of the world,” I added.

The nurse laughed through her nose.

A baby receives her first test within sixty seconds of birth. Anesthesiologist Virginia Apgar created the Apgar assessment in 1952 to study the effects of anesthesia on newborns, but the test also proved useful in determining whether a baby needed immediate medical interventions. Is Baby’s heart beating? Is Baby breathing? Is Baby reactive? These questions and others help a doctor, midwife, or nurse calculate a baby’s immediate health post-­birth, and the medical professional assigns the baby a “score” on a scale from zero to ten. Zero means the baby has no pulse, isn’t moving or breathing, doesn’t respond to a mild pinch, and is bluish-­gray or pale. Ten means the baby is actively moving, responds strongly to a mild pinch, has a heart rate of at least 100 beats per minute, is a healthy color, and breathes robustly enough to produce a “satisfying cry,” as Apgar wrote.

When I was pregnant with Fiona, I saw that women on natural birthing websites used the Apgar score as a measurement for their achievements. Within the very first minute of a newborn’s life, a mother could get confirmation of her child’s ­potential SuperBaby status. Mothers who made it through birth without any drugs sometimes bragged that their babies scored a “perfect ten.” Apgar herself acknowledged that a score of ten is unusual, given that most newborns have slightly blue hands or feet immediately after birth. The phrase—­perfect ten—­always reminded me of short-­haired Olympian Mary Lou Retton dismounting the gymnastics vault in her American flag leotard, arms held high. I both resisted the mothers’ competitive tone and kind of bought into it.

I also figured the competition was a modern-­day perversion of Apgar’s purpose—­a by-­product of the perfectionistic pressures that middle-­class women of my generation felt. But the language of competition is embedded in Virginia Apgar’s own writing. In her 1953 proposal for this “new method” of testing babies, she talks about “ ‘grading’ of [the] newborn infant” and “giving a ‘score’ to a patient.” She writes, “It has been most gratifying to note the enthusiastic interest and competitive spirit displayed by the obstetric house staff who took great pride in a baby with a high score.” In other words, striving for SuperBabies has roots almost seventy years old—­and older still.

In the Dayton hospital, after Fiona was whisked away for those few minutes, the midwife was examining her body, asking questions: How was the baby breathing? How fast was her heart beating? Was her body moving? What color was her skin tone? Did she respond to stimulation? Fiona’s scores at the one-­ and five-­minute marks were a respectable eight and nine. Apgar called her “normal.” It was the first and last time anyone would.

Fiona had been born in the evening, and by the next morning, a single task had been scrawled on my room’s whiteboard beneath the phrase Patient Goals. That word was Rest.

In my thirty-­two years, I’d never seen such a short to-­do list. I’d always been an overachiever, creating long lists and mea­suring my worth by what I could cross off. For the past nine months, I was not only pregnant, I’d taken on a new job as a visiting professor of English, taught four courses per semester, managed chronic nausea between classes, and worked on a new poetry collection in my “spare” time. In the years before that, I’d earned a master’s degree in creative writing while cobbling together a few part-­time gigs, and I’d earned another master’s degree in teaching while working full-­time as a high school English teacher. I was used to overdoing it. For the first time, Rest was my sole job for the day. Rest was all anyone required. I’d already done both the impossible and the everyday: I’d brought a human into the world. Who needed to expect anything else from herself? I put on pajamas and ordered an omelet.

But as that first morning wore on, it became clear from the nurses and doctors that I needed to do something else. I needed to worry.

Fiona was four pounds, twelve ounces. Given the nurses’ and doctors’ shock when they relayed this weight to one another, I learned that four pounds, twelve ounces was an alarming size for an infant born full-­term. Someone showed me a chart on which seven half-­rainbows shot across graph paper. The half-­rainbows began close together, at the word “birth,” each somewhere between five and nine pounds. This chart illustrated the weight range of normal babies at birth and beyond. There was a handwritten X below all of them, scratched in ballpoint pen. This was Fiona, someone told me. She was in the bowels of the chart.

The nurses made clear that I had much more to do than rest. I needed to get Fiona eating. And if I wanted to breastfeed, I needed to get Fiona latching. I needed to try every two hours, and the nurses and I recorded my efforts on a feeding log: how long, which boob, whether Fiona and I were successful. We weren’t. So after each attempt, I also had to pump. I attached myself to a hospital-­grade breast pump that was wheeled in and out of the room and squeezed tiny drops of colostrum from me, which Justin then drop-­fed into Fiona’s mouth. This whole process took sometimes ninety minutes, which, when repeated every two hours, left approximately thirty minutes to obey the blessed command on my whiteboard.US