Raising a Rare Girl: A Memoir

Raising a Rare Girl: A Memoir

by Heather Lanier


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New York Times Book Review Editors' Choice 

Kate Bowler's The Everything Happens Book Club Pick! 

Award-winning writer Heather Lanier's memoir about raising a child with a rare syndrome, defying the tyranny of normal, and embracing parenthood as a spiritual practice that breaks us open in the best of ways

Like many women of her generation, Heather Lanier did everything by the book when she was expecting her first child. She ate organic foods, recited affirmations, and drew up a birth plan for an unmedicated labor in the hopes that she could create a SuperBaby, an ultra-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. Not only had Lanier failed to produce a SuperBaby, she now fiercely loved a child that the world would sometimes reject. 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. They also confront society's attitudes toward disability and the often cruel assumptions made about Fiona's worth. Lanier realizes the biggest question is not, Will my daughter walk or talk? but, How can I best love my girl, just as she is?

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.

Product Details

ISBN-13: 9780525559634
Publisher: Penguin Publishing Group
Publication date: 07/07/2020
Pages: 320
Sales rank: 184,179
Product dimensions: 5.80(w) x 9.10(h) x 1.10(d)

About the Author

Heather 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.

Read an Excerpt

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.

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