Raising a rare girl A memoir

Heather Kirn Lanier

Book - 2020

"The author's daughter was born with a very rare genetic syndrome and faced a daunting prognosis: she would be a fraction of normal size, have innumerable physical and mental difficulties and likely a shortened lifespan. Now, at age eight she is attending standard public school classes. This is the story of her family's journey"--

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Subjects
Genres
Biographies
Published
New York : Penguin Press 2020.
Language
English
Main Author
Heather Kirn Lanier (author)
Physical Description
311 pages : illustrations ; 24 cm
Bibliography
Includes bibliographical references (pages 305-311).
ISBN
9780525559634
Contents unavailable.
Review by Booklist Review

This is an intensely reflective and honest account of the author's first five years with her daughter, Fiona, who was born with Wolf-Hirschhorn syndrome, a rare genetic variation. Lanier was exceptionally careful during her pregnancy. She followed medical advice and prepared herself spiritually, hoping to have a super healthy baby. When full-term but tiny Fiona was born, Heather and her husband (a Buddhist, Episcopalian priest, and ex-Catholic monk) were unprepared for the devastating prognosis: probable intellectual disability, seizures, failure to thrive, lack of ability to talk or walk, and a 30 percent mortality rate. As readers follow Fiona's precarious first years, Lanier candidly explores her evolving emotions: guilt, despair, grief, acknowledgment of ingrained parental competitiveness, and questioning of what constitutes normal. She also documents her dealings with doctors, specialists, and therapists, whose interventions range from innovative solutions to advice for institutionalization. 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.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

In this moving and insightful memoir, poet Lanier (The Story You Tell Yourself) shares her experiences as the mother of a child born with a rare chromosomal disorder. At the age of 32, Lanier becomes pregnant with her and her Episcopalian-priest-in-training husband's first baby. She writes candidly of wanting to give birth to a "superbaby," and during her pregnancy she strives to be healthy in order to produce a perfect child. But the baby, Fiona, is born weighing less than five pounds, and by her three-month checkup still resembles a newborn. She's soon diagnosed with Wolf-Hirschhorn syndrome, which can lead to intellectual disability and the inability to walk or speak. After the author's husband gets a post at an Episcopal church and the family moves from Ohio to Vermont, Lanier spends her days working with Fiona and various therapists, seeking to find the best ways to meet Fiona's needs and help her learn to communicate. Lanier struggles with the attitudes of physicians and others who regard her daughter as "damaged" and beautifully details her own acceptance as well as the development of her special needs child (in time, Fiona walks, speaks with the help of a communication device, and attends public school). This intimate, powerful memoir will resonate with parents, whether of "superbabies" or not. (July)

(c) Copyright PWxyz, LLC. All rights reserved
Review by Library Journal Review

"Rare children" are children diagnosed with a disease that affects less than five percent of individuals. Lanier's (The Story You Tell Yourself) daughter Fiona was diagnosed with Wolf-Hirchhorn Syndrome, a disorder that affects only one in 50,000 people. From her complicated feelings when seeing able-bodied babies to her anxiety during her subsequent pregnancy, the author chronicles the many struggles in raising a "rare girl." Yet Lanier also shares the joys of discovering her child's hidden love for music and propensity for clapping and her elation when Fiona learned to nod, increasing communication among family members. VERDICT Lanier's memoir will resonate with a wide range of readers.

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

A poet and creative nonfiction professor grapples with motherhood and the meaning of life in this memoir of raising her developmentally challenged daughter, Fiona. As Lanier notes at the beginning, she had followed all the best-practices advice throughout her pregnancy--organic fruits and vegetables, no GMO, maintaining a seated position leaning forward with "my elbows propped on my spread knees like I was forever on the verge of imparting a proverb"--to make certain that hers would be a "SuperBaby." But Fiona was born with the extremely rare Wolf-Hirschhorn syndrome, which has profound developmental affects relative to mental growth, speech, coordination, and other areas. It has a high youthful mortality rate, and "there is no specific treatment." The author struggled mightily to cope with the severity of the diagnosis: "I was free-falling….My sadness was no longer the selfish reaction that my baby wasn't, would not be perfect, but that we could lose her….My cry was an emptying….My cry was a collapse." Lanier writes with powerful humanity as she charts her course, and one of the first lessons she learned was that when anyone chooses to have a child, they "sign up for the fragility of life." The author is especially sharp on her journey to remake herself, to pivot away from "the desperate, clinging, distraught version who wanted what her child was not." Along the way, she forcefully condemns the concept of a hierarchy of lives worth living. Her abiding love for Fiona is clear throughout, and it's heartening to watch her learn to reject the idea that disability is deficit. "We can only open our arms, say welcome," she writes, and she is clear that this means being vulnerable, "often fallible, but always open, and raw, and real. And present to the whole messy world." A book of pluck, spirit, and great emotion with an appealing perspective on the value of each human life. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

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. Excerpted from Raising a Rare Girl: A Memoir by Heather Lanier All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.