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.
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.
“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 Travel