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Raising a Rare Girl: A Memoir

Product ID : 43887702


Galleon Product ID 43887702
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About Raising A Rare Girl: A Memoir

Product Description 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. Review “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 perspect