“An arresting and beautiful book about the transformative power of unconditional love. Everyone should read it.”

–Kim Brooks, Small Animals

Praise

“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

“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.”—Elizabeth L Silver, author of The Tincture of Time  

“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

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

“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

“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.” —Kerry Egan, author of On Living

“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

“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 

About Raising a Rare Girl

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.