A 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 who 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.
“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)