A memoir about parenting, disability, and the strange beauty of being human.
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, writer 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 labour 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 and love.
With tiny bits of mozzarella cheese, a walker rolled to library story time, a talking iPad app and a whole lot of rock 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 realises 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.
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. - author of Pain Woman Takes Your Keys and Other Essays from a Nervous System
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. - author of On Living