Raising a Rare Girl

A Memoir

By: Heather Lanier

Narrated by: Rebecca Lowman

Length: 9 hrs and 26 mins

Publisher's summary

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.

©2020 Heather Lanier (P)2020 Penguin Audio

Critic reviews

“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)

As a Developmental Pediatrician — a world class look at parenting

What a wonderful, insightful, endearing, perspective on the emotional ups and downs of being a parent of a special needs child.

The joys and the triumphs, the initial sadness, but always the unwavering love is clear

And the writing — what a delightful read. Appropriate humor that all parents will appreciate while writing such a moving and heartfelt book, is hard to pull off, but Heather Lanier does so !

And Rebecca Lowman pulls it all together with a stellar performance

Amazing

As the parent of able bodIed kids and grandkids, I was brought to a fuller appreciation of the miracles of birth and development by this book and this writer. Another reviewer was disappointed by the shortage of tips for parenting the different child. I view this book as a way to build the emotional foundation on which all parenting must be based.

Incredible, beautifully written tale

I don’t usually review books but this one is so excellent I had to. It’s engaging, beautifully written and powerfully told. Important notes on people with special needs, and their caregivers, that we should all read. Profoundly comforting and inspiring.

Like a hug from another mom who gets it

I love this book so much. It’s so beautiful and captures my heart with words I needed but didn’t have. Such a gift.

Wonderful memoir

It's a wonderful memoir and very well written. The author paints a good picture of life with a special needs child. Highly recommend for everyone to read to better understand how special of a gift these children are.

Important message to hear

This book is excellent and heartwarming and encouraging. But even more importantly it is enlightening!!!!!

Beautiful book

Not only loved the book, but ending up loving the child. She sounds absolutely adorable and worth all the work the parents put in. Plus if the parents are reading this. great choice of names.

Gorgeous

So uplifting and beautifully written. Give it to every mom, because we all need to feel less alone.

Bravo! Bravo! Bravo!

And a standing ovation! I'm awe struck by this story, the lessons and sentiments and by the writing. The author depicts her truths perfectly, and pulls back the curtain on the mostly ugly truths of sociey's deep, dark feelings about able bodies vs differently abled bodies. And there is joy, heartbreak and so, so much love.

As a non-mom, I gleaned insights into the joys and sorrows and overwhelmingness of parenting in general. But mostly, this book and this family's story reinforced the idea that we all need to challenge the concept of normal, in every way, in order to make life better for everyone.

The writing is clear, clean and gorgeous. The story is beautiful. Thank you!

Amazing and humbling

What a gift Ms. Lanier has given, the difficult task of analyzing our own reactions and thinking about what a person truly is. Thank you Thank you, Thank you.