Raising a Rare Girl
A Memoir
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Narrated by:
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Rebecca Lowman
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By:
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Heather Lanier
About this listen
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 AudioListeners also enjoyed...
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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)
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In her younger years, Jillian Lauren was a college dropout, a drug addict, and an international concubine in the Prince of Brunei's harem, an experience she immortalized in her best-selling memoir, Some Girls. In her 30s, Jillian's most radical act is learning the steadying power of love when she and her rock star husband adopt an Ethiopian child with special needs.
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Great for adoptive families
- By berry bomb on 07-06-22
By: Jillian Lauren
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A Face for Picasso
- By: Ariel Henley
- Narrated by: Ariel Henley
- Length: 8 hrs and 8 mins
- Unabridged
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At only eight months old, identical twin sisters Ariel and Zan Henley were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it. Growing up, Ariel and her sister endured numerous medical procedures to keep them alive. Doctors expanded the twins’ skulls and broke bones to make room for their growing organs. After each surgery, the sisters felt like strangers to each other, unable to recognize themselves in the mirror.
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Fantastic
- By Anna McCall on 03-25-24
By: Ariel Henley
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Expecting Adam
- A True Story of Birth, Rebirth, and Everyday Magic
- By: Martha Beck
- Narrated by: Joyce Bean
- Length: 12 hrs and 17 mins
- Unabridged
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From the moment Martha and her husband, John, conceived their second child, all hell broke loose. They were a couple obsessed with success. After years of matching IQs and test scores with less driven peers, they had two Harvard degrees apiece and were gunning for more. But the dream had begun to disintegrate. Then, when their unborn son, Adam, was diagnosed with Down syndrome, doctors, advisers, and friends in the Harvard community warned them not to keep the baby.
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True Life Fairy Tale
- By Desarae on 11-27-13
By: Martha Beck
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Before I Called You Mine
- By: Nicole Deese
- Narrated by: Mikhaila Aaseng
- Length: 10 hrs and 3 mins
- Unabridged
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Lauren Bailey may be a romantic at heart, but after a decade of matchmaking schemes gone wrong, there's only one match she's committed to now - the one that will make her a mother. Lauren is a dedicated first-grade teacher in Idaho, and her love for children has led her to the path of international adoption. To satisfy her adoption agency's requirements, she gladly agreed to remain single for the foreseeable future; however, just as her long wait comes to an end, Lauren is blindsided by a complication she never saw coming: Joshua Avery.
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A very special book
- By Kelly on 04-15-20
By: Nicole Deese
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Little Matches
- A Memoir of Finding Light in the Dark
- By: Maryanne O'Hara
- Narrated by: Maryanne O'Hara
- Length: 9 hrs and 56 mins
- Unabridged
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When their only child was diagnosed with cystic fibrosis (CF) at the age of two, Maryanne O'Hara and her husband were told that Caitlin could live a long life or be dead in a matter of months. Thirty-one years later, Caitlin lost her battle with this devastating disease following an excruciating two-year wait on the transplant list and a last-minute race to locate a pair of healthy lungs. The sudden spiral of events left Maryanne in an existential crisis, searching to find an answer to the eternal question: Why we are here?
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I don't know who needs to read it...
- By H. Hill on 04-18-23
By: Maryanne O'Hara
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American Baby
- A Mother, a Child, and the Shadow History of Adoption
- By: Gabrielle Glaser
- Narrated by: Kathe Mazur, Gabrielle Glaser, Margaret Katz
- Length: 10 hrs and 37 mins
- Unabridged
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The adoption business was founded on secrecy and lies. American Baby lays out how a lucrative and exploitative industry removed children from their birth mothers and placed them with hopeful families, fabricating stories about infants' origins and destinations, then closing the door firmly between the parties forever. Adoption agencies and other organizations that purported to help pregnant women struck unethical deals with doctors and researchers for pseudoscientific "assessments," and shamed millions of women into surrendering their children.
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I felt the love of my birth mom...
- By Mary H. on 02-03-21
By: Gabrielle Glaser
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Early
- An Intimate History of Premature Birth and What It Teaches Us About Being Human
- By: Sarah DiGregorio
- Narrated by: Ann Marie Gideon
- Length: 9 hrs and 47 mins
- Unabridged
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The heart of many hospitals is the Neonatal Intensive Care Unit (NICU). It is a place where humanity, ethics, and science collide in dramatic and deeply personal ways as parents, doctors, and nurses grapple with sometimes unanswerable questions: When does life begin? When and how should life end? And what does it mean to be human? Nearly 20 years ago, Dr. John D. Lantos wrote The Lazarus Case, a seminal work on ethical dilemmas in neonatology. He described the NICU as “a strong, strange, powerful place”. The
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Gripping read for this late preterm infant mom
- By R. Ash on 08-08-21
By: Sarah DiGregorio
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The Book of Help
- A Memoir in Remedies
- By: Megan Griswold
- Narrated by: Megan Griswold
- Length: 11 hrs and 14 mins
- Unabridged
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A hilarious and heartbreaking memoir-in-remedies by a self-described "professional soul-searcher" that details a journey of self-discovery through more than 160 tonics, seminars, regimens, and transformative therapies. With a voice that is at once intimate and hilarious, Megan captures the openness and honesty necessary for people to take a new path in life. Listeners will open the audiobook with curiosity about all the different healing therapies that Megan tries, but leave with a new understanding of themselves.
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Mr. Toad's Wild Ride has some serious competition!
- By Elisa R. Goodman on 02-15-19
By: Megan Griswold
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Birth Day
- A Pediatrician Explores the Science, the History, and the Wonder of Childbirth
- By: Mark Sloan MD
- Narrated by: Mark Sloan MD
- Length: 9 hrs and 55 mins
- Abridged
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"I delivered twenty babies in the summer of 1977. I was hardly more than a baby myself, just turned 24 and starting my third year of medical school." So began Mark Sloan's three-decades-long exploration of the wonders and oddities of human childbirth. Pediatrician, husband, and father, the author has attended nearly 3000 births since that long-ago summer, encountering everything from routine deliveries to tense labor-room dramas.
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Great Book - Heavy on the History
- By Robert Ingalls on 03-16-17
By: Mark Sloan MD
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Heartwood
- The Art of Living with the End in Mind
- By: Barbara Becker
- Narrated by: Gabra Zackman
- Length: 4 hrs and 37 mins
- Unabridged
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When her earliest childhood friend is diagnosed with a terminal illness, Becker sets off on a quest to immerse herself in what it means to be mortal. Can we live our lives more fully knowing some day we will die? With a keen eye toward that which makes life worth living, interfaith minister, mom, and perpetual seeker Barbara Becker recounts stories where life and death intersect in unexpected ways.
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The author’s compassion
- By Amazon Customer on 04-16-24
By: Barbara Becker
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Knocking on Heaven's Door
- The Path to a Better Way of Death
- By: Katy Butler
- Narrated by: Katy Butler
- Length: 10 hrs and 28 mins
- Unabridged
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Like so many of us, award-winning writer Katy Butler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of easily finishing a sentence or showering without assistance. Her mother was thrust into full-time caregiving, and Katy became one of the 24 million Americans who help care for aging parents. In an effort to correct a minor and non - life threatening heart arrhythmia, doctors outfitted her father with a pacemaker.
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A better way to narrate a book about death?
- By MAUREEN on 10-21-13
By: Katy Butler
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Until I Say Good-Bye
- My Year of Living with Joy
- By: Susan Spencer-Wendel, Bret Witter
- Narrated by: Karen White
- Length: 9 hrs and 15 mins
- Unabridged
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Susan Spencer-Wendel's Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS). After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig's disease, she embarks on several adventures, traveling to several countries and sharing special experiences with loved ones.
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Until I Say Good-Bye is a paradox for me.
- By Bonny on 03-19-13
By: Susan Spencer-Wendel, and others
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Messenger
- The Legacy of Mattie J. T. Stepanek and Heartsongs
- By: Jeni Stepanek
- Narrated by: Jeni Stepanek
- Length: 11 hrs and 48 mins
- Unabridged
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Oprah Winfrey has called him an inspiration, Maya Angelou saw him as a kindred spirit and fellow poet, and Jimmy Carter described Mattie Stepanek as the "most remarkable person I have ever known". When Jerry Lewis received his lifetime achievement award at the Oscars, footage of Mattie played behind him. Five years after his death from a rare neuromuscular disease, Mattie is still being celebrated for his indomitable spirit and message of hope.
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Loved Jeni telling Mattie’s story
- By Hello Mrs. on 12-29-22
By: Jeni Stepanek
What listeners say about Raising a Rare Girl
Average customer ratingsReviews - Please select the tabs below to change the source of reviews.
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- wish 4 par
- 04-27-21
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
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- Dr. Lynne Genser
- 03-23-21
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.
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- Anonymous User
- 02-16-21
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.
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- Camille A. Kramer
- 02-07-23
Important message to hear
This book is excellent and heartwarming and encouraging. But even more importantly it is enlightening!!!!!
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- Amazon Customer
- 03-13-21
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.
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1 person found this helpful
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- BusyFamily
- 10-11-20
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.
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- Julee
- 01-23-21
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!
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2 people found this helpful
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- Molly Rhea
- 08-17-22
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.
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- Mary
- 09-12-20
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.
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1 person found this helpful
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- Merideth Hite
- 08-23-23
Gorgeous
So uplifting and beautifully written. Give it to every mom, because we all need to feel less alone.
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