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Raising a Rare Girl
"A remarkable book . . . I found myself thinking that all expectant and new parents should read it." --Michelle Slater
A New York Times Book Review Editors' Choice
In Raising a Rare Girl, Lanier explores how to defy the tyranny of normal and embrace parenthood as a spiritual practice that breaks us open in the best of ways.
Like many women of her generation, when Heather Lanier was expecting her first child she did everything by the book in the hope that she could create a SuperBaby, a supremely 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. 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. 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.
A New York Times Book Review Editors' Choice
In Raising a Rare Girl, Lanier explores how to defy the tyranny of normal and embrace parenthood as a spiritual practice that breaks us open in the best of ways.
Like many women of her generation, when Heather Lanier was expecting her first child she did everything by the book in the hope that she could create a SuperBaby, a supremely 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. 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. 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.
320 pages, Paperback
First published July 7, 2020
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September 7, 2022
Mothering Fiona was turning me into a different kind of woman. pg. 80
I'm not really someone who cries while reading books. While other people describe books as 'tearjerkers,' I walk away cold. I can read 'tearjerkers' with no tears. I have a low tolerance for emotional manipulation in fiction.
But this book isn't fiction, it's non-fiction, and I was definitely crying while reading it.
This book is well-written, emotional, touching, and it teaches you a lot.
I wouldn't advise reading it while pregnant, or while someone you love is pregnant.
Lanier gets pregnant by choice, with her husband, Justin. Like many pregnant, she is super-careful about everything she does.
When I was pregnant, I tried to make a SuperBaby. I didn't realize I was doing this. I thought I'd long ago shed the theory that a body could be made perfect. But looking back, my goal was clear. I swallowed capsules of mercury-free DHA to help grow my SuperBaby's brain. I filled my grocery cart with organic fruits and veggies, letting our monthly food bill consume a quarter of our income. Of course, I followed the medical advice standard for women of my generation... but I went above and beyond. I gave up wheat for reasons I forget. I kept my flip phone at least an arm's length away from my belly to avoid damaging my SuperBaby with electromagnetic waves... I spoke to my SuperBaby.... I avoided finding out my SuperBaby's sex so I would project gender roles onto her/him/them. I slept on my left side... pg. 3
When Fiona is born, she has Wolf-Hirschhorn syndrome. Lanier doesn't find this out until later, though. First she has to deal with everyone's disappointment and scorn. Accused of taking drugs while pregnant when in the hospital, she takes the baby home and has to deal with medical professionals accusing her of starving Fiona.
Even when the syndrome is diagnosed, she faces judgment and pity at every turn. I wanted to reach through the book and shake the medical professionals in this, who range from well-meaning but hurtful to doctors who outright say she should be able to euthanize Fiona or put her in a home and leave her there.
Interacting with the public is equally difficult, people jerking in shock when she tells them how old the baby is. Fiona is very tiny and looks malnourished. People giving her pity and looking at Fiona like a specimen.
Lanier also has to wrestle with her own preconceived notions, what she calls 'excising her ableism.' Ableism is just built into society, she explains. It's hard for her to wrestle with parenting Fiona, whom she loves deeply, while struggling with the fact that her child might never speak, might never walk, might die from seizures before reaching puberty.
Lanier's past also factors into her motherhood. Her biological father was a strong Baptist Christian who believed in going to church regularly and had a sexual interest in his two daughters. This gross and terrifying time in her life thankfully ends when her seemingly meek mother finds the courage and strength to divorce her husband.
Beyond lucky, Lanier gets a second Daddy when her mom remarries, and this time to a mensch. Lanier's stepfather is a great Daddy to her. They love each other very much and thankfully she gets to spend years with him, knowing what a real father is before he dies a painful and slow death to cancer. Not everyone gets a second chance after their father turns out to be a piece of shit, she's incredibly lucky her mother remarried to a mensch.
Lanier makes her own decisions as an adult when she decides to marry a mensch, her amazing husband, Justin. She really, really, really lucked out (or perhaps it was super-smart decision-making) in marrying this 10/10 mensch. I don't know how she would have possible accomplished everything she accomplishes in the book without her loving, supportive, smart, calm, relaxed, wise, and non-judgmental husband. He's amazing.
"Aren't you scared?" I asked him on the way to the first geneticist's appointment. ... Fiona was now the object of our budding work of acceptance. We had to love her as she was, not as how we'd wanted her to be.
"No," he said, his hands on the wheel, his eyes on the interstate. "I'm curious. I want to learn more about her. I want to understand who she is. So I can love her better."
I stared out the window, watching billboards pass, choking on a lump of tears.
"Anything we learn today," he said, "will just help us love her better." pg. 64
Lanier herself is amazing, and that's what makes this book such a joy to read. Since she is a professor, and a writer, and a poet - the book is a beautiful piece of art. Her writing is exquisite. She writes gorgeously. She's so smart. Fiona was so lucky to be born to two kind, smart, loving parents.
The book covers SUCH a range of topics. It's great for disability studies. Lanier covers how society sees disabled people, and tackles thoroughly how she herself has to get through her preconceived assumptions about disability and disabled people. It's SHOCKING the things people (in society and in the medical profession) say to her and Justin about Fiona. Just SHOCKING and heartbreaking and devastating. She turns into an advocate and fights hard for her daughter's personhood, not putting limits on Fiona and believing her capable of many more things than she is told by the medical establishment.
How did I ever learn that people like my daughter were less-than? Had the roots of my thinking been planted by the DEFECT language, by the BAD SEED and AT ZERO language? Had they begun in the hallways of that elementary school I attended.. The roots of my thinking were older than me.. "Who sinned to make this man blind? The man or his parents?" Disability as punishment. Disability as sin. Disability as a problem,.... pg. 129
Of course, she's white and has enough money. But to her credit she acknowledges this and talks also about racism and how many people who parent disabled children aren't as fortunate as she is. She's very astute.
It's also a touching, heart-breaking memoir. If you like memoirs, especially powerful and emotional ones, this one will rip your heart out. Not because it's exactly what I would call 'depressing,' Lanier makes it clear that Fiona but because the set-up and the conclusion are so brutal and emotional. Her hopes and dreams for her 'SuperBaby' are completely gutted. She has to start viewing humans and society and life in a TOTALLY different way, which is a difficult and extremely painful process. She has to constantly deal with abled people seeing Fiona as less-than and treating her as such. It's such a brutal, constant, everyday battle that your heart aches for Lanier as she puts herself out there day after day. She gets treated like shit, her child gets treated like shit, it's a very tiring and emotional struggle everyday to fight for her daughter's rights.
It also is a good book on the topic of misogyny and feminism. Lanier discusses a lot of harsh truths about how society treats women, pregnant women, mothers, and how devastating mom-culture can be and how many strains and worries it puts on moms and moms-to-be.
It seemed that, once pregnant, we were supposed to become conduits of total joy and safety. ... The voices of the culture implied that we should become carriers of life that will not experience what life inevitably feels - pain. ... We are urged to stop the growing body inside us from having what all bodies inherently have: vulnerability, that crack of a doorway through which our suffering creeps. pg. 31
It's also, in a smaller way, a book about religion. If you like spiritual books or books with a good religious message, this fits the bill. Justin is a priest and also has a strong Zen monk background, the book discusses religion and spirituality a lot. God is discussed in a very loving, beautiful way, there's none of the judgment or hatred one normally associates with organized religion - so if you are interested in gentle, kind religion and a belief in a gentle, loving God than this book is for you.
I didn't just stop believing in the ability to make a SuperBaby - I questioned the morality of it. Our values were too twisted to know what would make for better versions of ourselves. pg. 197
TL;DR Just a beautiful, heart-shattering book that I highly recommend. There are so many things to recommend this: disability studies, feminism, positive and gentle Christianity, powerful and emotional memoir, beautiful writing.
The only caveat I would offer is that if you are pregnant or about to become a grandparent or etc. I would hold off on reading this, it might stress you out.
A rare case of a book making me cry, this is such an anomaly I think I can count it on one hand. So glad I picked it up. HIGHLY RECOMMENDED READING.
RELATED READING:
Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body by Martin Pistorius
Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America by Barbara Ehrenreich
NAMES IN THIS BOOK
I'm not really someone who cries while reading books. While other people describe books as 'tearjerkers,' I walk away cold. I can read 'tearjerkers' with no tears. I have a low tolerance for emotional manipulation in fiction.
But this book isn't fiction, it's non-fiction, and I was definitely crying while reading it.
This book is well-written, emotional, touching, and it teaches you a lot.
I wouldn't advise reading it while pregnant, or while someone you love is pregnant.
Lanier gets pregnant by choice, with her husband, Justin. Like many pregnant, she is super-careful about everything she does.
When I was pregnant, I tried to make a SuperBaby. I didn't realize I was doing this. I thought I'd long ago shed the theory that a body could be made perfect. But looking back, my goal was clear. I swallowed capsules of mercury-free DHA to help grow my SuperBaby's brain. I filled my grocery cart with organic fruits and veggies, letting our monthly food bill consume a quarter of our income. Of course, I followed the medical advice standard for women of my generation... but I went above and beyond. I gave up wheat for reasons I forget. I kept my flip phone at least an arm's length away from my belly to avoid damaging my SuperBaby with electromagnetic waves... I spoke to my SuperBaby.... I avoided finding out my SuperBaby's sex so I would project gender roles onto her/him/them. I slept on my left side... pg. 3
When Fiona is born, she has Wolf-Hirschhorn syndrome. Lanier doesn't find this out until later, though. First she has to deal with everyone's disappointment and scorn. Accused of taking drugs while pregnant when in the hospital, she takes the baby home and has to deal with medical professionals accusing her of starving Fiona.
Even when the syndrome is diagnosed, she faces judgment and pity at every turn. I wanted to reach through the book and shake the medical professionals in this, who range from well-meaning but hurtful to doctors who outright say she should be able to euthanize Fiona or put her in a home and leave her there.
Interacting with the public is equally difficult, people jerking in shock when she tells them how old the baby is. Fiona is very tiny and looks malnourished. People giving her pity and looking at Fiona like a specimen.
Lanier also has to wrestle with her own preconceived notions, what she calls 'excising her ableism.' Ableism is just built into society, she explains. It's hard for her to wrestle with parenting Fiona, whom she loves deeply, while struggling with the fact that her child might never speak, might never walk, might die from seizures before reaching puberty.
Lanier's past also factors into her motherhood. Her biological father was a strong Baptist Christian who believed in going to church regularly and had a sexual interest in his two daughters. This gross and terrifying time in her life thankfully ends when her seemingly meek mother finds the courage and strength to divorce her husband.
Beyond lucky, Lanier gets a second Daddy when her mom remarries, and this time to a mensch. Lanier's stepfather is a great Daddy to her. They love each other very much and thankfully she gets to spend years with him, knowing what a real father is before he dies a painful and slow death to cancer. Not everyone gets a second chance after their father turns out to be a piece of shit, she's incredibly lucky her mother remarried to a mensch.
Lanier makes her own decisions as an adult when she decides to marry a mensch, her amazing husband, Justin. She really, really, really lucked out (or perhaps it was super-smart decision-making) in marrying this 10/10 mensch. I don't know how she would have possible accomplished everything she accomplishes in the book without her loving, supportive, smart, calm, relaxed, wise, and non-judgmental husband. He's amazing.
"Aren't you scared?" I asked him on the way to the first geneticist's appointment. ... Fiona was now the object of our budding work of acceptance. We had to love her as she was, not as how we'd wanted her to be.
"No," he said, his hands on the wheel, his eyes on the interstate. "I'm curious. I want to learn more about her. I want to understand who she is. So I can love her better."
I stared out the window, watching billboards pass, choking on a lump of tears.
"Anything we learn today," he said, "will just help us love her better." pg. 64
Lanier herself is amazing, and that's what makes this book such a joy to read. Since she is a professor, and a writer, and a poet - the book is a beautiful piece of art. Her writing is exquisite. She writes gorgeously. She's so smart. Fiona was so lucky to be born to two kind, smart, loving parents.
The book covers SUCH a range of topics. It's great for disability studies. Lanier covers how society sees disabled people, and tackles thoroughly how she herself has to get through her preconceived assumptions about disability and disabled people. It's SHOCKING the things people (in society and in the medical profession) say to her and Justin about Fiona. Just SHOCKING and heartbreaking and devastating. She turns into an advocate and fights hard for her daughter's personhood, not putting limits on Fiona and believing her capable of many more things than she is told by the medical establishment.
How did I ever learn that people like my daughter were less-than? Had the roots of my thinking been planted by the DEFECT language, by the BAD SEED and AT ZERO language? Had they begun in the hallways of that elementary school I attended.. The roots of my thinking were older than me.. "Who sinned to make this man blind? The man or his parents?" Disability as punishment. Disability as sin. Disability as a problem,.... pg. 129
Of course, she's white and has enough money. But to her credit she acknowledges this and talks also about racism and how many people who parent disabled children aren't as fortunate as she is. She's very astute.
It's also a touching, heart-breaking memoir. If you like memoirs, especially powerful and emotional ones, this one will rip your heart out. Not because it's exactly what I would call 'depressing,' Lanier makes it clear that Fiona but because the set-up and the conclusion are so brutal and emotional. Her hopes and dreams for her 'SuperBaby' are completely gutted. She has to start viewing humans and society and life in a TOTALLY different way, which is a difficult and extremely painful process. She has to constantly deal with abled people seeing Fiona as less-than and treating her as such. It's such a brutal, constant, everyday battle that your heart aches for Lanier as she puts herself out there day after day. She gets treated like shit, her child gets treated like shit, it's a very tiring and emotional struggle everyday to fight for her daughter's rights.
It also is a good book on the topic of misogyny and feminism. Lanier discusses a lot of harsh truths about how society treats women, pregnant women, mothers, and how devastating mom-culture can be and how many strains and worries it puts on moms and moms-to-be.
It seemed that, once pregnant, we were supposed to become conduits of total joy and safety. ... The voices of the culture implied that we should become carriers of life that will not experience what life inevitably feels - pain. ... We are urged to stop the growing body inside us from having what all bodies inherently have: vulnerability, that crack of a doorway through which our suffering creeps. pg. 31
It's also, in a smaller way, a book about religion. If you like spiritual books or books with a good religious message, this fits the bill. Justin is a priest and also has a strong Zen monk background, the book discusses religion and spirituality a lot. God is discussed in a very loving, beautiful way, there's none of the judgment or hatred one normally associates with organized religion - so if you are interested in gentle, kind religion and a belief in a gentle, loving God than this book is for you.
I didn't just stop believing in the ability to make a SuperBaby - I questioned the morality of it. Our values were too twisted to know what would make for better versions of ourselves. pg. 197
TL;DR Just a beautiful, heart-shattering book that I highly recommend. There are so many things to recommend this: disability studies, feminism, positive and gentle Christianity, powerful and emotional memoir, beautiful writing.
The only caveat I would offer is that if you are pregnant or about to become a grandparent or etc. I would hold off on reading this, it might stress you out.
A rare case of a book making me cry, this is such an anomaly I think I can count it on one hand. So glad I picked it up. HIGHLY RECOMMENDED READING.
RELATED READING:
Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body by Martin Pistorius
Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America by Barbara Ehrenreich
NAMES IN THIS BOOK
July 12, 2020
This book has helped me increase my empathy and helped me see that I have more internalised ableism than I realized. While the book did get a little self-righteous and preachy at times it was definitely an enjoyable read. It was fun hearing the little stories about the day to day struggles and triumphs.
One thing that was a little frustrating was how the author seemed to idolize her husband's laissez faire attitude towards her daughter's diagnosis and challenges. She was the one being questioned and blamed when her daughter didn't meet the experts' expectations. She was responsible for doctor appointments and therapies and she got no breaks. It's completely normal to feel overwhelmed and anxious and sad in that situation. While her husband sounds like a good guy for loving his daughter how she was, he was still like "why do I have to do the therapies with her, I just want to play with her". That leaves the mom looking like the bad guy buzzkill when she's just trying to do what the experts said her daughter NEEDED. It's not zen and accepting, it's ignoring the hard stuff in the name of acceptance. Their daughter ended up able to communicate and walk and eat and that's because of the work her mom put in. I'm not saying the dad didn't help, but it was that type A personality that got her the resources that she needed to grow. The author talks so much about embracing and celebrating her daughter's strengths but then she forgets to do the same for herself.
Heather Lanier, you are not less than because you can't spend a whole day in meditation. You are not less than when you worry about the future instead of living in the moment. You are not less than because you don't completely trust the universe or God or whatever. You are perfect just the way you are.
One thing that was a little frustrating was how the author seemed to idolize her husband's laissez faire attitude towards her daughter's diagnosis and challenges. She was the one being questioned and blamed when her daughter didn't meet the experts' expectations. She was responsible for doctor appointments and therapies and she got no breaks. It's completely normal to feel overwhelmed and anxious and sad in that situation. While her husband sounds like a good guy for loving his daughter how she was, he was still like "why do I have to do the therapies with her, I just want to play with her". That leaves the mom looking like the bad guy buzzkill when she's just trying to do what the experts said her daughter NEEDED. It's not zen and accepting, it's ignoring the hard stuff in the name of acceptance. Their daughter ended up able to communicate and walk and eat and that's because of the work her mom put in. I'm not saying the dad didn't help, but it was that type A personality that got her the resources that she needed to grow. The author talks so much about embracing and celebrating her daughter's strengths but then she forgets to do the same for herself.
Heather Lanier, you are not less than because you can't spend a whole day in meditation. You are not less than when you worry about the future instead of living in the moment. You are not less than because you don't completely trust the universe or God or whatever. You are perfect just the way you are.
September 26, 2020
This Book. You will love this book. It is the perfect book club book, audio book, or binge until 1am book. It is a great balance of memoir, education, and pressing into preconceptions you didn’t even know you had. Heather tells her story of finding out her daughter has a rare genetic syndrome (one that is actually similar to my daughter’s) and the pain and joy and complexity of raising her. So many of her fears come straight from my journals, but after 7 years of getting to watch her daughter live life she has incredible wisdom and hope to share. It was tragic to read the history behind the words “normal” and “mentally retarded” and how not that long ago so many kids like mine weren’t even allowed an education because “it was a waste”. Even in this decade, children are being denied life saving medical care because their lives do not prove valuable enough to the hospital. This book will absolutely challenge your views on what makes a life ”good” and “normal”.
August 7, 2020
3.5 I have read about Fiona before and was somewhat aware of her story. Although the book was beautifully written, it left me somehow wanting more. It centered on the author’s interactions with her daughter. I would have liked to have read more about Fiona’s interactions with her dad and with her sister. The book also veered off onto other subjects (religion, philosophy, medicine, history, anecdotes, etc)on a regular basis. Although meaningful, this broke up the flow of the story for me. I wanted to cheer for the inclusion that Vermont schools offer as I taught there for many years.
May 13, 2022
I want this book to be a gift to the families, but especially the mothers, at the diagnosis of a family member with anything that starts them on a path of specialists and special education. I want this book to be required reading for all medical professionals and early interventionists. I want my thoughts and my abilities to articulate them, to be as deep, fluid and conclusive as Heather Lanier. I want to be able to take one of her classes. To Heather- thank you for sharing this wonderful story. My son with cerebral palsy is 30 and I was an early interventionist and your way of thinking, advocating, examining, researching, supporting, surviving, and expressing will hopefully continue to help us all evolve.
August 6, 2020
I heartily endorse this book for SLPs, OTs, PTs, special educators, para professionals, caregivers, etc. As practitioners, we need to dig deep on ableism and how to advocate for the humanity of our clients. We need to approach them with a strengths-based framework and stop comparing them to chronological collections of milestones. If you are an SLP who loves AAC, this will make your heart sing.
March 17, 2021
I am raising a rare boy, whose chromosome deletion doesn't have a name. This mom's journey mirrored ours so closely, and it was wonderful to be able to feel less alone by absorbing her words. The spiritual talk throughout the book isn't something I relate to, but the rest of their experiences were practically from our own lives. Thank you for taking the time to share your family's experiences.
September 16, 2020
I absolutely loved this book! It made me cry and laugh and most importantly feel seen. Never have I ever felt such a kinship with my special need parenting journey. With every emotion and experience she shared I was literally talking back saying “OMG yes! Exactly!” I’m so thankful for this book!
October 30, 2020
I love this book. And I am having a very hard time writing a review that does it justice.
As a disabled human, it felt empowering. At the same time, it made me cry at all the ways our society and culture get wrong about disability and ‘otherness’ – the stigma, the ableism, the shame, the myth that humans are invincible, and the comparable myth that if someone gets sick or disabled, they are to blame, and that those who are different are less-than.
I first encountered this author with her article “SuperBabies Don’t Cry” in _Vela Magazine_, then followed her blog. I was thrilled when I saw that she had gotten a book contract to really tell this story – one that is typically hidden away, taboo, not discussed – that of having a disabled child.
I am reminded of the book _Mrs. Beneker_ by Violet Weingarten, first published in 1970, in which the author discusses the shame of having a disabled child, and how it would ruin their social standing.
This author feels completely different from Ms. Weingarten – Heather Lanier wants to tell the world about her daughter Fiona (“my girl”, as she calls her), and how being different isn’t a bad thing. She tackles the way our society treats disability, and how wrong we are as we do so.
She shares her family’s story with amazing, captivating language. Every word was clearly chosen with care, and so many lines are simply beautiful. For instance, she writes this about Fiona having a seizure: “Her limbs jerked in a foreboding rhythm, like she’d become the metronome of every person’s mortality.” And this about her newborn, second daughter, Petra: “Her eyelids were a set of tiny watercolors, feathered by capillaries in pastel purples and pinks.”
I love the way the author weaves in details – she doesn’t tell you everything at once, but instead shares ages, years, and places where they fit best in the story. You feel like you’re right there with her as she tries to get Fiona to eat, as she tries to understand what options are available for her child, as she comes to terms with not having the superbaby she imagined, as she researches the chromosome her daughter is missing (named Wolf-Hirschhorn syndrome), as she, for the first time, meets another child with the same syndrome.
The book is honest, raw, philosophical, historical, and personal. It looks at the construct of “disability” from all angles – including word origins and history.
The author talks about the contradictions of being a mother to “rare girl” – wanting something different, and what you expected, versus loving what you have.
She points out the importance of language in how we speak about people different from us, and traces the way “disabled” is an update to the word “retard”, which was an update to “feeble-minded.” And how the word “norm” was co-opted from carpentry and applied to human beings, when it wasn’t needed and is actually harmful. She wrote: “I was stumbling across a cultural pill, one that stuck in my throat and wouldn’t go down. It said: Bodily difference is charming so long as it doesn’t interfere with Normal. Or if it does interfere with Normal— if it is a Disability—it’s charming so long as it becomes history, a tale to offer as inspiration rather than a real life to live. Disability is okay if it’s overcome.”
The author goes as far back as the Bible, and writes of “the story of Jesus’s disciples, who found a blind man on the side of a road and asked their master, ‘Who sinned to make this man blind? The man or his parents?’”, concluding that “Disability [is a] punishment”.
She discusses the institutionalization of the “feeble-minded” in the early 1900s, and how they were “accused of higher rates of crime, sexual promiscuity, prostitution, and alcoholism”, and how that mindset and treatment continued unabated until lawsuits in the 1970s.
The author then shares information on how the Individuals with Disabilities Education Act (IDEA) came to be, and what it does today – keeps the disabled from being legally denied an education. How education teaches people how to communicate, which she claims (and I agree) –“is a fundamental human right.” As she wrote: “Language created space. … It made space for emotions, for needs and wants and refusals. I spoke English. Fiona spoke grunts and faces and fisted points. I could speak her language if I needed. She couldn’t speak mine.”
She also talks about how she was blamed for her daughter’s small birth weight – asked if she had eaten enough, or taken drugs – and also: “Here’s something a parent of a typical child probably never has to suffer through: a conversation with a doctor in which the doctor wonders aloud whether a child like theirs can be ethically killed.”
I highlighted a LOT of text in the e-book I received – 2,706 words, to be exact – so much of it resonated with me, as both a perfectionist and a disabled woman. And I added as many of the quotes as I could to GoodReads.
I think this book would be comforting and possibly helpful to a parent with a wee one who has any sort of disability, but would also be something parents of older disabled children could appreciate. And I highly recommend that anyone with disability in their lives in some way – either themselves or a friend / family member – read this.
As the author wrote: “Disability was not something to find blame for, because disability was not a problem. Through the neutral lens of science, my kid’s chromosomal anomaly was a product of diversity, and who could be upset about that?”
Note:
I received a digital ARC of this book from the publisher via NetGalley. This has no bearing on my review. I never guarantee a positive rating, and all thoughts and opinions are my own.
As a disabled human, it felt empowering. At the same time, it made me cry at all the ways our society and culture get wrong about disability and ‘otherness’ – the stigma, the ableism, the shame, the myth that humans are invincible, and the comparable myth that if someone gets sick or disabled, they are to blame, and that those who are different are less-than.
I first encountered this author with her article “SuperBabies Don’t Cry” in _Vela Magazine_, then followed her blog. I was thrilled when I saw that she had gotten a book contract to really tell this story – one that is typically hidden away, taboo, not discussed – that of having a disabled child.
I am reminded of the book _Mrs. Beneker_ by Violet Weingarten, first published in 1970, in which the author discusses the shame of having a disabled child, and how it would ruin their social standing.
This author feels completely different from Ms. Weingarten – Heather Lanier wants to tell the world about her daughter Fiona (“my girl”, as she calls her), and how being different isn’t a bad thing. She tackles the way our society treats disability, and how wrong we are as we do so.
She shares her family’s story with amazing, captivating language. Every word was clearly chosen with care, and so many lines are simply beautiful. For instance, she writes this about Fiona having a seizure: “Her limbs jerked in a foreboding rhythm, like she’d become the metronome of every person’s mortality.” And this about her newborn, second daughter, Petra: “Her eyelids were a set of tiny watercolors, feathered by capillaries in pastel purples and pinks.”
I love the way the author weaves in details – she doesn’t tell you everything at once, but instead shares ages, years, and places where they fit best in the story. You feel like you’re right there with her as she tries to get Fiona to eat, as she tries to understand what options are available for her child, as she comes to terms with not having the superbaby she imagined, as she researches the chromosome her daughter is missing (named Wolf-Hirschhorn syndrome), as she, for the first time, meets another child with the same syndrome.
The book is honest, raw, philosophical, historical, and personal. It looks at the construct of “disability” from all angles – including word origins and history.
The author talks about the contradictions of being a mother to “rare girl” – wanting something different, and what you expected, versus loving what you have.
She points out the importance of language in how we speak about people different from us, and traces the way “disabled” is an update to the word “retard”, which was an update to “feeble-minded.” And how the word “norm” was co-opted from carpentry and applied to human beings, when it wasn’t needed and is actually harmful. She wrote: “I was stumbling across a cultural pill, one that stuck in my throat and wouldn’t go down. It said: Bodily difference is charming so long as it doesn’t interfere with Normal. Or if it does interfere with Normal— if it is a Disability—it’s charming so long as it becomes history, a tale to offer as inspiration rather than a real life to live. Disability is okay if it’s overcome.”
The author goes as far back as the Bible, and writes of “the story of Jesus’s disciples, who found a blind man on the side of a road and asked their master, ‘Who sinned to make this man blind? The man or his parents?’”, concluding that “Disability [is a] punishment”.
She discusses the institutionalization of the “feeble-minded” in the early 1900s, and how they were “accused of higher rates of crime, sexual promiscuity, prostitution, and alcoholism”, and how that mindset and treatment continued unabated until lawsuits in the 1970s.
The author then shares information on how the Individuals with Disabilities Education Act (IDEA) came to be, and what it does today – keeps the disabled from being legally denied an education. How education teaches people how to communicate, which she claims (and I agree) –“is a fundamental human right.” As she wrote: “Language created space. … It made space for emotions, for needs and wants and refusals. I spoke English. Fiona spoke grunts and faces and fisted points. I could speak her language if I needed. She couldn’t speak mine.”
She also talks about how she was blamed for her daughter’s small birth weight – asked if she had eaten enough, or taken drugs – and also: “Here’s something a parent of a typical child probably never has to suffer through: a conversation with a doctor in which the doctor wonders aloud whether a child like theirs can be ethically killed.”
I highlighted a LOT of text in the e-book I received – 2,706 words, to be exact – so much of it resonated with me, as both a perfectionist and a disabled woman. And I added as many of the quotes as I could to GoodReads.
I think this book would be comforting and possibly helpful to a parent with a wee one who has any sort of disability, but would also be something parents of older disabled children could appreciate. And I highly recommend that anyone with disability in their lives in some way – either themselves or a friend / family member – read this.
As the author wrote: “Disability was not something to find blame for, because disability was not a problem. Through the neutral lens of science, my kid’s chromosomal anomaly was a product of diversity, and who could be upset about that?”
Note:
I received a digital ARC of this book from the publisher via NetGalley. This has no bearing on my review. I never guarantee a positive rating, and all thoughts and opinions are my own.
June 24, 2025
There aren’t enough stars! Heather Lanier welcomes the reader into her world, her brain, and her heart as she shares her experience as a mother to a girl with a rare genetic condition. This memoir is beautiful and poetic, invoking deep emotions such as grief, frustration, and triumph. Through the pages, she realizes her own biases and perspective, which helped me realize and challenge my own. This story was raw and real, and often left me choked up and teary eyed. I cannot recommend this book highly enough to any parent, medical worker, or human who loves other humans.
10/5 stars, if I could
10/5 stars, if I could
March 21, 2023
From anger to elation, this book made me feel all of the emotions. It gave me a better understanding of what it’s like to parent a child with a rare syndrome - an insight I didn’t realize I needed until I started reading.
February 7, 2021
As the parent of a child with a genetic anomaly (4q-, so same chromosome but different arm), I identified with so much of this story. The baby sit ups, the therapy appointments as a fixture of daily life, the failure to thrive diagnosis when you've expended SO much effort on feeding...etc. And thinking about how it fits into the bigger questions of faith and life purpose. I think a lot of people would enjoy this book, but if you're the parent of a child with a disability, i think you'll especially find yourself nodding along to so much of this.
December 16, 2025
I felt so many emotions while reading this book. I took a deep dive into my own internalized ableism, my own motherhood, and even humanity. Heather had some amazing quotes in this book about what it means to mother, be a human, be in a body. She writes so beautifully about the transformative power of raising a rare girl. I recommend this highly!
Some of my favorite quotes:
"We're not actually here to avoid suffering. Vulnerability is built into our very design... I actually think there's something holy and important about the ways we're fragile."
"It's okay that these bodies we live in aren't always the promises we'd wished for. Life is full beneath this cracked porcelain. Inside this tender flesh."
Some of my favorite quotes:
"We're not actually here to avoid suffering. Vulnerability is built into our very design... I actually think there's something holy and important about the ways we're fragile."
"It's okay that these bodies we live in aren't always the promises we'd wished for. Life is full beneath this cracked porcelain. Inside this tender flesh."
August 11, 2020
I loved this. I found it deeply, deeply moving - I basically cried my way through it - and also thought-provoking and challenging. Lanier writes with clarity and precision about motherhood. The parts of her story that were familiar to me felt so familiar, and the parts that were new felt vivid and real. It's both an intimate, deeply joyful story and a passionate call for the reader to examine their own understanding of disability. Just wonderful.
July 16, 2021
I couldn’t put this book down. Everyone should read this book. It challenged me to think of al of the ways that I prioritize ableism and it gave me such grace and love for all of my friends and parents of children who were given a different body. I LOVED how she took us through her journey and was so authentic and loving during the entire thing. I also loved how she asked all of her spiritual questions but came up with no answers. Such a great book!
December 21, 2022
I listened to this! I found this author through her TED Talk and didn't know how much I needed this book. This book changed me, and not to sound dramatic, but I think it healed me in a lot of ways.
It exposed some of my deepest vulnerabilities and paved a new way of thinking I so desperately needed. It called out some ableist thoughts, reactions, and language I didn't realize I had internalized and reminded me of my core beliefs regarding our internal worth as human beings. This book reminded me again and again: “When you push away disability you also push away humanity.” Heather writes beautifully and I would gladly read anything she writes. I think I might just give this book to everyone I know I loved it that much.
It exposed some of my deepest vulnerabilities and paved a new way of thinking I so desperately needed. It called out some ableist thoughts, reactions, and language I didn't realize I had internalized and reminded me of my core beliefs regarding our internal worth as human beings. This book reminded me again and again: “When you push away disability you also push away humanity.” Heather writes beautifully and I would gladly read anything she writes. I think I might just give this book to everyone I know I loved it that much.
October 11, 2021
Honestly gorgeous. So glad I read it. This book definitely made me rethink a lot of my own attitudes and desires around having a “healthy baby” and what that means. It made me want to be the kind of mother that the author is! And it also made me want to move to Vermont for their education system!
July 3, 2023
I laughed, I cried, I did it all over. Dear author, thank you for sharing your daughter with us.
October 13, 2023
4.5 stars. This book held my interest. It had a lot of interesting facts about disabilities and eugenics that I hadn’t known before. I enjoyed reading about every bit of progress Fiona made.
October 5, 2020
A hard won, heartfelt and touching memoir about what it means to be a person in this world.
June 26, 2020
A beautiful book! Heather and her husband, an Episcopal priest (in training when their daughter is born) thought they would have the perfect child. Then Fiona was born and something wasn't quite right. She's got Wolf-Hirschorn syndrome. Lanier's journey with Fiona is also a journey for herself. Yes she struggles, as anyone would, with reshaping her view of how she thought her daughter would be but she never becomes maudlin. Fiona is always at the forefront and she is, you feel, perfect in her way. The best part is that Fiona has beaten the odds given her when she was diagnosed. Lanier's a wonderful writer who has opened a door into a subject few have addressed so eloquently. A little googling (I was curious to learn more about the syndrome) turned up her blog, which is also well worth a read. Thanks to Edelweiss for the ARC.
August 24, 2021
Best book I've read all year. Ms. Lanier's story challenges our cultural norm that "disability is okay if it's overcome". She asks us to let go of the smallness of "Normal" and embrace the awesomeness of each individual... beautiful just the way they were made. That's a life of love.
August 10, 2024
Wonderful. A mother’s memoir beautifully written about the meaning of life and love. Worth your time!
January 4, 2021
Joyful, wise, tender and so beautifully written. I want everyone I know to read this gorgeous book.
October 11, 2021
I am a pediatrician, and I bought this book after learning that one of my patients, a 2-week-old boy, may have this syndrome. Although, as his doctor, I am grateful to have read this book (will likely be relevant regardless of what his actual diagnosis ends up being), I also found it very disparaging of nearly every doctor and therapist she ever encountered. On the one hand, I saw this as an important lesson for me as I choose my words around this family and others I will inevitably encounter, but on the other, I felt like no doctor in this book—all individuals who are trained to identify problems and fix them—could utter any words other than “your daughter is perfect.” It will certainly remind me that when dealing with any family who has a child with a disability, many families may appreciate a balanced approach to my discussion—“these are the things that are going really well for your child, and these are the things we should work on improving.”
Many reviewers are also critical of the author’s inclusion of religious and spiritual perspectives. I actually enjoyed this part of the book a lot and felt like it added a depth that it would otherwise not have had.
Many reviewers are also critical of the author’s inclusion of religious and spiritual perspectives. I actually enjoyed this part of the book a lot and felt like it added a depth that it would otherwise not have had.
November 3, 2020
A must read to gain insight into the vulnerability of being a parent. Heather Lanier allows us inside her emotional and unknown journey of raising her daughter Fiona who has 4p- (Wolf Hirschorn Syndrome). I also loved how she looked at the "language" around being different from others; especially those with disabilities. We are brought into her inner thoughts as a mom so we cry when her daughter has seizures and is labelled as "a problem" or a "zero" and we cheer when her daughter makes break-throughs in communicating and feeding herself.
August 31, 2020
I can’t begin to describe what this book means to me. I have never felt so seen, validated, etc etc in my journey into parenthood. This is much like the book that I would have written had I possessed Lanier’s talent.
Required reading for parents of rare kiddos, hell, for all parents and people who want to witnessing the dismantling of internalized ableism when the stakes are really, really high.
I can’t wait to read it again.
Required reading for parents of rare kiddos, hell, for all parents and people who want to witnessing the dismantling of internalized ableism when the stakes are really, really high.
I can’t wait to read it again.
December 19, 2020
A funny, poignant, well-written account of raising a child you didn't expect. An amazing feat to write this while raising the titular "rare girl" and her younger sister. I would also be interested in a memoir of Lanier's relationship with her husband; he's an Episcopal priest and she's a non-believer--would love to hear more about that dynamic!
August 22, 2024
I NEEDED this book. ❤️🩹
“Concretizing was also what some relatives did after I used the word if. As in, if she walks. If she talks. People rewrote my sentiment with a single word—when. You mean, when she walks. I understood their intentions: they believed in the power of positive thinking. But plenty of kids with Wolf-Hirschhorn syndrome didn’t walk or talk, and it wasn’t because their parents hadn’t believed. Not concretizing was, instead, like floating in outer space. It meant I stayed with the warm tingle of a face before tears. Not concretizing gave me nothing to hold on to. It was like being suspended amid the cosmos, beholding their vastness, getting a glimpse of my smallness among the Everything. It was awesome and terrifying. I found myself in awe of the painful vulnerability of being human. In awe of the fragility of me, my daughter, my husband—everyone. We were always on this brink, on this edge. Always possibly headed for collision or creation. We just pretended otherwise.”
“This belief in the virtue of the “happy” and suffering-free life sterilizes and shrinks us, minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy. The point of this human life, I believe, is love. And the ridiculous and brave and risky act of love turns my heart into taffy, stretches it across the broad spectrum of human feeling.”
“Concretizing was also what some relatives did after I used the word if. As in, if she walks. If she talks. People rewrote my sentiment with a single word—when. You mean, when she walks. I understood their intentions: they believed in the power of positive thinking. But plenty of kids with Wolf-Hirschhorn syndrome didn’t walk or talk, and it wasn’t because their parents hadn’t believed. Not concretizing was, instead, like floating in outer space. It meant I stayed with the warm tingle of a face before tears. Not concretizing gave me nothing to hold on to. It was like being suspended amid the cosmos, beholding their vastness, getting a glimpse of my smallness among the Everything. It was awesome and terrifying. I found myself in awe of the painful vulnerability of being human. In awe of the fragility of me, my daughter, my husband—everyone. We were always on this brink, on this edge. Always possibly headed for collision or creation. We just pretended otherwise.”
“This belief in the virtue of the “happy” and suffering-free life sterilizes and shrinks us, minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy. The point of this human life, I believe, is love. And the ridiculous and brave and risky act of love turns my heart into taffy, stretches it across the broad spectrum of human feeling.”
August 19, 2021
Two caveats to my 3 star rating: I adored Emily Rapp's memoirs about raising a son with Tay Sachs, so I think my expectations of this one were probably unfair to begin with. Reading this while pregnant was probably not my brightest move.
While this book had many plusses, it just never quite took off for me. Parts seemed unnecessarily long, and I just wanted it to be over. It is an incredibly personal story, yet it seemed very impersonal to me.
What I liked:
*I think Heather Lanier did a great job of showcasing how the slightest nuance in language can make a huge difference. She articulated this well with doctors, teachers, therapists, and strangers. The smallest of words and the simplest of actions can be the difference between someone feeling hopeful or normal or as things should be vs feeing like an outsider or a failure. I think reading this perspective would be helpful for any teacher, doctor, therapist to become a better, more understanding professional.
*I liked hearing her perspective on what it was like for her to envy other able-bodied children. There's some guilt associated with those feelings, but she talks about how she comes to terms with understanding that this was how Fiona was "designed."
*Despite Fiona's challenges, her determination to keep up with her classmates during her year of kindergarten made me smile. The administration and the teachers in her school really seemed to empower her. It is that mindset that you want to see everywhere.
I wish there would've been more on the interactions between Fiona and her dad or her sister. Her dad was mentioned several times and frankly just seems like a saintly being with not a care in the world. Kudos to him if that is indeed his state of mind (he is a priest and meditates a lot, so my interpretation might indeed be accurate).
While this book had many plusses, it just never quite took off for me. Parts seemed unnecessarily long, and I just wanted it to be over. It is an incredibly personal story, yet it seemed very impersonal to me.
What I liked:
*I think Heather Lanier did a great job of showcasing how the slightest nuance in language can make a huge difference. She articulated this well with doctors, teachers, therapists, and strangers. The smallest of words and the simplest of actions can be the difference between someone feeling hopeful or normal or as things should be vs feeing like an outsider or a failure. I think reading this perspective would be helpful for any teacher, doctor, therapist to become a better, more understanding professional.
*I liked hearing her perspective on what it was like for her to envy other able-bodied children. There's some guilt associated with those feelings, but she talks about how she comes to terms with understanding that this was how Fiona was "designed."
*Despite Fiona's challenges, her determination to keep up with her classmates during her year of kindergarten made me smile. The administration and the teachers in her school really seemed to empower her. It is that mindset that you want to see everywhere.
I wish there would've been more on the interactions between Fiona and her dad or her sister. Her dad was mentioned several times and frankly just seems like a saintly being with not a care in the world. Kudos to him if that is indeed his state of mind (he is a priest and meditates a lot, so my interpretation might indeed be accurate).
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