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Raising a Rare Girl: A Memoir

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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 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 that 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.


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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 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 that 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.

30 review for Raising a Rare Girl: A Memoir

  1. 4 out of 5

    Jacqueline

    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 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.

  2. 5 out of 5

    Jess Etheridge

    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 li 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”.

  3. 4 out of 5

    Janet Lynch

    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 wante 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.

  4. 5 out of 5

    D. George

    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 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.

  5. 5 out of 5

    Emily

    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. 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.

  6. 5 out of 5

    Erin Ching

    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 especial 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.

  7. 4 out of 5

    Patricia

    A hard won, heartfelt and touching memoir about what it means to be a person in this world.

  8. 5 out of 5

    Kathleen Gray

    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 wa 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.

  9. 4 out of 5

    Jami

    Joyful, wise, tender and so beautifully written. I want everyone I know to read this gorgeous book.

  10. 4 out of 5

    Kristin

    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.

  11. 4 out of 5

    Anita

    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!

  12. 4 out of 5

    Susan R

    Wonderful reflection mostly of a mom about her child, learning and growing together to best help her otherly-abled daughter grow to be the best version of herself. Husband/dad is a great influence and partner, very steadying as helpmate and daddy. Younger sister makes appearance late in the book but also adds to the family dynamic in a positive way. I like seeing the inside story of how this family adjusted their life on the journey they had not planned but found themselves embracing. Go, Fiona, Wonderful reflection mostly of a mom about her child, learning and growing together to best help her otherly-abled daughter grow to be the best version of herself. Husband/dad is a great influence and partner, very steadying as helpmate and daddy. Younger sister makes appearance late in the book but also adds to the family dynamic in a positive way. I like seeing the inside story of how this family adjusted their life on the journey they had not planned but found themselves embracing. Go, Fiona, and be the best person God intended you to be! And Vermont schools, you rock!

  13. 5 out of 5

    Ruth Everett

    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-th 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.

  14. 4 out of 5

    Jill

    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! 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!

  15. 4 out of 5

    Saraswati

    A simple story of a mother raising a child with a rare chromosomal disorder. It was a heartwarming, philosophical book. It made me introspect & re-think my own preconceived notions on many issues. Fiona's joy and happiness shone through the book. A simple story of a mother raising a child with a rare chromosomal disorder. It was a heartwarming, philosophical book. It made me introspect & re-think my own preconceived notions on many issues. Fiona's joy and happiness shone through the book.

  16. 5 out of 5

    Alexa

    Really appreciated the author’s reflection on how she went from wanting to make a “superbaby” to giving birth to a daughter with a rare chromosomal syndrome and learning how to care for her particular needs and love her for who she is. She makes some really great points on how there is a culture of labeling people as “normal” and “different,” and continues to draw readers’ eyes to the beautiful reality of how each person is equally worthy of love and dignity, no matter their genetic makeup or ph Really appreciated the author’s reflection on how she went from wanting to make a “superbaby” to giving birth to a daughter with a rare chromosomal syndrome and learning how to care for her particular needs and love her for who she is. She makes some really great points on how there is a culture of labeling people as “normal” and “different,” and continues to draw readers’ eyes to the beautiful reality of how each person is equally worthy of love and dignity, no matter their genetic makeup or physical/intellectual abilities.

  17. 4 out of 5

    Lindsay

    Makes me rethink what "normal" is, the value of a human life, and how we can learn from uncertainty. Makes me rethink what "normal" is, the value of a human life, and how we can learn from uncertainty.

  18. 4 out of 5

    Jenna Garrett

    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.

  19. 4 out of 5

    Lauren

    I woke up today, made my coffee and had to finish this book. And now, having finished and cried, I am sort of at a loss for words. It's so easy to pile on the chinches when describing this memoir. A few thoughts come to mind. First, writing professors should write memoirs. This book is beautifully written. And second, somehow Lanier avoided this book feeling cliche. This book about a little girl with diagnosed with a rare syndrome is about pivoting, it's about that intersection of struggle and j I woke up today, made my coffee and had to finish this book. And now, having finished and cried, I am sort of at a loss for words. It's so easy to pile on the chinches when describing this memoir. A few thoughts come to mind. First, writing professors should write memoirs. This book is beautifully written. And second, somehow Lanier avoided this book feeling cliche. This book about a little girl with diagnosed with a rare syndrome is about pivoting, it's about that intersection of struggle and joy, it's about bias. Thankfully we are focused on racism and sexism (not saying we're in a great place) but are we/ do we hear enough about learning differences and disability? And I think this book, like this pandemic, reminds us what should be savored.

  20. 4 out of 5

    Jenny Dunning

    Thank you, Heather. Thank you for the gripping story of learning to fend off our culture's perfectionism and love of normal in your fight to love and advocate for your daughter, Fiona, who was born with a rare chromosomal syndrome. Thank you for the delight of your insights into our culture, into the spiritual, into love. Thank you for teaching me better what it is to be human. You carried me along so that by the end I celebrated Fiona's achievements as if she were my own daughter. Thank you for Thank you, Heather. Thank you for the gripping story of learning to fend off our culture's perfectionism and love of normal in your fight to love and advocate for your daughter, Fiona, who was born with a rare chromosomal syndrome. Thank you for the delight of your insights into our culture, into the spiritual, into love. Thank you for teaching me better what it is to be human. You carried me along so that by the end I celebrated Fiona's achievements as if she were my own daughter. Thank you for allowing me to know Fiona. Confession here: Heather is a friend, a former colleague. But my enthusiasm for this book has nothing to do with our friendship. Everyone should read this book! And reread it. It will change the way you understand our world, as all the best books do—and in a way that's really important. I wish I had been able to read it before raising my own children, who may not have had a chromosomal syndrome but didn't fit into the norms either. Here are a few tidbits from the book: "In my daughter's first year, I was learning: the simple act of loving her was countercultural." In the mouth of an imaged caretaker: "What an interesting and beautiful package her soul has found itself inside!" A bit of poetry (Heather is also a poet), when Fiona first walks out of church on her own: "And my joy took the form of twenty geese in my chest, mid-flight." And some wisdom, mixed with poetry: "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. My daughter has given me a thousand portraits of grief and a thousand portraits of joy. I hurt, I long, I exalt, I rejoice. Love my daughter tenderizes me, makes me more human. And yes, my chest sometimes aches from this work. But the ache in my chest is a cousin of joy."

  21. 5 out of 5

    Shari

    "But when you push away disability, you also push away your humanity. When you push away any fissure of vulnerability, you also push away the tender truth about yourself. You were not, were never made to be, SuperHuman. You were made to be human. And this doesn't exactly break the heart, but it does split apart every clapboard and nail and piece of barbed wire you've hammered to it." I've been following Heather Lanier's blog for years, every since I read an essay of hers in The Sun. This is h "But when you push away disability, you also push away your humanity. When you push away any fissure of vulnerability, you also push away the tender truth about yourself. You were not, were never made to be, SuperHuman. You were made to be human. And this doesn't exactly break the heart, but it does split apart every clapboard and nail and piece of barbed wire you've hammered to it." I've been following Heather Lanier's blog for years, every since I read an essay of hers in The Sun. This is her story of trying to create the perfect "Superbaby" -- like so many of us expectant moms do -- by doing everything right (organic this, Hypnobabies that), only to realize that maybe we're completely wrong about what makes a body and a life worth valuing, loving, and celebrating. It's a beautiful story and she's a beautiful writer, and this book is one I wish every single educator could read before they enter a classroom, or every single parent before they welcome a child, or everyone who has ever grappled with the messiness of being human. Which, wait, is everyone. (This is one of those rare books I would literally recommend to anyone.)

  22. 5 out of 5

    Katelyn

    Lanier's memoir about her first years raising a daughter with Wolf-Hirschhorn syndrome is honest and reflective. Lanier combines her personal account with research about able-bodiedness and disability, as well as reflections on what these words mean to society and to her. This book will make you think a lot. Her daughter's condition is just that, a condition in her life. It is not a problem. People are different. Fiona's school embraces and normalizes these differences. I highly recommend this b Lanier's memoir about her first years raising a daughter with Wolf-Hirschhorn syndrome is honest and reflective. Lanier combines her personal account with research about able-bodiedness and disability, as well as reflections on what these words mean to society and to her. This book will make you think a lot. Her daughter's condition is just that, a condition in her life. It is not a problem. People are different. Fiona's school embraces and normalizes these differences. I highly recommend this book.

  23. 4 out of 5

    Janet Lowe

    I read this book soon after my first granddaughter was born, feeling such gratitude for a healthy little girl now an integral part of our family. Meeting Fiona and sharing the challenges that faced this beautiful little girl and her family reminded me of the intolerance we still face when lives are different. As a former teacher of special needs children, I thought I understood the intolerant world that children with special needs must endure. This book taught me so much about the complexity of I read this book soon after my first granddaughter was born, feeling such gratitude for a healthy little girl now an integral part of our family. Meeting Fiona and sharing the challenges that faced this beautiful little girl and her family reminded me of the intolerance we still face when lives are different. As a former teacher of special needs children, I thought I understood the intolerant world that children with special needs must endure. This book taught me so much about the complexity of raising a child to move beyond the barriers set by too many.

  24. 5 out of 5

    Cheryl Sokoloff

    When Heather Lanier received a diagnosis of Wolf-Hirschhorn Syndrome (WHS), it was like a rude awakening for her. She took every precaution over the course of her pregnancy to ensure she would deliver, what she refers to in the memoir as America’s #superbaby, beginning with her baby’s Apgar scores, minutes of entering the world. WHS, or 4P minus (-), (what Heather prefers to call her daughter’s “condition”), is a genetic deletion 🧬 of the tip of chromosome 4, resulting in severe developmental de When Heather Lanier received a diagnosis of Wolf-Hirschhorn Syndrome (WHS), it was like a rude awakening for her. She took every precaution over the course of her pregnancy to ensure she would deliver, what she refers to in the memoir as America’s #superbaby, beginning with her baby’s Apgar scores, minutes of entering the world. WHS, or 4P minus (-), (what Heather prefers to call her daughter’s “condition”), is a genetic deletion 🧬 of the tip of chromosome 4, resulting in severe developmental delays (from lifting of the head to walking and talking), certain physical traits, including, petite stature, a high forehead, and wide set eyes, and, serious medical complications including susceptibility to seizures, swallowing issues (risk of aspiration), and kidney failure. Heather explains how she came to accept the uniqueness of her daughter Fiona, and allowed herself to love her for exactly who and what she is. By forgetting “the #normal”, and doing away with “#ableism”, and using a strength based framework, Heather changed her #outlook. Now, 7 years later, if you ask her, “A diagnosis of 4P minus: Good or Bad? She’d say Good! (You could watch her #tedtalk, Good or Bad, Incomplete Stories We Tell Ourselves). Thank you Heather Lanier for sharing your / Fiona’s story! I learned so much from the book. Your memoir will stay in my heart ❤️ and in my mind.

  25. 5 out of 5

    Samantha

    Perspective giver. As an OT, the parts I enjoyed the most were the perspectives of the parent or the caregiver of the patient, which we don’t always see. We come in with a job to do, goals to meet, and then we go home to our own lives. It becomes easy to forget that just because I deal with disabilities everyday, this is someone else’s first time and it’s a big deal to them. I also really loved getting to see the bond with Fiona grow, and the authors relentless love and acceptance for her daught Perspective giver. As an OT, the parts I enjoyed the most were the perspectives of the parent or the caregiver of the patient, which we don’t always see. We come in with a job to do, goals to meet, and then we go home to our own lives. It becomes easy to forget that just because I deal with disabilities everyday, this is someone else’s first time and it’s a big deal to them. I also really loved getting to see the bond with Fiona grow, and the authors relentless love and acceptance for her daughter I have to be honest, I skipped over a lot of the relationship stuff. Not because it wasn’t interesting but because I really wanted to know more about the relationship and experiences with Fiona. I didn’t feel particularly moved, I guess maybe I’m just a little hardened because as I mentioned, a lot of the advocating for inclusion and accessibility is already part of what I know and live. I also have two small nephews with disabilities so I’m well aware of their struggles they and their mother face daily. But that’s just my personal experience coming into play. However, I do think this story can help many others to learn and recognize their biases, stereotypes and make impactful changes.

  26. 5 out of 5

    Carolyn

    Lanier takes the reader from her daughter's birth and diagnosis to the present. She and her husband support each other while adjusting to their reality of raising a child with the ultra-rare Wolf-Hirschhorn syndrome. She chronicles their joys and heartbreaks along the way, dealing with some insensitive doctors who do not value their child's life, the constant exhausting calendar of hospital and doctor visits, as well as some amazing therapists who give not only the child, but the parents, hope. Lanier takes the reader from her daughter's birth and diagnosis to the present. She and her husband support each other while adjusting to their reality of raising a child with the ultra-rare Wolf-Hirschhorn syndrome. She chronicles their joys and heartbreaks along the way, dealing with some insensitive doctors who do not value their child's life, the constant exhausting calendar of hospital and doctor visits, as well as some amazing therapists who give not only the child, but the parents, hope. Lanier has a way of presenting the hard questions and decisions every parent of a child who does not fit the "norm" faces, doing so with sensitivity acquired through experience, while getting her opinions across. The section of the book where Fiona begins pre-school and goes on to school is touching. It reminded me of R.J.Palacio's book, Wonder. But it's even better, because Fiona's story is true. By the end of the book, the reader is given the answer to Lanier's question: How can I best love my girl, just as she is? Love will find a way.

  27. 5 out of 5

    Tom Almeroth-Williams

    My 3-year-old daughter has the same syndrome as Heather Lanier's daughter, Fiona, so I've been excitedly (and nervously) awaiting publication of this book. I wasn't disappointed, far from it. This is a wonderfully frank, moving and uplifting personal account of coming to terms with a rare genetic diagnosis and bringing up a child with significant health problems and learning disabilities. But this certainly isn't just a book for people whose families have been affected by disability. Lanier offe My 3-year-old daughter has the same syndrome as Heather Lanier's daughter, Fiona, so I've been excitedly (and nervously) awaiting publication of this book. I wasn't disappointed, far from it. This is a wonderfully frank, moving and uplifting personal account of coming to terms with a rare genetic diagnosis and bringing up a child with significant health problems and learning disabilities. But this certainly isn't just a book for people whose families have been affected by disability. Lanier offers a wise, witty and passionate rallying cry for acceptance and finding a 'truer way of being human', not least by appreciating the wonder in 'mundane' everyday experiences. Beautifully written, the book moves back and forth through time in a really pleasing way, and shifts pace and tone to great effect. I was left with a sore neck from all the nodding, sore eyes from a fair bit of crying, but also a greatly warmed heart and an even more positive outlook on life.

  28. 5 out of 5

    Sidnie

    I saw this book recommended through a blog I read, then then a friend followed up with a recommendation. I have one child and an expecting my second. This challenged a lot of what I thought about ableism, and "normalcy" and what a life is really worth, as well as validating some of what I experienced in pregnancy and having a baby. It was very engrossing and touching. I think this accurately captures the evolution that a person would move through as a parent of a child with special needs. The au I saw this book recommended through a blog I read, then then a friend followed up with a recommendation. I have one child and an expecting my second. This challenged a lot of what I thought about ableism, and "normalcy" and what a life is really worth, as well as validating some of what I experienced in pregnancy and having a baby. It was very engrossing and touching. I think this accurately captures the evolution that a person would move through as a parent of a child with special needs. The author is very self aware and reflective. At the same time, I'd have preferred if she would have mentioned the privilege that came with a lot of services she was provided and how those don't apply to everyone. She does talk about this toward the end (and it's not the point of the book, a memoir) but that was a piece that was missing for me. Overall, a wonderful read as we consider how inclusion enriches our lives.

  29. 4 out of 5

    Emily Beard

    This is such an important book. As a mom of a kid who has faced multiple health problems, I relate to the push and pull of loving a child through fear and uncertainty and so I felt the triumphs of Fiona’s progress from birth to elementary school. I loved Lanier’s writing, so beautiful and vivid, and true and honest. I laughed and cried throughout the pages, and found myself falling in love with Fiona and cheering both mom and daughter on. Being an advocate is a special kind of exhausting and I a This is such an important book. As a mom of a kid who has faced multiple health problems, I relate to the push and pull of loving a child through fear and uncertainty and so I felt the triumphs of Fiona’s progress from birth to elementary school. I loved Lanier’s writing, so beautiful and vivid, and true and honest. I laughed and cried throughout the pages, and found myself falling in love with Fiona and cheering both mom and daughter on. Being an advocate is a special kind of exhausting and I am grateful she didn’t minimize that, and that she shared the feelings of social isolation and post traumatic stress. I appreciate the opportunity to see into their lives, to deepen my understanding and empathy for people living with different abilities, and making sure to create space for them while making no assumptions. “That’s how she was designed!” Is such a positive and loving response to anyone wondering “why this or why that?” about someone.

  30. 5 out of 5

    Emily Ryan

    This memoir is a gift from the author. It is written so honestly and shares the family's innermost struggles and triumphs through navigating life with a child born with a rare syndrome. Heather is an amazing writer and having read her book I can confidently say she is an amazing human being as well. As a therapist, I especially cherish how accessible (pun intended) this story makes the subject of inclusion and growing the community that supports disability. The details about her daughter Fiona's This memoir is a gift from the author. It is written so honestly and shares the family's innermost struggles and triumphs through navigating life with a child born with a rare syndrome. Heather is an amazing writer and having read her book I can confidently say she is an amazing human being as well. As a therapist, I especially cherish how accessible (pun intended) this story makes the subject of inclusion and growing the community that supports disability. The details about her daughter Fiona's own unique developmental timeline are such an important part of educating the public. I hope this book will reach far and wide because it has the potential to help challenge ableism for adults as well (aging, dementia, etc.) Thank you Heather for opening up your life to readers... I believe it will be well worth it!

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