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My Own Blood
- A Memoir of Special-Needs Parenting
- Narrateur(s): Ashley Bristowe
- Durée: 15 h et 43 min
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My Own Blood
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Description
Mothering under normal circumstances takes all you have to give. But what happens when your child is disabled, and sacrificing all you've got and more is the only hope for a decent future? Full of rage and resilience, duty and love, Ashley Bristowe delivers a mother's voice like no other we've heard.
When their second child, Alexander, is diagnosed with a rare genetic disorder, doctors tell Ashley Bristowe and her husband that the boy won't walk or even talk - that he is profoundly disabled. Stunned and reeling, Ashley researches a disorder so new it's just been named - Kleefstra syndrome - and she finds little hope and a maze of obstacles. Then she comes across the US-based "Institutes", which have been working to improve the lives of brain-injured children for decades. Recruiting volunteers, organizing therapy, juggling a million tests and appointments, even fundraising as the family falls deep into debt, Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy program for their son with the hope of saving his life and her own. The ending is happy: He will never be a "normal" boy, but Alexander talks, he walks, he swims, he plays the piano (badly), and he goes to school.
This victory isn't clean, and it's far from pretty; the personal toll on Ashley is devastating. "It takes a village", people say, but too much of their village is uncomfortable with her son's difference, the therapy regimen's demands, and the family's bottomless need. The health and provincial services bureaucracy set them a maddening set of hoops to jump through, showing how disabled children and their families languish because of criminally low expectations about what can be done to help.
My Own Blood is an uplifting story, but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help. It's the story of a woman who lost everything she'd once been - a professional, an optimist, a joker, a capable adult - in sacrifice to her son. An honest account of a woman's life turned upside down.
Ce que les critiques en disent
“Most books about raising children with serious disabilities aim for optimism, and sound exactly alike. But once in a while, a gifted writer produces a brutally honest and utterly readable account of that dark, detailed, furious, unseen world, after which you can’t see ordinary life the same way again. It’s a rare gift, but Ashley Bristowe’s My Own Blood is that kind of book. You need to read it, as soon as possible.” (Ian Brown)
“My Own Blood is like the clearest window pane, through which we have the privilege to observe, absorb, the extraordinary journey of love between a mother and her very special child, and also view the price she, and all of us, pay for freedom, perseverance, hope and fulfillment. A stunner of a memoir in which each sentence either sings or stings.” (Deepa Mehta)
“This memoir is as unputdownable as the best thriller. Really, I was awake until 3 AM reading this true story of a sharp-witted, foul-mouthed mother losing her mind as she saves (and utterly transforms) her severely disabled son’s life. Ashley Bristowe meets our collective silence about disability head-on and speaks, cries, sings and laughs in its (our) face. This is not a tidy depiction of singular heroism. It’s shockingly real, painful, hilarious, and, at times, terrifying. Over and over again, she shows how we, too, each of us, can and must summon the political will and the moral courage to respect, to love and to share our power with the most vulnerable people among us. An extraordinary testament to human connection. And swearing.” (Karen Connolly)
Ce que les auditeurs disent de My Own Blood
Moyenne des évaluations de clientsÉvaluations – Cliquez sur les onglets pour changer la source des évaluations.
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Au global4 out of 5 stars
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Performance2 out of 5 stars
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Histoire5 out of 5 stars
- Lynne
- 2022-03-23
What a story, but…
The author reads her own book, which I normally enjoy…. But in this case, she just downright got on my nerves. Despite her heroic efforts and accomplishments with her disabled son, I just felt like she was trying to be too clever by half. I almost gave up but then got to the part about The Institutes in Philadelphia, and things got a lot more interesting. I put up with the author, and frankly it was a fascinating and enlightening book. Overall I give it 4 stars because that author just bugged me throughout… between the gratuitous cursing and constant put-downs of Calgary (among other things)… otherwise it’s a superb read offering insight into this life no-one wants or chooses, but some rise above (as this family did) - and bravo to them! Wow. I can’t say I would have the wherewithal to do what they did…. And so grateful my kids are perfectly healthy, there by the grace of God go I.
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Au global5 out of 5 stars
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Performance5 out of 5 stars
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Histoire5 out of 5 stars
- Michele Donais
- 2021-04-08
A candid look into the reality of disability and the strength it takes to keep going.
This memoir lays bare the hurdles that families have to constantly clear to access services for a child with special needs. The physical, social, psychological, and financial collateral damage to the family is frighteningly honest. The soul crushing burden placed on the primary caregiver is explored with great honesty. Loved the undercurrent, woven throughout, that encourages us all to ‘do better’ and behave with a greater sense of community. I have never read anything that captures the essence of what is means to parent a child with special needs as well as this book does. Well written with excellent narration by the author.
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Au global5 out of 5 stars
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Performance4 out of 5 stars
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Histoire5 out of 5 stars
- Sarah
- 2021-07-15
My Own Blood should be a required read!
My Own Blood should be a required read especially for those who work in “Special Education”.
Ashley Bristowe’s Memoir of her life as a mother raising a child with special needs is a story, a life all should read. She is honest, raw and riveting! Her struggles are real.
Ashley’s open and forthcoming information about her family’s difficult path through the health care system as well as the government’s lack of funding, bureaucracy, and the effects of stress on a family and how to deal with LIFE is eye opening- shocking!
This book shows us that we, as a country are failing our MOST VULNERABLE PERSONS and that seemingly we are ok with that…. It’s heartbreaking!
Ashley’s strength, passion vulnerability and love for her whole family is apparent throughout this book.
My Own Blood is a book that forces us to consider and reconsider how we work as a community and how we can truly make the world, our country a better place for all.
Thank you for this lasting read Ashley!
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