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My Own Blood
- A Memoir of Special-Needs Parenting
- Lu par : 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.
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Commentaires
“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)