My Own Blood

A Memoir of Special-Needs Parenting

De: Ashley Bristowe

Narrado por: Ashley Bristowe

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 programme 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.

Writing Warrior Queen

Such beautifully strong, poetic & purposeful writing that gave me a detailed view of a world of which I had no understanding.
I loved the honesty of Ashley's story & also that the author narrated.

My Own Blood: A Journey That Changes You

My Own Blood is one of those books that you pick up and, dive into and come out the other side a changed person. The fight, the struggle, the hope, and the relentless determination of the author to give her son the best chance possible are truly admirable. Her journey sheds light on personal and system challenges that many of us, who don’t have a loved one with a disability, are often unaware of and how we can support.

All my respect and admiration go to you and to all the parents who walk in your shoes.

Emotionally powerful

I wasn't sure if I could benefit from listening to Ashley's book as my child with the same disorder of her son is older than hers and we didn't get a diagnosis until a much older age. I was actually afraid to listen to it. I didn't want to get lost in rehashing the pain again. However, I found it to be cathartic to listen to how similar our journeys were especially when it came to dealing with medical professionals, family, friends and the constant worry. It's an excellent read / listen for anyone who has a child with a disability.