My Own Blood

Book excerpt: 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.