My Journey with Jake

My Journey with Jake

A Memoir of Parenting and Disability

By Miriam Edelson

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Jake is celebrating his tenth birthday. That’s a remarkable feat, because at birth he was given only three years to live. Miriam Edelson is his mother, a dedicated fighter for Jake and families in similar situations.
Edelson poses some tough questions: How do parents cope with a child who has special needs? Are we failing, as a society, to care for children with disabilities? Whatever happened to the federal government’s promise of a “Children’s Agenda”?
My Journey with Jake works on two levels. It’s a poignant memoir by a devoted mother, and a hard-hitting, well-researched look at health care for Canada’s children.

Praise

Miriam Edelson cuts through our natural distancing on this subject by taking readers on a surprising voyage of discovery. My Journey with Jake deftly draws you into an intense, private world of a couple’s expectations, momentary joy at their firstborn and devastation as they realize their baby is not normal…This book provides such powerful revelations of the raw emotions of having a child with extraordinary needs that it seductively draws you into the larger political issues.

– Ellie Tesher, The Toronto Star

A remarkable story. On her journey, Edelson travels roads, and achieves levels of awaresness, depths of fear, anger, love, that many of us will never know.

– Jim Coyle, The Toronto Star

With an unflinching honesty, Edelson recalls the sorrow, bouts of near despair and the painful divorce that followed Jake’s diagnosis-as well as her love and acceptance of her son. The book is also a tough-minded account of the battles Edelson has fought on behalf of Jake against the medical establishment and government funding cuts.

– Maclean’s

With an unflinching honesty, Edelson recalls the sorrow, bouts of near despair and the painful divorce that followed Jake’s diagnosis-as well as her love and acceptance of her son. The book is also a tough-minded account of the battles Edelson has fought on behalf of Jake against the medical establishment and government funding cuts.

– Maclean’s

Contents

Acknowledgements
Chapter 1 Maiden Voyage
Chapter 2 Hard-wired for Kids
Chapter 3 Searching for Answers
Chapter 4 Jakey’s Hungry
Chapter 5 Finding the Light
Chapter 6 No Heroic Measures
Chapter 7 Belleville or Bust
Chapter 8 Jake at One Year Old
Chapter 9 Trying Again
Chapter 10 Sister and Brother
Chapter 11 Families Fight Back
Chapter 12 The Ethic of Care
Chapter 13 Who Will Rock My Son?
Chapter 14 Climbing the Stress Meter
Chapter 15 Balance and Surrender
Resources for Parents