My Journey with Jake
A Memoir of Parenting and Disability
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 |
