内容简介：
If you find yourself at the bedside of a child with multiple handicaps and complex medical needs, you need to read this book. Whether you are a nurse, doctor, parent or family member, health care professional, or a personal ally of an individual who is disabled, you will benefit from reading the stories in the book and the analysis of issues by the editor. It sometimes happens that some people, whether a professional or not, will be tempted to think of such children as better off dead-an extremely dangerous assumption. Illness and suffering do not diminish the value of a person's life, and no one has the right to decide whether or not a person should live or die. This book gives firsthand accounts of the experiences of handicapped children and their families in health care settings. Their experiences vary from doctor to doctor, nurse to nurse, and hospital to hospital. The key difference is that some people held a strong belief that every person's life has intrinsic value and that their lives were sacred. Yet others measured the value of a life according to external factors, such as level of disability, impairments, and level of suffering, whether presumed or real. You can guess which people gave better care, and which children lived longer and better accordingly. In spite of the difficult challenges that handicapped children and their families face as described in these stories, this book is a book of hope. You will be inspired by the courageous tenacity of parents who literally stood at the bedside of their children, often for months, and protected and affirmed the well-being of their child. This is a book about people who made a difference, a difference between life and death.