Extreme Caregiving
The Moral Work of Raising Children with Special Needs
Lisa Freitag
Reviews and Awards
"Advances in medical technology have made it possible for doctors to save premature and/or severely disabled babies who would have died in any other century. And yet no one is talking about what this means (practically, emotionally, socially) for the parents of those babies - parents who are often called upon to create home ICUs and to devote their lives to what Lisa Freitag calls "extreme caregiving". For everyone in the medical profession - and for everyone who has wondered what it means to be a parent - this book is essential reading." -- Michael Berube, Pennsylvania State University, author of Life as Jamie Knows It: An Exceptional Child Grows Up
"Sympathetic, thoughtful, and often moving, without judgment, doctor talk, or romanticizing cliches, this book illuminates a role so under-acknowledged by medical providers, so taken for granted by society at large, it has long been rendered almost invisible. By weaving together candid accounts from recent memoirs, thorny issues raised in her work as a pediatrician, and memories, rich in emotion and meaning, of family experiences with her own brother, Lisa Freitag makes us care, at long last, about those thrust into lives they never expected and who might well struggle to succeed. Look over here, this work of much-needed advocacy says. Pay attention to our stories, too." -- Rachel Simon, author of The Story of Beautiful Girl and Riding The Bus With My Sister
"Extreme Caregiving is a foray into the moral hazard imposed by well-meaning clinicians on patients and their families, written by a pediatrician with a rare and singular vision. Generous, compassionate, yet unsparing, Freitag unfolds a humanistic portrayal of special needs children and their families; how they are "disappeared" in the medical narrative of specialist consultants and the vagaries of social services systems. She delivers this with the clarity and grace of a writer with the uncommon gift of soul and story." -- Mary Faith Marshall, PhD, FCCM, Kornfeld Professor and Director, Program in Biomedical Ethics, University of Virgina