Extreme Caregiving

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 *