Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.


Vicki Forman has written in various venues about her experience as parent of a special-needs child.  She has much to offer other parents involved in similar struggles over decision-making and care giving, not only in practical and personal terms, but in terms of the kinds of legal issues one is likely to confront.  Her moving, intelligent, emotionally complex memoir chronicles a long period of learning how to do a life she never expected.  The simple opening sentence, “I learned about grief during this time,” provides a perfect point of entry to her story.  Grief has many tributaries, and she explores them with candor and courage.  This book is an important one not only for those directly involved in life with a small disabled child, but for anyone who wants to give meaningful support to those finding their way through those challenges.  It provides information, encouragement, and healthy realism to counteract well-intended false optimism about what it means to talk about high-stakes medical decisions.


Houghton Mifflin Harcourt

Place Published

New York



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