MILWAUKEE, Wisc. /eNewsChannels/ — In the summer of 2004 Margaret Meader and her family headed to the hospital excited for the cesarean birth of her second child. They, and their medical team, were shocked when Evan arrived with severe deformities that were later diagnosed as Apert Syndrome, a rare genetic disorder.
Despite her grief and pain, Margaret began keeping notebooks about Evan’s life and medical care on the day he was born. That wealth of recorded information not only gave her the tools she needed to change her son’s life, but now enables her to share that knowledge with others who are in crisis in her book “Uncommon Beauty: Crisis Parenting from Day One” (ISBN-13: 978-1592984879; paperback).
When Evan was born Margaret went immediately to the bookstore, searching for any kind of guidebook to help deal with the challenges her family was facing. That book did not exist. In “Uncommon Beauty: Crisis Parenting from Day One” Margaret offers readers the book she was looking for, a volume with practical ideas, facts about working with doctors, nurses and hospitals, tips from a seasoned caregiver, revelations, hope and answers to the mysteries of caring for a special child.
Her book is easy to read, with information that can be taken in quickly during a busy day. Each chapter addresses specific topics such as “Surviving the First Days,” “Understanding Insurance” and “Caring for Siblings.” These chapters include not only Margaret’s story taken directly from her notebooks, but also tips, suggestions and tools for dealing with each of these important issues. Readers will also find hope and joy within these pages as this family rallies and moves from the pain of Evan’s initial diagnosis, to celebrating the love and happiness he brings to all of their lives every day.
Although Margaret’s family story is about a child with Apert Syndrome, and every medically fragile child’s condition is unique, the guidance and tools she offers in this book can be applied to many diagnoses and crises. She knows first-hand the self-doubt families feel when they are faced with the sole responsibility of caring for someone with complicated health conditions, making life-and-death decisions for a condition they know nothing about, and working with doctors who may have never treated their child’s rare disorder.
Margaret hopes “Uncommon Beauty: Crisis Parenting from Day One” will find its way into the hands of every person who is faced with the shock, pain and confusion she and her family confronted when her son was born. While these families might feel isolated and overwhelmed, her book will help them begin taking small steps toward the day when they can focus more on the joy their family brings them, and less on fears created by their medical situation.
For more about “Uncommon Beauty: Crisis Parenting from Day One” by Margaret Meder visit http://www.uncommonbeautycrisisparenting.com/ .
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