LEXINGTON, Ky. (Oct. 19, 2015) — The University of Kentucky Human Development Institute last week released “Coping with Loss: Down Syndrome” by Stephanie Hall Meredith and Nancy McCrea Iannone to offer support to families who have experienced a miscarriage or lost a baby or child with Down syndrome. The book was released on Pregnancy and Infant Loss Remembrance Day, Oct. 15.
The book covers topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.
The average life expectancy for people with Down syndrome is about 60, so the minority of families who lose their children with Down syndrome during pregnancy, infancy, or childhood often feel alone. These parents tend to describe their loss in terms of losing their child, their community, and their identity, and they often deal with insensitive comments about the Down syndrome diagnosis or health issues while coping with grief. The purpose of this book is to give them comfort in hearing the voices of other parents who have walked the path.
“Coping with Loss: Down Syndrome” is available for free digitally at http://downsyndromepregnancy.org/, a program hosted as part of the Human Development Institute’s National Center for Prenatal and Postnatal Resources.
Co-author Iannone said, “This book was created to help parents in their darkest hour. It won’t take away their pain or loss, but we hope it will give them some information that may be otherwise difficult to find. This book will also give voice to new guides — parents who have experienced the same searing pain, who have committed to and embraced the journey of parenting a child with Down syndrome only to be unwillingly placed on a different path. We hope their words will resonate with you. You are not alone. We are so very sorry for your loss. Even if your child is no longer with us, you will always be a part of the extended Down syndrome family. Your child was wanted, and loved, and welcomed, and your child will be missed. You will always be one of us, a parent of a child with Down syndrome.”
Therapist Trish McGarrigle shares, "This compassionately written book addresses the heartbreaking topic of fetal and infant loss with professionalism and sensitivity. If you have experienced a loss, you will find comfort and understanding in these pages. If you care about someone who has endured a loss, you will want to read it cover to cover."
According to Desiree Hokeness, a mom who experienced the loss of her son with Down syndrome, "This booklet provides an immense resource for families as they cope with the loss of their child. I take great comfort in knowing that it will reduce stress for future grieving families by guiding them through this difficult experience."
You can help HDI continue offering these important resources for free digitally by making a tax-deductible contribution at http://downsyndromepregnancy.org/donate/.