How to cope when your child has a life-limiting illness.
In my years as a hospice physician and through my own life experience I have grown quite familiar with the specter of loss. I have witnessed countless individuals and families as they struggled with the overwhelming pain of saying goodbye to a loved one and have found comfort for my own losses through the shared experience of grief that makes us all human.
However through all that time there is one particular loss that I have not found the strength to imagine: the loss of a child. As a mother I have spent untold sleepless nights listening for the sound of my children’s breathing, or their cries for help, or the front door closing as they return home safely. My deepest-held fear—one that I dared not even speak—has been of facing the agonizing pain of losing one of them.
But according to the US National Center for Health Statistics, over 50,000 children die each year—leaving their parents behind to face the rest of their lives carrying this unthinkable, unbearable loss. Blyth Lord is one of those parents: her daughter Cameron died of Tay-Sachs disease, a rare and incurable genetic disorder, before the age of three.
Blyth survived and rose above the loss of her daughter and went on to found the Courageous Parents Network, whose mission is “to support parents and families of children living with serious illness with the tools and virtual support they need to cope and adapt during their child’s illness journey.”
My interview with Blyth for End-of-Life University will be broadcast on Thursday February 26th and she will share her story of hope with listeners. She will also describe her work with The Conversation Project to create a Pediatric Starter Kit to help parents talk about the end-of-life with their children facing life-limiting illness.
Join us for this touching and inspirational conversation by signing up for End-of-Life University at www.eoluniversity.com.
About the Author: (Dr. Karen Wyatt is a hospice and family physician and the author of the award-winning book “What Really Matters: 7 Lessons for Living from the Stories of the Dying.” She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com.)