A few years ago, before Courageous Parents Network existed, I asked a seasoned pediatric palliative care doctor what he thought the most important thing ‘experienced’ parents of pediatric illness could offer other parents whose children were seriously ill. “Help with the siblings, the healthy children in the family,” was his immediate response. Another pediatrician told me, “We worry so much about the other children in the family and yet we have so little time available to help them.”
This response dovetailed exactly with my own personal experience. When our second daughter Cameron was diagnosed at age 6-months with a fatal disease, my husband Charlie’s and my 2nd immediate thought was “Oh my God! What are we going to tell our older daughter Taylor?! How can we keep her OK in all ways during her sister’s illness?" (Our 1st thought was, “Oh my God! How are we going to do this without breaking apart into a million pieces and failing both of our children and each other?!!!!”)
In the weeks that followed, Taylor’s well-being was as paramount to us as Cameron’s. But there was no training, no roadmap, no manual for whether and how to talk to Taylor about the possibility that Cameron would die. We panicked about what to do and how to do it.
We were not alone in such a response. When parents have multiple children and one of them is seriously ill, our limitations and vulnerabilities as parents are exposed even further. We stare at the impossibility of what we’re being asked to do. We feel isolated and clueless. We need help.
I founded Courageous Parents Network (CPN) to bring precisely the help we wished we’d had then to parents who are going through this today: the coping tips, the guidance from professionals, the framework for decision making, the virtual community. And today I want to share with you CPN’s "You Can Do This—A Parent’s Guide to Helping Siblings Cope with Life-Threatening Illness,” a starting point to help parents with their other children. This collection of insights from child psychologist Nancy Frumer-Styron, Psy.D. offers professional guidance and simple suggestions. I hope you will share it with families you support and that it helps you shepherd them across this challenging terrain.