Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: ✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions ✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays ✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents ✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience Whether you’re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will res