Courageous Parents Network

ENERGY IN ACTION - EPISODE 104 Courageous Parents Network Blyth Lord and Liz Morris join me from the Courageous Parents Network, an organization that offers a lot of resources for parents and caretakers, from diagnosis to losing a child and every stage in between— it's like a warm hug! EPISODE HIGHLIGHTS What is Courageous Parents Network (CPN)? Courageous Parents Network is a national non-profit organization that orients and empowers parents and others caring for children with serious medical conditions, by providing resources and tools that reflect the experience and perspective of other families and clinicians. We do this through producing and curating digital resources, available on our website and through live programming. CPN was inspired through my experience as mother of a child with a rare genetic condition who died shortly after her second birthday. A lot of what informed the creation of CPN was through my lived experience, but everything it has become is because of the network of parents and clinicians who have contributed their experiences and perspectives. Can you share more about CPN's live programming? We started with only a digital platform of professionally produced videos, audio stories, parent-generated blogs and guides, but we realized the need to bring families together in a live setting. Each live session features a parent and clinician expert who leads a talk on a resonant issue such as supporting siblings, dyadic couples coping and patient decision-making. If you aren't able to join a live event, most recordings are available on our website. Liz, how did you become involved with CPN? My son Colson was born in 2016 after a normal pregnancy, but shortly after his birth, he had an irregular newborn screening and was having difficulty eating and maintaining his body temperature. He was diagnosed with mitochondrial disease at four months old through genetic testing. His disease progressed rapidly in the first year and my husband and I grappled with what our son's life would look like. When Colson was seven months old, we began palliative care and the palliative care team connected me with CPN. I spent time on the CPN website and felt a sense of hope and I felt validated, knowing I could navigate the uncertain future. What should people know about palliative care? A palliative care clinician will provide anticipatory guidance to let caregivers know what the likely experience will be over the trajectory of the illness and provide considerations for care. Palliative care is a system for support, a place to talk about difficult things, a system that allows for choice and comfort management. Palliative care can potentially begin at the time of diagnosis and extend over years, where hospice care is provided at the end of life. What resources does CPN offer parents who have lost a child? We have a lot of content for bereaved parents, including interviews with other parents who have lost a child, whether it was sudden or anticipated, where they reflect on before and after their child's passing. We cover topics such as identity as a parent after your child has died, supporting siblings after a child dies and taking care of yourself after your child has died. We also offer a lot of content for parents who are anticipating their child's end of life. LINKS & RESOURCES MENTIONED Courageous parents Network Website https://courageousparentsnetwork.org/ Join CPN https://courageousparentsnetwork.org/signup/ NeuroJourney Website https://neurojourney.courageousparentsnetwork.org/ CONNECT WITH MITOACTION Website https://www.mitoaction.org/ Facebook https://www.facebook.com/mitoaction Twitter https://twitter.com/mitoaction Instagram <...