In her experience of parenting a seriously ill child and witnessing her death, Courageous Parents Network Founder Blyth Taylor Lord found comfort and confidence in three essential elements:
• A pediatrician who practiced palliative care as he guided the family in caring for Cameron
• A grief counselor who helped the family navigate their grief and cope with their anxieties during Cameron’s life and as they prepared for her death
• Her husband Charlie’s experience witnessing his nephew Hayden’s death five months prior, giving the family a sense of what was forthcoming and how they might anticipate and, eventually, emerge from the fog of their grief
Courageous Parents Network was founded to bring the value of these elements to other families caring for children with serious and life-threatening illness. Harnessing the power of digital media and Web and mobile platforms, we meet parents where they are, with what they need, in the voices of people who have traveled similar paths.
Our vision is that families feel strengthened and supported by fellow families sharing their lived experience, and by providers offering their expertise and resources, so that this seemingly impossible journey feels possible.
We pursue this vision through:
Education: Providing easily accessible, expertly vetted information and tools that address parents’ psychological and emotional issues, and enable informed decision-making.
A rich library of original videos, podcasts, guides and reports (to come) are available to families free of charge, 24/7. This material helps frame critical, sensitive issues such as working with the medical team, making difficult decisions, caring for the siblings, tending the marriage, coping with grief, and anticipating end of life.
Health care administrators and pediatric care providers are encouraged to refer families to Courageous Parents. In addition, in-service and other training program give voice to the parent perspective and promote mutual understanding and empathy. Courageous Parents materials and programs can be customized for providers just beginning their careers, and for those seeking continuing education opportunities.
Community: Connecting families sharing personal stories of their journeys with their children, to minimize isolation and promote the benefit of shared experience.
Educational materials are supplemented with options to connect more deeply and personally with other Network members and the Courageous Parents staff. Private discussion forums, opportunities to contribute to the Courageous Parents blog, presentations, volunteering, and connections through our advocacy work (below) are just some examples. This virtual community validates parents and helps them see their own journey more clearly.
Advocacy: Increasing awareness of and demand for pediatric palliative care to enhance quality of life for the whole family.
Courageous Parents is not a political organization, but it is one with a strong point of view. Through the Network, we seek to empower parents with the knowledge they need to advocate and make better-informed decisions for their children and themselves. Pediatric palliative care is a relatively new field, but its benefits are well established. The more we can help families avail themselves of these benefits, the better the outcomes for all concerned.
As advocates, we engage with thought-leaders and leading palliative care organizations at the national level, targeting providers, policy makers and the public. This engagement brings the parent perspective and voice to strategic planning and tactics around growing the pediatric palliative care movement.