Approximately 50,000 children die each year in the US and an additional 500,000 children suffer from life–limiting illnesses. And for each of these children for whom there is no treatment or cure, there are the parents and families who are “living a loss” everyday. Unfortunately, while there are endless parenting books about raising healthy, typical children, there is very little out there for parents whose “new normal” means focusing on quality of life and staying sane.
THE MISSION of Courageous Parents Network is to support parents and families of children living with life–limiting illness with the tools they need as they adjust to the prognosis and then when they contemplate their child’s transition to end–of–life. We do this through:
- Providing parents with coping resources around Anticipatory Grief, Bereavement and all the Living in-between
- Providing parents with a framework within which to think about the tough questions, including end–of–life
- Promoting the value of pediatric palliative care
- Educating professionals around the needs and experiences of parents caring for these children
OUR GOALS are to lessen the fear and isolation that parents feel and to improve the care and impact of pediatric palliative care and hospice providers who serve these families.
OUR VISION is that parents who receive a devastating diagnosis for their child will have the support necessary to care for their sick children with courage and confidence, and that the narrative of their family’s journey enables healing before and after the child’s death. The better the Before, the better After.
At the heart of Courageous Parents Network are the parents themselves: parents sharing – through video – their experiences and feelings, speaking frankly about intimate challenges and moments in caring for their sick child including through the end–of–life. May these stories inspire, educate, embolden and provide comfort to other parents:
You are not alone. Here is what you want to say but perhaps cannot. Here is what you want to know.
May they shine light on the dark places. And may they deepen and inform health care providers’ understanding of the needs and experiences of the whole family.