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"Parents don't need consolation. What could possibly console? Parents need the tools to walk through the fire without being consumed by it."

Emily Rapp, The Still Point of the Turning World

Approximately 550,000 children live with serious illness in the United States. And for each of these children, there are the parents who love them, must make decisions for them, and must keep everything together, including for their other children. And, while there are endless parenting books about raising healthy, typical children, there is very little out there for parents whose “new normal” means ensuring their child’s wellbeing and staying sane.

 

THE MISSION of Courageous Parents Network is to support parents and families of children living with serious illness with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey.

 

We do this through:

 

* Providing parents with coping resources, professional guidance and parent-to-parent support around all the complicated living that accompanies pediatric illness
* Providing parents with a framework within which to think about the tough decisions involved in their child’s care
* Promoting the value of pediatric palliative care which adds an extra layer of support for families
* And for those parents whose child is facing end-of-life, giving voice to their questions and providing insights shared by parents who have experienced this.

 

OUR GOALS are to lessen the isolation and fear that parents experience and to enable coping and parent resiliency.

 

OUR VISION is that parents of children with serious illness feel supported as they care for their children, and that the narrative of their family’s journey is one of minimal regret and maximum healing.

 

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:

 

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.