A few months after Kai died I was invited to a round table discussion for parents of terminally ill children, hosted by the Pediatric Palliative Care program we were involved with. I was not exactly sure what this meeting would entail but I jump at any chance to talk about Kai, even if the focus of the discussion would be about his death. I sat at that table across from some amazingly courageous moms of terminally ill children and we had beautiful, candid, raw conversation about diagnosis and treatment and the challenges of raising a child with disability. We talked about what it is like to raise a child you know is going to die.
This discussion was moderated by an amazing woman, and fellow bereaved mom, Blyth Lord. A mom who lost her daughter to Ty Sachs disease many years ago and has since dedicated her life to helping other parent cope with anticipatory grief, bereavement and all the living in-between. She has developed a network of resources for families The Courageous Parents Network: Empowering Parents caring for children with life-limiting illness.
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.
I was honored, and once again jumped at the chance to share Kai’s story, when I was asked to do a video interview for their website.
To watch the videos click here:
http://courageousparentsnetwork.org/videos-by-theme/
I remember feeling strong the day we filmed. I felt optimistic and thankful that all of this, Kai’s life, has a greater purpose. That Kai’s life gave me a greater purpose, the silver lining. As the months went on my cloud got darker, but watching these videos for the first time yesterday brought it all back to me.
It is surreal watching myself on video on the internet but I hope that our story is able to help others. As I watched and listened to all of the stories shared on the Courageous Parents Network I was reminded that no part of this journey is easy, we all do the best that we can in each moment. We are all in this together and sharing our stories matters. It helps us process and grieve and it helps others to know they are not alone.
A year and a half later I needed that reminder.
Please take a few moments to listen to and share the stories of these courageous 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.
Keikikai 
I met Blyth recently at my company’s Rare Disease Day. She came to speak to us about what it’s like to care for someone with a life-limiting illness, and how important it is to take care of the caretaker. She talked about the “web” that surrounds the caretaker, from the inner circle to those of us at the outer edges. I had no idea her web and your web were connected! You’re both amazing women doing great things to honor Cameron and Kai.