CCA Blog

Every day in my work at CCA, I celebrate our ability to provide JoyRx to hundreds of kids returning home and getting better. But recently I have had the privilege to spend time with CCA families facing the terminal diagnosis of their child, as well as with parents whose children have died. It takes me right back to living and struggling through these heart-wrenching experiences with the death of my oldest daughter, Alexandra.

 In reflecting on my conversations with these parents, I wanted to share part of an interview with author Marilynn Robinson in an issue of the Paris Review. The interviewer recalled Robinson observing that Americans often avoid and deny the “larger issues in life.” Robinson shared: 

 The ancients are right: The dear old human experience is a singular, difficult, shadowed and brilliant experience that does not resolve into being comfortable in the world.  You are depriving yourself if you do not experience what humankind  has experienced, including doubt and sorrow. We experience pain and difficulty as failure, instead of saying, I will pass through this. Everyone I have ever admired has passed through this, music has come out of it, and literature has come out of it. We should think our humanity is a privilege.

 For families like mine, I believe it’s our friends and community who become our beacons of hope and humanity. They help us find our way as we travel through some of the darkest days of our lives, their compassion easing our hopelessness, doubt and sorrow. I hear many stories from families facing a child’s terminal diagnosis that speak to the powerful comfort they received when others simply acknowledged their pain and were not afraid to reach out to them in their grief and isolation.  Perhaps it was a warm dinner left on the doorstep, an enormous hug, music at their child’s hospital bed, a card, or an offer to stay at CCA’s Caring Cabin. Always, it was the simple gift of acknowledgment from friends and family and the support from our communities that made their loss and grief something they could ultimately survive and endure.

 Thank you for helping us, teaching us and being there.

 Warmly, Regina