my son, Ezra

My son, Ezra.
I know life isn’t fair. I’m a grown up now, and I get it. Things happen, and sometimes they are with reason, and sometimes they are without. My son, Ezra, died seven years ago after fighting neuroblastoma cancer for 13 months. When I watch this video, I am broken over and again by the smallness of the moment, the casual magnificence. Oh, for another moment like that with him…

I carry that soul-screaming loss every day. I am a hopeful man, and for years after Ezra died I struggled to hold that hope. It wandered from me, tether-snapped back, and hid in the cracks in my bones left by the pain of loss. But I am a hopeful man.

Grief isn’t a season. Grief is a separate and simultaneous piece of your heart. It will not – should not – go away, and we simply continue. It is easy, and in some sad way comforting, to let grief overcome hope. I’m not sure if I’m saying that right… maybe to… rest in grief? Every moment I have a decision to carry or to be consumed by it. Not in an “unhealthy” way of not “moving through” something… I guess I’m saying simply this: you can not forget the child you’ve lost, and must still choose how to approach the world.

But I am a hopeful man. And I am surrounded by many hopeful people – who’ve known this icy clenched hand around their heart, who’ve stayed up crying for their sons and daughters, who’ve lost, who’ve fought, who’ve beaten cancer.

We may occasionally complain, but if we do it is because we choose to change this truth of childhood cancer. We may take days off because the closeness and weight of it all is too overwhelming that day. But usually – mostly – we are beating neuroblastoma.

Life is not fair. And terrible things sometimes happen for no reason. But WE choose to take tragedy as tempering. WE choose to stand when the shaking is furious, and to build practical and effective hope. We do this through research and clinical trials, understanding intimately the very thing which ripped our children from us, a terrible respect for cancer’s maliciousness.

600 kids. 30 hospitals. 19 clinical trials. 10 years. And so very many families who know a different truth than the one of loss my family (and many others) have, because of our work. I speak with depth of emotion because you cannot tell these stories without it.

Thank you for being a part of curing cancer for kids. #WEWillBeatNb