There is ugliness in the childhood cancer world. Ain’t no doubt about that, right? But there is beauty too – in the helping hands, in the triumph of making a sick child smile and/or laugh, in the voices joined as one lifted in prayer. There is also beauty in the grieving family and friends of a deceased child doing everything they can to ensure that one day, no one else would have to suffer the way they did, in the way their child did. The saying “beauty is in the eye of the beholder” only goes so far. If you look closely enough, you can find beauty in most everything.
I recently read a book about a little girl who, in the face of her own battle with terminal brain cancer, asked “how can we help them?” Meaning the kids she saw stuck in the hospital with only literal windows to the outside. I had followed Jessica Joy Rees since 2011, shortly after she was diagnosed, and let me tell you, she was beautiful inside and out. She started a nonprofit called Never Ever Give Up (which was later changed to Jessie Rees Foundation) and she distributed her trademark JoyJars to children who were stuck in the hospital. Jessie was inspiring because she not only never ever gave up, but because she shared her light and love with others who needed it. If you want to read her story, I encourage you to pick up a copy of her book. Jessie found beauty in the ugliest of days and turned around and used her experience to help others, to bring sunshine and joy to the lives of others.
Nonprofits are faced with the question of “to care” or “to cure,” and Jessie, without hesitation, chose “to care.” Because she cared. She cared about the children she saw stuck in the hospital. She cared that they weren’t smiling. She wanted to bring them joy, to give them a reason to smile. And, yes, there is ugliness in childhood cancer. Much more than any St. Jude commercial is willing to show. There is grief. There are tears. There is screaming. There are pokes, throwing up, being too weak to get up and play, being connected to so many wires and tubes that it is hard to tell where one begins and and another one starts. There are children learning about death and loss the hardest way imaginable. There are children losing pieces of their childhood slowly.
But there is also hope, hope that people will start listening to our cries. We continue to talk about it. We continue to write about it. We have hope that one day, the right ears will listen, and the right eyes will see. Until then, we will take the beauty in whatever way we get it.