When Ben was in treatment, he had a signature move.
He would flip on some music, put on his headphones, and check out. Not in a sad way. In the way of a boy who had discovered, long before anyone taught him the term music therapy, that sound could carry him somewhere the chemo could not reach. He was five years old when he was diagnosed with neuroblastoma. He was eight when he died. And in between, he wore a Michael Jackson curly wig and a sparkly glove to the grocery store, demanded Olive Garden in Times Square after immunotherapy, and once stood up on a procedure table before a bone marrow biopsy and told his doctor, show me all your supplies first.
He was never defined by his illness. He was just doing cancer, as his mother Wendy puts it. Because that was what was there. The rest of the time, he was dancing through the city.
When the news ran their memorial piece after Ben died, they described him as having lost his battle with cancer. Wendy wanted to scream. He didn’t lose anything. He got dealt a crappy hand in this life. And then he inspired a community, countless people, people she will never meet.
How do you call that losing?
In the years since, Wendy has channeled everything she learned in those three and a half years of treatment into the Benjamin Goldberg Foundation, which advocates for what she calls the healing arts in healthcare. At Sloan Kettering, a dance therapist had walked into Ben’s treatment room one day and changed everything. His blood pressure dropped. He needed less medication than the other kids. The nurses came in and danced. And Wendy thought, I want to bring this home.
She did.
Today, every child who walks into their local children’s hospital in Virginia has access to music therapy, art therapy, dance therapy, yoga, and Reiki, because of Ben. Because of one little boy with headphones and a heart full of music.
The foundation has since expanded into social prescribing, partnering with a regional health system to explore the formal prescription of music and art to reduce anxiety, depression, and hospital visits. And Wendy has written it all down in her book, Mom’s Book: It Was Never About the Grief, just published last month, because that is the whole truth of it.
It was never about the grief. It was about Ben.
And Ben is still in every room.
You can find Mom’s Book wherever books are sold. Learn more about the Benjamin Goldberg Foundation and the BGF Podcast at benjamingoldbergfoundation.org.
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