Golisano Children’s Hospital visit
2010
Last Friday, Christine Brouwer (www.mirasmovement.org) and I went to Rochester, NY so I could tell stories to the children in the Golisano Children’s Hospital. Along the way, Christine shared with me the story of her daughter Mira’s struggle with cancer and ultimate death in April, 2008. Mira was 4 years old. Her original diagnosis was on her 2nd birthday, January 27th, 2006. Christine is one of the army of mother’s who try to make things good and grief less all encompassing by helping others. Christine founded Mira’s Movement, an advocacy organization for kids with cancer with the intent of making just one life better for a family going through this ordeal. Oh how my heart broke for her and her family.
When we arrived at the hospital we went to the cancer wing. It’s hard to tell stories in a hospital for a number of reasons. Emotionally it’s overwhelming to see children in pain. The treatments are also difficult to watch because the children are hooked up to tubes, missing their hair, with visible large scars. They are accompanied by parents, grandparents and hospital support people showering them with attention and care.
The first child I told to was bedridden and a teenager with developmental delays. She wasn’t able to speak but was very communicative facially and physically. She was on a feeding tube. As I stood trying to call up a story or song that was just right, not too long, and easy to follow I sang the song Happy Birthday I learned off a Bill Harley album. This isn’t the dirge we usually sing but a sweet waltz. I sang that to her and she smiled. Then I told the story “The Big Wide Mouth Toad Frog” with sign language and some simple repetitive movements. She laughed each time the frog said “Who are you and what do you eat?” This room was the room that Mira had stayed in during her treatment there.
Then I went to the play room where I met a beautiful girl and two young children with their mother’s. I told stories with puppets and songs to them for about 40 minutes. During that time different hospital staff and doctor’s would stop in for a listen or to check on the children. This is guerrilla storytelling folks! It’s noisy, lots of distractions but oh, the payoff. Life is good.
Finally, we went to the outpatient treatment center and met four children with their grandma’s . This was the first time I saw a child under two receiving treatments for cancer. I left feeling pretty drained but satisfied that through a small action the world was made a little brighter. I say that like a PollyAnna- it was really difficult and felt like moving a mountain one grain of sand at a time. Life is good.
One Response to “Golisano Children’s Hospital visit”
Me again…I’m loving that you’re doing this! When my sister died last year a woman was roaming the halls of the hospital with her harp. She played beautiful Irish melodies for my sister for a good long time. My sister was actually in an almost sleep type state but you could see the stress leaving her body. It was so inspiring to me.