Growing up above a canyon in Big Sur gave Olivia De Sola Barnes a natural playground. Her childhood was spent making mud pies, playing in the nearby creek out in the fresh air and under the shadow of massive redwood trees. “She had the ideal childhood,” Libby Barnes, Olivia’s mother, says.
Of the thousands upon thousands of happy memories Libby and her wife, Dani De Sola, have of their daughter, a few stand out, apart from the big birthdays or Christmas celebrations. They’re small and cherished. Like that one rainy afternoon when they took Olivia outside on her wheelchair so she could stick her tongue out and taste the rain.
These memories highlight a few things about Olivia’s life at that moment. She could no longer run around on her own because she was diagnosed with diffuse intrinsic pontine glioma, a rare cancer that attacks the brain stem. And that she only had a few months to live, but despite all of the hardship and sickness, Olivia still just wanted to be a kid.
Olivia passed away on Jan. 16, 2019, at 9 years old.
Dani and Libby knew their daughter had cancer a couple of months after Olivia passed out at school and had to be airlifted to the pediatric intensive care unit at Lucile Packard Children’s Hospital at Stanford. They found out upon diagnosis that it was terminal. “She was just so intelligent. She knew something was wrong and I think she knew deep inside it wasn’t going to get better,” Libby says.
When they think about their time with Olivia, there’s still a lot of sadness, especially around Christmas. They were able to spend one last Christmas at home with Olivia during her illness. “We bought the big tree and we sang Christmas carols. It was bittersweet,” Libby says.
They’re keeping Olivia’s memory and artistic spirit alive. After her death, her classmates at Carmel River Elementary School helped finish a story Olivia was writing about eight orphan girls. This year, her parents submitted her piece “Blue Tree with Red Fox” to the Community Association of Big Sur’s student art contest; Olivia won posthumously.
“She had such an artistic spirit and loved every human and animal,” Libby says.
Olivia also loved theater, and her parents created a scholarship for nonprofit theater camp StageKids! Big Sur. The family has also decided to support Unravel Pediatric Cancer, a Gilroy-based nonprofit helping to fund research on childhood cancer.
Olivia’s parents say her curiosity and sense of imagination for the world primed them for keeping her spirit alive. “She’d always ask me questions like if I believed in mermaids or fairies,” Dani says. “I’d always say I believe what I see. But now I do believe in those things. I have to, because Olivia’s magic is still around us.”