She can’t recall a time when it was not so. As far back as her memory stretches, Emily Williams has known that her little sister lives under the shadow of disease.
Lexie Williams’s low-grade brain tumor was discovered when she was an infant. It was a life-changing diagnosis that meant a frightening regimen of surgeries, and MRIs, and chemotherapy for Lexie, who became a familiar figure along the corridors of Boston Children’s Hospital.
It meant moments of sheer terror for Lexie’s parents, who focused their energies and emotions on their younger daughter, whose tumor doubled in size as she approached her fifth birthday.
It meant something else for Emily, the big and healthy sister. Lexie, she knew, was sick. She was also strong. She was a fighter. She truly was the hero child.
And, in her sometimes not-so-secret moments, Emily knew something else about Lexie, something that evoked guilt: Sometimes her sister could be really annoying.
“You’re worried and you’re scared for your sibling and then you’re jealous of all the attention she’s getting,’’ Emily, now 18, said the other day on the phone from her dorm room at Skidmore College. “There’s anger in there somewhere, too, and the feeling of being alone.’’
The Williams sisters of Lakeville grew up faster than most kids. They had to. Lexie, now 16, was in a struggle for survival. Emily was in search for nothing less than her sanity.
Caught in the intense psychic cross-currents that run through families confronted with a mortal illness, they have learned to lean on one another. “The siblings go through as much as the cancer patient does,’’ Lexie said.
The sisters and their family found a sort of emotional equilibrium a decade ago on the shores of Sebago Lake in Southern Maine where the remarkable Camp Sunshine opened its doors 30 years ago. It’s a place where sick kids can just be kids – and where their siblings and parents don’t just unpack and then drive away. They move in, too.
The camp is the legacy of Anna Gould, who with her now-former husband, founded it in 1984 after watching a TV segment about terminal illness in which a reporter asked a little boy: How do you cope knowing you’re going to die? It floored them.
Within a year, the camp opened at Point Sebago Resort in Casco, Maine, which they operated. What was supposed to be a one-and-done exercise stretched to two yearly sessions. And then to three. Now, reestablished on 24 acres next door to the resort, Camp Sunshine offers more than 25 sessions a year and has served more than 40,000 family members from 48 states and 23 nations.
There are several oncology and brain tumor sessions. One for kids with Lupus and several other deadly diseases. There are two sessions for families whose child has died.
The kids are grouped by age, not disease. They share stories — and tears. So do their parents, who network, compare medical notes, and manage to have fun. “Parents do karaoke,’’ said Alice Williams, the girls’ mom. “It’s a nonalcoholic place, but you wouldn’t know it.’’
Gould watches as campers enter through three iconic yellow doors — small, medium, and large whimsical portals. She sees pain upon arrival, and smiles upon departure. “If the kid has a tube up his nose, or if they’re bald, it’s no big deal,’’ Gould told me at her home in Bedford this week. “Nobody bats an eyelash.’’
On Friday night at Fenway Park, hundreds of people will rise and burst into applause at the State Street Pavilion as Anna Gould is honored for her work by the American Camp Association, New England.
Lexie will be there to contribute to that thunderous ovation.
And if Gould listens very closely, she will hear — from 200 miles away in Saratoga Springs, N.Y. — a singular ovation from Skidmore College. It will come from Emily Williams, who treasures the magic that occurs on the shores of Sebago Lake.