Unsung Hero: Christy Shake of Brunswick, writing Calvin's story
BRUNSWICK — Christy Shake, on first impression, seems to have the perfect life.
She’s attractive, smart, personable. She lives in a nice cedar house, just steps from Bowdoin College. A magnificent backyard garden reflects her artistic eye. She’s married to Michael Kolster, a popular photography professor at Bowdoin.
Shake spent her early years in the fast lane in the Pacific Northwest. Top student. Talented swimmer. Earned Academic All-American honors at Central Washington University. After graduation, she spent seven months backpacking in Europe. Her retail career in Seattle led her to design apparel in San Francisco, where she worked for Levi Strauss. While there, she met Kolster.
In 2000, Kolster moved to Maine to teach at Bowdoin, and Shake arrived a year later. Her experience landed her a job as senior designer for the women’s brand at L.L. Bean. After Christy became pregnant, she resigned her position, the first step down a much different life path then she had anticipated.
Shake recalls that a doctor who, after detecting “enlarged lateral ventricles” in her unborn child’s brain, said, “This is something you need to worry about; come back in four weeks.”
Taken aback by the news (and the doctor’s insensitivity), Shake launched into action, unwilling to wait four weeks to do something that might help her unborn child. She conducted research and then got tested at Boston’s Beth Israel Hospital, which was conducting studies. The tests revealed possible brain hemorrhaging and other issues. Shake had also noticed that she rarely felt her baby move.
Plans called for a scheduled Caesarian-section at Children’s Hospital in Boston on Feb. 11, 2004, but Christy’s water broke a few days earlier, during an ice storm, so it was not possible for her to get to Boston.
Her son Calvin was born six weeks early at Maine Medical Center in Portland, on Feb. 7, 2004.
“He was four pounds, 15 ounces,” Shake said, “a good size for a preemie. But he had very low muscle tone and terrible Apgar scores.” Calvin spent the first week of his life in intensive care and remained in the hospital for six more weeks.
During his first year and into the second, Calvin continued to lag behind on the usual child development skills.
“He couldn’t hold his head up until he was 1," Shake recalled. "I’d spend hours on my knees trying to teach him to crawl. He was legally blind, as he could only see about six inches in front of his face.”
And then things got worse. Much worse.
At 18 months, Calvin experienced a febrile seizure, followed by another febrile seizure a few weeks later. In March 2006, he was diagnosed with epilepsy and began taking seizure medications to deal with the condition. At 2 1/2, Calvin had a grand mal seizure that lasted 45 minutes.
“I knew that such a long seizure would probably affect his brain function,” Shake said, "and we thought he was going to die.”
Today, Calvin is 8 years old. Heavily medicated because of his epilepsy, he still experiences seizures about once a month, each lasting about three minutes. He attends Coffin School, where he works one-on-one with aides. The aides send home daily reports of what occurred in school, and nurses come in four days a week to ease the burden on Shake and her husband.
“Calvin can’t walk without falling,” Shake said. “We have to hold his hands or put him in a harness. He can’t speak. And he mouths everything. We have to be on him like a bad suit. He’s so wound up due to the drugs that I can’t hold him in my lap. It’s physically and emotionally demanding.”
Shake now puts energy into helping raise awareness of epilepsy and funds to find a cure. She rattles off facts with ease.
“More people – 50,000 – die each year from epilepsy than from breast cancer,” she said, “but it lags other major diseases in research funding because of the stigma and the lack of a celebrity advocate.”
Shake writes a personal and poignant daily blog called “Calvin’s Story," and finds release in tending to her exquisite garden. “I wanted to create a beautiful space. Michael and I seldom travel, so the backyard is like our own in-town camp," she said.
If you read her blog, you will discover that Shake doesn’t feel a woe-is-me sorrow. But she is no Pollyanna. She’s a strong and devoted mother and wife. She’s also fiercely determined to help find a cure for a condition that, in Calvin’s case, “trumps blindness and all his other issues.”
Shake said she doesn’t see herself as a hero, either.
“Our son is the real hero in this story," she said. "He’s going through all this stuff, and he can’t even tell us how he feels. Yes, Calvin is the real hero.”