The only thing Kellie Peterson would change about her living situation is having a dog.
Other than a furry friend, Merry Glen has been the ideal home for Peterson for 34 years. It’s a comfortable and safe place where Peterson, 53, lives as independently as possible for a woman with severe cerebral palsy, a neurological disorder that has robbed her of movement in her legs and arms.
Peterson controls her wheelchair, which her mom jokes is straight out of Star Trek, with slight turns of her head. A straw-like mouth stick activates her phone, stereo and TV. Eye movements run her computer and type emails. She rides the STA bus alone for church, errands and shopping and volunteers weekly at the Veterans Affairs Medical Center delivering mail. Everywhere Peterson goes she makes friends and offers a big, expansive smile that puts people at ease. She makes her own decisions and is quick to share her opinions.
For Peterson’s mother, Karen Schultz, Merry Glen has brought peace of mind that her daughter will continue to have quality, lifelong care when she dies.
“You always worry until you die,” Schultz, 73, said during one of her frequent visits to see Peterson. She sits on her daughter’s bed and shakes her head. “That’s just the way it is if you are a mother.”
Schultz calls Merry Glen “a dream,” especially after alluding to “bad” experiences with other care facilities in her daughter’s teenage years that are no longer in operation.
Merry Glen is unlike most residential homes for people with disabilities. Founded in 1961, it’s a nonprofit, family cooperative – one of only a handful in the country. Decisions are made by family members of residents. Both Karen Schultz and her husband, John, are voting members on the board of directors. When Schultz dies, Peterson’s guardianship will transfer to her sister, Karmin.
Yet under government rules, Merry Glen with its 15 residents is seen as “institutionalization” of people with developmental disabilities because it has so many people living under one roof. The state prefers that people who aren’t cared for at home live in smaller facilities like adult family homes, where staff care for up to six residents, said Merry Glen executive director Doug Overlock.
“Merry Glen is grandfathered in,” Overlock said. “I doubt they would allow us to do this again today.”
Most of Merry Glen’s residents have lived at the facility for years. Most stay until they die. Overlock said that’s the best proof that Merry Glen works.
He added that Merry Glen officials believe the state’s preferred living arrangements for those with developmental disabilities is “a recipe for isolation and loneliness.”
Ranch in Addy too far away
Living at home wasn’t an option for Peterson, whose mother described her birth in July 1962 as a “total disaster.” Peterson was full term but weighed just 3.5 pounds. The Chewelah doctor was gone fishing and there was no nurse. The rural hospital wasn’t prepared for such a small infant who was obviously struggling and having muscle spasms.
Peterson spent 29 days at Sacred Heart hospital in Spokane before she returned to the family cattle ranch near Addy, Washington. Peterson loved the country and enjoyed the many animals.
When she was 6, the family bought a house in Spokane so Peterson could attend a special school for people with cerebral palsy. Shultz lived in town during the week, and then she and Peterson and the family dog would return to the ranch on the weekends, trying to maintain two households. By then, she had two other children and wanted them to grow up on the ranch, not as city kids.
“When I look back on it I start getting tired just remembering,” Shultz said.
That’s when the family decided it was best for Peterson to live in a group home in Spokane, but it didn’t work. The girl returned to the ranch until the family found another group home in Spokane that cared for children with disabilities. That lasted about a year and was never a comfortable fit. The family finally found Merry Glen.
“It’s a wonderful, safe, secure home,” Schultz said. “Everyone is happy.”
She added that the caregivers treat Peterson and the other residents as family, not just patients. After all, she said, Merry Glen is a big family.
Schultz and her husband, Karl Peterson, who died of cancer in 1996, loved having Peterson on the ranch, but it was isolating for a young woman who wanted to complete her GED and socialize. In Addy, there was no bus, no freedom.
“She would have been a farmer if that was possible,” Schultz said. “But she wanted to go places and socialize.”
Roommates for 34 years
The big smile on Peterson’s face is proof of her admiration for Merry Glen. A large part of Peterson’s happiness is rooming with childhood best friend Juanita Hallam, 54.
Normally, Merry Glen residents have their own bedrooms, but the women insist on sharing. Schultz paid to have the room expanded by a couple feet to make that possible.
The room resembles a crammed college dormitory complete with posters and pictures. It’s organized so Peterson can move her chair and Hallam, who has spina bifida, can use her walker. The women complete each other – friend or caregiver seem like inadequate words to describe the relationship.
“She’s my hands,” Peterson said, struggling to tilt her head to look at Hallam with her blue, expressive eyes. Hallam smiles and nods, her hands working on a cross-stitch.
“She’s my best friend,” Hallam said.
Hallam feeds Peterson every meal, as she’s done for years. She used to help her friend get dressed and in and out of bed until a new condition affecting Peterson’s neck made that difficult.
Roommates for 34 years, the two women anticipate each other’s needs often without exchanging many words. When Peterson wants to demonstrate her computer, Hallam puts down her handiwork and turns on the computer, the one thing Peterson can’t do with her eyes or mouth.
Their room has a sliding glass door that opens into a fenced yard – the only such room at Merry Glen. In previous years, Hallam had a cat and Peterson a dog. The pictures of the animals are on the walls along with family members. They talk often about getting new pets, but Overlock isn’t convinced, although he seems close to giving in to Peterson’s pleading for a small, quiet lap dog.
Schultz considers Hallam another daughter and feels blessed Peterson has such a caring friend.
Also from the Colville Valley, Hallam doesn’t visit with her parents often because they both have health problems. Hallam is glad to have Peterson and her family.
Shultz said Merry Glen works because the parents and guardians have a voice; they aren’t turning their children over to someone else. She admits that the decisions aren’t always easy, and at times the board meetings are often intense.
“But everything always comes out for the betterment of the residents,” she said. “That’s been tested by fire.”
Lead photo credit: Karen Shultz, center, shares a laugh with her daughter Kellie Peterson, right, during a visit to Merry Glen on October 7, 2015. Merry Glen is a non-profit family cooperative designed to care for people with severe disabilities. (Kathy Plonka / The Spokesman-Review)