On a rainy Saturday in June, two of Tracy Streblow’s sisters and a niece arrived at her home on Gentry Street in El Dorado to celebrate her 45th birthday. Tracy’s housemates and staff members were also present. Entertainment included typical birthday party activities: singing to the guest of honor, eating birthday cake, opening gifts, looking at and taking photos, and reminiscing.
Her sisters – Sandy Davidson of Chanute and Pam Dunn of Wichita – have lots of memories of Tracy’s early years when she lived with the family.
Tracy was born on June 26, 1964, in Iowa and lived at home until she was eight years old. Although she had cerebral palsy, epilepsy and mental retardation, according to her records, Tracy participated in family activities and attended special education classes in the mornings.
“When she was a little girl, she had seizures about once a month,” Pam recalled. “Her right side was shorter so she limped, and her hand was curled up tight. Sometimes she was very emotional. She always struggled, but I remember the good times and her sense of humor. She was so funny.
“In spite of her handicaps, she was brave and would try anything,” Pam said. She remembered, for example, teaching Tracy how to dive into the water and dog paddle back to the side of the pool.
“We had a wonderful growing-up time,” agreed Sandy, who serves as her guardian. “Our dad was a minister, and Tracy was an awesome singer. When she was five or six years old, she sang ‘He Touched Me,’ and the whole church was weeping.”
“She sang from the heart, even though she couldn’t enunciate clearly and exaggerated some words,” Pam said. “She did her best and loved to sing. We still have tapes of her singing.”
Tracy’s childhood nickname was Taterbug, and the family still calls her that. (Tracy’s other sisters live in Missouri and Indiana, a brother lives in Chanute, and her father lives in Springfield, Mo.)
Pam remembers clearly that Tracy wanted a maxi dress and a Mrs. Beasley doll for her eighth birthday. When her birthday arrived and so did those gifts, Tracy was a happy girl.
But just a few days later, over the July 4th weekend, Tracy became covered with mosquito bites. Pam remembers that her sister woke up that night with a very high fever and convulsions that wouldn’t stop. That led to Tracy spending nearly six months in hospitals in Chanute and Kansas City. Pam and Sandy remember there was lots of speculation about what caused the drastic changes in Tracy – was it the high fever, an infection, perhaps overmedication?
“Maybe a virus triggered everything,” Pam said. “Her body was already at risk.”
Tracy never did live at home again. In late December 1972, she was admitted to Winfield State Hospital & Training Center and resided there for about 25 years until the hospital closed. Among the first residents to move to a Creative Community Living home, she has resided at the Gentry Street location in El Dorado since March 1997. The smaller, calmer setting with more individual attention seems to have had a positive effect on Tracy.
“She enjoys watching old movies and TV shows, spending time with her friends, and visually stimulating situations such as fish swimming in a tank or decorative lighting like on Christmas trees and party lights,” said Laura Koehn, her case manager.
“Staff members read books and magazines to Tracy several times a week, and she seems to enjoy that – probably because it’s relaxing for her,” Laura said. “They write monthly letters to her family for Tracy, letting them know what she has been doing. Sometimes she receives a response.”
If it isn’t too hot, Tracy enjoys excursions to Botanica, museums, the Sedgwick County Zoo and other community places and events.
“Tracy especially enjoys music-related activities,” Laura said. “She’s been to a lot of concerts – Martina McBride’s, for instance, and Keith Urban’s concert in Wichita on July 10. ‘Wizard of Oz’ is one of the shows she has seen at Music Theatre of Wichita.”
Although nonverbal, Tracy lets others know if she likes something.
“She smiles and pay attention to things she enjoys,” Laura explained. “If she’s not interested, she appears to be sleeping.”
If Tracy whimpers or cries, it probably means one of two things.
“If she’s uncomfortable, it’s usually from the heat or from cramps,” said Melissa Wright, who has provided direct care for Tracy and the other women at Gentry for almost four years. “If it’s hot, we have some ice packs to put on her to cool her down. Or we turn the fan on her.”
Tracy continues to startle easily, but less than during her years at the state hospital.
“Her (home) environment now is quieter,” Laura said. “It’s also important that staff members approach her in a gentle way and explain to her what’s going to happen before it does. They might say ‘We’re getting ready to go shopping, so may I help you put on your coat and gloves?’”
Tracy’s nutrition has been received through a gastrostomy tube for the past 30 years.
About a year and a half ago, she got a new wheelchair that gives her a more upright position. With it, she is “more alert and looks more comfortable,” said Sandy, her sister. “It’s easier to push her around in this wheelchair.”
Staff members continually make sure Tracy is positioned carefully and correctly.
“The wheelchair seat and back are molded to fit her body,” Laura said. “It takes special training and practice for the staff to help her get seated properly. When out of her wheelchair, Tracy must also be positioned carefully because of the severe scoliosis in her back. She wears a lap belt when in her recliner, because her high muscle tone allows her to push herself out of the recliner if she is having a spasm. We got the belt to keep her safe.”
Physical therapy aide Krista Busse goes to Gentry or meets Tracy at the day center five days a week. For 35 to 45 minutes each time, she works with Tracy to stretch her leg muscles and her upper body extremities. She, too, credits Tracy’s new wheelchair with making her life better.
“She seems to be more comfortable in this wheelchair,” Krista said. “There’s probably less pain, and she seems to be awake more and alert.”
Tracy’s sister thinks her current environment has made a big difference in Tracy’s life.
“She’s more relaxed, and she responds to the staff because she knows their voices,” Sandy said. “I think Tracy has a great quality of life. She attends many community events and has other opportunities that she might not have somewhere else. Even if she were in Chanute, our hometown, there wouldn’t be so many things to do.”
Sarah Emrick, CCL’s deputy executive director and a former Winfield State Hospital staff member, has known Tracy for at least 20 years.
“Since Tracy has had the opportunity to be in her own home in the community, I just see her as having blossomed,” Sarah said. “She seems to be comfortable in her surroundings and more aware of those around her.
“It’s been evident that even as her caregivers have changed through the years, they’ve connected with her and helped her have opportunities and experiences that she wouldn’t have had in a hospital setting. One big difference is the ratio of clients to staff.
“I believe Tracy knows these people care about her and help her enjoy life to the fullest,” Sarah said. “There’s more of a brightness in her eyes and in her face.”
Ethel Gates, CCL’s director of nursing and a longtime nurse at the state hospital, agreed.
“Tracy is another example of how individuals have blossomed in a smaller setting with more individual attention, more opportunities to experience life,” she said. “Some of the things most of us take for granted – like going to the movies, concerts and shopping, and having your own room – have all been new experiences for them.”