When Kyla Guyton passed away in her sleep a week ago Monday, she didn't die without friends. She had her Lunch Pals.
Kyla's life of 14 years was significantly more complicated than most because she had Cerebral Palsy, caused by oxygen deprivation at birth. She was confined to a specialized "tilt in space" wheelchair, which ranges from recline to upright, during her waking hours, and she had to be tube fed. She couldn't talk. Couldn't do much of anything, really.
But when she died, before it could even be announced at school, Kyla's mother, Crystal, started receiving phone calls of condolence from students at Holmes School. A good number showed up for the funeral Jan. 29 as well.
Most were participants in the Lunch Pals program, started last year by Mary Jo Kuhr, Kyla's teacher in the intermediate level special ed class. "We wanted to start something like the Best Buddies program [at OPRF High School], but at this age it wasn't practical," she said.
Lunch Pals takes place during lunch period each day, noon to 1 p.m., usually two days a week, sometimes more, sometimes less. "It depends on the weather," Kuhr said. Anywhere from 12 to 15 kids show up. They eat lunch together, then play cards, board games, do art projects, even dance (one day they did the Limbo) and occasionally go outside. Even though Kuhr's four students can't help out much, their pals involve them any way they can.
"Our motto here is 'Act as if,'" said Kuhr.
The program has exceeded her expectations. Not only have the visiting students bonded, but they talk to their friends about it, so even kids who don't attend the program know the names of Kuhr's students and greet them in the hall. Parents call and tell her how much their children get from the interaction. One noted that the names of Kuhr's students have found their way into nightly prayers.
Kuhr thinks the higher functioning kids get so much out of it because her students, even though they may not be able to communicate verbally, are always ready to respond.
"They're so glad to see you," Kuhr said. "It's really a happy place."
Kuhr gets a lot out of it, too. After her own kids attended Holmes, she started volunteering in the library, followed by subbing, then took the full-time special ed position when it opened.
"It's the perfect job for me," she said. "People say, 'Your job is so hard.' But every day is fun. It's very laid back." She and her assistants (two in the morning, three in the afternoon) do their best to keep students mentally stimulated.
"We work low, then high," Kuhr said. "You don't know how high functioning they could be." She reads teen novels to them, "just in case."
"They're trapped in a body that won't let them communicate," she said. "Each one is more adorable than the next. They're good people. They're not babies. They give a lot back."
Which may explain the response of students at Holmes School to Kyla's death. Kuhr put Kyla's photo on her locker and dangled paper hearts from twine. Students were encouraged to write their memories on the hearts.
Angel with broken wings
Crystal Guyton said her daughter enjoyed the program at Holmes, which she attended for approximately seven years. They took her out into the community?#34;to the malls, ice cream shops, parks, pumpkin farms, etc. Kyla loved being outside, she said, and Holmes has a special needs playground that allows kids like hers to use the equipment in their wheelchairs. During school hours, they worked with computers, helped with cooking and laundry, went to the gym and had occupational and physical therapy.
Crystal said her daughter was "happy most of the time. She might not communicate as we know it, but she made her needs known through gestures, sounds. We knew when she was happy and unhappy."
Kyla loved one-on-one attention, loved to be held, and loved to hold her infant nephew who would ride with her in the chair.
She and her husband, Lawrence, knew their daughter might not live a long life, but her death was still a surprise.
"God sent us an angel with broken wings," she said. "When they were mended and fixed, she flew home."
By "mended," she means loved, in the form of "14 years of care and comfort." It wasn't easy. As an occupational therapist herself, Crystal said that coming home at night was like being on the job again?#34;the treatments, the late-night hospital visits, the surgeries (a major spinal surgery was scheduled for February).
"It becomes part of your normal life," she said. "You deal with it. She is flesh of our flesh, blood of our blood. We didn't try to hide her or feel embarrassed. We didn't think about her differently. We learned to speak her language."
Faith is a big help, Crystal said. She belongs to Garfield Park Baptist Church and her husband is a deacon at Central Memorial Baptist Church (where the funeral was held), both on Chicago's West Side.
To other parents who find themselves caring for a child with limitations, she gives this advice:
"Just hold on. Love them unconditionally, the way God loves us. They were given to you for a reason. There's nothing wrong with being frustrated. You're human. When you get frustrated, walk away. Then come back.
"You have to change your life to fit your child. Hold your head up. You can make it. We did it for 14 years. Love them as if each day is the last."
Family support, she said, is essential.
One might expect a sense of relief when a child so disabled dies, but that isn't the case. Crystal only shakes her head at all the time they suddenly have on their hands, the hole Kyla left.
"The rewards," she said, "were great?#34;just having her here with us."
In addition to her parents, Kyla Guyton is survived by her older brother, Kareem; her nephew, Kareem Jr.; her grandmothers, June Coleman and Nequila Guyton; a host of aunts, uncles, and cousins; her caregivers, Betty Oliver, Qiana Coleman, Beverly Coleman, Hazel Grayson, and Sarah Shelby-Glenn; and, of course, her lunch pals at Holmes School.