In this issue, we talk about seating & mobility for very small children. Since we often hear that MM readers want the end-user’s perspective, I chatted with Deborah Davis, whose daughter, Rylee, has a genetic metabolic condition called nonketonic hyperglycinemia (NKH).
I heard of Deborah, a self-described firecracker from West Virginia, through Greg Allison at Dreamer Design. Deborah is such a huge fan of the company that she agreed to an interview in the midst of battling walking pneumonia.
What ensued was an hour in which Deborah described her family — including husband Aaron and oldest daughter Ryann — as “normal,” when in fact they’re remarkable…starting with Rylee. “When we brought Rylee home, the only option we were given, because of her prognosis, was hospice,” Deborah says of her almost 4-year-old. Rylee’s condition is so rare that little is known about it. “It’s not like I can go to the library to learn about it,” Deborah says. “They don’t know anything; Rylee’s teaching the doctors.”
Rylee didn’t wake up during her first year; her family called her Sleeping Beauty. Then she awoke: “They told us she would never even do that,” Deborah remembers, but Rylee now “turns her head and looks for us, and she snorts and does different sounds so we know what her needs are.” Today Rylee recognizes the voices of her family and has become a beautiful little girl with blue eyes and a rush of long curls. “She started to respond to pain in the last year,” Deborah says. “If you get that hair wrong, she screams bloody murder.”
The Davises lost Rylee’s little sister, Kaymaen, to NKH in 2006. That’s when Deborah first called Dreamer Design. “The very first thing I said,” Deborah recalls, “was ‘Please, whatever you do, don’t hang up on me. I’m desperate, I have to have something for my child!’ We had just lost Kaymaen, and I was just so beat-down emotionally from having lost a child and realizing how precious our time is with Rylee.”
But Deborah seems unable to stay beaten-down for very long. For instance, she says about Dreamer Design’s willingness to help, “They gave us back our life with our daughter. They stopped for a moment and remembered it’s not about the money, it’s not about the glory, it’s not about mass production. It’s about taking care of one child at a time, one need at a time.” Then she pauses. “Ooh,” she laughs at her quote. “That was good!”
Perhaps because they know life’s challenges firsthand, Aaron and Deborah do a lot of volunteer work. Deborah goes to the local hospital to support parents of special needs kids, even if the call comes in the middle of the night. “Rylee’s next tube feeding isn’t till 2 a.m.,” Deborah says, explaining why a midnight counseling visit isn’t a problem.
Deborah entertained me with a tale of making a Valentine’s Day gift for Aaron: Ryann contributed a painted handprint, but when Rylee couldn’t unclench her hands, Deborah carefully sat her in the paint to create a derriere print. Deborah told of raising funds last year to send two families on Make a Wish trips, and how the first annual resource fair for families with special needs, called Rylee’s Rally, was held last month at nearby Marshall University. But Deborah still denies her family is overly different.
“We’re still just a normal family,” she insists. “We’ve just been given an extraordinary circumstance to deal with. We still want to be normal. We shouldn’t have to sacrifice.”
Then Deborah grins again. “What is normal?” she muses. “It’s that thing on the dryer nobody uses. Everybody uses Fluff or Air Dry. What is normal? It’s all relative to each specific family….We’re not going to live a defeatist lifestyle. We’re still blessed.”
Exactly how I felt after meeting Deborah.