The spa, the snow, and the Make-A-Wish gift that keeps giving
My daughter spurned Mickey Mouse in favor of a swim spa. Good choice.
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Winter seems to be over at last here in New Jersey. Rats. Abby and I never did get to go swimming in the snow.
Twelve years ago, my wife, Donna, and I realized that our daughter Abby, who has Rett syndrome, was a year away from turning 18, which is the upper limit for requests to Make-A-Wish, the nonprofit organization that grants wishes for children with critical medical conditions. So we began asking her if she would like to make a wish.
Abby is nonverbal and doesn’t reliably use electronic communication devices, but she can make choices using pictures. We began showing her images of various possibilities. She pretty clearly rejected Mickey Mouse — she wasn’t interested in what is the go-to wish for many families, a trip to Disney World. That was fine with us, since A) she’d already been to Disney World, and B) we were wary of any experience pegged to a specific day or weekend. Abby has good days and bad days. Make-A-Wish is a one-shot deal, so if she happened to be having bad days on the days earmarked for Disney World, she would have wasted her wish.
Abby, like many with Rett syndrome, always liked a pool when we’d had the chance to put her in one. We think it’s because the buoyancy provided by the water eases the strain of dystonia, scoliosis, and other nasty effects of the condition. When we asked her about Make-A-Wish, she kept returning to a picture of a pool. Of course! And we thought, what about a pool she could use all year?
Our outdoor pool
So in September 2014, a truck carrying a 7.5-by-13-foot Aquafit swim spa pulled up to our house, accompanied by a giant crane, which hoisted the spa over the roof and into the backyard while half the neighborhood looked on.
In the years since, Abby and I have been in that spa practically every day the weather allowed. And that includes wintertime. Although the spa is outdoors, we leave it on all winter at 95 F. It’s murder on the electric bill, but it’s worth it because it gives Abby a chance to exercise during the couch-potato months. And sometimes, when just the right kind of snowstorm comes along — gentle, not too windy, air temperature at 30 F or so — we’ll swim while snowflakes fall around and on us.
I love those snow swims because I think Abby knows when she’s doing something really unusual and stores away the memory. Alas, although we had some snowstorms this past winter, they were the nasty, icy variety, not suitable for going in the spa. Maybe next year.
Abby and her dad, Neil Genzlinger, swim in the snow in January 2017. (Photo by Donna Genzlinger)
Our spa sessions usually last an hour. The spa is 4 feet deep, but Abby doesn’t really swim in it; she spends the time walking against the current provided by the spa’s jets. I believe this exercise has helped keep Abby walking, whereas many with Rett syndrome are in wheelchairs. That makes the swim spa the greatest gift our family has ever received.
Twelve years ago, the staff members at New Jersey’s Make-A-Wish chapter were excited by Abby’s request, since it was so different from the theme park trips they so often arranged. Today, though, swim spas are on the list of wishes the organization doesn’t grant. A spokeswoman for the New Jersey chapter told me this is because the organization wants to make sure the same wishes are available everywhere it operates, and it doesn’t have swim spa vendors in some places.
In any case, we tell anyone who asks about Make-A-Wish to consider something that will keep on giving for years. The New Jersey chapter’s “Our Stories” webpage has assorted examples — a camper for a kid whose medical condition prevents him from flying, a sidecar that lets a boy ride with his motorcyclist dad. Certainly, Abby’s request all those years ago to swim rather than visit a theme park or have a meet-and-greet with some celebrity has been a home run.
We do, however, have one complaint: The spa has turned Abby into a pool snob. After swimming in 95 F water for a dozen years, she won’t stick more than a toe into hotel pools — even heated ones — that she once enjoyed. A lake or the ocean? “Are you kidding me?” her look says.
As the person who has been at her side for hundreds of spa sessions, I can’t say I blame her.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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