By Bill Petzold
MAYVILLE — Camping is all about “getting away from it all.”
But for campers at this week’s Trail’s Edge Camp, “getting away from it all” at The Fowler Center on Harmon Lake Road meant getting away from the stares. It meant getting away from people who don’t understand what it’s like to be the kid in the wheelchair with the breathing tube.
This week, kids in wheelchairs had the chance to be “normal” for a change, and sometimes that in itself can be a life-changing experience.
“It’s a magical place,” Trail’s Edge Camp director Mary Buschell said of the Fowler Center. “If you walk around a little bit you’ll feel it: There’s a definite magic here.
“From a practical point of view, (the Fowler Center has) the electricity, the barrier-free buildings. These aren’t the kind of kids you could go platform tenting with. Their whole life is spent with caregivers 24/7. So when they go to school, if you imagine first of all going to school in a chair with a (tracheostomy) with a ventilator and having to be suctioned, and add to that having a caregiver, how abnormal their childhood is.
“This is the only place on Earth where they are with true peers.”
Trail’s Edge Camp, a program of the University of Michigan’s C.S. Mott Children’s Hospital, was the first camp of its kind when it began in 1990. More than two decades later, the camp continues to give kids who are ventilator-dependent and medically fragile five days and five nights of real summer camp experience, all without being more than a moment away from a healthcare professional.
Andrew Brown, 18 of Fenton, can’t breathe without the help of a machine. But one thing he’s discovered he can do — and has a real knack for — is drill bullseyes with a crossbow.
“It’s kind of cool,” Brown said. “(The crossbow setup has) changed over the years. Now (the bowstring) can be pulled back using CO2, instead of being done manually, and you can aim it yourself. Once you get there, there’s a safety mechanism on it, so when they’re ready and you’re ready you can fire it on your own by just pushing a button.”
Andrew enjoyed his last week of camp this year. The camp is for kids ages 3-18, meaning Andrew is the newest “graduate” of the program. He said he’ll miss the friends he’s made, but he hopes to keep in contact with them all on Facebook.
Another thing he’ll miss is the Fowler Center’s boundary-free, completely accessible environment. For people who rely on chairs to get around, the Center’s chair-friendly buildings and pathways are a little slice of heaven.
“It’s great,” Brown said. “Nice open sidewalks, especially for chairs. I mean, you can get more than one chair on the sidewalks.”
And campers put those sidewalks to good use, with highly competitive wheelchair races planned for Thursday afternoon.
All events planned for the week are geared toward the campers’ abilities, so that every camper can participate in any activity they choose. Once they’re no longer sitting on the sidelines, kids get to interact, compete and grow as people.
“It’s remarkable,” Buschell said. “We’ve watched their growth, like Andrew, from a kid who missed his mom … and wouldn’t interact with anybody to this wonderful young man who is so proud of his accomplishments with the crossbow.
“They’re very intelligent kids, and they do very well in school because they have long periods of time to study. They develop attention spans that are way longer than the average kid because they have to, because it’s waiting for care, and then it’s waiting to get moved into the chair, and then it’s waiting to get the van (lift) down. Every other kid has already been there, done that and is back, and these kids are waiting to get on the van to go. So these kids are very intelligent, they do very well in school and there’s a lot of things they can do.”
While girls that attend the camp tend to flock to the horses at the Fowler Center, the crossbow is a big hit with the boys.
“It’s adapted so that any kid … some of our kids that can’t move their fingers, they can trigger it with their mouth sticks,” Buschell said. “They set (the string), they set the sights completely on their own. I mean, that feeling of power for these boys — it’s huge.”
Years ago, it would have been risky and nearly impossible to take kids who require 24-hour medical attention and equipment like wheelchairs and ventilators that need to be recharged nightly on a five-day camping trip. But the Fowler Center and volunteers from Trail’s Edge Camp have taken all precautions necessary to deal with emergencies and the often arduous medical routines that campers deal with every day. The camp staffs three volunteer medical professionals for each camper in the event of an emergency. Typical camp bunks are outfitted with all the crucial medical equipment campers need each night. Having a constant supply of electricity also is mandatory. This year, Trail’s Edge rented a generator to ensure that when the power goes out, the campers’ ventilators continue pumping and the chairs and portable ventilators continue charging. Without a fully charged ventilator, there’s no way the kids could get back home, because they need it for the ride.
“It’s just intensive therapy that they have to have continuously … and we just turn it into a part of the day,” Buschell said. “And it’s another way the kids have this huge commonality, that it takes them two hours to get up in the morning.
“For a new camper it’s huge. We had the most new campers this year, probably ever. It’s great to see them look around and realize that they’re not alone, that they share this experience with a lot of people.”
For information about the Fowler Center or to make a donation, visit www.thefowlercenter.org. Information about Trail’s Edge Camp may be found at www.umich.edu/~tecamp/.
Bill Petzold is a staff writer for the Tuscola County Advertiser. You may contact him at [email protected]
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