Gilroy
– For Maria Cabatingan, most days are a carefully orchestrated
series of errands and appointments, marked in three separate
calendars, one in her purse, one at home, and one at work.
Gilroy – For Maria Cabatingan, most days are a carefully orchestrated series of errands and appointments, marked in three separate calendars, one in her purse, one at home, and one at work. She shuttles her kids from one appointment to the next, choreographed from day to day between school and work. If she sits down, she says, she falls asleep.
Like any mother. But Maria’s son is not like any son. Thirteen-year-old Andrew lives with a neuromuscular degenerative disorder, Friedreich’s Ataxia, that plagues his muscles and dulls his sight. His mind is quick; his wit, sarcastic. But his muscle control and coordination is slipping, his balance is unstable, and his legs have weakened, confining him to a wheelchair.
Every morning, Maria dresses him and guides him through the morning routine: washing his face, brushing his teeth, combing his hair, and eating breakfast, before rushing Andrew to Anchorpoint Christian Academy and his sister to Pacific West Christian Academy.
As Maria describes it, she fumbles ‘combing’ and ‘brushing.’ Andrew giggles, and teases her.
“Brat,” Maria replies, smiling. “You’re turning into such a teenager!”
Like most teens, Andrew Cabatingan talks back, sometimes. He pokes at his mother’s speech, punning at her slips. He grins from the seat of his wheelchair, a million-dollar grin.
This week, he has a lot to grin about. Andrew, his 11-year-old sister Jessica, mother Maria and father Tony are headed to DisneyWorld today, care of the Make-a-Wish Foundation. For six days, Maria and Jose can forget the routine, the endless shuffling of doctors’ visit and therapy sessions. Andrew can lose himself in the whirling rides; his sister can stop worrying, too.
“It’s a break from the real world,” said Maria, “from a world of routines.”
Maria submitted her son’s name this summer, after learning of the program from an online support group. She didn’t know much about the foundation, but the stories other parents recounted were beautiful: fully-appointed birthday parties and bedroom makeovers, shopping sprees and trips to Hawaii.
The Make-a-Wish Foundation estimates that it grants a wish every 41 minutes, and Andrew’s minute came in November, when the foundation called to ask what he wanted. He offered one travel wish, and one non-travel wish, just in case his medical needs kept him from traveling. The first: DisneyWorld. The second: A Nintendo Wii. (Maria didn’t know what it was.)
Andrew adores roller coasters. The last time he rode one was in 2005, when Maria and Tony took him to Disneyland, before a major surgery. They worried he wouldn’t be able to do it after the operation. But the surgeon cleared him, and now he can ride anything, Maria says. His vision is dimming, slowly, and Maria wants him to go while he can still see the pastel castles and fantastic scenes: the pirates and genies, Mickey Mouse and the dwarves.
“We used to do more when he was still walking,” explained Maria. “But now, it can be uncomfortable for us to travel, and of course, financially … Well, there’s other things more important than travel. We couldn’t afford to go to DisneyWorld for that long, that far away.”
But thanks to the foundation, everything is taken care of. The airline tickets, hotel reservations, meals, even little things like tips and souvenirs, have been paid for. Last week, two Make-a-Wish volunteers arrived toting a bag full of goodies: a Pokemon storybook, crayons, a disposable camera, SpongeBob toys, a Birnbaum’s guide to DisneyWorld, and an album to put photos in, after the trip.
“It’s all so quick,” said Maria, “and so organized. I’m a little overwhelmed. All they asked me was when the doctor said it was okay to travel, and when would work for us.”
DisneyWorld is familiar with kids such as Andrew. In 2005, nearly 42 percent of Make-a-Wishes were for trips to Disney theme parks, and the park operates a wheelchair-friendly Give Kids The World resort, where the Cabatingans will stay this week, between trips to Epcot, Sea World and the Magic Kingdom. Andrew and Jessica have already plotted out the rides they’ll take, thanks to a promotional video the Make-a-Wish volunteers gave them.
“Designing a roller coaster,” explains Andrew. “There’s a small rocket ship, and it goes up and down and – whoo!”
Jessica elaborates. “It’s a little pod-shaped thing, and you get it, and it moves around, like the roller coaster you designed.”
“Really?” asks Maria.
“Yeah!” Andrew exclaims.
Maria smiles. “I’m just so impressed with Make-a-Wish. I wish I knew more about them.”
Andrew grins maniacally, and jokes, “Make that your wish!”
