THOMAS — Four-year-old Taylor VanOrden’s parents say he doesn’t usually take to strangers very quickly.
Taylor was sitting on the couch of the living room at Jeff and Lyndsey VanOrden’s home Friday afternoon, munching Goldfish crackers from a bowl.
Maybe it was from seeing him days before during a photo opportunity when the VanOrdens were presented with a check from proceeds raised from the Wolverine Canyon Marathon to help with Taylor’s medical costs, or maybe it was from telling Taylor that this stranger in his home liked Goldfish crackers too, but his parents said he warmed up quickly.
A short while into interviewing his parents, he showed how much he’d warmed up by coming upstairs in a green and blue “I See You” tunnel, showing his face through the opening with his light blonde hair and his eyes shining, smiling wide.
“He doesn’t usually do that with people he doesn’t know,” Lyndsey said.
Taylor’s parents have to be careful when it comes to introducing strangers in the home. Taylor was diagnosed with cystic fibrosis (CF) two days after he was born, and germs are a huge risk to his delicate lungs and digestive system.
It’s something that’s always in the back of their mind when Taylor’s siblings — Emma, 9, and Tommy, 7 — return home from school each day.
“We are germaphobes,” Jeff admits.
There are 30,000 people in the United States with CF, Lyndsey says. One in 30 people are carriers, and many may not even know it because it’s called an “invisible disease” with little in the way of outward symptoms. It shortens life expectancy, although there’s been great strides in improving on that — with life spans going from 18 to 34, with some CF “fighters” in the area getting into their 40s. Frannie Baumgartner and Jamie Warren have both been helped by lung transplants.
Frannie lost her sister, Julia, to CF at an all-too-young age in adulthood.
Taylor’s signs started showing when he threw up greenish mucus and hadn’t had a bowel movement in his first 36 hours.
Lyndsey said she was in denial at first after finding out what was afflicting her newborn son.
With a blockage in Taylor’s small intestine, surgeons at first were thinking surgery was needed. But one doctor advised giving time to work itself out, which it did.
“The hard thing was the uncertainty,” Jeff said. “We were never so happy for a bowel movement in our lives.”
CF affects the pancreas, so Taylor has had to take prescription enzymes for that his entire life. It affects the lungs with the thick mucus that forms. Most of his 13 daily maintenance medications along with a percussion vest he must use twice a day are for his lungs. He’s gotten good at putting on and connecting the vest. When it’s turned on, it pounds away as it shakes his upper body.
Taylor doesn’t seem to mind. He laughs when he turns it on. He likes to sing when it’s on, so he can hear his voice through the pounding.
It feels “kinda funny,” he says.
Medications and relieving his lungs are all he’s ever known.
“The first two years were the hardest,” Lyndsey said. “It was so hands-on. There’s still a lot of hands-on, but it’s amazing what a 4-year-old can do when that’s all he’s known.”
The family’s world for the most part revolves around the “CF World.” When they go out of town, they have to think ahead about enzymes needed to keep his calorie count up, aside from germs. Taylor needs to maintain a diet with 1,700 calories a day, and sometimes he doesn’t want to eat.
He needs to eat more just to keep up his growth, and he needs to be given enzymes every time he eats.
“He’s a very strong-willed boy,” Jeff said. “But that’s the exact personality he needs to fight this. He’s a fighter, yet he’s very tender-hearted and compassionate.”
Even a fighter can have their down moments. There was a time during the interview when Taylor was upstairs and the word “treatment” was mentioned. He uttered a sound and ran downstairs because he thought it was time for another treatment.
“It can be hard for him, especially when his siblings don’t have it,” Lyndsey said.
She has gone from being in early denial to being a fighter herself, being heavily involved in a CF advisory board.
“When you’re told there’s a 50 percent chance of him making it into his 40s, that’s pretty tough to hear,” Jeff said.
“We’re fighting daily to keep him healthy,” Lyndsey said. “It was very overwhelming the first two years. Now, we try to treat him as normally as we can. We’ve got to let him live as normally as he can.”
His parents can spend up to two hours a day caring for his needs with CF when he’s on the healthy side.
“Jeff said something very early on (after the diagnosis) that’s really true,” Lyndsey said. “”You don’t pick your battles, but you pick how you fight them.
“We’ve learned a lot, and we’re still learning. It’s been a huge blessing to have Taylor in our home. He’s brought our family closer together. He’s shown us what was really important.”
That, his parents say, is what defines Taylor. When asked for other characteristics that come to mind, their list goes on.
Learning to trust people.
“I told his doctors early on that they really need to get close to him and get to know him, because he will be around them much more than he will a lot of his own relatives,” Lyndsey said.
“He’s the craziest combination of shy and outgoing I’ve ever seen,” Jeff added. “He’s a handful. The thing is, you never know what’s going on inside him.”
That part of him comes from the “invisible disease.”
“CF might be the center of our lives, but it doesn’t define who Taylor is,” Lyndsey said.