Chad Bautch named his 38th birthday. He called it Average Day. And when Average Day dawned, it did look like another oh-so-normal notch on the way to 40.
His eldest son had Boy Scouts, so his wife carted him there. Chad loaded up the 3-year-old twins and drove over to friends of the family. He ate a slice of cake as the kids played in the living room. He went home early.
It was average. It was also amazing.
“It was a celebration of the idea that I became average,” Chad says. “It was a celebration of the fact that I'm going to outlive the average.”
Chad just turned 38. He has a family he loves and a job he likes.
Every night after work, he straps on a vest that vibrates and loosens the mucus trapped in his lungs. He puts on a mask connected to a machine that mists a variety of drugs into his closing airways. He watches cartoons with his kids as the vest and the drugs work together to keep him out of the hospital. To give him more time.
Chad Bautch, 38, is living with cystic fibrosis. The average life expectancy of an American with cystic fibrosis: 38.
So now he is average. And he is decidedly not average.
“I'm fully aware that cystic fibrosis is going to kill me,” he says. “I'm trying to embrace it in some way. I'm trying to wake up and say, 'Hey, I get another day.' ”
If you met Chad, you would most likely assume he has a little cold. A nagging cough.
You would not assume that, every time he takes a breath, it feels as though he's inhaling and exhaling through a skinny straw.
You would not assume that any virus — something as simple as the stomach flu — is Chad's ticket to a hospital stay. Since his junior year in high school, he's been hospitalized about 10 times.
You would not know that he was 3 the first time his worried parents took him to a specialist. The University of Nebraska Medical Center doctor diagnosed cystic fibrosis and then delivered the bad news: Chad will be very lucky to live to 14 years old, he said. More likely, he will die by 12.
It was 1978. Then, the life expectancy of a cystic fibrosis patient was a dozen years, give or take a few.
For Chad, almost every day since then has been a race against his own lungs, a race against his collapsing mortality.
On one side is the disease: Cystic fibrosis is a genetic abnormality that causes mucus buildup in the airways, affecting the lungs and eventually other internal organs. It is chronic. There is no known cure.
But on the other side stand both Chad and modern medicine.
Since he was young, Chad has worked to keep his lungs as healthy as possible. He played tag with the other grade-schoolers. He played tennis at Lincoln Northeast High School. Now he wakes up at 5 a.m. so he can walk on a treadmill or swim laps before he goes to Boys Town, where he works as the information coordinator for the Boys Town National Hotline.
This Saturday, Chad will get up early and go walking at Aksarben Village's Stinson Park. He's hoping you join him.
It's the Cystic Fibrosis Foundation's annual Great Strides one-mile walk. Chad is the captain of Team Chad Bautch. His team raised $12,289 last year. He's hoping to raise $15,000 this year.
He talked Chipotle into giving each of his team members a free burrito. He persuaded friends and neighbors to donate their old stuff to a garage sale, with all proceeds going to cystic fibrosis research.
“I'm the sort of guy who loves to meet new people,” Chad says. “And I have no problem going up to new people and asking them for money.”
At work, Chad is the guy who buys lunch if he finds $20 hidden in his wallet and the one who offers to help if a co-worker needs a lift or a favor. He's the guy who jokes that people sometimes get bent out of shape that the cystic fibrosis fundraiser isn't a longer walk or a run.
“Come on guys, we're all dying from lung diseases here, take it easy on us,” he says.
At home, he spends roughly a half-hour each morning and another hour each evening taking treatments that pump medicine through his mouth and into his lungs.
Most of the drugs, as well as the vibrating vest that loosens the mucus in his airways, are recent innovations sparked by research partly funded by the Cystic Fibrosis Foundation.
The vest has replaced the old loosening method: When Chad was a boy, his mother used to lay him on a pillow and bang on his chest, back and sides with her cupped palm.
The drugs, especially Pulmozyme, which helps remoisturize the lungs, have added quality years to the lives of Chad and many others.
In the 1950s, most Americans born with cystic fibrosis died before they could attend school. Today, roughly half of all cystic fibrosis patients are old enough to vote, according to the Cystic Fibrosis Foundation.
Chad and Heidi, who got married in 1996, agreed for years that they wouldn't have children. Partly that's because most cystic fibrosis patients are infertile. But mostly there was this unspoken truth: Chad didn't want to leave his bride a single mom with young children.
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As Chad stayed relatively healthy, they changed their minds and turned to in-vitro fertilization.
Carter is 11, and it was long Chad's goal to see him graduate from high school.
Now he has passed the 38-year milestone. Now the couple have 3-year-old twins, Millie and Landon.
Now Chad has bigger goals. Longer ones.
He's going with Carter on a Boy Scout hiking trip in the Rocky Mountains next year. “I'll figure it out,” he says. “The dads need to be there.”
And he's going to be there to walk Millie down the aisle.
She's not getting married as a teenager, her dad says, which means he's going to have to stick around for two decades at least.
Fifty-eight. That would be above average.
“Thirty-eight is a nice milestone, but I've got much bigger aspirations,” he says. “I'm going to outlive average. I'm going to create a thousand memories with my kids.”
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