Kylee Dirks, 13, feeds her father, Kelly Dirks, through his feeding tube in their home in Runnells last week.
Kylee Dirks, 13, feeds her father, Kelly Dirks, through his feeding tube in their home in Runnells last week.

Editor’s note: This is part one of a two-part series about a family of Carroll-area natives living with ALS.

Thirteen-year-old Kylee Dirks kneels on the carpet next to her dad, Kelly Dirks, and grasps an oversized syringe.

She painstakingly inserts a liquid mixture of protein and vegetables into Kelly’s feeding tube, contorting her face in concentration as she feeds her dad dinner.

Behind them is one of Kylee’s school art projects, a heart made of crayons with colors that bleed together, all surrounding the words “Family Forever.”

Kylee jokingly wrinkles her nose at the food’s stale, unappetizing smell. Then something slips, and the tan-colored liquid sprays, landing on the arm of the couch and Kelly’s lap.

“Oops,” Kylee says. “Sorry, bud.”

The drawn lines in Kelly’s serious face relax for a moment, and he cracks up.

During the past three years since he was diagnosed with amyotrophic lateral sclerosis or ALS, Kelly, 50, has lost most of the use of his hands and arms. He uses a wheelchair most of the time, can no longer dress himself and needs help getting to the bathroom.

ALS, or Lou Gehrig’s disease, is slowly paralyzing the muscles that let Kelly move, eat, speak and breathe. It causes the connections between brain and muscle to wither away.

And during the three years since Kelly’s diagnosis, his little girl has had to shoulder some of the extra responsibilities of caring for him. She’s pushed her dad’s wheelchair, held his drink for him and tube-fed him.

But Kylee is still a teenager who needs her dad, too. It’s tough to play softball and volleyball without him watching from the stands.

Holding the syringe, Kylee looks over to her mom, Jodi Trimble Dirks.

“Do you want to finish this?” the teen asks. “This is getting very boring.”

And her parents laugh, because that’s Kylee. She injects humor into even the most difficult moments.

During the past three years, Kelly’s family has watched as his health has worsened. They’ve reluctantly acknowledged the impossible thought of losing him.

But he’s losing them, too.

 

WHERE IT BEGAN

Three years ago, Kelly, who grew up in Vail and graduated from Ar-We-Va in 1985, was a different person.

For years he’d traveled extensively for work for a company that purchases used textbooks from schools and resells them.

In April of 2014, on a trip home from Kansas City, he noticed his middle fingers cramping up on the steering wheel.

He shook out his hands and continued driving. Summer was his busy season. Going to the doctor could wait until the fall.

But the fingers kept troubling him. And before fall, it was his wrist, too.

Picking up his laptop became an arduous task. He almost sent a golf club sailing during a practice swing one day because it was so difficult to keep a tight grip.

Something was wrong.

A visit to his doctor led to a referral to an orthopedic hand specialist, then a neurologist. Then another.

They started talking about ALS, a disease that still has so many unanswered questions, even as it slashes someone’s ability to walk, eat, speak and, eventually, breathe.

ALS isn’t simple to diagnose — rather, it involves ruling out other, similar diseases.

If it were possible to definitively diagnose the disease? Kelly isn’t sure he’d do it.

Knowing for sure makes the end seem more final, more inescapable.

But in fall of 2014, two doctors agreed: Kelly had ALS.

“There’s some denial,” Kelly said.

He paused, struggled to speak.

“There’s some ‘Why me?’ ”

 

'YOU WISH FOR MORE TIME'

Before his fingers and wrists started cramping — when he could still hold a steering wheel — Kelly made a daily trek with Kylee to the end of their lane to wait for her school bus.

There they sat in the family minivan and talked about school and sports and life.

They would listen to tunes. Kylee would sing and Kelly would smile.

But no more. Kelly can’t talk about that loss without tears.

“That’s been rough,” he said. “That was our time.”

Kelly’s world is different now. He watches his wife and kids continue to move forward with their lives, while his slows down.

For a full year after his diagnosis in 2014, he was able to continue traveling and buying used textbooks.

Soon, it was more important to be with his family: wife Jodi and kids Zack, 20, Christian, 17, and Kylee, 13.

“The first year, it was hard to get used to not working,” Kelly said. “The kids were at school, my wife was working, and I’m —”

He broke off.

He’s at home, able to do less and less.

Doctors use a rating scale to analyze Kelly’s ability to speak, swallow, breathe, walk, write, feed and dress himself. Kelly recently scored 21 out of 48. The higher the score, the more functional a person.

He is approaching the point when doctors might consider inserting a tracheostomy tube into the base of his neck to help him breathe.

Kelly’s family has talked about what happens next, a bit. He wants to be cremated, with his ashes spread in Hawaii. He’d like to be an organ donor.

They try not to dwell on it.

But when Kelly spends long hours alone at home, sometimes the thoughts intrude.

It’s hard for him to picture his family without him.

It’s hard to talk about it.

He imagines his wife moving on — remarrying perhaps — and his kids growing up and raising families of their own.

He wants them to be happy without him.

Since his diagnosis, Kelly and his family have taken cruises to Belize, Honduras and Cozumel. They’ve traveled to New York City and Hawaii.

They’ve spent a lot of time together at home.

“I’m OK with where I’m at and what I’ve done,” Kelly said. “I don’t want to do any more big trips; there are no big bucket list items.”

He trailed off.

“Obviously, you want to see your kids grow up,” he said. “You wish for more time.”

For a moment, he couldn’t speak.

“Yeah,” he said. “You take it day by day.”

He knows what happens next. He’s seen it happen to friends with ALS he’s met since his diagnosis.

He knows that at some point down the road, maybe soon, his family might gather around him and hold his hand as he is lying down, staring at the ceiling, unable to move, talk, breathe.

He hopes they can let him go.

The diagnosis has been called a 1,000-day death sentence, although some live longer than that after learning they have the condition.

Kelly might have two years, doctors said. Maybe five.

It’s been three.

Read Part 2 of this series here.