Twins Kevin (left) and Kelly Dirks watch Iowa State University lose to Texas in Kelly’s home in Runnells recently.
Twins Kevin (left) and Kelly Dirks watch Iowa State University lose to Texas in Kelly’s home in Runnells recently.

Editor’s note: This is part two of a two-part series about a family of Carroll-area natives living with ALS. Read Part 1 of this series here

Kelly Dirks can still walk to his wheelchair, for now.

When he exits his house near Des Moines last week, heading for the electric wheelchair that’s stored in the garage, his twin, Kevin Dirks, is there.

Kelly slowly lowers himself into the chair, waiting for his bigger, burlier brother to lift his hand to the chair’s arm so that he can work the controls. The slim man wears a white shirt with red lettering: “The time is now: Walk to defeat ALS.”

Kevin has the day off from his job as a mailman in Carroll, so the 50-year-old twins are spending the day together.

Three years ago, Kelly, who grew up in Vail and graduated from Ar-We-Va alongside Kevin in 1985, was diagnosed with ALS, or Lou Gehrig’s disease, a terminal illness that causes the connections between brain and muscle to wither away.

Many don’t make it three years after being diagnosed.

Kelly and Kevin have six other siblings: Gale, 54, who lives in Vail; Donna, 52, in Buck Grove; Paula, 49, in Big Pine, California; Donny, 47, in Lake View; Amy, 45, in Omaha; and Katie, 43, who lives near Westside. They’re spending a lot of time in Runnells these days, too.

Their parents were Donald and Alice Dirks. Alice died from breast cancer when she was 51, the age the twins will turn in December. Donald died years later.

They don’t know how much time Kelly has left. Kevin, gruff and irreverent, doesn’t like to talk about it.

They joke around instead.

“Kelly has mastered sitting on the couch,” Kevin said. “He’s got that shit down.”

“I’d rather be somewhere else,” Kelly said.

“I know you would.”

The twins return to the house a bit later, back to the couch. It’s the same routine: Kelly leaves the wheelchair in the garage and slowly makes his way up the ramp leading back into the house.

Going up is harder. Kevin grabs his brother’s arm.

“You got me?” Kelly asks.

“I’ve got you.”

He doesn’t want to let go.

 

'NOT ENOUGH TIME'

Three years after Kelly’s diagnosis, his physical condition is markedly different.

So are his days with his family: wife Jodi Trimble Dirks, who grew up in Carroll, and their kids, Zack, 20, Christian, 17, and Kylee, 13.

Friends and neighbors clean his house around him.

He misses a lot of his kids’ sports games and school events.

He can’t hold his wife, or hug his kids back.

Every day, including on the most special days, the disease intrudes.

The confirmation of Kelly’s diagnosis came on his 22nd wedding anniversary.

This summer, on Jodi’s 49th birthday, Kelly collapsed while Jodi was helping him get ready for bed. He spent that night in the hospital.

On their 25th anniversary last week, Jodi had to work all day, and then their daughter had volleyball. Kelly wasn’t able to go.

When they got home that evening, the family ordered pizza and watched the season premiere of “This Is Us,” a show about mixed families, adoption and forgiveness that includes its share of heartbreak.

Now that every day is precious, even simplicity is memorable.

“Something that I have learned in the past three years is that my head protects my heart,” Jodi said. “I have learned that sometimes you have to live in the state of denial to move forward or live at all as you grieve daily for what was or should have been.”

They’re a unit, Kelly and Jodi.

She gets him ready for the day each morning. She feeds him. She gets him ready for bed.

She shares her day with him, laughs with him and leans on him. He’s her best friend.

Kelly doesn’t want to leave her.

“Where do you start?” he said. “She’s the main character.

“I need her. Without her, I couldn’t do it.”

And it’s impossible for Jodi to imagine a future without her best friend.

“The thought of getting old, and he’s not gonna be there,” she said, her voice breaking. “Everything we talked about for our future probably won’t happen.”

A big part of that future is their kids, who are growing up before Kelly’s eyes.

Zack is studying advanced manufacturing technology at Des Moines Area Community College. Christian plays soccer and loves gaming. Shy like his dad, he stops to share a laugh with Kelly before he heads to a cross-country event with friends. No, he doesn’t need any money, he says.

And Kylee, the baby, keeps the family busy with her softball and volleyball games.

She’s also the one who makes them laugh when things get tough.

 

LULU AND TUBBY

Kelly and Kylee recently ordered matching silver rings.

They’d stumbled on the idea of father-daughter rings but decided to put their own spin on it.

“Usually, (the rings) say ‘father’ and ‘daughter,’ but that’s not how we roll,” Kylee said.

Instead, stamped black on silver are the words “LuLu,” Kylee’s nickname, and “Tubby,” which has been Kelly’s moniker for years.

Kylee plans to get a chain so that she can wear the “Tubby” ring around her neck at games.

“That way, whenever he’s not there, he’s there,” she said.

For three years, Kelly’s kids have watched their dad change.

And it’s changed them too.

Kylee has had to grow up.

“Obviously it has its ups and downs,” she said. “I’m a teenager. There’s obviously drama. I go to school and there’s drama, and then I come home and there’s all this responsibility.”

She helps her dad out as much as she can. She calls him her “baby brother” when he needs help eating and teases him when he demands a drink.

“It’s stressful,” she said. “But then I remember how much more stressful it is for him.”

On a lazy evening at home, the teen goes through her baby book, tracing stickers that announce the day she was born, when she had her first bath — Dad gave it to her — and when she smiled for the first time.

“I waited eight days to smile?” she asks, shocked.

She continues: First pair of shoes.

“Why would I get shoes if I was a baby?” she wonders. “What size were they?”

Some of the stickers are a bit out of order.

“I drank from a cup before I held a bottle?” she squawks.

She turns pages.

“First tooth. Fourth tooth. I got a lot of teeth.”

Kelly looks on and smiles.

Today, she’s still his little girl.

She’ll always be his little girl.