The story of ‘A Needed Life’

It’s not that Craig Modahl of Port Washington had always wanted to write a book, but he and his wife’s journey caring for a man with special needs prompted him to take copious notes.

With inspiration from a writers’ group, Craig Modahl of Port finished his memoir of caring for a man with special needs, a story, he says, that needs to be told and will now be published.

Modahl, 60, thought it was important to write a memoir depicting his time with Kevin while encompassing the bigger picture of a lack of recognition and appreciation for caregivers and raising deep questions about society’s perception and treatment of those with developmental disabilities.

Modahl would complete 15 to 20 pages of his memoir from time to time, but never put it all together.

Until he found a welcoming writers group in Port Washington. Modahl has been a regular since the close-knit cohort’s inception in 2021 and was told “You have to complete this.”

He found an editor in the group and now has an offer to publish his 40,000-word work.

“Because of that participation, that’s how it got finished,” Modahl said.

Modahl calls his memoir “A Needed Life” that tells a story he thinks needs to be told.

“This story is about Kevin and his influence on our lives,” Modahl said.

Modahl and his then fiancee Sandy met Kevin at a group home in 1988 in West Bend. Kevin didn’t speak but could make noises, and the three quickly bonded.

When Kevin’s spot at the small home was to be taken by someone with more significant physical needs and he was scheduled to be moved to a bigger house, Modahl and Sandy wouldn’t allow it. They decided to become Kevin’s guardians.

It was Sandy’s idea, and Modahl was instantly on board with it.

“We couldn’t imagine him going to a different kind of setting,” Modahl said.

“I wish that I could claim this was a well-thought out plan, but it was not.”

They had their detractors. Some asked why they would do this right when they were getting married, but the couple was committed.

Their first home was an apartment in Germantown. Kevin went to the Threshold in West Bend during the day.

“It was an adjustment, but it worked,” Modahl said. “Kevin did everything with us.”

The family also had short-term house guests with special needs, eventually leading to the founding of Balance, a nonprofit organization serving children and adults with developmental disabilities. Modahl started the organization in the early 1990s in Saukville. It has since grown and moved to Grafton.

While that endeavor will be one of Modahl’s lasting legacies, Balance isn’t even mentioned in the memoir.

“This story is about Kevin,” he said.

“He had this great personality. He laughed a lot.”

Modahl described a scene from a canoe and camping trip with Kevin near the Namekagon River from the 1990s:

He sat on a nylon folding chair outside the camper in the warm sun. Our six-year-old niece was sharing M&M’s with him. Removing a single candy from the bag and laying it in her open hand, she would extend it toward Kevin, asking if he would like one. He would press his open hand to his face and stretch his neck out, examining the brightly colored candy in front of him. He reached out and picked it up between his finger and thumb, and placed it in his mouth. He’d smile and chuckle as he bit into it.

Later in the day, she came to him with her open hand to show him a bright colored lady bug she had found. He reached out and picked it up between his finger and thumb and put it in his mouth. He ate it with a big smile and a satisfied laugh.

“Aunt Sandy, Kevin ate my ladybug!”

Kevin died in 2013 at the age of 53 after a long decline in health, made more difficult since he couldn’t understand advice on how to handle some of his conditions.

“For us, it was like we’d lost our best friend,” Modahl said.

The Modahls cared for Kevin for about half of his life and ensured that second half was much better than the first.

When he was 18 months old, Kevin’s brother drowned in a bathtub. Kevin was put in the foster system at 3 but it couldn’t handle him, so at 7 he was moved to the Southern Wisconsin Center for the Developmentally Disabled.

“He did have some tough behaviors, but it sounded like a tough life,” Modahl said.

Kevin’s impact on the Modahls stretched from smiles to spirituality. Modahl left one Catholic church because Kevin wasn’t allowed to take Communion because he couldn’t say “amen.” Another Catholic church suggested he remain in the pew. Modahl said no, Kevin was to be included.

A Lutheran church required Kevin to take a class in order to take Communion, and Modahl ended up leaving the church completely.

He later connected with First Congregational Church in Port Washington, which invited Kevin to take Communion. That led Modahl to earn a master’s degree in theology from Chicago Theological Seminary. He served as a specialized minister at the church for seven years, and later as a bridge pastor for a couple of years at St. Peter’s United Church of Christ in Saukville.

The Modahls had two daughters who became well adjusted to many house guests — exchange students, foster children, Kevin and now Aaron, a man with developmental disabilities the couple has had for the past several years. He and Kevin didn’t interact often but got along well.

Modahl developed a passion for working with people with disabilities when he worked at church camps during the summers growing up in Ganesville, a tiny city in the western part of Wisconsin. He earned a degree in journalism from Carroll University, then joined the Peace Corps and taught woodworking in Kenya.

He met Sandy while working at the Ranch in Menomonee Falls. Modahl later earned a master’s degree in social work from the University of Wisconsin-Milwaukee.

He left Balance in 2014 and now runs a consulting business for people and organizations supporting those with developmental disabilities.

Sandy is director of Children’s Services at Curative Care Network, which provides services to people with disabilities.

Modahl continues to meet with the writers’ group while he goes through the publishing of his memoir. He is waiting for offers from other publishing houses and is grateful for his copy editor, Rachel Fealy-Layer, who works as a librarian.

“I joke that I owe her many, many, many commas,” Modahl said.

The memoir, he said, is “designed to show how important caregivers are and the impact they have on people. They often get lost in the shuffle of what they do for people’s lives.”

It raises questions about genetic engineering — “Where do we define difference vs. disability? What is acceptable and what is not?” Modahl asked.

He referenced his memorable canoe trip along the river.

“We have attempted to control water in so many ways. We have succeeded and we have failed. If we start doing that with people, the results could be devastating,” Modahl said.

“What would we do without people like Kevin? What would we be missing in our society?”

For information on the writers group, contact Don Niedederfrank at dniederfrank@gmail.com or at (262) 339-7123.