HOUGHTON - "Sara knew me as a super-hero dad, but she didn't know I had a big piece of kryptonite in my pocket."
That's a line from "Heavy: Finding Meaning After Terminal Diagnosis." It's written by Todd Neva, a local author and dad, and refers to the challenge of parenting while living with terminal amyotrophic lateral sclerosis - sometimes known as Lou Gehrig's disease - a disease characterized by progressive muscle weakness that usually eventually ends in death.
Neva, along with wife and co-author Kristin Neva, read passages from the book, which follows their first year of living with the diagnosis, Tuesday at the Portage Lake District Library. They also discussed living positively despite the disease, and raising children under the shadow of the terminal diagnosis.
Dan Roblee/Daily Mining Gazette
Kristin Neva signs a copy of “Heavy” for Pat Archambeau at a Portage Lake District Library book talk Tuesday. Kristin’s husband and co-author Todd Neva sits behind her.
Todd remembered his first discovery of the disease, when he tried to lift his then-4-year-old daughter out of her car seat, and his arm wouldn't work.
Diagnosis quickly followed, which included being told the disease would be terminal, with an average life expectancy of three to five years.
Todd said Kristin's initial reaction was calm, but she admitted to falling apart soon afterward.
"How will we cope?" she remembers thinking, adding that she couldn't sleep and operated on adrenaline to take care of Sara and her son Isaac, then one year old.
"I don't want to face life without Todd," she wrote. "My kids need their daddy."
Kristin turned to the Bible, and while it didn't always offer direct answers to her questions, it did help her accept her emotions and then move toward a more positive attitude.
"I don't want to stay in this angry place forever," she wrote. "I keep crying out to God, sometimes in anger, sometimes in pain... but I worry less as I realize how much of our life is out of our control."
Debbie Hill attended the talk having already read "Heavy," and said she'd found the book's message inspirational. She summed that message up as "accepting your life the way it is, one day at a time, and finding joy every day, along with the sadness."
Kristin said one key strategy for families living with a terminal diagnosis is to continue doing things, rather than simply sitting and grieving.
"A friend had a kid who felt better after shoveling snow. Exercise can help," she said. "Sara said to me sometimes she just wanted to sit in her room and cry. I said it's OK to feel that way, but you have to do something. I feel better when I write."
"It saddens me when some people with ALS just give up," Todd added. "There can be so much purpose in a disabled life."
He said he finds that purpose in leading a men's ministry at Houghton's Evangel Baptist church, in serving as editor-in-chief for Kristin's latest writing endeavor, a novel, and in helping to home-school Sara, now eight years old.
Mostly, he focuses on trying to teach Sara and Isaac, 4, the life lessons he may not be there to help with later, recording his thoughts in video or writing on topics they aren't yet old enough to understand.
"I have time, time to make sure my son knows me... if not in person, he can read my thoughts," Todd said. "My children will see a person that lived to his last breath."
Heavy is available on Amazon.com, or locally at Book World in Houghton, and at This Little Light in Hancock. To learn more, go to NevaStory.com.