Joyful Sorrow - a Column by Kristin Neva

Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…

Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…

“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota. A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said. He was doing…

“I keep pulling it out — the old map of my inner path,” Joyce Rupp writes in her poem “Old Maps No Longer Work.” I was introduced to Rupp’s poem on a spiritual retreat five years ago. Her words resonated with me then, five years past my husband…

When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve to participate in gift opening. I felt bad that she only got one present while my brothers and I received so many. But she seemed happy with the pair of slippers or homemade ornaments my…

After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan. We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to…

Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…

I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…

I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.

Ten years ago today, my husband, Todd, was diagnosed with ALS. I’m grateful that our kids have had their dad much longer than we thought they would. When Todd was diagnosed, Sara was 4, and Isaac was just 9 months old, so we thought they might not even remember him.