Joyful Sorrow - a Column by Kristin Neva

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…

My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced vital capacity (FVC) dipped below 50%, and so he had it measured every few months at an ALS clinic.

In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode. “We need to sell the house,” he said. “We need to move near your family.” It took more than a year for the house to…

“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…

When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…

I inspected the fish through the curved glass of a refrigerated display case. Wild-caught Lake Superior whitefish and trout — both raw and smoked — lay in metal trays. “I’d like that piece of smoked trout in the middle. Underneath the top one,” I specified. I picked a plump…

I watched a tribute video to a husband and father who recently died from ALS. Tears filled my eyes over tender moments of a toddler kissing and hugging his dad, jumping on his lap, and driving matchbox cars on his head while the dad smiled. The man radiated love for…

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is…

My husband, Todd, and I marked 18 years of marriage on Tuesday. The memory of our seventh anniversary is seared into my mind. He bought me flowers from a Mayo Clinic gift shop. We were in Rochester, Minnesota, getting a second opinion on his ALS diagnosis. After a battery of…