Joyful Sorrow - a Column by Kristin Neva

About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the disease progression would just stop, we could adjust. But managing ALS only becomes more stressful as time goes on,…

I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called…

“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, and I’m like, ‘What’s this?’” Sara continued with increasing volume: “Oh, that’s my father’s foot! My father’s foot has…

“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want…

“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…