Joyful Sorrow - a Column by Kristin Neva

My husband, Todd, recently asked me, “What do you think our life would be like if I hadn’t gotten ALS?” I’ve done this mental exercise before, but never with him. He’d be working and trying to advance his career. Our two kids would be in school. I might be working…

A few months after Todd’s diagnosis, our ALS clinic put me in touch with a woman who was further down the road that I had just begun. Similar to our situation, her husband was diagnosed in his late 30s when they had a newborn son. I spoke with her on…

ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below…

Before my husband, Todd, got ALS, we had minor problems, but we were full of hope. We had a small baby so I wasn’t getting much sleep, but I knew that things would get better. Todd was sometimes frustrated with his work, but he hoped to be promoted. Our obstacles…

My heart ached for my kids after my husband, Todd, was diagnosed with amyotrophic lateral sclerosis (ALS). Isaac was 9 months old and Sara was 4. How would ALS affect them? I had no idea how to help them navigate our future. A year after Todd was diagnosed, I…

Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle. When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of…

Spoiler alert: This column describes plotlines from the film “The Art of Racing in the Rain.”  Friday movie night has become our favorite pastime, as it’s something we can still enjoy as a family despite my husband Todd’s paralysis. We typically find a funny movie on Netflix or Amazon Prime.

After my husband, Todd, was diagnosed with ALS, we went on what we thought would be our last family vacation. We flew into Los Angeles, visited friends, and toured some sites. I took a lot of pictures — our 5-year-old daughter meeting princesses at Disneyland, our…

After we got married, Todd and I bought an adorable, craftsman-style bungalow in a Milwaukee neighborhood. I believed living in the city would give me a better understanding of the issues faced by the families I served at an inner-city ministry, where I coordinated a tutoring program. Our next-door…

“So tell us your story,” we often ask people who come to help with Todd’s care. Those who show particularly deep compassion tend to have their own story of suffering, or they’ve loved and cared for someone who suffered. A stage IV cancer survivor. A disabled parent. A sibling who…