Joyful Sorrow - a Column by Kristin Neva

I think a lot about how a parent’s ALS affects kids. Recently, an online friend lost her husband to ALS. She has small children and has been posting about their grief and the tender questions her kids have asked. It’s difficult enough for an adult to process the pain of…

After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the…

“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…

I gave up social media for Lent. Many Christians deny themselves some pleasure or refrain from a vice or a bad habit for a period of preparation and reflection in the weeks leading up to Easter. It seemed like a good time for me to take a break from my…

Sometimes little things push me over the edge. One morning last week, I was already cranky because I had burnt the oatmeal. The smell followed me, lingering in my hair as I drove the kids to school. After I dropped them off, I stopped by a store on the way…

“I’m glad I got the chance to miss you,” I told my husband, Todd, when I got home after a day trip skiing with our children last week. Since Todd has ALS and I am his caregiver, we rarely spend time apart. Now that he is paralyzed, we don’t…

I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. I grieved the loss of our dreams of adventures that we would have — family vacations to national parks…

It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a mild January with many sunny days, the first two weeks of February made up for it with over 40 inches of snowfall, along with below-zero to single-digit temperatures. I had been getting out…

Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis came almost too quickly. In the fall of 2009, Todd first noticed that his left arm was becoming weak.

When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as…