Joyful Sorrow - a Column by Kristin Neva

It’s nice to have distractions from the difficulty of life with ALS, so I was in a pretty good mood for the past week because my brothers, sister-in-law, and nieces were visiting from out of town. But one afternoon, they all headed out to a retreat center about 45…

When my 12-year-old son, Isaac, went to mow the grass last week, he noticed that one of the tires had come off the rim. My husband, Todd, purchased the zero-turn lawn mower nine years ago, a few years after his ALS diagnosis, when his arms were too weak to…

“What if Todd had aspirated while you were on your spring break trip?” someone asked me. That’s the type of question I’ve asked myself many times over the last decade since my husband, Todd, was diagnosed with ALS. What risks are we willing to take to…

“Kristin, if you can’t choose joy for yourself, then do it so Todd’s remaining days and years won’t be miserable,” I wrote in my journal a month after my husband, Todd, was diagnosed with ALS. “Do it so your kids can see how to live well, so they…

As I left our house to get the kids from school, the tree was gone. A contractor’s crew was removing brush from the ditch with an excavator to extend the culvert that passed under our driveway. My husband, Todd, had specifically asked that the poplar tree be left alone. I…

Every Memorial Day, I go with my mom, daughter, and son to the Lakeside Cemetery in Hancock, Michigan, to attend a ceremony honoring veterans. I drive separately in case I need to return home quickly to help my husband, Todd, who has ALS. The ceremony ends with the…

Last week, my husband, Todd, considered canceling a dentist appointment to get a crown placed over a broken tooth. “Is it really necessary?” he asked. “What’s left of this tooth will probably last me for the rest of my life.” Todd has had ALS for nearly 12 years, far exceeding…

A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS…

In the summer of 2010, my husband, Todd, stopped at the mall after work. It was my birthday, and he hadn’t gotten me anything yet. His mind was still swirling a month after receiving an ALS diagnosis. The shock of it. The grief. He walked through the mall…

A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom. On Saturday,…