Joyful Sorrow - a Column by Kristin Neva

“Can you believe our little Fafa finished ninth grade?” I asked my husband, Todd, as I flushed his feeding tube. He laughed, and we took a trip down memory lane. Our daughter, Sara, gave herself the nickname. Before she was even 2, she said something like, “Fafa wants that.”…

On occasion, I’ll page through the photo books my husband, Todd, made for me as Christmas gifts. I feel a sense of gratitude as I look back on all we’ve been able to do since his ALS diagnosis. Family game nights. Outings to sporting events. Family movie nights. Several…

On one of my recent daily walks, I listened to an “Office Ladies” podcast in which Jenna Fischer shared her ongoing struggle with anxiety. She used the analogy of a backpack to describe the burden she lives with. Some days it weighs her down, while other days she…

Last week, I went to the doctor to get a problem with my ear checked out. The medical assistant went through a list of screening questions. The last was, “Are you depressed?” Tears welled up in my eyes. “Yeah, I’m depressed. My husband is terminally ill.” “I’m sorry,” she said.

We had a health scare a couple weeks ago, and I had to take our 8-year-old goldendoodle to the vet. Earlier in the week, Comet didn’t have his usual zip. Instead of eagerly greeting visitors, he stayed on his doggy bed. By Thursday evening of that week, Comet began…

Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I…

In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…

Life is unpredictable. People get in car accidents. They have heart attacks. Tornadoes strike. I recently saw a viral video in which a rabid bobcat attacked a woman outside her home. We never really know what will happen next, and yet, we humans usually live with optimism for the…

My husband, Todd, and I had our second doses of the COVID-19 vaccine last week. The side effects from the first shot hadn’t been bad for either of us — just minor headaches — but the second one hit us harder. Todd woke with extreme chills at 2:30 a.m.

Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…