Joyful Sorrow - a Column by Kristin Neva

patients, strength, bittersweet Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

I Am Savoring Our Limited Time as a Family

A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…

The Circle of Life from Motherhood to Caregiving

I thought my days of obsessively avoiding germs and examining poop would be over once my babies grew, but such is the circle of life now that my husband has ALS. When I was a brand-new mom, one of my biggest pet peeves was when strangers in a grocery store…

We Need Allies to Fight This War

My son pointed to a plastic army man on the ottoman. “That guy is a sniper,” he said. “He’s taking everyone out.” He placed a soldier on top of others on the living room floor. “This army is using dead bodies to build a wall. In war, you have to…

Learning the Rules for the Medicare Guessing Game

Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to…

Ordinary Outings Are Arduous with ALS

My Facebook friends post accomplishments like completing a 5K run. If I were to post my accomplishments, I would include taking my husband, Todd, to my daughter’s school concert. Going on a simple family outing with ALS can be challenging. With about 200 inches of snow falling annually, traveling is…

Even Trees Die with No Known Cause or Cure

I tell potential customers that my Christmas wreaths will last until Easter. That usually gets a chuckle and often a sale. At a holiday craft fair, a gray-haired man topped my claim: “I bought one from you last year, and I just threw it out last week.” Longevity is an…

In Defense of Delight in the Midst of Suffering

If my husband, Todd, did not have ALS, there would still be someone else with ALS. And there’s cancer. Childhood illness. Tragic accidents. But winter has arrived on the Keweenaw Peninsula, and I’m compelled to get out and delight in God’s creation. Would He have made nature so beautiful…

Grief Is a Wolf that Demands Attention

As I approached the one-year anniversary of my husband, Todd’s, ALS diagnosis, I wrote in my journal: “I want to be happy, healed, and whole again. But the grief that I am experiencing is not something one can easily get over.” I read books such as “Getting…

We’re Figuring Out Healthcare on Our Own in Rural America

After my husband Todd’s ALS diagnosis, he said, “We need to sell the house and move near your parents.” He anticipated that their day-to-day support in rural northern Michigan would be more important than being near an ALS clinic in Milwaukee, Wisconsin. We appreciated the convenience of seeing Todd’s…