Spring Break With ALS Comes With Sacrifice and Love

Kristin Neva avatar

by Kristin Neva |

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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 losing a loved one. It breaks my heart when young kids lose parents.

I thought that was going to be us, because our daughter was 4 and our son 9 months old when their dad was diagnosed with ALS and given a prognosis of death within three to five years. Instead, we find ourselves on the ALS slow track. We are thankful for the time we have, but it’s a hard slog.

My husband, Todd, and I try to give our kids a sense of normalcy as they grow up with their dad’s progressive disability.

Five years ago, I wanted to take the kids on a spring break trip because my daughter had mentioned how her friends got to go places. I reserved a room at a waterpark half a day’s drive away.

I lined up caregivers to take care of Todd at home for 2 1/2 days while we were gone. The kids and I had fun, but I was sad to be having a family vacation without Todd.

For the next couple of years, we took spring break trips together as a family to Minneapolis. It was daunting to consider the trip without help. We found a caregiver who was willing to make the nearly seven-hour drive and stay at the same hotel to provide nighttime care.

We visited Todd’s family and went to the Mall of America and the Science Museum of Minnesota. Both are wheelchair-friendly, and I was glad we could make memories with Todd.

Unfortunately, our last trip was hard on Todd physically, and we knew it was the last time we’d travel far.

Last year, I again lined up caregivers to take care of Todd so I could take the kids out of town for a couple days, but our trip was canceled due to the pandemic.

With a progressive disease, it’s increasingly difficult to give our kids typical experiences, but with the pandemic, most of their friends also were stuck at home. I felt a sense of relief that our kids weren’t missing out.

This year, with the pandemic still happening, we planned for another spring break staycation.

Our teenage daughter went on a couple of shopping trips with her friends to Marquette, Michigan, a small city two hours away.

I thought it would be fun for our son and me to make a run down there, too — or at least it would be something different. Isaac had built a workbench with his dad’s coaching and needed a few more tools. We’d go to Lowes to pick out the tools, and Isaac wanted to have lunch at Buffalo Wild Wings.

I found a caregiver who could stay with Todd, but then Todd decided he’d go with us to spend time with Isaac and help pick out the tools.

My guys had fun, and I was glad to see it, but Todd said the trip there was rough. His neck was sore from bouncing around in the back of our rear-entry accessible van. The roads are especially rough at this time of year now that the frost is lifting, which creates bumps.

I picked up a travel neck pillow from Target for the ride home, but that wasn’t very comfortable, either.

“Was it too much for you?” I asked Todd after we got home.

“It was hard, but I’m glad I went,” he said.

It was fun to get out, because it gets boring to be stuck at home. When we do activities without Todd, it isn’t the same. I just wish that travel wasn’t so uncomfortable and exhausting for him.

It took a couple days for Todd’s neck muscles to recover, but he’s already thinking about how he would do it next time. He said perhaps we should strap his head to his padded wheelchair headrest.

I hope that one day, when the kids are grown, they will look back on their dad’s extraordinary effort to keep on engaging with them in the midst of discomfort and pain and know how much they are loved.

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Comments

Jessica Towbin avatar

Jessica Towbin

Kristin, this post hits close to home. My final travel days were just before the pandemic. Now I'm thinking about how to deal with things when my son leaves for college next year. I can't imagine not being there, but I also can't imagine making a long trip. By the way, I have to secure my head too. Thank you for your wonderful writing.

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