Our Bittersweet Spring Break Trip

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by Kristin Neva |

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I got away for a couple of nights during spring break with my 12-year-old son, Isaac, and 16-year-old daughter, Sara. It was good to have a mini-vacation, although I was sad my husband, Todd, couldn’t join us because his ALS progression makes travel too difficult.

Three years ago, we all drove to Minneapolis for several nights. The trip was fun, but it was challenging. Todd was uncomfortable during the seven-hour drive each way. He wasn’t able to change the seat position of his wheelchair, and his neck was too weak to keep his head from bouncing around on rough roads. It was difficult for him to be away from his equipment at home. That trip marked the end of his traveling days.

The following year, I was going to get away with the kids, and I arranged caregivers for Todd, but then the lockdowns started. Last year, we drove an hour and a half with Todd to shop and eat at a restaurant, and we learned that he was too weak for even day trips.

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Now that things are opening up, I wanted to get away with our kids to a water park. I want them to have some of the experiences other families have. Todd’s sister came to help my mom take care of him, and we hired other caregivers for his toileting.

The plan felt iffy until the morning we left. If Todd’s precarious health had entered crisis mode, we would have canceled. If a caregiver had gotten sick, I was prepared to stay home with him. I would have sent the kids to the water park with their auntie and grandma. But everything worked out, and we drove five hours south to Sheboygan, Wisconsin, a town on Lake Michigan. It was cold there, too, but at least the snow had melted.

It felt good to have a break from the feeling of always being on duty day in and day out. Much of Todd’s care isn’t difficult, but I’m ever alert for his call to scratch an itch, adjust an arm, or help him in the bathroom. It’s tiring.

I liked being able to sleep in and have a break from daily caregiving tasks, but I really missed Todd. I kept texting him pictures of what we were doing, wishing he could have come with us, because he really would have enjoyed the trip if he were healthy.

Todd would have liked the hotel. It was the kind of place we used to stay at pre-ALS, with a beautiful view of the lake from our room’s balcony. Todd would have enjoyed the food at the barbecue place we found.

I wished Todd could have toured the Kohler Design Center and looked at the displays of elegant bathrooms and high-end kitchens. Todd has an eye for design, and he used Kohler products in a downtown Milwaukee condominium he renovated, in a 1925 bungalow we bought and restored, and in the accessible home we built after his diagnosis.

spring break | ALS News Today | what looks like two Polaroids: one on the left with Sara at Kohler Design Center, and the one on the right of Isaac taking a picture of a stove

Sara and Isaac on our spring break trip to Sheboygan, Wisconsin. (Photos by Kristin Neva)

Isaac took a picture of a kitchen display and commented, “When I design my house, I’m coming here for inspiration.”

He is his father’s son, I thought, and I texted Todd the quote.

At one point after I had sent several text messages, I wondered if Todd felt left out. I wanted to include him in our adventure, but I know I feel wistful for what might have been when I see pictures of other families on vacation. I quit flooding him with pictures, but then I got a text from him asking, “What are you doing now?” So I texted Todd pictures of Isaac eating hot wings at Buffalo Wild Wings, and later I sent pictures from the water park of Sara surfing in a riptide pool.

spring break | ALS News Today | the back of Todd's head, with equipment attached, looking at an image of Kristin on his computer screen

Todd at home looking at Kristin by the lake. (Courtesy of Kristin Neva)

When I got home I asked Todd how he felt about being at home while we had fun.

“There’s a hierarchy of needs,” he said. “I don’t feel bad about missing out on a vacation. I’m glad you and the kids could go and have fun. I just wish I could walk, scratch itches, and go to the bathroom on my own.”

It was a bittersweet trip. It was nice to be able to drink tea and eat my breakfast without having to feed Todd between bites, but I missed my best friend. He’s the one I want to share life with, so I was glad I could at least send him those texts. One day I won’t be able to do that.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

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