Our Bittersweet Spring Break Trip

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

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

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

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

The plan seemed uncertain until the morning of our departure. If Todd’s precarious health had gone into crisis mode, we would have canceled. If a caregiver got sick, I was prepared to stay home with them. I would have sent the kids to the water park with their aunt and grandma. But all went well 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 was good to take a break from the feeling of still being in service day in and day out. Most of Todd’s care isn’t difficult, but I’m always attentive to his call to scratch an itch, adjust an arm, or help him in the bathroom. It’s tiring.

I loved being able to sleep and take a break from the daily care chores, but I really missed Todd. I kept sending him pictures of what we were doing, wishing he could have come with us because he would have really enjoyed the trip if he was healthy.

Todd would have liked the hotel. It was the kind of place we used to stay in pre-ALS, with a nice view of the lake from our bedroom balcony. Todd would have enjoyed the barbecue food we found.

I wish Todd could visit the Kohler Design Center and look at the displays of sleek bathrooms and high-end kitchens. Todd has a sense of design and he’s used Kohler products in a downtown Milwaukee condominium he remodeled, a 1925 bungalow we purchased and restored, and the accessible home we built after his diagnostic.

spring break |  ALS News Today |  what looks like two Polaroids: one on the left with Sara at the 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 photo of a kitchen display and commented, “When I design my home, I come here for inspiration.”

He’s his father’s son, I thought, and sent the quote to Todd.

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

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

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

When I got home, I asked Todd how it felt to be home while we were having fun.

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

It was a bittersweet journey. It was nice to be able to drink tea and eat 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 text him. One day, I won’t be able to do this anymore.


To note: ALS News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 ALS issues.

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