The small things bring meaning and joy in life with ALS

I make lists to keep track of everything I need to do in addition to taking care of my husband, Todd, who has ALS. Make an appointment to have the snowblower removed from the tractor and the bucket put on. Get the snow tires swapped out for summer tires on our vehicles. Order pants and track shoes for my growing teenage boy. Attend my kids’ band and choir concerts, track meets, and dance shows.

As we approach the end of the school year, a lot is going on, especially because my daughter is a senior in high school. We ordered her graduation announcements and figured out a menu for her party. I make sure she’s on track with her college plans. Has she submitted her scholarship essays on time? Did the university receive her AP English Language and Composition test results? When will her federal financial aid application be processed? When will dormitory housing be open for incoming freshmen to pick their rooms?

My daughter will also attend her senior prom in a couple of weeks.

We ordered a prom dress months ago. The first one was too big, so we returned it. We ordered a second dress with sequins, which fits her perfectly, aside from being too long. “Get dress hemmed” was added to my list.

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I texted a seamstress I knew to see if she could alter it. She could, so I sent another text thanking her and saying we’d need it a few days before May 11.

Last week, when I sent another text to schedule a time for a fitting, I learned there had been a communication glitch. The seamstress hadn’t received my second text message and had since been completely booked.

I felt like crying. I often feel on edge due to the stress of living with my husband’s ALS. I cry easily, even about minor things.

But in this case, I fought back the tears and told myself, “This is not a big problem.”

I thought back to the previous evening when Todd’s lungs had filled with mucus again and again, and I’d cleared them over and over. After I got him breathing again, I went to take my evening sauna, and my mother arrived to give Todd his nightly massage and range of motion exercises.

A while later, my mother pounded on the bathroom door and yelled for me to come help.

“What is it?” I asked her.

“I don’t know,” she said, the sound of panic in her voice.

In his office, reclined back in his power wheelchair, Todd wasn’t able to talk. It looked like he was drowning in his own phlegm. I cleared his lungs.

“You saved my life, again,” Todd said wryly, as I walked away to blow-dry my hair. And then he said to my mother, “Look at her. She didn’t even have a stress response.”

Todd is dependent on me to stay alive. Not being able to breathe or cough is a big problem. ALS is a big problem. Most other problems in life pale in comparison.

Getting a prom dress altered is small stuff. I took a deep breath. I’d find a solution.

Time for problem-solving

In our 14 years of living with ALS, I’ve found equipment and resources for my husband. I’ve recruited nighttime caregivers for him. I’ve researched medical issues and navigated our healthcare system. I’m a problem-solver.

Before long, I realized that I could hem my daughter’s dress.

I haven’t done much sewing, but I’ve learned how to do many things for my husband’s care for which I felt ill-prepared. Without any medical training, I’ve saved Todd’s life with manual assist coughs on a near-weekly basis. I’m not mechanically inclined, but I’ve learned to blow snow, clear brush, and landscape using various attachments on the front of a tractor.

I used Google to search “how to hem a sequin dress,” and I found a YouTube video with several pointers. I’d have to purchase a strong pair of scissors to cut the sequined material, but it seemed doable. And I’d save a little money compared with the cost of hiring somebody to do it.

I added “hem dress” to my to-do list.

Hemming the dress is a fun little project — a nice distraction from the daily grind of caregiving. I’m halfway done with the top layer and it’s turning out well.

After all these years of living with ALS, I’ve found that it’s often the small things in life that bring meaning and joy.

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.