We Are Always Preparing to Manage Life on Our Own

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by Kristin Neva |

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When my 12-year-old son, Isaac, went to mow the grass last week, he noticed that one of the tires had come off the rim. My husband, Todd, purchased the zero-turn lawn mower nine years ago, a few years after his ALS diagnosis, when his arms were too weak to use a lawn tractor with a steering wheel. He used to drive using a joystick, and Isaac rode strapped into a car seat on the front deck of the mower.

Now Isaac does much of the mowing, and Todd is paralyzed, but he is still able to coach us through many home projects. Todd determined the rubber tires were getting dried out and starting to crack, so they probably wouldn’t hold air. I called a few places and found a garage that had a tire in stock. Todd explained to Isaac how to use a floor jack, and Isaac lifted the mower and easily removed the wheel with a socket wrench. I took it to town to get the tire replaced, and Isaac put it back on.

While we were working on the machine, I checked the oil. It was low, barely registering on the dipstick. Todd said we should probably be checking the oil before every use now. He used to have the machine serviced just once a year, but it’s now getting old. We decided we’d better change the oil and replace the filter.

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Rather than paying to have the tractor serviced, I thought it was something we should learn how to do. So Todd asked Isaac to come out and help, and with a few pointers from Todd, Isaac drained the oil, replaced the filter, and even remembered to put the drain plug back in before refilling the oil.

Todd joked that he didn’t tell him to do the last step because he was testing him, and Isaac passed the test.

Then Todd coached me on how to change the air filter, and Isaac cleaned debris from around the engine and exhaust with a leaf blower.

“We learned a lot today,” I said after we finished. “Didn’t we, Isaac?”

“I think you learned more than I did,” he said. He’s probably right, as it wasn’t a big jump up his learning curve from changing the oil in his dirt bike to the lawn mower.

life on our own | ALS News Today | A photo from a few years ago shows Todd riding on a large, red lawn mower in rural Michigan, with a young Isaac strapped to a car seat on the mower's front deck

Isaac rides on the lawn mower with his dad, Todd. (Photo by Kristin Neva)

Over the years, Isaac has become quite capable by doing projects with his dad’s coaching. They built a workbench and a drop-down desk together. Todd ordered parts, and Isaac built a gaming computer. And they take care of many little things, such as mounting an outdoor weather station and changing doorknobs.

Todd and I are amazed by everything our 12-year-old can do. Todd remembers that when he was Isaac’s age, he would watch his dad work on projects, but his dad did all the work himself. Todd developed confidence to do things on his own when he was an adult, but he didn’t have much actual hands-on experience. Now Todd can’t do the work, so he can only explain what needs to be done, and Isaac must be his hands. Isaac knows how to use power tools and has developed many other skills, although the positives never outweigh the losses of having a disabled father.

For me, the lawn mower maintenance was a good distraction from ALS. That evening I read through a few web pages about lawn mower maintenance. I woke up at 5:30 the next morning still thinking about it, and I went to check on Todd. I turned him from his back to his side and said, “I want to learn to change the spark plugs.”

“I was lying awake thinking I should create a lawn mower maintenance schedule for you,” he said.

We’re always preparing to manage life after Todd is gone. That’s life with ALS.

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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