Celebrating Today While Wondering About the Future

A look at what important milestones mean when living with ALS

Kristin Neva avatar

by Kristin Neva |

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As summer comes to an end, we’ve recently passed a couple milestones.

Our son, Isaac, celebrated his 13th birthday at the end of August. That was not something we thought my husband, Todd, would live to see when he was diagnosed with ALS. Isaac was only 9 months old then, and the life expectancy for most patients with ALS is only three to five years.

The ALS progression continued, and Todd surprisingly held on. But by the beginning of this year, the future became tenuous. Todd is increasingly dependent on a noninvasive ventilator, and he frequently fights to clear congestion from his lungs. We use a cough-assist machine and perform manual cough assists.

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Todd being here to see Isaac turn 13 feels like a win. Isaac requested steak and mashed potatoes for his birthday dinner. After I fed Todd his ribeye, he leaned back in his wheelchair. “My life is complete,” he joked. “My son turned 13, and that was a good steak dinner.”

We celebrated and I wondered, “Will Todd be here for Isaac’s 14th birthday?”

A week before Isaac’s birthday, Todd and I celebrated 19 years of marriage. I gave him gourmet chocolate truffles and fudge. He had flowers delivered to me. After they wilted, I saved some purple statice from the arrangement because they dry well. I’ve been drying flowers Todd has given me for years, and then throwing them out when he gives me a fresh bouquet. I never know which bouquet will be the last.

We celebrated, and I wondered, “Will Todd be here for our 20th anniversary?”

Last weekend, our nephew and his family visited us from Minnesota. Todd had asked my mom to take family pictures for us and them, so we again made the drive to McLain State Park here in Michigan to do that.

living with als | ALS News Today | A photo of the Neva family in the woods of northern Michigan. Todd is seated in his chair in the middle and flanked by his two children and Kristin. They're all wearing black T-shirts, and rays of bright sunshine filter through some of the majestic pines

The Neva family. (Courtesy of Kristin Neva)

Leaving the house is tiring for Todd because his neck is weak, but he wanted to go someplace special for the photographs. Most years, I update our framed family photo, but last year we didn’t get a good one of us. In the picture I have on the wall now, Isaac is shorter than both his sister and me. But now he towers above us, and he would be nearly as tall as his father if Todd could stand.

Todd entered Isaac’s age and height into an online growth chart that calculated Isaac’s adult height to be 6 feet, 1 inch tall. Todd delights in the thought that his son will be so tall, but we can only hope that he will see it for himself.

We celebrate today while wondering about the future.

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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