How life has changed since my husband’s first birthday with ALS

Last week, my husband, Todd, celebrated his 55th birthday — a milestone we never anticipated after he was diagnosed with ALS at age 39 in June 2010.

For his 40th birthday that October, I asked friends and family to send me pictures and their favorite memories with Todd, and I put everything together in a scrapbook. It seemed like a good way to recognize what we thought would be the last of his milestone birthdays. I wanted Todd to hear the nice things people had to say about him, rather than just me hearing them at his funeral. At the time, I thought I might display the book on a table at the funeral. In our minds, Todd’s death was imminent.

Now, 15 years later, it’s fun to look back and read some of those memories people shared.

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A friend from church wrote about how Todd helped him clean his kitchen after he unleashed a fire extinguisher inside his oven. He arrived frazzled with his wife and family and was preparing to leave them at our house while he went back to clean. “Why don’t I come and help?” Todd asked. The friend went on to explain how Todd’s calming presence and quick work turned the hugely stressful issue into a minor inconvenience that wasn’t even worth discussing.

Another friend remembered laughing when she saw Todd and our then 4-year-old daughter rolling down a hill outside our church.

One elderly friend who was part of the same church group wrote about how she appreciated Todd picking up her and her husband when the weather was bad.

I wrote down our daughter’s favorite memories, including going on a daddy date to Chuck E. Cheese and watching “Winnie the Pooh.” I included a picture of our 1-year-old son along with his handprints, wondering if he would even form lasting memories of his dad.

It seems like a different life when I look back through that book now.

Birthdays have a way of making one reflect on the changes that life brings as time marches on. I’m struck by how many of those who wished Todd a happy 40th have experienced change. There have been marriages, divorces, new babies, and adoptions. Children have grown up. We’ve lost touch with some of the people who sent their birthday greetings. A number of people have since died. Reading memories from those who have passed is bittersweet.

My dad, who died in 2016, recalled the time Todd served him apple pie before asking if he’d give his blessing to marry me, and how Todd later told him the pie was to make him more inclined to give his approval. He said the pie didn’t sway him, but rather he was influenced by the belief that Todd would be good at cutting grass. He thanked Todd for all the hours he spent on the mower when we visited them. And my dad wrote that the qualities Todd displayed were all that a father would wish for in his daughter’s husband.

A lot of life happens in 15 years. Looking through that scrapbook, I’m reminded that life rarely unfolds the way we imagine it will. We all experience loss, alongside the good, as life keeps moving on.

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