June 10, 2024, by Kristin Neva
Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend.
My husband Todd’s breathing is so compromised due to ALS that I didn’t feel like I could make plans four months out. It’s been touch- and-go at times, especially over the last couple years, but she needed to book plane tickets and make lodging accommodations. I told her to come for the ceremony and at least we could have a family dinner.
What happened with Todd and his health would determine how celebratory we were all feeling. I hoped the weekend would be just about our daughter and her graduation.
A month ago, Todd’s health seemed stable-ish, so we decided to have a graduation party while the extended family was in town. With all that goes into hosting a crowd of people, I could use their help. Amazingly, it looked like Todd would see his daughter graduate from high school. And not only was he able to attend her party, he was also able to help plan it.
Memories can’t wait
Todd made graduation announcements using his computer and assisted technology. He has a HeadMouse by Origin Instruments that detects a reflective dot that I place on the brim of a visor, and Todd can move the cursor by moving his head. He clicks the mouse by sipping and puffing on a straw. And he has picked up a number of graphic art skills over the years while volunteering for our church’s communications committee.
Todd also made photo collage posters, a congratulations banner, and a video compilation set to music with pictures of our daughter over the last 18 years. He added a number of videos of Sara dancing in competitions and shows to play on our television, and he ordered a life-size cutout of her en pointe in her ballet leotard with another banner that read “Dance with Sara.”
I cleaned and organized our house, and our 14-year-old son helped with garage and yard cleanup. I planned a menu and readily accepted offers that came in to help prepare food or bring desserts. Two women who have cared for Todd over the years offered to take care of him during the party so I could focus on other things. Over the last decade, I’ve learned to accept help when people offer.
Everything was coming together, and the graduation wasn’t far out, but things were still tentative in my mind. At my son’s track meet a couple weeks before the graduation, another parent asked how Todd was doing. “He’s hanging in there,” I said. “It’s looking likely that he’ll see Sara graduate.”
Later, I thought about how unusual my reply was, but ever since Todd’s diagnosis, uncertainty has been a constant. The fragility of his life has been amplified over the last couple years because we keep having close calls when his lungs are congested or mucus gets stuck in his windpipe and he can’t cough. I wonder if I’ll wake up one morning and find that he’s not breathing or if I’ll run a quick errand and come home to find that he’s gone.
But that did not happen last week. Last week was a good week. Sara graduated, and Todd got to attend her party and visit with friends and family.
If Todd can make it to next Monday, he will have survived 14 years since his ALS diagnosis. Shortly after he was diagnosed, I learned that a friend’s cousin had survived 14 years without a tracheostomy or a ventilator, and I hoped Todd would beat the odds and live that long. But that person didn’t make it to 15 years, and now I’m encouraging Todd to help plan for our next big party. While he is still able, I want him to make the photo collages, banners, and videos for our son’s graduation in 2028.
It’s improbable that Todd will live to see our son graduate, too, but he’s already beat the odds, so who knows? We continue living with uncertainty.
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This article originally appeared June 6, 2024, in ALS News Today: Why our daughter’s high school graduation day was extra special.
