Why our daughter’s high school graduation day was extra special

With ALS in the picture, special events are never taken for granted

Kristin Neva avatar

by Kristin Neva |

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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.

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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.

A two-photo collage shows a father and daughter on the left, and mother and daughter on the right. In the first photo, the daughter is dressed in a high school graduation gown, and she holds up a medal draped around her neck. The father is in a power wheelchair, and both are smiling broadly. In the second photo, a mother and daughter strike a ballet pose, en pointe, in their living room.

From left, Todd Neva and his daughter, Sara, on her high school graduation day; Kristin Neva strikes a ballet pose next to a cutout of her daughter, Sara. (Courtesy of Kristin Neva)

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.

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.


John avatar


Thank you, Kristin, for sharing your story. I do enjoy reading them to hear how Todd and the family are doing. The photos are nice to put the faces to the names. When I was diagnosed in 2021 I worried if I would make it to my two youngest children high school graduation as well. Since my diagnosis I have been able to attend both of my younger children high school graduation. Like Sara, my Charlie graduated her high school this year and we are having her grad party next weekend.

So, I completely understand the emotion you, Todd, and your family must have been facing as Sara was approaching her graduation and the thought of Todd making it to your son's graduation in the near future. Reading your story hits so close to my heart I shed tears. Not in sadness but in joy. Joy that Todd continues to fight to live and be with his family. Joy that Todd has been going 14 years and I hope many more to come. As bleak as the situation is, you have a way of painting a picture I think all of us can understand and appreciate. The uncertainty is now a way of life.

I think of Todd and all our pALS and caregivers nearly every day but Todd more than others. I believe it is because you have brought the humanity of Todd to us in great detail; his struggle, your struggle, your family's struggle in great detail to this platform. For me, Todd is a wonderful example of ones "must do" approach to living and your love for him to be there along this journey. You both are an inspiration! Thank you!

Christine avatar


Always nice to follow Todd’s journey along with your beloved family!
Best to all of you!❣️

Anne Iles avatar

Anne Iles

I look forward to all your comments as I lost both my brothers to ALS. I also carry the gene that killed my brothers so I live with uncertainty every day. I’ve been told by doctors that I have a 100% chance of getting ALS and other doctors say I won’t. Who knows. I pray that Todd will live many years to come. Sincerely. Anne


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