Documenting Love to Help It Live On

Kristin Neva avatar

by Kristin Neva |

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I watched a tribute video to a husband and father who recently died from ALS. Tears filled my eyes over tender moments of a toddler kissing and hugging his dad, jumping on his lap, and driving matchbox cars on his head while the dad smiled. The man radiated love for his little boy and another son who would be born after his death.

We have similar videos and photos of my husband, Todd, capturing ordinary moments of daily life with our daughter and son.

A week after Todd’s ALS diagnosis, we took our then 4-year-old daughter, Sara, and 10-month-old son, Isaac, to the beach. I took pictures of Todd and the kids, aware that I was taking pictures for the future.

ALS News Today \ A photo collage of Kristin's husband, Todd, before ALS symptoms completely affected his mobility, playing on the beach with his two young children.

(Photos by Kristin Neva)

Four months later, we took the kids trick-or-treating for Halloween. Sara loved the movie “Mary Poppins,” so she dressed up as Mary from the “Jolly Holiday” scene. Isaac made a perfect penguin from that same scene, and having just learned to walk a few months earlier, he waddled down the sidewalk. We transformed Todd into Bert with a hat made from cardboard and by applying stripes to one of his sport jackets with masking and red electrical tape. After collecting candy at one house, Mary Poppins raised her parasol, and Bert held her other hand and helped her fly off the stoop.

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ALS News Today \ A photo collage of Todd and the kids dressed up as Mary Poppins characters for Halloween in 2010.

(Photos by Kristin Neva)

Todd’s legs were stiff and sore the next day. At that point, even minimal physical activity was exhausting for him, but we banked the memory. It felt like an accomplishment to experience the magic of ordinary living that weekend.

For Father’s Day when Sara was 5, about a year after Todd’s diagnosis, I helped her write a book called “Sara’s Stories for Dada.” I wrote down stories she told me about getting ice cream with Daddy and buying a feather sword at a Wiggles concert, and she illustrated.

Not knowing the timeline of the disease progression, I felt an urgency to document what memories we had time to make. I thought by now I would be showing them pictures and saying, “See how much Dad loved you.”

As it turns out, Todd has survived the disease for more than a decade, but every year is closer to a time when he will not be with us. I keep taking pictures, and I encourage Todd to write, because letters, photos, and videos are ways for his love to live on from the grave.

I asked my friend what helped her girls get through the death of their father to cancer when they were just 9 and 11. She said, “They knew their dad loved them.” After he died, they continued to live in his love.


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 Services, and are intended to spark discussion about issues pertaining to ALS.


Asit avatar


Your articles are inspiring . I wish you all the best for a cure soon out so you can watch life go back in reverse .. where Tood gradually goes back to getting up from the chair and doing what he used to do before the diagnosis.

Kristin Neva avatar

Kristin Neva

Thank you!

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