Honoring holiday traditions during and after life with ALS
How my late husband, Jeff, made Christmases special
One of the things I cherished most about my late husband, Jeff, was his love of the holidays.
From the year we began dating until our last Christmas, before he died from ALS in 2020, Jeff made the holidays special. During this season, he exuded a childlike glee that didn’t always match his outwardly tough persona. I found it charming and sentimental.
Jeff loved creating warmth, literally and figuratively. Before ALS, he always had a scented candle burning in our kitchen, and on many cold nights he would build a fire in our wood-burning fireplace. It was both physically and emotionally comforting, and these habits, which he’d been doing long before we met, helped us establish a feeling of home together. I savored our uneventful nights by the fire, eating homemade guacamole, playing with the dogs, and reading or watching television.
Jeff was similarly and appealingly domestic when it came to the winter holidays — in our case, Christmas. When we first met, it was hard for me to square this big, hulking federal agent with the sweetness with which he approached Christmas, and my early love for him grew after our first holidays together. He decorated a beautiful tree, hung Christmas lights, and delighted in choosing thoughtful gifts for his family, including his adult son and daughter. As I write this, I’m glancing at the first Christmas gift he gave me: an iridescent string of small, white pearls.
From left, Juliet Taylor, Jeff Sarnacki, and Makelle Sarnacki enjoy a walk with their dogs on Christmas in 2019. (Courtesy of Juliet Taylor)
We shared many similarly happy Christmases together before his ALS diagnosis in 2018, but only two after that, because his progression was fast. During our first Christmas living with ALS, Jeff’s symptoms were mild. That year, he cooked hearty meals and we decorated the tree together. His adult kids and their mom joined us, and we recorded storybooks for his kids so that they — and their future children — would have a memory of his voice, which was already faltering.
Our last Christmas Day together, in 2019, was bittersweet. We’d just moved and our house wasn’t fully set up. Jeff’s ALS was advanced, and he could no longer walk or speak. Yet, we were determined to make it meaningful.
It was unseasonably warm that day in Maryland, and we took a long walk in the woods on a paved local trail. We played Christmas carols and basked in the sweetness of home. Jeff had ordered his daughter and I matching pendants that we could wear together to stay connected after his death, which we have indeed done.
Navigating the holidays after a loss
As anyone grieving the profound loss of a loved one will know, the holidays become very different after the loss of your person. Jeff died in 2020, and each Christmas since makes me yearn to recapture some of the wonder he brought, while living with the reality that he’s physically no longer here to share this time together.
So I try, incrementally each year, to evoke the sweetness of our Christmases together. I put up a tree and hang the ornaments we each brought to the relationship, taking special care with his and reflecting on what they meant to him as I place each one. I play music, burn candles, and enjoy the company of people I love. I send family Christmas cards even though my current family Christmas photo has three four-legged members and just one two-legged one.
Juliet Taylor and her four-legged family members during the 2024 holiday season. (Photo by Amy Jacobs of Equus Images)
At the same time, I allow myself sadness. Yesterday, I sang along with the Carpenters’ “Merry Christmas, Darling” in the car and cried, somehow realizing for the first time that it’s a beautiful, if heartbreaking, message about longing.
During the first holiday seasons after Jeff died, it was tempting to let the inertia of grief take hold — and it was OK when it did. As time goes on, I am finding more joy in reclaiming our traditions. Jeff left me many gifts, not just around Christmas but around living overall. We introduced each other to new ideas and experiences, and Christmas was one of his most significant to me. He added warmth to my life, and left me a path for claiming that going forward. It’s cliché to say, but I know that’s what he’d want me to do.
I find that there is much pressure on people to feel and behave in celebratory ways during the holidays, but it is a tough season for many who are either living with ALS or experiencing ALS losses. If and when the time feels right, celebrating and honoring those we love and continuing their most meaningful traditions can be a beautiful way to remember them.
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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Fran Finney
Juliet, I really appreciate the balance in your thoughtful article. My husband Hal also lived with ALS, and also is not longer with me.
Hal was first diagnosed in 2009. He chose to have a tracheostomy in 2011, and per his choice, continued to live at home. I was his caregiver, my only helper being our son, who left college to help care for his Dad. We lost Hal in 2014.
Although it has been 10 years now, holidays are still bittersweet for us. I remember the happy, good times, and it makes me smile. But at the same time those sweet memories bring back the sadness I still feel over loss of my life-mate. My son also celebrates and grieves the specialness and loss of his father..
Like Jeff did for you, Hal introduced me to many new ideas and experiences. Those things I will never lose. Holidays may always e bittersweet, but they will never be not special.
D Hop
Thank you, sweet friend.💙
Caroline Tredway
Juliet, Another heartfelt column that I so appreciate. I think your family Christmas card is just beautiful! Love to you on this holiday, Caroline