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A few weeks before Christmas Day in 2018, my late husband, Jeff, and I sat side by side on the edge of our bed, preparing to create the most meaningful Christmas gifts we’d ever given.
Laid out beside us on the bed were four children’s storybooks, each with a Christmas theme and an embedded recording device. I held each book and turned the pages as Jeff’s wavering voice read aloud the verses to &#8220;&#8216;<a href="https://www.poetryfoundation.org/poems/43171/a-visit-from-st-nicholas" rel="nofollow">Twas the Night Before Christmas</a>&#8221; (actually, &#8220;A Visit From St. Nicholas&#8221;) and three other stories, preserving his gently spoken words for future generations. The books were meant for Jeff’s two adult children, and more specifically, for their eventual children.
Weeks earlier, Jeff’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> had been confirmed via a second opinion at the <a href="https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/als">Johns Hopkins ALS Clinic</a> in Baltimore. The weeks after his terminal diagnosis were traumatic for both of us as we’d tried to absorb the news and support each other while reeling from shock and sadness. As Christmas approached, though, we were forming a plan for how we wanted to go on with living.
The recorded storybooks were a meaningful and poignant start.
[recommended-reading id=83835]
<h3>A master of Christmas</h3>
As a <a href="https://pubmed.ncbi.nlm.nih.gov/26860749/">heterogeneous disease</a>, no two cases of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> are exactly alike, and all individuals and families experience ALS differently. In our case, the faster-than-anticipated waning of Jeff’s <a href="https://scienceline.org/2020/05/finding-your-voice/">voice</a> was the most devastating <a href="https://alsnewstoday.com/symptoms-of-als/">symptom</a> of his illness. The speed with which his voice had begun to falter had taken us both by surprise. For all I’d read and learned about ALS to that point, somehow this particular symptom seemed grossly unfair.
Our niece Stephanie was aware of our sadness at this development. A mom of two young girls, she suggested to me in a text message shortly after Jeff’s diagnosis the idea of <a href="https://www.amazon.com/s?k=recordable+storybooks&amp;adgrpid=1335907190983589&amp;hvadid=83494438623543&amp;hvbmt=be&amp;hvdev=c&amp;hvlocphy=91172&amp;hvnetw=o&amp;hvqmt=e&amp;hvtargid=kwd-83494540527046%3Aloc-190&amp;hydadcr=22561_13494450&amp;tag=mh0b-20&amp;ref=pd_sl_780cyxv9lp_e" rel="nofollow">recordable storybooks</a>. I instantly loved the thought of preserving his voice for future generations and ordered the books, dozens of which are available online, to give to Jeff’s two adult children as Christmas gifts.
<figure id="attachment_88643" aria-describedby="caption-attachment-88643" style="width: 265px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-88643" style="margin-left: 10px;" src="https://alsnewstoday.com/wp-content/uploads/2023/12/als-column-image-christmas-2018-449x800.jpg" alt="A balding man who looks to be in his 60s stands with his arms around two women - his daughter to his right and his wife to his left. The three are standing in front of a giant artificial Christmas tree decked with ornaments and white Christmas lights. They are in a large room in a house, with wooden floors and big, wooden French doors that are open behind them and the tree. " width="265" height="472" data-wp-pid="88643" /><figcaption id="caption-attachment-88643" class="wp-caption-text">Jeff Sarnacki, center, his daughter, Makelle, left, and wife, Juliet Taylor, celebrate Christmas in 2018, shortly after Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
This gift was fittingly sentimental, as Jeff was a master of Christmas, each year revealing a softer side that he often didn’t publicly show. He took great pride in creating a beautiful home for the holidays, setting up a tall artificial tree that we’d always decorate together with meaningful ornaments from his past, my past, and our current life together.
On that Christmas in 2018, he went all out, hanging lights and stockings and other trimmings to make the house cozy, warm, and festive. We were celebrating a small Christmas at our home that year, hosting both of Jeff’s kids and their mom. He and I had traveled for Thanksgiving, and we both wanted to stay home in Maryland to enjoy the holidays at our rented farmhouse in Annapolis, a place we loved and where we’d gotten married just two months earlier.
Everything felt more weighty and special that year. We were keenly aware of the importance of each moment.
We presented the recorded storybooks last, after other gifts had been shared. The room was initially silent as his kids opened their books and Jeff&#8217;s voice, preserved in the pages, filled the room. It was a peaceful and beautiful moment. Stephanie’s suggestion had been wonderful — a home run.
I miss Jeff every day, and on many days, what I find myself missing the most is his voice. Our home is quiet without him. He used to routinely walk around the house singing me a 1970 Bobby Sherman song called “<a href="https://www.youtube.com/watch?v=pErPOB350a8">Julie, Do Ya Love Me</a>.” Together with his brothers, he’d invent nonsense words and use them in daily conversation, making me laugh each time I overheard them. And his voice was resonant and reassuring over long breakfasts at “our” table at a local diner when we lived in Michigan, where we’d linger over black coffee and talk about the future.
It surprises me how much I miss that voice, so personal and individual that it was like a fingerprint. While photographs make it easy to picture his face, it gets harder over time to remember how he sounded. I think, in retrospect, that’s why the storybooks were such a beautiful gesture. We couldn’t have known at the time how important they would be.
I have no regrets about how we lived during Jeff’s time with ALS. We surrounded ourselves with love, family, and friends. We traveled, made memories, established traditions, and embraced every day. If I had it to do over again, though, I’d take more video, record more storybooks, and save more voicemails. I hadn’t appreciated how comforting a voice can be in a loved one’s absence.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Preserving a loved one’s voice can be the sweetest holiday gift

Thinking of gift ideas for my husband, Todd, has always been a challenge — especially since he&#8217;s been paralyzed by <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Some of my gifts to him haven’t gotten much use, like a heated jacket that he found too hot. He used it a couple times when we went to <a href="https://alsnewstoday.com/columns/living-life-precautions-virus-exposure-coronavirus-compromised-immune-system/">hockey games</a>, but he&#8217;s not otherwise out in the cold for an extended period.
Nevertheless, I have discovered some winning gifts for Todd, including:
Oversized, long T-shirts keep the bottom of Todd’s back warm while he’s in his <a href="https://www.youtube.com/watch?v=lCFNl7GXivw">wheelchair</a>, and they are more comfortable when he’s being turned in bed at night. Todd is a man of average height, and if he were standing, he would fit nicely in a standard large shirt. But shirts have a tendency to ride up in the back when one sits, so long shirts work better for Todd. Having the shirts oversized makes them easier to get on, and they don&#8217;t bunch up around his armpits when he’s being turned at night.
I purchased <a href="https://www.duluthtrading.com/s/DTC/mens-longtail-t-relaxed-fit-short-sleeve-t-shirt-76020.html?color=KCC" rel="nofollow">Duluth Trading Company’s Longtail T</a> shirts online. They are made with quality fabric and are the only shirts he wears.
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Small, light blankets cover Todd’s legs when he’s in his wheelchair. My daughter and I found several light blankets at Walmart, and he uses them nearly every day to cover his bare knees and lower legs. Years ago, Todd switched to using moisture-wicking shorts because they keep his bottom dry and prevent skin breakdown. If he goes out of the house, which is rare these days, we put on <a href="https://www.youtube.com/watch?v=-ZdL4eV_-9g">snap-up pants</a>. But he typically stays at home in his gym shorts with a lap blanket over his legs.
A <a href="https://www.menshealth.com/uk/fitness/g30053936/best-massage-guns/">massage gun</a> keeps his muscles relaxed. While breaking from the theme of keeping Todd warm, this gift is still about comfort. With ALS, <a href="https://alsnewstoday.com/symptoms-of-als/#Muscular_symptoms">muscles get tight and spastic</a>. We found it helps to have Todd’s nighttime caregivers run the massage gun over his legs after putting him in bed. It helps Todd sleep, and it reduces the <a href="https://www.als.org/navigating-als/resources/what-do-fasciculations-or-muscle-twitching-mean">muscle fasciculations</a> he typically experiences during the day.
Remote dog treat dispensers are designed for working people who leave their pets at home, but Todd keeps the device a couple feet from his computer, where he sits in his wheelchair. Todd and his dog, Comet, are office mates, and Todd can independently reward Comet for being a good boy by using an app on his phone. I purchased a <a href="https://www.amazon.com/gp/product/B07QFZKJ21/" rel="nofollow">Wopet dispenser</a>, because it doesn’t require a subscription, and we fill the hopper with <a href="https://www.amazon.com/gp/product/B09M48YWJV/" rel="nofollow">Zuke’s mini treats</a>.
Chocolates with memories make the treats 10 times sweeter, according to Todd. For Valentine&#8217;s Day last week, I added sentimentality to the box of chocolates I gave him. I typed up and cut out a list of 26 memories and placed one under each chocolate, such as: “<a href="https://alsnewstoday.com/columns/rediscovering-music-memories-our-marriage-als-journey/">Our first date: Alison Krauss</a>,” “<a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">Caramel apples in Cedarburg</a>,” and “<a href="https://nevastory.com/roughing-it/">Taking the kids to the Science Museum of Minnesota</a>.” We are still working our way through the box, and he smiles when he asks me to give him a chocolate and a memory.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: gift

Preserving a loved one’s voice can be the sweetest holiday gift

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