‘Once Upon a Time’ Becomes ‘Once When He Still Could’

‘Once Upon a Time’ Becomes ‘Once When He Still Could’
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My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives.

Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then invited us to sit on the property of his oceanside mansion and wave at passersby as if we were living the dream life.

On either side of my window, I have framed photos of our two kids from when Sara was 3 and Isaac was a newborn. The photos were taken on the back patio of our 1925 bungalow in Racine, Wisconsin. Todd laid the brick pavers himself, and he was restoring the house room by room to its original craftsman charm.

On another wall hangs a hand-painted wooden heart that I purchased at an art fair in Siesta Key, Florida, two months before Todd’s ALS diagnosis. It had been a part of our daughter’s room décor, but at 14, she’s outgrown it. A border of flowers surrounds the words “Once Upon a Time.”

Wooden heart. (Courtesy of Kristin Neva)

Once upon a time, we built castles of white-sugar sand on the Gulf of Mexico with our young children. We imagined a bright future and a life of possibilities.

Once upon a time, we had a life before ALS.

Or rather, before my husband had ALS, we had a “once upon a time” life loaded with possibilities and an expectation that our story would end “happily ever after.” Joy before ALS was grounded in delight of the present and anticipation of the future.

I sit in my office, remembering those days before the diagnosis.

In the rest of our home, we have a variety of wall décor, some acquired after ALS. Those are also precious, each in a different way.

In the hallway, I have a fabric wall hanging a dear friend made for me after Todd’s diagnosis. It features hand-stitched lyrics from the hymn “Be Still My Soul,” and was a gift of support during such a difficult time. Seeing it reminds me of the pain I felt in those dark days. It also brings back memories of my friend’s love.

When is love greater than when providing comfort to those who suffer?

In the master bedroom, there are framed photos that Todd took on a wooded trail at Michigan’s McLain State Park, when he could still walk. They are treasures because they have Todd’s signatures on the mats. He can’t handwrite his signature anymore. He has to use a stamp.

A nautical chart of Lake Superior hangs in our living room. Todd had met an officer from the U.S. Coast Guard Station Portage and asked him if he could give our family a tour. Todd struggled to walk at the time, so he didn’t feel safe boarding the 47-foot Motor Lifeboat. The kids and I explored the boat while Todd sat in a manual wheelchair on the dock. We all went into the building, where an operations specialist gave Todd the map as a souvenir. It shows depths in fathoms on a grid of latitude and longitude. I had it framed for Todd’s birthday six years ago.

We try to delight in the present, because life with ALS only gets harder. I no longer bank “once upon a time” memories with our eyes set to the future; instead, my memories since he’s had ALS are framed with “once when Todd could still …”

Once when Todd could still board a plane, we took one last trip to California.

Once when Todd could still transfer into a bed, we visited his parents’ lake house one last time.

And now because Todd can still get outside in his wheelchair, my mother took a family portrait of us in a field.

The framed family photo hangs on the wall opposite the “Be Still My Soul” lyrics. Every year, I insert a new photo, wondering if it will be the final framed picture of our family.

The Neva family. (Courtesy of Lani Siirtola)

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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.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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2 comments

  1. Debbie Zolnierowicz says:

    I read your column as I was fighting back tears after a conversation with my husband. He was diagnosed 6 months ago, and we are still in the “transition” phase of our journey. We will be selling our house soon, and with the inventory so low due to the pandemic, I am doing a lot of the “leg work” to look for our new forever home.

    Our dream was to retire to Vilas County Wisconsin, in the Northwoods, not too far from you (of course that’s relative 😂). I still cannot talk about “the future” without thinking of the plans we had. Tonight I let the tears slide – not crazy sobs, just didn’t fight them back.

    Your column reminded me that I’m not alone and that we still have a lot of adventure ahead. Thank you for sharing so openly.

    • Kristin Neva says:

      Thanks for your comment Debbie. As hard as it has been, there have also been many good times since the diagnosis. I need to keep reminding myself that as things get more difficult–there is still good left. I hope you find your new home.

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