Decorating for Christmas Feels Like an Antidote to the Sadness of ALS

I feel compelled to seek out beauty and create a warm home, perhaps partly as an antidote to the difficulties we experience because my husband, Todd, has ALS. In a way, choosing to celebrate feels like a revolt against this devastating disease.

A little over a week ago, I finished filling orders for wreaths I make and sell during the holidays, and then I went into decorating mode.

I hung one of my wreaths on an outside door. My son, Isaac, and I cut down a 14-foot-tall balsam fir in the woods near our house and dragged it home across the snow. We placed the top 8 feet of the Christmas tree in its stand in the living room. Isaac and his sister, Sara, helped me decorate it with lights, beaded garland, and ornaments.

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Isaac set up a Nativity scene of hand-formed clay figures atop a bookshelf. On the other side of the shelf, I placed a Santa figure that my beloved aunt made from wood, burlap, leather, and wool. I strung a rope along the front of our bookshelf and hung stockings from it.

Decorating for Christmas. (Photo by Kristin Neva)

After finishing up in the living room, Isaac and I decorated Todd’s office. He likes to have garland hung from the top of his window and a single, large bulb dangled from a ceiling track for an overhead lift.

I also filled several vases with Fraser fir branches from our yard, along with balsam, pine, and cedar I collected alongside the ski trail. On the trail yesterday, I picked more pine sprigs that caught my eye. I arranged them along with red berries in a narrow glass Mikasa vase. Today, I noticed some pretty cedar. I clenched a fistful of it around my ski pole as I made my way back to my car. I added it to the arrangement. Our home is beginning to look a lot like Christmas.

In many ways, I feel left out of life because leaving the house is too hard on Todd, who is paralyzed and has breathing difficulties. But I don’t feel left out of Christmas, when many of the traditions center around life at home. So even with ALS, the holiday feels somewhat normal.

I’m thankful Todd is still with us this holiday season. On Christmas Eve, we’ll open gifts with my mom and my brother, who is visiting from out of state. My cousin and his wife will join us for dinner on Christmas Day. We’ll play Scrabble and other board games that Todd can play with minor adaptations, and we’ll all watch a Christmas movie.

We cherish the beauty of the season, the garlands and greenery, and the love and laughter in our home.

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