Remembering those loved and lost...
For the families that have endured the relentlessness of ALS, the anniversary of a loved one's passing is never without its yearly devastation. Sabrina Johnson lost her father to ALS two years ago and shares with us her feelings toward the month of March, a time marking the space between when she last saw her father and now. Sabrina's beautiful words document a brief part of her story, and how she'll celebrate her father for years to come.
Remember being in a brand-new relationship and celebrating monthly anniversaries as if every 30 days you had conquered the world together? Those were the days. Every month you’d decorate the day on your calendar with bubbling excitement just to make sure you wouldn’t forget the date. Anniversaries meant something completely different before I lost my dad to ALS.
Growing up, March was a fun month. St. Patrick’s Day, the start of spring, a week off school—the whole world seemed to change in March as the weather in the Midwest went from freezing cold to ‘I actually don’t mind waiting at the bus stop'. March also came with longer days, the sun shining, a glimpse of green grass, and blue skies ahead. March came with hope.
It was March 2019, however, when everything changed. It no longer came with that same sense of hope as it did for so many years prior. It became a month that stung a little every time I would turn my calendar from a happy February celebrating both of my son's birthdays to a heavy, dreaded March.
At the time, my husband and I packed up our four-year-old and our newborn son to stay at my childhood home with my parents, knowing our time with my dad was limited. I left the house tearfully with the understanding that I would not be returning until my dad passed away, his ALS fight coming to an end. We drove the hour and a half, something I did each week after my dad was diagnosed. Life as we once knew it was disappearing, conversations changing from have to had and is to was. Past tense was about to be our new normal. Before turning thirty, I would go from the girl with a sick dad to the girl without a dad at all.
We walked into my childhood home, the house that now felt so heavy with fear of the unknown. The family room, a room that used to feel like the largest in the house, was now filled with machines, poles, and a power wheelchair. Over the years I spent endless hours hanging out with friends there, but it shifted to a space designated for the toughest conversations and a constant reminder of the black cloud of ALS.
March 17th is the anniversary of my father’s passing, it’s no longer St. Patrick’s Day, but the day I try and skip over the memory of watching my dad take his last breath. That day marked the beginning of a year we’d compare everything to; the first month without, the first holiday without, the first year without.
When March 17th gets too heavy on my heart, I think back to the night prior. Soon after his passing, March 16th became one of my favorite anniversaries to celebrate. Over 15 people came and went that night, family gathering in my parent's home to tell stories, swap memories, play my dad’s favorite meaningful songs, and laugh. We laughed in ways we had not done in a long time, and for the first time in quite a while, we were able to talk about him as Tony: amazing man, father, brother, and friend. He may have had ALS, but ALS was never him. It is exactly how I want to remember him, with those stories, those songs, those laughs. ALS is three letters, three little steps in a person’s life, and while those little steps might be the steps that take a person from our lives, they are not the reasons we should hold on to for life.
Anniversaries are going to come and go. Days on the calendar will constantly change, and some days will stand out more than others. I’ve chosen to celebrate this year’s anniversary by remembering that before every March 17th is a March 16th, and that sometimes you need to play music, tell stories, and laugh with those dearest to you. Hard days will come and go, but how you choose to remember them is up to you.
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