This will be my last post of 2020. But instead of wailing that the new year can’t possibly get here soon enough, I want to end a tough year on a high note. To infuse these troubling times with a touch of optimism, at least in the tiny corner of the world housing this column. To hail the promise of big things for the Batten disease community in 2021.
Think about why you celebrate New Year’s Day. Hey, you made it through another 365 days! Maybe you even accomplished some of those resolutions you committed to keep before you started 2020’s troubling trip around the sun.
I hope you achieved at least some of your goals in the last 12 months, but I also hope you paused to watch the world turn. To watch your child’s face crinkle at the sound of a song she likes, or hear her laughter on the wind. To embrace the simplest moments rather than missing them as you hustle and hurry and whisk on by. After all, consider how easily a few minutes becomes a few hours becomes a few days becomes a few weeks — the frighteningly fleeting nature of time when we while it away.
This will be my third Christmas and New Year’s without my sister, Taylor, who died of CLN1 disease, or Batten disease, shortly after her 20th birthday in 2018. In some ways, the holidays have been hardest this year. Here and there, physical memories of my sister have surfaced if only to remind me of what’s gone, like the lonely charcoal eyes and carrot nose of a once-regal snowman in the sun’s melting glow. The singing angels she once loved that now belong to my son. The homemade Christmas cards, still dusted with fake snow. The cookie cutters she once held in the palm of her hand. The blankety-blank Facebook memories. The impending gene therapy clinical trial that has her fingerprints all over it but will come far too late for her.
In other ways, however, this holiday season has felt particularly magical. Working from home, I’ve spent more time with my family. Traded treadmill workouts at night for outdoor runs first thing in the morning. Eaten lunch 10 feet from my Christmas tree, its white lights twinkling in the midday sun. Watched my son grow old enough to appreciate the things we have (each other) as well as the things we’ve lost (our dog). Stayed healthy (knock, knock).
I’m grateful for these things I have. I’m grateful for my sister, who taught me to appreciate them by living her own life that way.
It’d be so easy to drown in 2020’s last gasping breaths. To pound the fast-forward button till our fingers go numb. But it would be unfair — reckless, even — to pretend this year never happened. Because though 2021 may hold the promise of better days, we could never realize that promise without walking the path from here to there.
Note: Batten Disease News 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 Batten Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Batten disease.
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