Finding a Way to Embrace the Joy of the Season
A columnist finds strength in the memory of her late sister
I’ve always loved the Christmas season. But Christmas, like other holidays, can be hard because it delivers a stark reminder of what — and whom — we no longer have. And I can’t help but think about the fact that this will be my fifth Christmas without my sister.
Taylor was 20 when she succumbed to CLN1 disease, also known as Batten disease, in the fall of 2018, well over a decade after her diagnosis. By the time she died, she had gone many years without seeing Christmas lights or watching a performance of “The Nutcracker,” her favorite December tradition. More recently, I’d struggled to shop for a girl who couldn’t walk, talk, see, or swallow food.
As was her nature, Taylor always found a way to embrace the joy of the season, including:
- Until she received a G-tube, she sipped decaf lattes on cold days.
- She listened to classic holiday movies on DVDs, all labeled in Braille.
- She continued going to “The Nutcracker” at the Blumenthal Performing Arts Center in Charlotte, North Carolina, long after losing her vision; when the orchestra played the first notes of “Dance of the Sugar Plum Fairy,” my sister’s smile lit up the darkened theater.
- She knew how to operate a set of four angels programmed to sing Christmas carols in sync.
- She loved listening to the joy of others during the opening of gifts.
Taylor understood the true meaning of Christmas. She found joy in the simplest moments. She sprinkled a little magic dust on our family, bringing us closer together in the midst of a long, unspeakable tragedy. And when she died, some of the magic died with her.
Losing loved ones is a part of life, and at some point, everyone is forced to face an empty seat at the dinner table. But losing a loved one so young, to such a cruel disease, is simply unnatural.
Looking for magic
I haven’t had an easy year. 2022 began for me with a difficult ankle surgery and months of recovery. I’m overloaded at work and often too tired to write at night. Though in good physical condition, I’m still working to rediscover my running form.
Like many working mothers, I sometimes fall into bed worrying that I fell far short of perfect in both of my “jobs.” Meanwhile, I’m constantly frustrated by the fact that families fighting CLN1 disease still have no meaningful treatment options — even after our charity, Taylor’s Tale, moved mountains to move science in the right direction.
Maybe that’s why, in these final few weeks of the year, I’ve often caught myself thinking of Taylor. And looking for signs, however small, of her special brand of magic. Much like she did in life, she has a way of making good things happen right when her big sister needs her most.
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.