My Sister Is Gone, but She’s Still Teaching Me to Live in the Moment

Batten disease took my sister from me, but it didn’t take her love for life. Now, more than two years after her untimely death at age 20, I think a lot about the lessons Taylor could teach those of us struggling with anxiety and uncertainty as the coronavirus pandemic endures.

My family tried living in the moment for a long time after Taylor’s diagnosis of CLN1 disease (Batten disease) on a sticky summer day in 2006. We walked Disney World’s magical streets and explored Space Mountain’s shadowy world before her eyes stopped working. We cuddled an entire litter of bichon puppies and even took one home. We ate ice cream cones by the fountain, creamy vanilla and rainbow sprinkles dripping onto our fingers.

Though we founded our nonprofit organization, Taylor’s Tale, determined to save my sister’s life, we understood after a few years that we wouldn’t succeed, at least not as originally intended. I can’t count the times I thought about early expiration dates and lost years on solo runs and tear-streaked nights in front of a glowing computer screen, the words flowing freely while the answers eluded me.

We never told Taylor the whole truth: that kids born with Batten disease mostly die young. But somehow, she knew. She knew she wouldn’t have a first kiss or a first day of college. A first dance or a first day at work. A first house or a firstborn. Answers eluded me, yet life eluded my sister.

But instead of wringing her hands and asking, “Why me?” Taylor simply asked, “What now?” She lived every day like it was her last, but not in the manner you might imagine. Instead, she savored the simplest experiences. My parents’ home became her Cinderella’s castle. The sterile hospital bed that eventually replaced her four-poster bed became a haven for well-loved animals, special songs, and favorite fairy tales. After the feeding tube, a tiny taste of vanilla bean on the tip of her tongue recalled those long-ago ice cream cones.

My life in 2021 looks much different: No Taylor. No races (at least not real ones). No travel. No fundraising events. No in-person book readings or signings. No live talks. No going to the office where I work in content marketing. No going past the tiny lobby at my son’s school.

In place of it all? Thousands of solo miles run, hundreds of thousands of words written, and many, many meetings on Zoom.

As this odd time drags on, I continue to appreciate the casual dress and more relaxed mornings, yet I find myself growing more weary here in the middle of February, the shortest and, in my corner of the world, coldest month.

Maybe that’s why Taylor chose this time to dominate my thoughts and dreams. To fill my head and heart and soul with the memories signifying all we had and all that’s good. To save me from that old struggle of trying to squeeze every last drop out of every second while those seconds become first minutes and hours, then days, months, and years. To show me the moments that matter so life won’t pass me by.

Batten disease took my sister from me. But it can never take what she taught me.

It can never take what we had.

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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.