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It will be my fourth Christmas without my sister. Taylor lost her life to CLN1 (Batten disease) in 2018, but mom still hangs her socks on her coat every Thanksgiving weekend. My son, Jack, keeps the spirit of Taylor’s beloved singing angels alive, carrying the haloed host everywhere from his rec room to the breakfast table. I have heard “Joy to the World” 47 times since December 1st, but I don’t mind that much.

It’s the season, and not just the Christmas season. Jack’s nursery school bases its lesson plans on weekly themes around current affairs, common topics, colors and letters. This month, Jack and his classmates colored a menorah, listened to traditional Diwali festival music, and danced to kwanzaa songs. Watching a video of 15 preschoolers bouncing to colorful Kwanzaa music, I couldn’t help but notice the air of innocence. Shameless acceptance. Genuine joy. I thought about how young children, unlike many adults, love each other unpretentiously. Despite their differences.

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This early maturity, of course, extends far beyond cultural and religious observances and politically correct seasonal vows. In fact, the experience of rare diseases mirrors it in many ways. I know, because I’ve watched him often at work in a life cut short by Batten’s disease. Students at my sister’s school accepted her struggle with Batten disease more easily than many parents and other adults, not just her close circle of friends; indeed, the entire student body loved and cared for Taylor, even when she could no longer communicate easily.

Their kindness was for her, not for her rare disease

Taylor has participated in several editions of the school’s annual talent competition, but the 2008 event remains the most memorable in my memory. It was scheduled for a cold February evening, the same month Taylor returned from Portland, Ore. With a shaved head and injection sites still healing, memories of a neural stem cell transplant that was part of of a clinical trial. I remembered the scene and the very different reactions children and parents had to Taylor’s shocking appearance, in my memoir, “Run to the Light.”

“The next day, she returned to school, where she learned that her friends had made her part of their routine for the next annual talent show, despite her long absence. Her friend Charlotte invited her in the afternoon to learn the lyrics of the song they would perform.

“On the night of the show, the girls wore matching t-shirts, plastic helmets and body sequins. Taylor was unable to join his friends on the makeshift stage for security reasons. Instead, she sat backstage, singing the lyrics to the song Cheetah Girls and snapping her fingers as the other girls performed dance moves for the families crammed into the cafeteria.

“While my sister and her friends went through their routine, two moms sitting behind me were talking in low voices.

“What did Taylor have?” Not cancer.

“How many school had she missed?”

“How kind of the other girls to include her. She looked different since the fall; maybe it was the hair.

Taylor’s hair grew back (although much thicker and darker than before) in the months following that night, but as Batten’s disease progressed, my sister’s differences became impossible to ignore. . In the years that followed, Taylor regained her hair but lost her mobility, her voice, and her ability to swallow food. But his friends never got cruel. The girls invited her to birthdays. I reserved a seat for her at the lunch table. Encouraged her to two arrivals at 5K. The boys took her to class. Asked him to dance. And those kindnesses, perhaps more than anything else, infused my sister’s eyes with some kind of magical light long after they had stopped seeing for her.

We could all bear to be a little more like children. During this holiday period and every day.


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