The following is seventh in a 12-post series.
At one time most of my friends could hear the bell, but as years passed it fell silent for all of them. Even Sarah found that one Christmas she could no longer hear its sweet sound. Though I’ve grown old the bell still rings for me, as it does for all those who truly believe.
-Chris Van Allsburg, The Polar Express
Tuesday will be Taylor’s seventh Christmas since doctors diagnosed her with Batten disease.
No matter what Batten disease throws at her, my sister still finds joy in the simple things. Her eyes, though blind, light up when she hears the voices of the people she loves and the notes of her favorite Christmas carols. Today, she visited Santa Claus. This weekend, Mom and I will honor our annual tradition of taking her uptown for the Nutcracker Ballet. Taylor will sit on the edge of her seat, one ear turned toward the stage. She knows the notes of every song; at one time, she sang along.
Batten disease has stolen much of what I remember about the little girl with the long, honey-blonde hair and caramel eyes who used to bounce around our family room in pink flannel pajamas and bunny slippers on Christmas mornings. But it hasn’t stolen her joy for the season or her joy for life. Despite her disease, the bell still rings for T.
That gives me reason to believe.