Twelve Reasons to Believe: The Bell Still Rings for T

Published: December 20, 2012  ~   0
By Laura Edwards

Taylor with Santa 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.

Help Us Believe this Holiday Season

Published: December 9, 2009  ~   0
By Laura Edwards

I just returned home to the East Coast after five days in northern California to discover that Christmas is less than three weeks away. I’m a little behind, as I haven’t begun shopping for my family and friends. As for me? I’m a little old to be making lists, and the last time I checked, Santa Claus does not follow my blog (unless he does so anonymously). Anyway, I only want one thing this holiday season, and if you’re reading these words, you can help – even if you don’t wear a fuzzy red suit and make a hobby out of climbing down chimneys one night a year. The one gift on my list is the same gift I’ve been asking for every night since July 24, 2006 – the day Taylor was diagnosed with Batten disease.

I want to find a cure for this rotten illness. I want to save my sister.
You can give the best gift of all – the gift of hope – by making a donation to Taylor’s Tale. I’m happy to report that you can even do your shopping online; our new website, launched earlier this year, offers secure donations via PayPal. Click here to make a gift now. Because we’re a 501(c)3 non-profit organization, all gifts to our organization are tax-deductible, and every gift made to Taylor’s Tale supports promising Batten disease research.

Taylor is at Duke this week for a series of tests while most of her friends are likely making their own wish lists and counting down the days till winter break. I sent my mom a quick email this afternoon to check on my sister. Her answer was short: “A trooper as always.” And that she is. I think about how much my sister has lost. No words of mine can describe what has been taken from her. And yet, all she’s asked me for this Christmas is a set of drums – my sister, the aspiring musician. I can find her a nice set of drums, but I want to give her more. She may not see it quite the way I do, but Taylor is an aspiring adult. How often do we, as actual adults, stop to consider how very blessed we are simply to have reached adulthood – to be alive and, more often than not, well? My sister, and a lot of other children like her, have never had that luxury. But in spite of all that has been taken from them, those aspiring adults are – and always have been – inspiring children. The noblest thing we can do as actual adults is help give them a shot.