The Beacon

A cold rain is falling from a black sky. The slick roads are plastered with wet leaves that burned with the fiery crimson, yellow and orange of a North Carolina autumn for just a short while before an angry wind whisked them from their branches.

I’m not ready for winter, but it’s here, ugly and mad.

One cold, bright day last winter, I told my mom I needed to quit Taylor’s Tale for awhile. Remembering that moment now, I don’t know what I meant, and I’m not sure I ever really did. I uttered those words in the middle of a journey around an indoor track with no shortage of directional signs. But I’d still lost my way.

I never quit Taylor’s Tale, after all. Mom gave me an out, but I didn’t take it. Instead, I picked up my boxing gloves and threw myself back into the ring. I kept writing, and I kept fighting.

Capitol building

I thought Batten disease was killing me, but I was wrong. It’s killing my sister. And I can’t let it get away without a fight.

I stuck around, and since that day on the track, I’ve watched Taylor’s Tale partner with other non-profit organizations to help develop a possible treatment at the UNC Gene Therapy Center, endorse important legislation for the millions of Americans fighting a rare disease, speak to members of Congress and a regulatory committee of the National Institutes of Health (NIH), and tell stories that have reached the far corners of the globe.

blindfolded runSince that day on the track, we’ve earned a lot of victories, but Batten disease has kept winning, too. Last weekend, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor Taylor, who ran the Thunder Road 5K after losing her vision in 2008, and support the fight against Batten disease and other rare diseases. From the moment I decided to run the race blind, I dreamed of wrapping Taylor in a hug at the finish line. But my sister was in no condition to join us on the morning of the event. Thunder Road marked one of the most incredible experiences of my life, and I’ll never forget it. But hanging my medal around her neck at my house hours later and seeing her face light up was just as special.

In two days, I’ll see Taylor again for the Thanksgiving holiday. Batten disease has a powerful effect on a family; if you’re not careful, it can take everything that’s good in your life and rip it into little pieces. It’s the world’s worst diseases all rolled into one, and it’s been busy with my sister in 2013.

And yet…

I’m thankful.

Taylor with medalI’m thankful for my time with my sister, whether it lasts 15 or 50 years. I can’t change the fact that my sister has Batten disease. I can hope that tomorrow won’t come, but I know it will, like the rush of water behind a dam that’s about to burst, or the licking flames of a fire that has already started to spread. And yet, I can recognize the beauty in her smile, the courage in her laugh and the warmth in her hug. I can accept each new day we’re given with Taylor as a day some people aren’t blessed enough to have with the people they love. I can feel encouraged by all of the progress that has been made because my sister’s story is powerful and people are good.

On my dark days, I can feel angry at Batten disease and know it’s okay to hate something that’s stealing somebody I love. I can channel that energy into saving lives. In that way, I’m thankful for the anger, too. My anger is always conquered by my love. And my love for Taylor is a bright beacon, lighting my way.

What are you thankful for?

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2 thoughts on “The Beacon

  1. Well said….I hate Batten disease too and what it’s taking away from our family as well…but I am Thankful for that moment we have with Joey and will continue to hope for a cure for us and all the other Batten children around!!!!

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