What’s Next

By Laura King Edwards

It was a bright hot day in July, and it began full of promise. I was a newlywed and a new homeowner and had a great job. I was the happiest I’d ever been.

The phone rang three times before I answered it. Sometimes I wonder how different my life could have been, had I not taken that call or gone to be with my family in its wake or even moved home to Charlotte after my college graduation.

But I did. On July 24, 2006, I went home to the house where I helped raise my baby sister for the first few years of her life, and I held my parents and I cried and I tried to make sense of watching Taylor die.

My sister didn’t even look sick.
For a long time, I had a lot of questions for God. Why her? Why me? Why us? Taylor hadn’t yet celebrated her eighth birthday, yet she was the first to figure out that the only question worth asking was, What next?

Doctors told us not to bother fighting Batten disease, but they didn’t know my sister. And I think anyone in my family would tell you they take their cues from her. That’s why we’ve been asking What next? for 10 years, even after we understood any miracle wouldn’t happen in time for Taylor. We’ve kept going when even our closest friends urged us to quit.

We have an opportunity to make a real, lasting difference, and today, a decade after the diagnosis, we’re more resolute than ever. Because Taylor wouldn’t quit, and we understand what’s next: making sure families like ours never, ever have to fight this fight again.

 

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2 Comments On “What’s Next

  1. Ricki Lewis Reply

    What a terrible anniversary and what a wonderful family. Taylor’s legacy will be to save others. You are making it happen.

    1. Member Laura King Edwards Reply

      Ricki, thank you for being such a wonderful advocate for all rare disease patients and a great friend to me. We WILL beat this disease for future Taylors. I believe.

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