The One who Lost the Most

By Laura Edwards

Some of my coworkers stayed late at the office tonight for their annual fantasy football league draft. When the email went out a couple of weeks ago, I considered joining in. I thought it’d be fun to show some of the guys this girl knows a thing or two about NFL football.

But I decided I couldn’t add one more thing to my plate, opting instead to live vicariously through my husband, who plays in two leagues (this past Sunday night, I shared my draft pick recommendations between working on a book manuscript and hammering out travel details for upcoming races).

The truth is that I’ve been “too busy” for a lot of things for most of my adult life. Fresh out of college, I moonlighted as a sportswriter in addition to working a full-time job in marketing and public relations, coaching a traveling soccer team and planning a wedding. The young adult novel I’d started writing my senior year languished on my hard drive, and I figured I’d finish it as soon as I got married.

A month after my wedding, Batten disease happened.

Suffice it to say, I never finished the young adult novel. At first, I blamed it on the plot line (one of the main characters is dying of brain cancer). Then, I blamed it on all of the other things that clamored for my time. I was just 24, with a good job, a new husband and a “five-year plan.” But suddenly, I’d joined my mom and a small team of volunteers on an inspiring but terrifying mission to build an organization from the ground up and challenge a fatal disease with no cure head on. I was the girl who said she’d never join the Junior League, but before I knew it, my calendar was filled with committee meetings and fundraisers. I was a lifelong introvert, but a few months after Taylor’s Tale was founded in my sister’s honor, I was speaking to crowds.

The struggle for balance is never-ending. I used to worry that if I shut down my laptop too early on a weeknight or gave myself the day off, I was shorting my sister a chance at survival. I don’t do that anymore, but I do think about how much we can do as a society to build a better future for the millions like Taylor and how much we’re NOT doing. I think about how I can be the very best advocate for the rare disease community and the very best big sister to Taylor. I do worry that at times, I’ve been a better advocate than a sister. I know that while I “gave up” a lot of my 20s and early 30s, I made that decision on my own – and I’ve still managed to have a pretty great life, though I’d like to get more sleep occasionally.

These past eight-plus years haven’t been easy, and I’ve learned a lot of tough lessons, the toughest of which may be this:

I’m not the one who lost out, because I’m not the one who got Batten disease. My sister did, and she’ll never have many of the opportunities or experiences I’ve been blessed with. But she’s taught me more about life than I could ever hope to teach her.

Taylor eating a cookie

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10 Comments On “The One who Lost the Most

  1. kristin horner Reply

    wow!
    i am speechless!
    again, wow!
    what great insight . . . there is so much love and passion in your writing. you can tell it comes from the heart.
    don’t beat up yourself . . . she knows you love her! she can feel it!
    what a gift!

    1. Member Laura King Edwards Reply

      Thanks so much, Kristin. Taylor’s easy to love. I found this picture of her tonight, and it just made me think about how much has changed – and how much has been stolen from her – in the years since the diagnosis. I’d give anything to see this smile or hear her sing or watch her run down the street again. I wish I’d known how much those things mattered before they were gone. It makes me think twice before I consider what I’ve “sacrificed.” I have it pretty good.

  2. claresa Reply

    Those tough lessons aren’t easy to digest sometimes, but don’t be hard on yourself. I don’t think a sister who has done all you’ve done couldn’t be anything but great.

    1. Member Laura King Edwards Reply

      Thanks for your kind words, Claresa. I think there are a lot of ways to show love for someone. I know I’m only human, but I still wish I’d done some things differently. I wish I’d spent more time with Taylor when she could take a long walk with me or I could take her out for ice cream. I got wrapped up in “the fight,” and I always thought I’d have tomorrow. But I cherish every moment we have together. I think we learn new ways to find beauty when things are taken away.

  3. Debbie @ Deb Runs Reply

    I’m sure if Taylor could, she’d tell you that you’re the best big sister a girl could ask for!

    1. Member Laura King Edwards Reply

      Thanks so much, Debbie. I think Taylor is the best little sister a girl could ask for!

  4. Julie Siebel Reply

    Laura,
    We never truly understand our own journeys until we are so far into them that they become part of who we are. From one “big sister’ to another, I can’t imagine how you would have lived your life any other way. My family hasn’t been challenged nearly to the depths that yours has, yet I know, without a doubt, that if we had, I would have taken the same path you have opted to accept as yours.

    Thank you for being there for Taylor and for your Mom. And while you may never have joined the League, you were clearly the beneficiary of our leadership development training as a teenager. You are, without a doubt, a catalysts for lasting community change. Our loss is the world’s gain.

    Your advocacy has brought a voice to this horrible disease and giving Taylor a voice, long after her own has left her!
    -Julie

    1. Member Laura King Edwards Reply

      Julie,
      I have read and reread your note several times, trying to determine the best way to respond. It touched me in a way I can’t begin to describe. I haven’t been able to find the right words, so I’ll just say thank you, as always, for following our journey and for sharing our story far and wide.
      Laura

  5. hopeforheather Reply

    I was at the Global Genes Patient Advocacy Summit and Gala this weekend. At my table was a guy who was connected with Batten Disease, he ran across country? And then I was introduced to a few others at a different table who are connected with Batten and I told them I read your blog!

    1. Member Laura King Edwards Reply

      Thanks so much for sharing! Yes, I know all those you met (Noah, the VanHoutans and the Kennicotts from Chicago). As I’m sure you know, your world shrinks when you have a rare disease or love someone who does. I hope you enjoyed the summit and gala. Taylor’s Tale is a partner of the Global Genes Project, and I’ve always wanted to attend the event. For various reasons, the stars have never aligned. Maybe next year…

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