World Cup Wins and Batten Disease Losses

By Laura Edwards

Tonight, the U.S. women could win the World Cup final for the first time since 1999.

I was 17 the last time the American women won soccer’s top prize. In the summer of ’99, I was a high school midfielder with great speed, a long throw and a competitive streak that didn’t match my quiet personality off the field. I idolized the national team players I’d grown up watching and dreamed of playing at the next level.

World Cup programWhen my dad told my brother Stephen and me he’d found three tickets to the United States’ quarterfinal game against Germany, I couldn’t contain my excitement. I had nervous jitters throughout our journey to Maryland’s Jack Kent Cooke Stadium, where we watched the Americans win 3-2 on goals from Joy Fawcett, Tiffeny Milbrett and Brandi Chastain.

We didn’t stay long after the game ended. Dad hadn’t been able to find a hotel room in town, so we made the trip home that night. I’d gotten my driver’s license 14 months earlier, and my father let me start behind the wheel. But he fell asleep before we made it out of town, and I drove the whole way home – more than 400 miles.

It made for a long day and night, but I’ll never forget that experience.

My husband and I briefly considered buying tickets to tonight’s final in Vancouver after the current generation of players won their semifinal game over Germany earlier this week. You only live once, right? But it’s been a crazy couple of months. Work is busy, Taylor’s Tale is on the move, and I finished writing my book after a mad dash to the finish. For now, that magical summer of 1999 will live on as my only in-the-flesh World Cup experience.

That’s life, I guess – especially when you’re all grown up. Sometimes you have to make the logical decision instead of the crazy fun once-in-a-lifetime decision. But a strange thought struck me tonight when I turned on the Fox Sports 1 pre-game show at home. My little sister, Taylor, is just five months younger than I was the summer I made that pilgrimage to the World Cup quarterfinals with my dad and brother. Taylor will be 17 in August, yet going to this summer’s World Cup would never have been in the cards for her, even if she’d turned out to be a soccer fan like her big sister. She never got her driver’s license, and she never will. She won’t even be able to see the game when my dad undoubtedly turns it on at my parents’ house tonight, because she’s blind.

Batten disease steals so much. It’s robbed Taylor of her vision and her ability to learn and her fine motor skills. It’s taken her ability to swallow and walk and talk. But at its core, Batten disease steals life. It steals the experiences that make us whole. I don’t know if Taylor would have grown up to love soccer, but I know she’s missed out on almost everything imaginable because of Batten disease. I know Batten disease rips away everything that makes the person whole until there’s nothing left at all.

 

 

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