Spunk

I'm all about anniversaries. And on Tuesday, I celebrated one: the two-month anniversary of a sideline sprint that ended with me crawling off the soccer field, my left Achilles tendon partially torn like a piece of frayed rope. 61 days later, my Achilles spent its "anniversary" feeling just about as worthless as it did the moment it tore.

These unfortunate circumstances are partly my fault, I know. There's no use in denying it - I'm a bad patient. After all, my doctor did tell me to wear my walking boot at all times unless I'm fully engaged in my usual fetal position in bed for a too-short night's sleep. But the boot's hot. It's a pain to take on and off. It's not the best summer fashion statement - I keep thinking I should decorate it with miniature leis and little pink umbrellas and other fun things that make me think of cute sandals and tropical islands and activities best done bootless. And, it's not water sports-friendly. I spent this past weekend at my aunt and uncle's house on beautiful Smith Mountain Lake in Virginia. Getting from the house to their dock in a beautiful, quiet little cove with a full view of the mountain itself requires navigating 86 unevenly-sized wooden steps. My uncle, a surgeon, was horrified at my lack of compliance with doctor's orders - first when I attempted to come down those steps barefooted and crutch-less and then later, when I came down the steps a second time, still barefooted but this time on crutches, only to ditch the crutches as soon as I reached the bottom step.

One reason I'm a bad patient is that I am extremely prone to cabin fever. I cherish those fleeting moments in which I have nothing to do and can simply sit still and breathe, but when I'm forced to sit still, it drives me crazy.

The second reason I'm a bad patient is that I'm just plain stubborn. Sometimes, when instructions don't suit me, and I'm the only one who stands to lose, I just don't follow them.

I'm stubborn about Batten disease. Some people have asked me, and my mom, why we're still fighting this damn monster. It's winning the fight right now and has been all along, so why are we still throwing punches?

I'll tell you why we're still fighting. We haven't been knocked out yet, that's why. We may have bloody lips and swollen eyes and busted noses, but we're still standing, and we've managed to get in a lot of good licks on Batten, too. There are still people out there who haven't heard Taylor's story. There are still people out there who, given the opportunity, would be inspired to fight beside us - for one battle or maybe the whole war. I learned that this spring; I spoke publicly on behalf of Taylor's Tale on six different occasions, and every time, at least one perfect stranger came up to me afterward wiping away "I want to help" tears. And, most importantly, there's still a lot of kids who need us to keep fighting. We won't find the answer in time to save all of them - maybe not even my own sister. I know that. Believe me, I've known it for a long time.

But just as my family's still standing, my sister's still smiling. When Taylor was little, we called her "spunky," which really meant she was stubborn as hell but so damn cute that "spunky" just fit better.

Keep throwing those punches, Batten. Eventually, the fight will end, and you'll be lying on the ground, and we'll be standing. We'll be covered in blood, and we'll struggle to keep our balance, but we'll still be on our own two feet. Because we're too spunky to take "no cure" for an answer.

In spunk we trust.