Along for the Ride

By Laura Edwards
Nearly four days have passed since I returned home to Charlotte, and yet I am still trying to process all that I saw, heard, and felt at the annual BDSRA conference in Chicago. As I said a few posts ago, I knew going in that the conference would be mentally and emotionally challenging for me. I officially attended as the president of Taylor’s Tale, and my mission in that sense was threefold: learn as much as possible about research, talk to as many researchers as possible and deliver a check for a research project. Research, research, research. Focusing on the research helped me achieve the goals I set for my time, and our organization’s time, in Chicago.
Words to describe my weekend: whirlwind. Exhilarating. Sleep-deprived. Inspiring. Painful. There were times I didn’t know if I’d make it. I know some families – many of them long-time veterans of this conference – will read this and wonder why. I realize that for many families, the conference is a time to connect with the only other people in the world who can possibly understand what they’re going through. A time to get advice from clinical folks who know how to at least attempt to untangle the tangled web of symptoms Batten disease kids face. In that sense at least, Chicago was easier than Rochester in ’07. I don’t like it, because it acknowledges that my sister has this disease, but I now know that I belong.
I was in the middle of a research session on Saturday morning when solace came to me in the form of a blinking red light on my BlackBerry. My sister had sent me an email – an email she typed thanks to a fantastic little program on her laptop that says the characters aloud as she punches the keys. And there on the phone’s tiny little screen was my sister’s heart and soul – her journal entry recounting our vacation in the Virgin Islands:
We went to the virgin islands. John saw a little shark and it ate a fish right in front of his knee. Scary! A BIG iguana sat under my lounge chair. He was as big as sunny with a tail as long as a snake.

From that point on, my day only got crazier, but unlike the prior 36 hours in the Chicago hotel, I flew from session to conversation to PSA filming to session to basement gym treadmill to conversation to banquet to hotel bar (where I could still be found at 12:30 in the morning, less than seven hours before my ride to the airport was scheduled to appear in the drive out front) on the wings of an angel. And as I sat exhausted on the plane the next morning, I felt hollowed out but also more whole, and I knew then that my sister’s courage had gotten me through yet another dip in the roller coaster at a time when I was not strong enough to ride it alone.

Dream Therapy

By Laura Edwards

My first full day in Chicago is not in the books, and I’ve already managed to glean a lot of great information about infantile and late infantile Batten disease research. I look forward to sharing many details in our summer e-newsletter. It’ll be delivered in the next few weeks, so if you haven’t already, please be sure to go to our website and sign up to receive it!

Talking to scientists – getting the scoop on where things stand straight from the source – is incredibly important to the work we do at Taylor’s Tale. It’s not enough to help me sleep at night, though. Those conversations give me plenty to chew on, but I go somewhere else for my daily dose of inspiration – a medication I sorely need whenever I start to feel angry at a world that includes Batten disease or get impatient about the speed of science.

Today’s dose of inspiration is this picture of Taylor and our dad while on vacation in the Virgin Islands last weekend. Dad told a joke at his own expense and asked T if he should puff up his chest for the camera. Right as I snapped the picture, T considered this and laughed. It was the best moment of that day. That’s the kind of moment that helps me run faster and fight harder. It’s the kind of moment that makes my dreams good again.

What Do You Wish For?

By Laura Edwards

I went out for a sweet treat last night with my two favorite girls – Taylor and my mom. We experienced the euphoria of Yoforia, a new frozen yogurt shop situated conveniently (i.e. dangerously) on the way home from my office. After eating our yogurt piled high with toppings, we sat on the bench in front of the fountain outside to watch the sky as it thought about storming, then sprinkled a few stray drops, then shifted colors like a kaleidoscope until finally fading into early dusk.

I can’t walk by a fountain without making a wish, a trait I picked up through countless nights at the old SouthPark Mall fountain outside the now long-extinct Baskin Robbins with my dad and enhanced in recent years by my increased need for fulfilled wishes. So as the late afternoon sky changed from cotton candy blue to deep purple and lavender to fiery orange and back again, we pulled out our wallets and produced handfuls of change. We fed the fountain with pennies, nickels, dimes and quarters to the fountain’s and our hearts’ content, squeezing our eyes shut tight and making a wish on every last coin.

I wish for a strong run on the rain-soaked streets of my neighborhood as soon as I publish this post. I wish for a sound night’s sleep tonight. I wish for a successful surgery tomorrow morning to fix the nose I broke playing soccer three months ago. I wish to feel well enough this weekend to watch the Americans at least play England to a draw in their World Cup opener. I wish for a summer filled with charmed memories created from here to the white sands of the Virgin Islands – images and smiles to bottle up for another day. I wish for a coming year in which the dark shadow of Batten disease moves at the pace of a snail – or not at all – to envelop my sister. I wish to see her grow up to experience the same milestones I have been lucky enough to live – graduating from high school and college, falling in love, getting married and finding a way in the world. I wish for a cure. I wish for the strength, the courage and, above all, the miracle that could write her happy ending.