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.

Déjà vu

By Laura Edwards

I arrived in Chicago a few hours ago for the Batten Disease Support and Research Association (BDSRA) annual conference.

As I walked into the hotel lobby, I couldn’t help but feel as though I’d been here before. I have, in fact, only been to Chicago once before, and that was for a work conference at a place with a view of Michigan Avenue. What I remembered, rather, was the moment my mom and I entered a different hotel in Rochester three years ago for our first BDSRA conference, which that year was paired with the international scientific congress on neuronal ceroid lipofuscinosis (NCL), the fancy name for Batten disease. We were still new to this then, not quite 12 months removed from that fateful day in July when a geneticist told my parents that their youngest daughter was going to die. We were scared because we were still getting to know Batten disease at that point. We were scared because we knew the conference hotel would be teeming with kids far more affected than Taylor at the time – our unwanted crystal balls. And yet, encasing the fear that resided deep within us like a hard, defiant shell was an enormous sense of confidence and our untarnished, shared belief that T would be different, that we would win.

I still wear that shell, but its once spotless exterior is covered in nicks after four hard years of watching a little girl I love, and our family, bend (but not break – not yet) under the weight of the tragedy that was encoded in all of T’s genes and half of mine. I just realized that I never blogged on the most recent anniversary of T’s diagnosis – July 24, one week ago tomorrow. I wonder now if counting those years ever mattered, or if it ever will. One thing Batten disease has managed to teach me, after all, is the importance of cherishing each day. I am simply too human to tackle this whole years or even months at a time. So instead, I tackle each day. I am not quite the same person I was when I walked into that Rochester hotel three years ago. In some ways, I am weaker. And yet, I am stronger – buoyed by the enduring hope that all of our friends’ and donors’ great gifts of time, friendship, love and money have given me. On Saturday night, I will award another research grant on behalf of Taylor’s Tale as well as all those who support us and all those we aim to save. And for another 365 days, I will believe.