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.