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.
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.