When I spout off to someone about how T could make history--how she could change medicine forever when she becomes the first to survive her rotten disease--I get inspired. I always forget on some level that I'm talking about my sister in those moments, though, whether I'm speaking to a crowd or with a close friend in private. When I get on my soapbox, I'm always talking about someone else's beloved little sister, someone I'm certainly pulling for but also someone I couldn't ever love to the very core as I do T. Separation is my defense mechanism. It's the only way I survive.

Mom just told me that T had a really, really good day today. She was so happy, and she was recalling things--just rattling them off--from the first chapter of her homework reading (listening) assignment that even Mom couldn't remember. Apparently the only sad or negative part of her day was when I called and uninvited myself from dinner after sneezing and coughing my way through a bad cold all day at the office. The disappointment in her voice was palpable, and it broke my heart, but I've been told how important it is to keep T from getting sick. I'll get to see her Friday, though, when Mom and Dad need a babysitter (John and I are often the very willing volunteers). Mom passed down word to T that she could come to our house only if she agreed to let us watch the NCAA tournament games, and T said that was fine, and could she bring the pom poms that came with the UNC cheerleader outfit she wore last Halloween and help us cheer? To which I said yes, even though the Tar Heels will have already won their game on Thursday, and we will be pulling for the Davidson Wildcats in their game.

This is the T I know--the T who, no matter who's hearing the story or the moment, will always be my sister in my heart, my thoughts and my spoken words, who I fell in love with nine years ago, the T who, regardless of how overactive my various defense mechanisms are on any given day, couldn't possibly be someone else's sister, because I just love her too damn much.

The other night, Mom was telling me how she was sitting in the floor of her closet that early afternoon when T walked in and put her arms around her. She was quiet--when T has something on her mind, she gets quiet--and then she simply said, "Mom, I don't want to be blind anymore. I want to be able to see like my friends again." It was one of those moments for which Mom just didn't have a response.

Moments like that are what make it so hard to keep fighting sometimes. Fighting through constant heartbreak and sadness is a lot more difficult than it looks. Moments like that, though, are also the very reason why we must fight--today, tomorrow and always, until the day comes that we can tell T she will  have tomorrows, and it won't just be wishful thinking.

This past Wednesday morning, March 4, Eve Carson, the student body president at my alma mater, was killed in a cowardly and apparently random act of violence just around the block from where I spent three-and-a-half years getting an education and discovering myself. I didn't know Eve, but I've watched the news coverage over the past several days. Last night, just before the start of the Duke-Carolina basketball game that would decide the regular season ACC champion, ESPN ran a few photos of Eve, and our archrivals made a classy move by holding a moment of silence in her honor in Cameron Indoor Stadium. I have to wonder if the normally raucous, sweltering gym has ever been as quiet as it was for Eve last night. And sitting there on my couch at home, I cried for Eve--and for her family, for her friends and for our university--really, the world--that lost so much with her passing.

A shooting death like Eve's and a neurodegenerative disorder like Batten Disease don't have much in common other than the fact that they both put a premature, cruel end to lives that hold--or held--so much love and promise. There aren't many people out there who can truly understand what my family is going through, because they haven't lived it (and thank God they haven't), but then again, I won't ever be able to understand the grief and anguish that Eve's family is undoubtedly experiencing at this very moment. I don't want any part of their grief, and I wouldn't wish our grief on anyone else.

What makes Eve's death and Taylor's illness more painful still is imagining all their lives could and should be, or should have been. One of the questions I asked repeatedly early on and still is, "Why us? Why Taylor?" My mom has asked herself and God more than once what she ever did to deserve this. The counselor I saw for several weeks following T's diagnosis asked me to read a book called When Bad Things Happen to Good People, by Harold S. Kushner. There's not much in my opinion that a paperback self-help book can do to cut through the pain we suffer daily, but it did help in the sense that I came to terms with the fact that sometimes, no matter how honorably we live our lives, bad things happen to us, and rather than being the cause of our suffering, God suffers along with us. If I hadn't ever learned that important lesson, I would have lost my faith over what's happening to T.

This world of ours is equal parts tragic and beautiful, and to fully experience the beautiful, we have to shoulder life's tragedies, no matter how large or small. I still hope that one day, the light from the beautiful will melt away the darkness of T's crushing diagnosis. Perhaps one day she, too, will walk along the brick sidewalks beneath the canopies of the UNC campus and look forward to the goldenrod leaves of fall and blooming dogwoods of spring, as Eve and I once did and as she so badly hopes to do.