If you live in the Charlotte area, please be sure to pick up a copy of the current Charlotte Weekly when you get a chance (it hit newstands and homes today). It includes a fantastic article about Taylor's Tale and the upcoming Fairy Tale Ball! You can also access the full edition at www.thecharlotteweekly.com. It's the January 25-February 1 issue and should be online shortly.

I want to remind everyone that Taylor's Fairy Tale Ball is just two weeks from this Friday! If you haven't bought your tickets yet, try to do so by this Friday, January 25 (ticket prices increase afterwards). My friends have put together a great event in the true spirit of T. They've worked very hard, and I encourage everyone to attend and help us make magic for Taylor on what promises to be a memorable evening. I am honored to share the program with Dr. David Pearce of the University of Rochester. Dr. Pearce and his colleagues wake up every day and go to the office in the name of children like my sister, and I have an incredible amount of respect for him. I will do my best to hold up my end of the bargain.

Someone told me what feels like a long time ago--just after T was diagnosed--that getting through her illness would make me a stronger person. Maybe so, but I don't feel like my moral stature is worth the price of T's life. She means so much more than that. I'd rather be a weakling and still have T. Furthermore, I don't always feel like I'm very strong. I used to build some impressive structures with decks of playing cards when I was little, but the best part was knocking them over at the end. It was so easy. That's what I am--a house of cards. I may appear to be strong, but if you took away the friends, family and even complete strangers who have been touched by T's story, I'd fall in a heap. So no, I don't think that my becoming a better person is the silver lining here. I'm still the same person I always was. Perhaps the only thing that's changed about me is that over the past year and a half, I've developed a clearer understanding of the true silver lining--the support, compassion and endless love we have all received and my ultimate realization of how omnipresent those things are in this world.

My doctor called me this morning with the results of my carrier testing. They came back positive. I'm not sure what I expected to hear, but I certainly would have rather heard that my future children never have to worry about passing Batten Disease on to their children or, worst case, getting it themselves. My own genetics are really just a subplot at this point, though. I have some control, because I know. My parents didn't know until T was three and a half weeks shy of her eighth birthday. The difference in my sister and me is just about prefixes, really. Because it's a heterozygous trait in my case, I have the luxury of calling it a subplot. T's homozygous trait forces her to deal with a lot more. My focus now is T and other children just as unfortunate as her. While I was upset this morning, I quickly realized that today is no different from yesterday. I've been walking around with this gene for almost 26 years, and in that sense, today is better than yesterday, because I do know. The saddest thing is hearing about the families who have multiple children with Batten Disease, because they were born too close together to realize what had happened before it was too late. I know families like that, and I hurt for them. I wish there was more we could realistically do to seek these things out ahead of time. It's too bad that Batten isn't the only misfortune written into our human blueprints, either. There are genes that cause breast cancer, susceptibility to heart disease and a host of other bad things.

Everything about this disease has consumed me since the moment Taylor was diagnosed in July 2006. I forget sometimes how good things were for me, and for my family, before that fateful day. I forget sometimes how good some of those things still are. Something this tragic permeates life, though. You can't get away from it. I can read a book or go for a run or watch a college basketball game and divide my attention temporarily, but it never leaves my consciousness. It's always top-of-mind. How could it not be? 

I wish I didn't worry that if I take a day off, it's a day I'm stealing from Taylor.

I wish I could be a better friend. I wish I could remember to ask my friends about their upcoming weddings more often or what they did over the weekend.

I wish I could be a better wife. I wish I could tell my husband yes every time my eyes are glazing over in our home office and he asks me if we can hang out.

I wish I could be a better sister. I wish I could tell T that I'm absolutely positive we'll save her life.

I've been riding a wave for the past 18 months, and the last couple of weeks have been particularly emotional. I think my blog actually benefits when I'm going through a difficult phase; the words flow more freely, and I post more often. In the thick of things, though, I forget to actually let people know what's going on with Taylor. So tonight, I figure it's time to let everyone take a break from the inside of my head and catch up with T.

A week ago last Friday, T was treated to a fun night by the Charlotte Bobcats at the team's game vs. the New Orleans Hornets. A special friend in the Bobcats organization made it possible for T to meet most of the players, cheerleaders and the PA announcer and then "watch" the game from great seats with her family. She stood down in the tunnel by the locker room as the players came by to run out onto the court. She told Sean May and Raymond Felton she wanted to be a Tar Heel and got rewarded with low fives. She crawled under the velvet rope to take a picture under the mural of Gerald Wallace, her favorite player. During the game, she cheered nonstop against the team I pulled for growing up, when they were the Charlotte Hornets. Amazingly, she knew when to chant "Defense" even before the crowd started in to give her a cue. I live to hear the laugh and the smile I was treated to all night.

Just this past Friday afternoon, I made it to T's Braille lesson with Jill at Fletcher and managed to go unnoticed in the tiny room with my camcorder for a full 20 minutes before a "beep" signaled the end of the tape and T caught me. It took a James Bond-like performance to pull the wool over T, who can't see but has the best hearing of anyone I know. It's pretty fascinating to watch someone learn such an important "language--" the language that allows people like my sister the opportunity to find a common thread with the sighted world. T and Jill use neat tools like styrofoam-like balls and six-cup muffin tins to learn the different sequences of one to six dots that make up the Braille alphabet. Jill has promised to teach me to read Braille with my eyes--she says that sighted people shouldn't try to learn as T does--and I'm going to take her up on the offer. I want to be able to connect to T's world in every way that I can. I can sense the disconnect she feels when she says things like, "But Laura, why is Miss Jill going to teach you Braille? You can see. Braille's only for blind people."

While no one can see or experience our world through quite the lenses that T can, all of us need to continue to try and bridge the gap as much as possible. T is currently stuck on an island you and I have never been to, but there are things we can do to move our shore closer. Perhaps one day, we can get close enough to reach across the water and touch her outstretched fingers with ours. Perhaps one day we can even build a bridge for her to come back to us and once again see our land and the blue skies above.

There is nothing more beautiful--or more human--than love, and there is nothing more engrained in our very existence on this earth than the love of a child, because that kind of love is boundless. It starts in their souls and is expressed in their smiles, in their eyes, and in the way they hold your hand. It is embodied by their unwavering loyalty, even in the face of cruelty and shame.

Khaled Hosseini's The Kite Runner is one of my favorite books. It paints a picture that is at once fascinating and horrifying of a country and of a culture that is vastly different from the one I've always known. Imagine watching a woman being stoned at midfield during the halftime of a soccer game, or children who are barely old enough to walk shot down in the streets where they should be playing. Now imagine that all of us are walking upon the same earth and beneath the same sky. How can we have so many different universes on a single planet, and what is it that ties our universes together?

The answer is love. In the midst of great violence, injustice and tragedy, Hassan's love for and loyalty to Amir in the book is very real. Love is what makes us human. It is what ties us inextricably to one another, no matter how different the lens through which we view the world or how different we are from one another. The moment you lose sight of love and forget how to be good is when you cease to be human.  

Taylor's love is like none other I've ever known. She's going through hell, and so are we. There are times when she's angry, as we are, or sad, as we are. But more often than not, her existence is defined not by the tragedy of a disease that's encoded in her genes but by the palpable love, the life and the warmth I feel when she holds my hand. I will not stand by silent and inactive and let the hell take her away from us, and us from her. The moment I do that, I have forgotten how to be good. And for as long as I'm walking upon this green earth and beneath this boundless sky, I want to feel the warmth of her hand in mine.