Taylor drew a bad lot; I realize that. It kills me that my parents had only three kids, and yet one of us had to get tagged with the disease that each of us only had a 25% chance of inheriting. And the chance that she will have a normal life, or that she will even survive to be the age I am today, is very low. But I've never been about the odds with Taylor. I've walked the line between denial and hope, but I've always had my head--and my heart--on the side of hope. If I'd given up hope, I wouldn't be able to face the day. If I'd accepted the odds, I wouldn't be sitting here as I am now, on the floor of my bedroom, laptop computer in my lap, typing away furiously with Monday Night Football in the background, knowing that we are closer to a cure than we were when we started this gig and closer to a cure if we fight tomorrow, and the next day, and the next.

Taylor drew a bad lot, but she specializes in amazing others with her ability to learn and do new things and her determination to never accept, but never surrender, to her disability. I spent some time with her vision teacher, Jill, tonight, and you know what? The thing that amazed me most may not have been the examples of my sister's perserverance, but rather the fact that she's so far from alone in her quest to be normal. Taylor is Jill's only student who suffers from Batten Disease, but all of Jill's students are blind or are saddled with a severe visual impairment. I asked Jill a question that has eaten at me since I was in elementary school and first learned about Helen Keller. When people are born blind, if they imagine things, do they see pictures in their brains? If you say that something is "orange," or "pretty," do they understand what that means? After all, my brain, like that of all sighted people, acts as sort of a projector. If I imagine a vacation to the South Pacific, images of brilliant blue water, rolling green mountains rising out of the sea, swaying palm trees and thatched roofs appear in my mind. The thoughts aren't formless words drifting through my head; they're illustrated stories. As Jill explained to me, though, blind people do think in pictures. They may not do so in the way you or I would, but they do just the same. For example, she and T are creating a version of the game Twister that T can play with her friends. The green circles will be rough; the blue smooth; the yellow soft and the red leather. In this way, T will be able to enjoy a game designed for the sighted in the most basal way--a game based on color. Of course, my sister wasn't born blind; in fact, until her night vision started to suffer the year she turned seven, she no doubt saw the stars and the moon and the sky and the hills in the same way that you or I do. But from now on, when it is Taylor's turn to spin, she will have to twist and turn her body to touch the red leather dots, or the rough green dots. Humans are a very visual species, but we're a very adaptive species as well. And those who are disabled do it better than the rest of us. I'm incredibly nearsighted, but I don't consider myself disabled. And if I'm not wearing my contact lenses or glasses--artificial assistive devices--I stumble around in such a way that bystanders would perhaps believe that I'm blind. But my sister, who is blind, is so attune to her other senses of hearing and touch and spatial awareness that if you watched her, you may not recognize her disability unless you looked closely at her bottomless caramel-colored eyes and and saw that they don't follow her steps as she moves or the visual cues that exist around her.

The worst thing we can do is disable the disabled; to assume that because they were given less tools than the average person, that they somehow cannot achieve the things they wish to achieve or the dreams their families have for them. What we forget is that in the absence of one tool, the others are enhanced exponentially, and perhaps more importantly, their courage and determination are stronger than usual, because they have to be. I know Taylor will probably never drive a car. I go to my soccer games and run up and down the field and can judge the exact moment when I should trap the ball as it comes to me, or the ideal time to sprint past a defender, and I know my sister will probably never be able to do that. But she can do so many things. She can communicate using Braille. She can type on a keyboard. She has a beautiful singing voice. She has a memory like a steel trap. And you know something? There are a lot of people who have gotten on in this life with a lot less talent than that.