T's illness certainly makes her very different from most other children her age, so it's easy to forget that in many ways, she's still very much like her peers.

T has four of the hottest tickets in the country right now. On Tuesday night, I'll join her and our parents at the arena uptown for the Hannah Montana concert. She's been counting down the days till the big night ever since a good friend gave us four sought-after tickets to the sold-out show. She can sing every word to most of the songs--right on key--and even saw the Disney-made pop star before she got really big, when she opened for the Cheetah Girls in Charlotte in October 2006. We were on the subject over Thanksgiving dinner at Mom and Dad's yesterday; T informed me that she while she was looking forward to hearing Hannah Montana, she was really more excited about the opening act, the Jonas Brothers, because "they're hot."

We take so many things in this world for granted. T's love of music has not changed since she lost her vision; if anything, her first love has only been magnified by the loss of her ability to see. She's so amazing. She had her High School Musical concert DVD on last night and was rewinding and fast-forwarding through the songs. She knows the location of every single button on the DVD player remote and can twirl and jump around the den, in perfect harmony with the music. Unless something's out of its normal position, she never bumps into a single object. She "sees" things in such a way that most of us never will.

The musical theme set for the evening, T and I eventually moved to the living room to take up residence on the bench of Mom's grand piano. I took lessons for well over a decade but haven't played regularly in ages. At T's urging, I found my old Lion King music book and (tried) to play "Can You Feel the Love Tonight." Before long, the two of us were singing the words as I trudged through the four- and five-note chords. Finally, I reverted to playing single notes, the better to play at speed and hear more clearly the beautiful notes coming from T. Even when she was a toddler, we said Taylor would grow up to be a fashion designer or a musician. She deserves more than anyone to realize her own potential. Damn this disease for pitting the odds against her. As we sang together, a few stray tears rolled down my cheeks for the talented, beautiful, loving little girl next to me on the bench.

The holidays are here, and I know they're going to be difficult. They were tough last year, when T's diagnosis was still very fresh (will it ever really set in?).

When you're scared, like I am, you start counting holidays. You start looking ahead to the next one and in the process almost forget to enjoy the present. But when you're hopeful, as I surely am, you look forward to tomorrow as just one more happy memory, first in the line of many happy memories to come.

Big things are coming, and we'll just have to take each day as we go.

Our story just made it on the news here at home. You know how they always give you a teaser going into the commercial break? They put T's face up on the screen and told viewers that after the break, they'd learn how a little girl's story could change their lives.

T's story is changing lives--and not just because Batten Disease research can help us understand other diseases. Even if her story never changed anyone else's life, I can speak for myself. T has changed my life forever, and not just because of what we're doing here. T changed my life when I was 16 years old, the year she was born. She changed my life the very first time she took hold of my pinky finger with her tiny little fist. I haven't forgotten the way that felt. Especially not when she still does it today.

Touchdown for Taylor photos are posted to the web! Click here to view photos or purchase prints.

Touchdown for Taylor was a fantastic event; I think everyone who attended would agree. The atmosphere was great, and the venue couldn't have been more perfect. Thank yous go out to:

-our hosts, Jo and Don Johnson, whose outright generosity and unwavering compassion amaze me
-all of our donors and guests, who helped make the evening possible and are making a difference in the search for a cure
-Smashing Briefcases, our fabulous band for the evening!
-the Schlernitzauers and Porcupine Provisions, who once again did a fantastic job with the food and event planning
-Roger Goodell and the NFL; your dedication to our cause put a special touch on the evening
 -the Carolina Panthers, whose giveaways delighted the lucky guests who received them
-Kristin Vining and Jill Fowler for capturing the evening on film
-Lance Johnston and Dr. Sandy Hofmann for traveling to Charlotte to join our guests
-ABZ Design for the photos of Taylor and her mom that made the evening more magical, and also for donating the Taylor's Tale t-shirt design
-Ray Evans and Webb/Mason for putting up with all of my requests and getting our t-shirts and stadium cups printed in plenty of time for the big night
-Jason Talley for the slideshow of Taylor that moved people to tears, including me
-our amazing steering committee for all of the hard work you put into making this the memorable evening it was meant to be

Check back soon to view Roger Goodell's video and the slideshow of Taylor. I'll also be posting a link to photos from the event in the next few days. Anyone who is interested in purchasing prints will be able to do so at a deep discount, thanks again to the generosity of Kristin Vining Photography.

This post doesn't even begin to cover the emotions still left over from Friday night, but I promise to share them soon. I just wanted to send out thank yous as soon as I could. I can't even begin to express my gratitude! And if I forgot anyone, I apologize. You all mean so much to me, and while there are so many people to thank, that's a great problem to have!

Things have been a little crazy the last week or so, which is my excuse for why I haven't posted since Halloween. We're busy wrapping things up for Touchdown for Taylor; the big event is just two days away! If you're coming Friday evening, I look forward to seeing you! Be sure to check out the site early next week, as I'll have updates and pictures from the event and even a link to a special new video. Thanks to the NFL office, commissioner Roger Goodell and my good friend Talley for making it come true. The finished product brought tears to my eyes; if you read my blog regularly, you know that I don't cry often. Ordinarily I cry inside, or I let others cry for me. These were good tears, though--tears that had been waiting for me for a long time.

We get so caught up in the chaos of everyday life that we forget to slow down and enjoy it for what it is. Last night, T reminded me of why children are far wiser than adults in many respects.

John and I were over at Mom and Dad's to celebrate Dad's birthday, and T had just finished telling us that Chubby Checker, the mascot of Charlotte's minor league hockey team, and some Checkers players visited her school. I told her that I could get tickets to games through the hospital, since Presbyterian is the team's official healthcare provider. I told her we could sit right down on the floor, directly behind the penalty boxes--so close that she'd be able to hear the players' skates on the ice as they fly past. Mom commented that she figured I could get good seats, seeing as how she noticed the Presbyterian logo on the players' jerseys.

T took that in, thought hard for a minute, then turned her head in my direction and said, "Do you know Chubby Checker?"