Tonight, John and I went to Mom and Dad's for Halloween. T dressed up as a Tar Heel cheerleader and was beautiful! Despite the fact that her vision is ultimately gone, she did much better trick-or-treating than she did one year ago. As time has passed and her vision worsened, her other senses have become much more acute, and she does very well for herself--even in a crowd of girls tromping through yards and up steep staircases with trick-or-treat bags in the dark.
 
This weekend, T will go to Bald Head Island on the North Carolina coast with Mom and Dad for a much-needed getaway. John and I wanted so badly to join them, but things just couldn't fall into place. I catch myself wondering how much I'll regret not pushing everything else to the side and taking the completely illogical there-and-back long trip to the coast for what will amount to 24 hours. Have you ever fallen victim to the hourglass--which is to say, have you ever seriously worried that you might lose someone you love and thus find yourself trying in vain to squeeze every possible memory, every possible happy moment out of every second that you have left together? I wonder, too, if that's really healthy--for T or for me, or for any of us. The only way I push the ever-present hourglass out of my mind is by conjuring up that precious hope, that belief that a miracle is possible, that it will be many, many years before our hourglass runs out.  

Tonight, I want to do things a little differently. The words that follow are not my own, but rather my mother's. Below are her reflections on the concert held in Taylor's honor in Raleigh yesterday:

The concert appealed to all musical tastes, from Broadway to classical. Performers included longtime family friends, Audrey Austin and Dr. Preston Hancock.

From beginning to end, the program touched my heart. Audrey and Preston opened the program with "Something's Coming" from West Side Story. The lyrics were perfect: "Something's coming...something great..." The program ended with "I Believe," with Audrey singing, Preston on piano, Augusta Johnson playing the flute and Kimberly Morgan doing an interpretive dance. Just lovely. Kimberly was so graceful.

Of course, Dr. Hancock performed some of my favorites by Debussy, Schubert, Chopin and Rachmaninoff. He is an amazing musician, so admired.

Very impressive was Mendel Nguyen, a 12-year-old student of Dr. Karen Allred at Meredith College. He gave an AMAZING performance. I played the Chopin Scherzo that he performed when I was in college, and I never came close to the performance that he offered. The maturity and skill of this talented young man was amazing.

I understand the time and effort it takes to prepare for a performance such as the one these musicians offered yesterday, and I'm so grateful. They've helped move our mission forward, but they've also filled my heart with joy. The concert meant so much to me.

And, of course, I want to thank Polly (Greene) and your grandmother. I also understand the time and effort on their part that was involved in organizing a musical performance such as yesterday's. It was flawless--one of the best and most meaningful afternoons of my life. I'll never forget it.

I can never begin to thank everyone who gave something of themselves to make yesterday happen. I must never forget that throughout all of this, as much time and effort we put into the search for a cure, we must also put passion and energy into the support of those we love. The money raised at yesterday's concert does not even begin to tell the story of one magical afternoon. I search myself each and every day, testing my own strength and my ability to give my family as much of the love and support they wholly deserve as I possibly can. Thank you to all of you for putting a smile on my mother's face, giving her a piece of your hearts and renewing her faith in our ability to save her cherished little girl.  

When I was in the fourth grade, I sat on the hill overlooking the basketball court and read paperbacks during recess. Until college, I did everything I could to avoid talking in class--and my face often turned a bright shade of red when I did. Growing up, my stomach stayed twisted in knots for days before my piano recitals. In high school, my soccer coach told me that if I wasn't always so nervous, my first touch could be better. I became a far better player when I stopped caring so much about how well I performed. I'm most successful when I forget that others are watching--and judging. My entire life, I've been perfectly happy to be alone with my thoughts. I enjoy long solitary runs and hours curled up with a good story. I'm an introvert to the fullest extent--a strong "I" on the Myers Briggs scale.

Yesterday, my coworkers and I raised awareness and money for research at the hospital's annual "PresFest." PresFest is a no-frills way for departments to generate funds by selling junk food, random gifts and holding raffles. With its funnel cakes, fried pickles and wings, it's a miniature state fair. We sold "Treats for Taylor-" homemade chocolate and marshmallow candy, cookies and filler candy--and made $700. I spent four hours talking to employees--most of whom I had never met. If it looked as though a person would pass us by, I flagged them down. I was totally out of my element, but when it was over, I wanted more.

When T was diagnosed with Batten Disease, I reached deep inside and somehow found the energy I needed--to get through each day but also to inspire others to help us find the cure. I have learned that I can be an extrovert when I need to be: that I am a good public speaker; that I can walk up to perfect strangers and share my love for T and my burning desire to find the cure. I have learned that I can share my innermost thoughts here on the web, for all the world to see. I hold little back, because I believe so fully in everything that I say and do, in the importance of our mission and in the pricelessness of a life like T's. My little sister has helped me find my Inner "E."

I continue to be amazed at how well T can get around in new places. It takes her all of one lap--sometimes two--to visually map the layout in her head. She takes advantage of that skill in such a way that her blindness is hardly noticeable to those who aren't aware of it. We took her to a friend's house in Huntersville--new place--Friday night for a chocolate-making party, and she made it around like she had been there a thousand times prior.

T was totally oblivious that we had gathered in her honor--my coworkers and I are selling "Treats for Taylor" at an annual employee event at the hospital this coming Friday. She  had a great time with the other kids there. High School Musical 2 was on, and at times, I found myself spellbound, just standing there watching her. She has a great talent for dancing, and she has a beautiful voice. So much about T is beautiful.

A researcher called my parents' house this past spring, and T answered the call. She promptly went skipping down the stairs with the phone, singing to my mom that it was for her. The researcher, frankly, was shocked--and told my mom as much. After all, as an INCL patient, T's not even supposed to be walking the face of this earth at her ripe age of nine, let alone doing the things she's doing. She's truly a rarity among rarities, and she continues to amaze even those who spend their days studying Batten Disease. INCL is pretty rare--even as Batten Disease goes--because the children with it don't live very long at all. But T's miniscule amount of enzyme production--it's estimated to be about 2% that of yours or mine--makes her still more unique. In fact, Taylor is one of just 12 children in the entire world confirmed to be living with late-onset INCL (the onset of the disease is delayed by the small amount of enzyme doing its job) and one of just 23 confirmed in history. Since hearing those stats, I've had to say them out loud to myself several times just to make sense of them. Perhaps I'm biased--I want to save her life more than anything--but I think she could make still more history by becoming the first child to survive Batten Disease. Better yet, she could mean so much for science and for all of these children, because she could tell us what's she's thinking and feeling and how the treatment is affecting her. The average lifespan of INCL patients is incredibly short--so short that most of them haven't yet developed language skills before the onset of the disease. That, to my scientifically untrained mind, makes more than a decent case for saving her. The payoff could be huge on multiple fronts. The payoff for me would be that my dream of watching my sister grow up could come true.

The Foundation Fighting Blindness has set up a link from which you can sign a petition urging Congress to increase funding for the National Institutes of Health (NIH) in the 2008 fiscal year. NIH funding is critical for the success of most biomedical research, including the search for a cure for Batten Disease. Click here to read the letter and sign the attached petition. Thank you for your support!

Have you ever gotten so close to something you could almost taste it, only to then lose it? Something really important--something at which you may never have another chance?
 
How do you get over that kind of disappointment? I think I'm finally learning that we just have to put our heads down, clench our jaws and continue on our search for answers more fervently than before. Each lost opportunity or dose of bad news wears on us, but it also steels us for what's still to come. What kind of world is it where you get through the days mostly because you know they're better than what you'll have in the future? How utterly horrific does a disease have to be to have that kind of an effect on an otherwise beautiful life, a life full of so much potential?

My expectations aren't a signal of lost hope or lowered spirits. They are, if you will, my acceptance of reality. I know that it takes time to do the kind of research it will take to save Taylor and, ultimately, other children with Batten Disease. "Time" may be one year or five years, but I don't know how many years T has. I know that it takes money. "Money" may be $250,000, or it may be millions. We have no way of knowing exactly how much it will take. Batten Disease is rare--I haven't lost sight of that fact--but I also haven't lost my belief in the priceless nature of the life of even a single child.

I have hope, because I know how close we could be. Nothing--not this website, not an event, not even the funds contributed by our compassionate donors--can guarantee that we'll beat this, but in the absence of those things, children will only continue to die. Our donors have made an incredible difference in the eight short months since Chapter One, but we have to keep it going--and that's on us as much or more than anyone else. That's on me to continue to pour my heart out here for all the world to see and on our committee to sustain the energy we've shown this year. It's on our family to be there for T.

The cure won't be found tomorrow, but it's out there. And every day we don't further the research is another day for this disease to eat up the bodies and minds of these kids. It's like a parasite, and it works at different speeds depending on the child. Some children lose this battle very quickly. I want us to have the best chance to save all of them.

I know how bad this disease can get--and will get if we don't stop it--because I saw it in Rochester in July. I saw it in those children, and I saw it in the hearts and faces of their parents. My heart breaks for them. My heart breaks for T. We are far too late to save many of those children. I have met children who likely will not be with their parents next year. Who will never get their first locker at school. Who will never get their drivers' licenses and will never experience their first kiss. Life is about milestones and all of the things that happen in between. Most of these children reach important milestones, like taking their first step or learning how to read, only to have them taken away from them. Before Batten Disease is done with them, they won't even have the memories of what they could once do, or who they could have become. I hate this disease and everything about it. People age--that's how life works--and as they age, they find that they can't do things they were once capable of doing. I'm only 25, and I can't play a soccer game anymore without waking up in pain the next morning. I used to play four, even five games in a weekend without missing a step. But I still have the memories. And as my life changes and things fall away, they are replaced by new things that are just as--or more--rewarding. I miss being in college, but I love being married. T can't ride her bike anymore, but what's there to fall in its place? She can't play on a soccer team like her sister, and she had to give up dancing when her vision kept getting worse and worse, and what does she get in return? I guess what's important here is for us to realize the unique beauty of those things T is able to experience these days, like horseback riding and listening to her favorite music.

My love for her is so strong, and I hope she knows that. I wonder if she knows how I cry inside for her for all of my days, even when I'm happy and perhaps even more so then, because in those moments, I want to hold on tight and never let go. I hope she knows how much of a miracle her presence is--and always was--and how much of an impact her strength and will have had on so many people. I hope she knows that because of her--with or without Batten Disease--I am a better person.