Earlier this year, T got stuck on the idea of going to Hawaii. I don't know where exactly it came from, but I have to admit, she's got good taste! Anyway, she's still fascinated with Hawaii. I kept her for a few hours on Saturday and treated her to a manicure and pedicure--she loves getting her nails done. While we were sitting in our side-by-side massage chairs, soaking our feet, I asked her again where she would want to go if she could go anywhere in the world.

"Hawaii," she answered.

How can I get T to those faraway islands? Hawaii is something like 7,000 miles from North Carolina. I wish we could have done it two years ago, when she still had all of her vision and could see what must be a gorgeous place. But as I've said in the past, T is very talented at always "seeing" the good and getting enjoyment out of the simplest things. She wouldn't be able to see the expanse of rolling green volcanic mountains or the powdery white sand and blue sea. She wouldn't see the hula girls she remembers from the Disney movie Lilo & Stitch, but I'd be willing to bet that she'd dance with them!

I want to take the world, wrap it up in pretty paper, put a bow on it and hand it to her. She hasn't asked for it. As a matter of fact, she hasn't asked for things any more so than other kids her age. Every day, I'm reminded that while T is extraordinary in some respects--after all, how many fourth-graders have their own website--she's a very ordinary child in even more ways. And that is exactly what makes her so worth saving.

I can't remember if I ever mentioned the accident T had at my house earlier this year. Anyway, she fell in my dimly lit bonus room, because she can't see, and she managed to break off the bottom half of her two front teeth, but she was a great sport about it. While John and I got exceedingly (but understandably) upset, T got over the initial shock and then took my hand, went downstairs and quietly ate the pancakes Callie and I had made for her, chewing with just her back teeth. The dentist was able to bond the halves back on that afternoon. This disease puts things into perspective. I paid an arm and a leg for a porcelain veneer before my wedding last year, but how much do teeth really matter--particularly the way they look?

The reason this is at all relevant is because T woke up in the middle of the night Monday with intense pain, a high fever and lots of swelling in her face. As it turned out, she developed what could have been a pretty dangerous infection in one of the teeth. So, T had to go in for an emergency root canal and missed the first two days of school at Fletcher. How much can a little girl be expected to endure? This is a nine-year-old who wants nothing more than to be normal. The sharks are circling these days, if you know what I mean. I would give anything for a normal day and a tomorrow without Batten disease.

Happy Early Birthday to T, who will turn nine this Sunday, August 19. We're working tirelessly to make sure there are many, many more happy birthdays for our princess!

Things are shaping up so well for Taylor's Fairy Tale Ball on February 8, 2008. I'm particularly excited about this event, because it's so appropriate for T. We have booked Roof with a View for the evening. Porcupine Provisions is catering, and I'm told the DJ we've got lined up is great! I'm also very happy that David Pearce will be joining us that evening. David is a renowned Batten researcher and is truly passionate about these kids and his work.

The event will be wonderful no matter what, but in the end, of course, the core of what we're doing is about saving the lives of these kids, which we can only do by supporting research efforts. That's why I'm inviting companies and individuals to move us closer to a cure by becoming event sponsors and ensuring that as close to 100% of funds raised as possible can go directly to research. We are working very hard to plan a fantastic evening, but we need your help. Please email me as soon as possible if you are interested in sponsorship opportunities. Sponsors will receive full recognition for their generosity, including mention on the Taylor's Tale website, upcoming newsletter, event invitation, program and an announcement at the ball. Thank you in advance for moving us one giant step closer to saving the lives of children like my sister!

John and I went to Raleigh with Mom and T over the weekend, so I got to spend a lot of time with T. I'm so appreciative of our time together, but on the other hand, being with T renders my normal "escapes--" my marriage, my friends, my job, exercising, working on the house--totally useless. Being with T forces sadness upon me--no, shoves it in my face. It puts me up close and personal with my sister--the one entity in my life that has made me so incredibly happy and so infinitely sad at the same time.

I keep holding onto visions of T--both memories and dreams. Memories of taking her to Freedom Park to feed the ducks, of eating ice cream with her at Maggie Moo's. I have this one memory of T from a long time ago that I hold particularly close: it was August 1999, eight years ago, and we were in San Francisco with our parents and grandparents. T was about to celebrate her first birthday, and I was about to begin my senior year in high school. We were in the city for one of Dad's conferences, after which we drove to L.A., with memorable stops along the way, via the Pacific Coast Highway. I don't remember the details of this particular night too well, only that the "adults" were occupied, and so T and I were left to our own devices. There was a mall beneath our hotel with endless shiny tiled floors. Most of the shops were closed, but T and I made our own fun. I pushed her around in her stroller, making a point of running up and down the handicapped ramps and reveling in T's ensuing laughter. I cherish a picture from that night, of T in her chariot, her blue plastic stroller, in that underground mall with a huge grin on her face.

The miracle I need to find, the one I will stop at almost nothing to obtain, is one that involves more memories just as simple and beautiful as this one. Memories that have not yet been formed, but in which T has defied her awful sentence and has outlived her predecessors--no, better yet, is cured.

If I didn't believe in miracles, I wouldn't be able to get out of bed in the morning.  Please help me find my miracle.

We've made lots of exciting plans this week! Check out the events page for more details.

Speaking of events, Taylor and Mom pulled off one of their own last night. It was Sunny's first birthday , and they threw a party fit for a (bichon) princess. It was a white dog convention at Mom's house, with Daisy, Mason and Heisman all in attendance. T had a blast! My camera was with John in Louisiana for the week, but we got plenty on Mom's, so I'll make sure to get those up on the site sometime next week!