Mom told me a story today about several of our angels and how they are making a difference right now in T's life by giving her happiness. Mom went on to say that she needed to start an "Angel List" to keep track of all those who have walked with us on this journey.

Our angels are immediate family and close friends, casual acquaintances and perfect strangers. An angel is someone who says a prayer for T before drifting off to sleep every night or shares a hug or a laugh to show her how much he or she loves her, because T can't see people smile. An angel is someone who is cognizant enough to pull his or her legs out of the aisle so as not to trip my blind sister when she walks past or physically places objects in her outstretched hands instead of simply holding them out, waiting for her to take them. An angel is T's teachers at Fletcher, who make her smile, understand her little girl dreams and help her achieve them. An angel is the person who doesn't ask why T would want to "watch" a movie or cares about the color of the shirt she's wearing but just understands. An angel is the low vision specialist who has given T two gifts: the knowledge of Braille and the beauty of friendship. An angel is the little girls who make sure she has a seat at the table during lunch or made a place for her in their talent show dance routine. An angel is the women who have dedicated their time, talents and love to create magical events that will live on in our family's memories forever and have done so much in 14 months to support the search for a cure. An angel is the relatives and friends who have loved her since the day she was born and whose love has never wavered in the wake of her tragic diagnosis. An angel is the couple half a world away who support us simply because reading Taylor's Tale made them cry and because they believe in miracles. An angel is families who, like us, are facing this disease and fight it each and every day with great courage and everlasting hope.

John and I took T to the Discovery Place museum uptown on Sunday afternoon to see the Dinosaurs exhibit that's in Charlotte for the next few months. It was a lesson for me even now, more than two years into my new life with a visually impaired sibling, on how to help people like Taylor experience the world as fully as we do. It was particularly challenging, because what T loses by not having her sight, she often compensates for with her sense of hearing or touch. The life-size dinosaurs couldn't speak to her, though, and many of the fossils were encased in glass and/or off-limits to wandering fingers. Trying to imagine myself as her, I expressed the sheer size of the dinosaurs by saying that the toe of a T-Rex was as long as her dog, Sunny, or walking with her from the tip of a Stegosaurus' tail to its nose and asking her to count her steps. I watched as John, who is absolutely amazing with her, helped her with the interactive exhibits we were able to find, putting his hands over hers and performing the tasks with her. I watched her eyes grow wide and her mouth form into a tiny "O" during the accompanying movie in the IMAX theater as two velociraptors fought to the death. I saw her nod as a sign that she understood as I explained that some dinosaurs ate meat, and others only ate plants, and some, like most humans, ate both. I laughed earlier today as Mom recounted T's lesson to her on why some dinosaurs fought and others didn't. I watched a familiar look of longing to be "normal" again wash over her face, then just as quickly disappear, as we walked past crowds of kids watching presentations on stage, laughing and clapping at all the right times. And never once in the four-plus hours that we spent at the museum did I ever hear T complain, or see a frown or an angry glare darken her features, or say that she wished she could be someone else, someone who doesn't have to live each and every day wondering why she has to systematically lose the ability to do all of the things she used to be able to do.

My sister is my inspiration, the perfect image of courage and hope, the figure who may every once in awhile shed a tear or yell out of frustration but who never stops seeing the glass as half full and never stops believing that tomorrow, there will be hope.

My sister is at the top of my Angel List.

We recently received an exciting report from Sandra Hofmann, M.D., Ph.D., who was awarded a $50,000 grant by Taylor's Tale in July 2007. Check out our Research page for a short summary.

As Dr. Hofmann's work continues to move forward and Taylor's Tale funds other projects, I'd like to start doing a better job of providing updates on how our donors are making a difference for these kids. In the meantime, please let me know if you have other ideas as to how to make this site better. I developed it with the intent to open a window into our journey and share Taylor's story with the rest of the world, but I also hope that it serves and will always continue to serve as an excellent source of information for our friends, family and supporters from all over the globe.

Again, please email me with questions or suggestions--or just to say hello!

I cry myself to sleep every night, when the relative normalcy of the day falls away around me, and I am left alone with the cool silence that hangs in the air and shadows that dance on the walls; soundless, invisible tears spill over my cheeks, even as my husband believes I am sleeping.

Even as I hear the voices of friends telling me how strong I am, I am crying inside. Often, I'll feel the sting of tears right behind my eyes. If developing a talent for concealing them is a sign of strength, well, then, I suppose I am strong. I wasn't always able to hold them back, so perhaps I am learning to live with this thing we are facing.  I can't call it grief; after all, that's the word we use after we've already lost someone we love, right? And I have not lost Taylor yet.

Sometimes, I feel as though a very small piece of me dies with every day that comes and goes. And I wonder, then, if there will be any way to get it back if we save T. I believe that our souls go on living even after our bodies have failed us, but is it possible to bring a piece of your soul back to life while you are still living? I feel that it is, but I know how difficult that will be, because I will never be whole again unless T is saved. In a way, then, as I search for a way to save her life, I am saving mine, as well. Because if she loses her life to this godforsaken disease, a large part of my soul will die with her. My only wish, then, would be that that part of my soul is not really lost, but rather has gone to Heaven to take care of my little sister.

I try so hard to be strong for those I love--for my family, for T, for the friends who have given so much of themselves to us but who still have their own lives to live. I worry, sometimes, if I am wearing down, and if one day soon I will not be able to hold myself up because I have forgotten my own pain, no matter how real it seems when I write about it or feel that familiar sting of tears. And then, just as I pull myself up off the ground after taking a fall on the soccer field, I steel myself for another day, for another wave of pain, for another dawn, for renewed hope.

Plan not for tomorrow, but discover your own self, because while we never know just what tomorrow may bring, we must know who we are deep down so that we may face our days--whether they are to bring great joy or immense sorrow, a road that is paved or a path cast in shadow.

In July 2005, Mom, Grandma Kathryn, Taylor and I drove down to Oak Island, N.C. for the week. We all missed the island, where we had made so many happy memories in years past, and it was the last summer before my wedding. It would also be another three months before we first noticed anything was wrong with T's vision and exactly a year before she would be diagnosed with Batten Disease.

We stayed in a friend's condo on the loamy shores of the Intracoastal Waterway, just a short bike ride down 48th Street from the clapboard house my grandfather built much of with his own hands when I was five and then sold to get out from under the property taxes when I was in the ninth grade. It was in the sunroom of that house that Grandma Kathryn massaged the migraine pounding beneath my temples after our Easter egg hunt in the park one April and read Till Caswell Fell to me on the flowered loveseat that always felt cool to my skin, even in the sultriest days of summer. It was on that property that I once walked directly into a sandy fire ant colony in my cutoff denim shorts and bare feet and another time got a splinter in my foot on the deck and screamed bloody murder while both my grandparents and my dad held me down and my mom pulled it out with the tweezers. I almost always explored Oak Island shoeless, except for the times when I hopped on one of the rusty bikes Papa Jerry got at the flea market and peddled up to Jimbo's Top 40 Video in the back of the Citgo station to rent a stack of movies. It was along Main Street that I once picked a cattail on the way back from breakfast at Marge's and then worried that the police would come after me because Dad had told me they were protected.

I had another of my migraines for most of the week that summer of 2005, much like the one that had tortured me that April afternoon years before and like the ones that have visited me periodically throughout my life since the very first one in the cool basement of my grandmother's house in Raleigh when I was only eight. I blamed much of the migraine on T; I thought she was whiny and demanding, and she needled at me. More than once, I shouted at her, making her cry. I complained to Mom that T was allowed to get away with murder and that we shouldn't have brought her.

One afternoon, Mom got one of her oyster cravings and suggested we drive to Southport to have dinner at Ship's Chandler on the waterfront. I wasn't feeling well, but I went along, sullen, and T and I picked at each other like children--though only one of us actually was--in the backseat. At dinner, Mom and Grandma Kathryn ate their seafood, and T ate her kids' meal and I the basket of hushpuppies and honey butter I always get at seafood restaurants. Afterwards, the sun hadn't yet sunk beneath the horizon, and we walked along the sidewalk by the water and sat in one of the swings for awhile. I can't count the number of times I sat in those swings to feed the seagulls, or read a good book, or write one of my stories or poems, or watch the ferry going to Bald Head.

I vaguely remember snapping the picture of all of the girls squeezed onto the seat of the swing that night. In it, Mom and Grandma Kathryn are smiling broadly, their hair windblown, and T, like her sister still in a dark mood, is scowling. She is still beautiful, though, her strawberry-blonde hair just starting to get long and her sable eyes, though angry, still very aware of where I am standing and that I am holding a camera. Her skinny legs stick out of her turquoise cotton skirt, still too short to reach the ground.

I keep that picture in a frame in my house to remind me of that week, because it was, in its own unique way, one of the happiest of my life on an island that holds so many priceless memories for me and for our family. Though I write about the headache now, it is not really the headache I remember, or the constant fussing or the disagreements, at least not in my heart. What I really remember is that in those days, T was just a little girl who was fussy some of the time but sweet most of the time, and always smart, and beautiful, and witty enough to keep up with her older sister and anyone else who ever challenged her. To our knowledge, she was not yet the little girl who has Batten Disease, the little girl who was already living on borrowed time.

I asked my husband tonight if he thinks I'm in denial. Sometimes I lose my way; I never forget what I'm fighting for, but every once in awhile, I forget why I'm fighting for it or why I believe this ending has yet to be written.

None of us knows what will happen tomorrow, and in a way, that's what makes life so beautiful. John said to me tonight, "If you could look through a mirror and see 10 years from now, would you?" And you know? I don't think that I would. I used to get hung up on particular items I'd asked Santa to bring me for Christmas, and more than once, I found my mom's secret hiding place for all of the shopping bags full of unwrapped gifts. No matter how excited I was over everything I saw, I still felt the pang of disappointment if that one particular item from the wish list wasn't included. I know what could be in that image on the other side of the mirror, but I don't want to see the truth yet, because believing that there is some good there, that there could be some good there, is the very essence of my survival--and T's survival, if our faith is to be the difference in her life. If the good's not there, I don't want to know yet. I only want to know if there's a cure, and if it will come in T's lifetime, and if she will be happy tomorrow, and the next day, and the next. Otherwise, I don't want to look through the mirror; I don't want to unseal the envelope or unwrap the gift. Every time T says something to the tune of "When I go to school there," or "When I get married," and she says it the way any nine-year-old would say it--full of laughter and love and innocence--my heart aches, and sometimes I want to tell her just how sick she is, but in the same way that I sometimes want to throw a plate on the floor and watch it shatter into pieces, or take John's baseball bat and smash every piece of furniture in my house. I envision those acts, but it's always someone else doing them--someone who looks and sounds just like me, but someone else nevertheless. I haven't come close to taking my anger out in those ways, and I would never, ever wipe out the sweet smile on T's face or extinguish the love in her beautiful brown, unseeing eyes with such words...words that torture me every day, but still words that she does not need to hear. So I only hope that the image of me in the mirror, the image of me in my imagination, can bear the brunt of my anguish, my hatred and my fear, and in the meantime the real me can keep believing, and fighting, and discover the way to shape the mirror's final image.