"For every action, there is an equal and opposite reaction." --Newton's Third Law of Motion

John and I attended the wedding of two friends who are very close to our hearts yesterday afternoon here in Charlotte. Almost nothing on this earth can equal the joining of those who are meant for one another, and we were honored to witness it.

In the midst of my happiness, however, I found myself thinking once again that if history prevails, my younger sister will never live to see her own wedding day. As I sat in the church pew next to my husband, watched the procession and listened to the music--the very same music I chose for our ceremony nearly two years ago--I blinked back tears and then suddenly discovered that I didn't know which of them were for the bride and groom, and which of them were for Taylor. My love for all of them tell me that the answer is some mixture of the two.

Life is cyclical. Juxtaposed against times of joy, such as a birth or a marriage, are times of sadness, often marked by death or illness. On the same note, our moments of joy are made a thousand times sweeter by the tragedies we must also face--or rather the momentary absence of them. My wedding day was the happiest day of my life, but my memory of it is both brightened and blemished by the memory of the day that proceeded it by exactly one month--the day T was diagnosed with Batten Disease. I understand that we must experience loss; I only wish that we had more control over the nature or the depth of that loss. If the euphoria I experienced in the days leading up to and immediately following my wedding day--my sense of being on top of the world, as I said to all of our guests when I toasted my parents--had to be shattered, why must that have happened at the expense of my sister?
 
A little over a week ago, my mom told the story of a conversation she shared with T on a car ride to attend a play about Helen Keller. T informed Mom that she planned to go to the "Tar Heel school," then to vet school at N.C. State and then finally to law school at Northwestern like our good friend, Callie. My mom smiled at a little girl's dreams that would have been farfetched even if she was perfectly healthy. However, when T went on to explain that she would drive herself and her dog, Sunny, to Chicago, it was no longer funny. After all, as Mom mused, these were a little girl's dreams. How can a little girl's dreams be taken any way but seriously? Yes, my sister believes she will grow up and do something special. She even expects, as Mom pointed out, to drive a car. This, coming from a little girl who is totally blind save for perhaps the ability to distinguish between total darkness and bright sunshine.

After Mom told me about her conversation with T, I suddenly remembered why it is so important that we save Taylor, but more than that, I realized more clearly than ever how universal her story is, and how I must do what I can to save all children with rare orphan diseases. You may never have met another child with Batten Disease, and perhaps you have never even met Taylor. And, even if you have, you will never meet another quite like her again. She is what we always believed her to be--special in so many ways--but she is also like any other child, healthy or not, in that she has dreams, and she fully believes that she will someday achieve all of them. She believes that she will someday drive a car; that she will continue her education; that she will meet someone, and they will fall in love, and she will have her day as the beautiful bride I know with all of my heart that she would be. She believes that she will have children, and that she will grow old to watch them accomplish all of their hopes and dreams. Just as she is unique, she is like any other child, or any adult for that matter. And I don't think it is merely childish innocence or naiveté that allows her to believe she will achieve them. I call it courage.

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.

When I spout off to someone about how T could make history--how she could change medicine forever when she becomes the first to survive her rotten disease--I get inspired. I always forget on some level that I'm talking about my sister in those moments, though, whether I'm speaking to a crowd or with a close friend in private. When I get on my soapbox, I'm always talking about someone else's beloved little sister, someone I'm certainly pulling for but also someone I couldn't ever love to the very core as I do T. Separation is my defense mechanism. It's the only way I survive.

Mom just told me that T had a really, really good day today. She was so happy, and she was recalling things--just rattling them off--from the first chapter of her homework reading (listening) assignment that even Mom couldn't remember. Apparently the only sad or negative part of her day was when I called and uninvited myself from dinner after sneezing and coughing my way through a bad cold all day at the office. The disappointment in her voice was palpable, and it broke my heart, but I've been told how important it is to keep T from getting sick. I'll get to see her Friday, though, when Mom and Dad need a babysitter (John and I are often the very willing volunteers). Mom passed down word to T that she could come to our house only if she agreed to let us watch the NCAA tournament games, and T said that was fine, and could she bring the pom poms that came with the UNC cheerleader outfit she wore last Halloween and help us cheer? To which I said yes, even though the Tar Heels will have already won their game on Thursday, and we will be pulling for the Davidson Wildcats in their game.

This is the T I know--the T who, no matter who's hearing the story or the moment, will always be my sister in my heart, my thoughts and my spoken words, who I fell in love with nine years ago, the T who, regardless of how overactive my various defense mechanisms are on any given day, couldn't possibly be someone else's sister, because I just love her too damn much.

The other night, Mom was telling me how she was sitting in the floor of her closet that early afternoon when T walked in and put her arms around her. She was quiet--when T has something on her mind, she gets quiet--and then she simply said, "Mom, I don't want to be blind anymore. I want to be able to see like my friends again." It was one of those moments for which Mom just didn't have a response.

Moments like that are what make it so hard to keep fighting sometimes. Fighting through constant heartbreak and sadness is a lot more difficult than it looks. Moments like that, though, are also the very reason why we must fight--today, tomorrow and always, until the day comes that we can tell T she will  have tomorrows, and it won't just be wishful thinking.

This past Wednesday morning, March 4, Eve Carson, the student body president at my alma mater, was killed in a cowardly and apparently random act of violence just around the block from where I spent three-and-a-half years getting an education and discovering myself. I didn't know Eve, but I've watched the news coverage over the past several days. Last night, just before the start of the Duke-Carolina basketball game that would decide the regular season ACC champion, ESPN ran a few photos of Eve, and our archrivals made a classy move by holding a moment of silence in her honor in Cameron Indoor Stadium. I have to wonder if the normally raucous, sweltering gym has ever been as quiet as it was for Eve last night. And sitting there on my couch at home, I cried for Eve--and for her family, for her friends and for our university--really, the world--that lost so much with her passing.

A shooting death like Eve's and a neurodegenerative disorder like Batten Disease don't have much in common other than the fact that they both put a premature, cruel end to lives that hold--or held--so much love and promise. There aren't many people out there who can truly understand what my family is going through, because they haven't lived it (and thank God they haven't), but then again, I won't ever be able to understand the grief and anguish that Eve's family is undoubtedly experiencing at this very moment. I don't want any part of their grief, and I wouldn't wish our grief on anyone else.

What makes Eve's death and Taylor's illness more painful still is imagining all their lives could and should be, or should have been. One of the questions I asked repeatedly early on and still is, "Why us? Why Taylor?" My mom has asked herself and God more than once what she ever did to deserve this. The counselor I saw for several weeks following T's diagnosis asked me to read a book called When Bad Things Happen to Good People, by Harold S. Kushner. There's not much in my opinion that a paperback self-help book can do to cut through the pain we suffer daily, but it did help in the sense that I came to terms with the fact that sometimes, no matter how honorably we live our lives, bad things happen to us, and rather than being the cause of our suffering, God suffers along with us. If I hadn't ever learned that important lesson, I would have lost my faith over what's happening to T.

This world of ours is equal parts tragic and beautiful, and to fully experience the beautiful, we have to shoulder life's tragedies, no matter how large or small. I still hope that one day, the light from the beautiful will melt away the darkness of T's crushing diagnosis. Perhaps one day she, too, will walk along the brick sidewalks beneath the canopies of the UNC campus and look forward to the goldenrod leaves of fall and blooming dogwoods of spring, as Eve and I once did and as she so badly hopes to do.

T and five of her girlfriends put on an awesome dance act in the Fletcher School talent show tonight! They were a sight to see--they all wore matching shirts, headsets and body glitter and really had their moves down pat! I think it was the most I've ever enjoyed a Cheetah Girls song (T informed me that it's from the Cheetah Girls 3 album, so apparently the girls are on the cutting edge).

I thought kids were cruel growing up. In the fourth grade, when I was T's age, I was the awkward girl wearing thick glasses who sat on the hill reading a book during recess instead of playing Indian dodge-ball or jumping rope with the other kids. I got called "Four Eyes" more times than I can count and took a lot of heat for winning a contest by reading the most hours (276). I got beat up by the class bully in the fifth grade. When I traded my glasses in for contact lenses in the sixth grade and discovered that I was a good athlete, the teasing turned to my tomboyishness. Yes, I thought kids were cruel.

Kids are still cruel and will be till the end of time. The cool kids and the other kids will always sit at different tables in the cafeteria at lunch. I think part of growing up is understanding what makes us "cool" and why having a seat at that table should never be the most important thing in life.

T is blind and has a certain awkwardness about her that I'm still getting used to--even though I'll always think she's beautiful. It's an awkwardness she didn't always have and one that has gotten progressively worse since we saw the first signs. But as I watched her with those other little girls tonight, I realized I was witnessing true acts of kindness that couldn't be matched by any adult. Those girls take care of her. Kids will be kids sometimes, no matter how kind their hearts are, but they love her, and part of me wanted to run up to all five of them and their mothers after the routine and squeeze them tight for bringing happiness to my sister.

I hate Batten Disease. It's worse than any bully I ever came across, and after fighting back for 19 months we still haven't knocked it down, but I dare Batten Disease to try and take T's smiles and her laughs and her love away from her. I know in my heart that love is stronger than evil, and I hope to God that love will prevail. In the meantime, I count our blessings when I think of all of the angels--grown men and women and elementary school-age girls and boys--who make this world a better place.

I remember driving south on I-85 through the Piedmont region of North Carolina one May afternoon in 2001. I had the windows down and the sunroof open in my first car--a '91 turquoise Honda Accord with worn tan leather seats--and a warm breeze blew through my hair. I had a Matchbox Twenty CD in the Sony Discman hooked up to the cassette deck. My life was packed up in various cardboard boxes and nondescript duffel bags in the backseat and trunk of the Accord. That afternoon, I believed I was leaving the most difficult year of my life behind me for good. I was 19 years old.

I had finished the last exam of my freshman year earlier that morning at N.C. State University. That moment came scarcely eight months after I first stepped foot on the University of North Carolina campus as a wide-eyed 18 year-old. I'd gotten in early decision and arrived in Chapel Hill with an impressive resume ranging from AP to National Merit Scholar to successful athlete to extracurricular overachiever. I packed all of my "accolades" in my parents' car when they drove me to my freshman dorm in late August and fully expected to repeat them all over again in college.

Almost immediately, though, I became a victim of my own perfectionism. I realized early on that I couldn't be the best at every thing I did--not even close, in fact. I wasn't the best writer; I wasn't the best artist; I didn't get the best grades, and I couldn't even try to walk on to the varsity soccer team that year--much less make it--due to injuries I'd sustained in a star-crossed senior season in Charlotte, the remnants of which I still face today.

My perfectionism became my own worst enemy as I constantly judged and broke myself down. I then went on to experience an agonizing couple of months emotionally and probably shouldn't have even been in school at that point, but I stayed, because I didn't dare become a failure, and I eked out a dean's list semester. Then, because I was weak, or emotionally distressed, or delusional--call it what you want--I thought I could fix my problem by simply changing the scenery, so I transferred to N.C. State and moved to Raleigh after Christmas. State was a warm, welcome place, and on that campus and in that town I found a handful of very good people who held me up and helped me through. On a cold Saturday afternoon in February, under the bluest blue sky, I ran alone around a track, and as I hit the last straightaway before heading home for the day, I suddenly looked up at the sky and knew right then that I needed to go back to Chapel Hill. Whether I felt that way because it was the right place for me or because I needed to face my demons, I'm not sure why, but the following Monday, I reapplied at Carolina and was accepted. I went back and faced my so-called demons head-on, spending the last three years of my undergraduate career at times feeling as though I wasn't quite sure of my own footing or where my soul was going but always finding happiness in the smallest things and finding happiness in my own adequacies and inadequacies. On my graduation day in May 2004, three years after that solitary drive down I-85, I believed in myself, and I believed that because I had overcome what I had, I could conquer anything life happened to throw at me. And for awhile, I did.

Then came the worst news of my life. I learned that my little sister has something called Batten Disease, and I am powerless to change that. Nothing I can do will change that now, because try as I might, I can't turn back time, and nothing I ever earned or achieved gave me the ability to simply pass this by. I can't pack it up in a duffel, throw it in a closet and hope that the summer will last forever and I'll never have to look at it again. I have to look at it today, and I have to look at it tomorrow, and there's no summer vacation. There's not even a weekend. And I know now that what I experienced my freshman year couldn't even come close to fully preparing me for this. I do think I have a different perspective on life these days, and I know what's important (and believe me, none of the things I put on my admission application as a high school senior make the list), but even so, this disease has left me begging for mercy. I've asked God to make her well, but I know in my heart that even that may not be enough. After all, bad things do happen to good people, and sometimes there's no rhyme or reason for it. I never thought I deserved the pain I felt early in my college career, but it's nothing compared to what Taylor's feeling, and I haven't heard her complain, and she hasn't asked for a transfer or a change of scenery.

All there is to do, then, is hope that I can in some small way make a difference in this world and hope that when I come out on the other side, I will be unscathed, and she will be with me. I'm far from perfect--I learned that a long time ago--but I'm not lacking for love and passion. I know now that this is the greatest challenge I will ever face, and though we've made great strides toward finding our miracle, this disease is so terrible and my pain is so real that it has left me on my knees.

When John and I were married in June 2006, Taylor and our cousin, Morgan, were flower girls in the wedding. Considering her recent vision problems in the months and weeks leading up to the big day, we worried that T would have trouble walking down the aisle in the garden in which we were to exchange our vows. Her task seemed even more daunting in the event that it should rain, in which case we were to be married in the historic inn's parlor, using a dimly-lit stone staircase as our aisle.

Our fears were heightened as the day drew near; T's vision only got worse. Then, just 12 days before the wedding, she was diagnosed with retinitis pigmentosa, a degenerative eye disease. I remember the moment I first saw the tiny slip of paper containing those words lying on the desk in my parents' kitchen as I arrived for my brother's high school graduation; the words carried so much pain. Little did we know that they were only the beginning.

Riding high on emotions as I looked forward to being a bride, I proclaimed louder than perhaps anyone else in the family that T could live a full life, even if she eventually lost most of her vision. Those emotions carried into that early summer weekend in Blowing Rock, N.C., as John and I gathered with our close family and friends to finally tie the knot nine years after meeting on the first day of 10th grade. I rode the wave still as the rain came pouring down and we were forced to move the ceremony inside. I rode the wave as T made it down the stairs without falling. I rode it as she and Morgan flitted around the dance floor in their pretty flower girl dresses and trailed me throughout the evening with stars in their eyes, no doubt imagining their own wedding days (as all little girls do).

One month later, all of that was shattered. Momentarily, I stopped thinking about how T would overcome her eventual blindness and started thinking about how I was going to lose her. I still imagined her living her own dreams and experiencing her own milestones--graduations, weddings, children--but with those images came tears and hatred for the disease I was told would deny her of all of them. I stopped imagining T's own wedding and started to wonder if she would ever even be in another wedding, much less see her own. Those were rough days. I still have rough days. No matter how much hope I have on any given day, I still have to cut through the sadness to find it--to feel it.

Bit by bit since that fateful day in July 2006, I've picked up the shards that are my heart, my soul, my former life, and have tried my damndest to put them back together, if in a slightly crooked fashion. I'll never be put back together again quite the way I was on my wedding day. None of us will. That was the happiest day of my life to that point and still is. But I'm learning to look for happiness through the Batten Disease lens. That's the lens through which we peer now, forever and always. Even if T is cured, it will be there, because our experience now is shaping us into who we will be for the rest of our lives.

So, the point of all of this meandering is that an extraordinary person and friend has helped T find happiness through her lens. My dear friend, Katie, who always let me cry in the first hours of this immense pain and who continues to do so today (the tears aren't always visible, but they're there), who has cried tears for T herself and who has given us the priceless gifts of hope and compassion throughout our journey, has asked my sister to be in her wedding this June. On the most extraordinary, important day of their young lives, she and her fiance have asked T to be by their sides as they exchange vows. My sister is blind; our concerns about her role in my wedding, before she had entered her darkness, seem so very long ago. She is very sick--I don't use that word very often, but she is--and try as we might, I know that she may never wear our mother's wedding dress, as I did. But I don't worry about T's ability to walk down the aisle in Katie's wedding as I did before my own. T dares her disease to deny her of happiness. She has amazed and inspired me with her flexibility, her adaptability, her great strength and her endless courage. I don't ever doubt T these days; I only doubt myself.

Katie has taken a piece of her heart, a piece of her life, and placed it in my little sister's loving, outstretched hand--not once, but twice. When I tossed my bouquet at my own wedding, it hit the ceiling in the cramped parlor and landed on the floor at Katie's feet. After a short pause, she snatched it up, laughing, then gave it to Taylor. We joked about it at the time...and it must have looked silly, watching my bouquet smack the ceiling and then plop on the floor! But that small act of kindness by Katie, to give the bouquet to a starry-eyed, dreamy seven-year-old little girl, has in the end become just a prelude to an even more noble act of compassion and love that will live on in a little girl forever, whether she is here among us or in the clouds watching over us.

I need to post this one, too. I'd logged off my web client for the night but then needed to put it up while the tears were still fresh.

Zane's Story

Thank you to Zane's parents for helping me cry. It's been so long...at least on the outside...

I have to believe that because T has been given time...time due only to some unexplained extra mutation on her defective CLN1 gene, the same defective gene that took Zane away from his parents after just 23 months...I just have to believe that means something. I have to believe we're meant to work miracles with these precious, borrowed years. In any case, over the past nine years, I have grown to love my sister so much that it hurts. I have seen glimmers of hope and the promise of fulfilled dreams, and I have grown to love her so much that to lose her will shatter me.

Click here to view a short documentary if you have 10 minutes to spare and room for some tears.

If you're coming to Taylor's Fairy Tale Ball on Friday, you're in for a treat! Remember-- even if you haven't RSVP'ed, tickets are still available and will be on sale at the door for $75. If you need any help finding your way to Roof with a View, please email me for directions.

I'm finding my way these days, too. It's been an interesting span over the past few months for my family, which halfway explains why I haven't been posting here too often. All I'll say is that lately, I've learned a lot about what's "real" and what's not. Several times each day, I'll get frustrated about something or another, or I'll allow myself to get upset about something that doesn't really matter in the grand scheme of things, and then I have to tell myself, "Remember what's real." I say it out loud, too--just for good measure (if anyone's ever overheard me, they probably thought I was nuts--which isn't very far from the truth some days!). I keep a string of beads T made for me on a particularly rough day hanging from my computer monitor at work to remind me of what's real when I'm at the office. What's real is the love T put into the beads as she strung them. Throughout what was truly one of the most important days of our journey thus far, I kept an angel coin in my pocket and reached for it whenever I needed to remind myself that T was in good hands. It made it home with me and still goes into my pocket each morning. What's real is the life-changing path we're on and the forces that lead us. Some days they lead us into darkness; I'm realistic, so I accept the fact that we will have those days. I still believe, though, that those forces will eventually lead us to the light we're all searching for.

I remember once reading a story about a frog who fell to the bottom of the well. Every time he hopped, he advanced two stones' height closer to the sunlight at the top of the well, only to then fall and lose half the distance he'd gained. It was frustrating for the frog, but he did eventually make it to the top. I know this won't be easy. I realize that T drew a pretty bad lot to begin with--but it's her lot, and there's nothing we can do to change what she drew. The only thing we have any control over is what we do with the lot she's been given. And 18 months in, we've left the bottom of the well behind.

So, if you will, I'm going to take the frog's example and keep hopping. I'll hop for the rest of my life if I have to, and I'll carry T in my arms as I do. The cure is my sunlight.

If you live in the Charlotte area, please be sure to pick up a copy of the current Charlotte Weekly when you get a chance (it hit newstands and homes today). It includes a fantastic article about Taylor's Tale and the upcoming Fairy Tale Ball! You can also access the full edition at www.thecharlotteweekly.com. It's the January 25-February 1 issue and should be online shortly.

I want to remind everyone that Taylor's Fairy Tale Ball is just two weeks from this Friday! If you haven't bought your tickets yet, try to do so by this Friday, January 25 (ticket prices increase afterwards). My friends have put together a great event in the true spirit of T. They've worked very hard, and I encourage everyone to attend and help us make magic for Taylor on what promises to be a memorable evening. I am honored to share the program with Dr. David Pearce of the University of Rochester. Dr. Pearce and his colleagues wake up every day and go to the office in the name of children like my sister, and I have an incredible amount of respect for him. I will do my best to hold up my end of the bargain.

Someone told me what feels like a long time ago--just after T was diagnosed--that getting through her illness would make me a stronger person. Maybe so, but I don't feel like my moral stature is worth the price of T's life. She means so much more than that. I'd rather be a weakling and still have T. Furthermore, I don't always feel like I'm very strong. I used to build some impressive structures with decks of playing cards when I was little, but the best part was knocking them over at the end. It was so easy. That's what I am--a house of cards. I may appear to be strong, but if you took away the friends, family and even complete strangers who have been touched by T's story, I'd fall in a heap. So no, I don't think that my becoming a better person is the silver lining here. I'm still the same person I always was. Perhaps the only thing that's changed about me is that over the past year and a half, I've developed a clearer understanding of the true silver lining--the support, compassion and endless love we have all received and my ultimate realization of how omnipresent those things are in this world.

My doctor called me this morning with the results of my carrier testing. They came back positive. I'm not sure what I expected to hear, but I certainly would have rather heard that my future children never have to worry about passing Batten Disease on to their children or, worst case, getting it themselves. My own genetics are really just a subplot at this point, though. I have some control, because I know. My parents didn't know until T was three and a half weeks shy of her eighth birthday. The difference in my sister and me is just about prefixes, really. Because it's a heterozygous trait in my case, I have the luxury of calling it a subplot. T's homozygous trait forces her to deal with a lot more. My focus now is T and other children just as unfortunate as her. While I was upset this morning, I quickly realized that today is no different from yesterday. I've been walking around with this gene for almost 26 years, and in that sense, today is better than yesterday, because I do know. The saddest thing is hearing about the families who have multiple children with Batten Disease, because they were born too close together to realize what had happened before it was too late. I know families like that, and I hurt for them. I wish there was more we could realistically do to seek these things out ahead of time. It's too bad that Batten isn't the only misfortune written into our human blueprints, either. There are genes that cause breast cancer, susceptibility to heart disease and a host of other bad things.

Everything about this disease has consumed me since the moment Taylor was diagnosed in July 2006. I forget sometimes how good things were for me, and for my family, before that fateful day. I forget sometimes how good some of those things still are. Something this tragic permeates life, though. You can't get away from it. I can read a book or go for a run or watch a college basketball game and divide my attention temporarily, but it never leaves my consciousness. It's always top-of-mind. How could it not be? 

I wish I didn't worry that if I take a day off, it's a day I'm stealing from Taylor.

I wish I could be a better friend. I wish I could remember to ask my friends about their upcoming weddings more often or what they did over the weekend.

I wish I could be a better wife. I wish I could tell my husband yes every time my eyes are glazing over in our home office and he asks me if we can hang out.

I wish I could be a better sister. I wish I could tell T that I'm absolutely positive we'll save her life.

I've been riding a wave for the past 18 months, and the last couple of weeks have been particularly emotional. I think my blog actually benefits when I'm going through a difficult phase; the words flow more freely, and I post more often. In the thick of things, though, I forget to actually let people know what's going on with Taylor. So tonight, I figure it's time to let everyone take a break from the inside of my head and catch up with T.

A week ago last Friday, T was treated to a fun night by the Charlotte Bobcats at the team's game vs. the New Orleans Hornets. A special friend in the Bobcats organization made it possible for T to meet most of the players, cheerleaders and the PA announcer and then "watch" the game from great seats with her family. She stood down in the tunnel by the locker room as the players came by to run out onto the court. She told Sean May and Raymond Felton she wanted to be a Tar Heel and got rewarded with low fives. She crawled under the velvet rope to take a picture under the mural of Gerald Wallace, her favorite player. During the game, she cheered nonstop against the team I pulled for growing up, when they were the Charlotte Hornets. Amazingly, she knew when to chant "Defense" even before the crowd started in to give her a cue. I live to hear the laugh and the smile I was treated to all night.

Just this past Friday afternoon, I made it to T's Braille lesson with Jill at Fletcher and managed to go unnoticed in the tiny room with my camcorder for a full 20 minutes before a "beep" signaled the end of the tape and T caught me. It took a James Bond-like performance to pull the wool over T, who can't see but has the best hearing of anyone I know. It's pretty fascinating to watch someone learn such an important "language--" the language that allows people like my sister the opportunity to find a common thread with the sighted world. T and Jill use neat tools like styrofoam-like balls and six-cup muffin tins to learn the different sequences of one to six dots that make up the Braille alphabet. Jill has promised to teach me to read Braille with my eyes--she says that sighted people shouldn't try to learn as T does--and I'm going to take her up on the offer. I want to be able to connect to T's world in every way that I can. I can sense the disconnect she feels when she says things like, "But Laura, why is Miss Jill going to teach you Braille? You can see. Braille's only for blind people."

While no one can see or experience our world through quite the lenses that T can, all of us need to continue to try and bridge the gap as much as possible. T is currently stuck on an island you and I have never been to, but there are things we can do to move our shore closer. Perhaps one day, we can get close enough to reach across the water and touch her outstretched fingers with ours. Perhaps one day we can even build a bridge for her to come back to us and once again see our land and the blue skies above.

There is nothing more beautiful--or more human--than love, and there is nothing more engrained in our very existence on this earth than the love of a child, because that kind of love is boundless. It starts in their souls and is expressed in their smiles, in their eyes, and in the way they hold your hand. It is embodied by their unwavering loyalty, even in the face of cruelty and shame.

Khaled Hosseini's The Kite Runner is one of my favorite books. It paints a picture that is at once fascinating and horrifying of a country and of a culture that is vastly different from the one I've always known. Imagine watching a woman being stoned at midfield during the halftime of a soccer game, or children who are barely old enough to walk shot down in the streets where they should be playing. Now imagine that all of us are walking upon the same earth and beneath the same sky. How can we have so many different universes on a single planet, and what is it that ties our universes together?

The answer is love. In the midst of great violence, injustice and tragedy, Hassan's love for and loyalty to Amir in the book is very real. Love is what makes us human. It is what ties us inextricably to one another, no matter how different the lens through which we view the world or how different we are from one another. The moment you lose sight of love and forget how to be good is when you cease to be human.  

Taylor's love is like none other I've ever known. She's going through hell, and so are we. There are times when she's angry, as we are, or sad, as we are. But more often than not, her existence is defined not by the tragedy of a disease that's encoded in her genes but by the palpable love, the life and the warmth I feel when she holds my hand. I will not stand by silent and inactive and let the hell take her away from us, and us from her. The moment I do that, I have forgotten how to be good. And for as long as I'm walking upon this green earth and beneath this boundless sky, I want to feel the warmth of her hand in mine.