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.