Tuesday, December 21, 2010

From the Rafters

Mom, Taylor and I made our annual trip uptown to see the Nutcracker at Charlotte's Blumenthal Performing Arts Center on Sunday night.

For me, Christmas wouldn't be whole without these two precious hours spent with my two favorite girls. We were up in the rafters this time around, but none of us cared. Taylor, of course, goes solely for the music. I love the ballet, but I go mostly because almost nothing makes me happier than seeing my mom and my little sister smile. I'm not quite sure how many times I've seen the Nutcracker, but that will never get old.

I cry very little these days; sometimes, I wonder if my tear ducts haven't all but dried out thanks to the events of the past four-plus years. But at the zenith of my favorite part of the ballet, Pas De Deux (the dance of the sugar plum fairy and her prince near the end of Act II), I glanced over at my mom, and I lost it.

Only God knows how many more times the three of us will be able to go to the Nutcracker together. Our next chance is a year away, and I can't take anything that far out for granted. I can't take next month, next week or tomorrow for granted. To be fair, none of us can. But Batten disease changes the game. The curse that is Batten disease makes each day my family is still whole even more of a blessing. The present is fleeting. But those two wonderful hours in the Blumenthal rafters with my girls will live on in my heart forever.

Wednesday, December 15, 2010

Finding My Wings

I snapped this photo with my phone near the very end of the 13.1-mile Thunder Road Half Marathon course this past Saturday morning. If it doesn't strike you as special, take a closer look. The man in the blue shirt is running with a cane. He's blind.

My friend Amy pointed this fellow out to me early on in the race, when the throng of runners still tightly packed the streets of uptown Charlotte. Seconds later, I lost him in the crowd.

3,231 runners completed the 2010 Thunder Road Half Marathon, but for some reason, I crossed paths with the blind runner not once, but twice on our shared journey to the finish line. I can't say the same about any other runner with any degree of certainty. I'm not the most superstitious person in the world. But I believe in divine intervention.

I believe I could have gone the full 26.2 Saturday based on energy alone. My heart and my lungs still felt good at mile 13. But by then, my feet and ankles had already been screaming for mercy for seven whole miles. Many times, my head told me to pull out. Injuries on top of injuries - and the accompanying pain - can do that. I forged on because I was running for Taylor. When I saw the blind man under the bridge, I knew she was right there with me. Shortly afterward, the finish line came into view. Taylor helped me find my wings, and I sprinted the rest of the way.

Saturday, December 4, 2010

If I Have to Crawl

The cold, damp weather chased me indoors this morning for my Thunder Road Half Marathon training. I'm a fan of running in the cold, but not the rain. So I bundled up and headed to the YMCA, where I hit the 1/12 mile-long track with my heart set on completing 120 laps, or 10 miles.

The first mile felt good - nice and easy.

The second mile was better; my muscles were warm, I was into the heart of my playlist, and I coasted.

Near the end of the third mile, I thought about how if I was Taylor running one of her 5Ks, I'd be close to the finish line. When I'm running a race, I like to sprint the rest of the way as soon as the finish line comes into my field of vision. But Taylor never got a glimpse of the finish lines she crossed. She had to get her last burst of energy from somewhere else - somewhere deeper, somewhere purer.

Two laps into the fourth mile, an invisible demon struck a match inside my shoes, and the balls of my feet caught on fire. My achilles whined. Everything else felt good, though. So I pushed on.

Partially to push my very real physical pain out of my mind, I thought about how if I was Taylor, I would be running in darkness. I was too scared to close my eyes on one of the turns, so I closed them for an instant on a straightaway. I felt the presence of other runners and walkers on the tiny track and knew that I would never be able to make it to the far end. I opened my eyes.

Seven laps later, I glanced down and discovered that the entire toe area of the shoe on my right foot was soaked with blood. I never stop in the middle of a mile, though. I had three laps left. Just a quarter of a mile.

As I rounded the third corner of lap 60, I sprinted the length of the last straightaway and right into a chair by the water fountains. I was only halfway through my 10-mile run. But I knew I was done.

I've been injury-prone since I was 15 years old. I've never gotten through a single soccer season without getting hurt. In my mid-20s, I made the inexplicable decision to turn myself into a distance runner. I never really thought about why until this very moment, right here. But I know instantly, without question, that I became a distance runner because of my sister.

In the months after Taylor's diagnosis, I ran to get away from Batten disease. No matter what, running always felt better than crying. I still cried. But I ran more. And after I discovered that I just might have a say in how the story turned out, I ran harder than ever.

Blood-soaked shoes and all, I'll never stop running. Next Saturday, December 11, I'll cross the finish line of my second half marathon, even if I have to crawl. I could never let myself quit. That's not Taylor's style, and it's not my style either. So, to bloody feet and weak ankles and Batten disease, I say bring it on. You may knock me down. But you'll never knock me out.

I'm not only running for myself - I'm running to save Taylor's life. Please consider supporting my efforts through Miles to a Miracle, a new campaign inspired by Taylor's great courage on the race course and in life. Email me to learn how.

Thursday, November 25, 2010

Things I'm Thankful for, Part III

I'm feeling bad that I didn't post an entry for this series last night. John and I went to see a movie and afterward stayed up late making a pumpkin spice roll for Thanksgiving dessert, and it totally slipped my mind. So, technically I need to post twice today to make up for yesterday. However, I'm going to let myself off the hook just this once, because I'm anxious to get over to my parents' house and still have a ham to cook. I also ran the Charlotte SouthPark Turkey Trot 8K with my brother, Stephen, this morning in Taylor's honor and am badly in need of a shower.

So with that said, I think that today, I am most thankful for my family and that God gave me this day to enjoy with them. I am thankful that I have the most wonderful husband in the world who is also my best friend, the best parents - who have made so many sacrifices for me and have given me so much - the best brother and sister a girl could ask for and grandparents with whom I've made more happy memories than I could ever begin to count. I am thankful for all of the other relatives and friends I will not see today. I am thankful that I am, for the most part, healthy and have the strength and the will to fight for my sister's life. I am thankful for the moments when my heart is filled with hope. In those moments, a small part of me believes that I will spend many more Thanksgivings with Taylor. And in those moments, I gather enough strength to go on for another day.

Happy Thanksgiving, and much love to all of my family and friends and everyone who continues to stick with us for the fight against Batten disease!

Tuesday, November 23, 2010

Things I'm Thankful for, Part II

Tonight, I'm thankful for video games. Yes - you read that correctly. An homage to Nintendo doesn't feel very poetic or grand, but in my world, video games mean that I've accomplished necessary tasks to the extent that I don't feel (very) guilty about flipping my own switch to the 'off' position and doing something mindless for awhile. In my world, mindless is healthy, because often, my brain and my heart are so twisted over certain cards we were dealt that stress becomes physically exhausting - even damaging. I try really, really hard to hide the signs, but people close to me know how to spot them.

Sometimes in college, after I'd had a rough day, I'd flop on the vinyl couch in the apartment I shared with three other girls and play Donkey Kong 64 until my roommates had come home from class and gone out and come back home again. Last winter, when I stayed home from work sick with a sinus infection, I played Super Mario Galaxy for nine hours and seven minutes. I know this because the game documents such stretches of lost time. And tonight, to celebrate the beginning of a long holiday weekend, I'm rescuing John from our garage (where he has been painting siding since he got home from the office) so I can beat him at Wii Sports Resort before he annihilates me at Golden Eye.

Taylor plays video games sometimes. She's pretty good at bowling on Wii Sports if you get her lined up just right and help her with her wrist motion the first couple of frames. And she does a mean hula hoop on Wii Fit. Unlike her big sister, though, T prefers to unwind with her music. Put her in a room with a stack of CDs and her CD player or her Ipod, and she'll entertain herself for hours on end. She used to sing all of the words to the songs. These days, she doesn't sing the words very often. Instead, she picks out certain notes and hangs on them forever, like a miniature opera singer. She's (almost) always in key. Sometimes we have to remind T not to do this - at least not so loudly - when we're in a public place. But part of me hates to take it away from her.  Pictures mean nothing to her now. Music is everything.

Here's to all of the mindless activities ever invented for the escapement and enjoyment of the mind and the soul. And here's to the next few hours in front of my TV. Wish me luck! :)

Monday, November 22, 2010

Things I'm Thankful for, Part I

In honor of the upcoming Thanksgiving holiday, I've decided to pen a new entry on each of the next four days, with each post dedicated to something for which I'm thankful.

Tonight, I'm thankful for my ability to see. I'm blessed to possess two eyes that, with the assistance of contact lenses or thick glasses, receive reflected light and usher it through first the cornea, then the pupil, then the lens and then the retina, where finally it is converted into electrical impulses and sent to my brain, where an image is produced. This is an amazing process that took nearly three full lines to describe but that in reality happens instantaneously and without requiring any thought or effort on my part. Since I was nine years old, I've had a hard time climbing out of bed in the morning without first putting my glasses on, but once I do that, the world is crystal-clear.

I'm thankful for all of the visual memories that will forever remain preserved in my heart. This very instant, I can see the way the sunlight trickled through the leaves of a certain tree whose canopy watches over a sidewalk that runs alongside the Undergraduate Library on the campus of the University of North Carolina. I used to purposely take that sidewalk to South Campus just so I could walk through that dappled light. Now, I can see the fountain at SouthPark Mall in my hometown, as well as the thousands of pennies slumbering under the water's surface, and my dad's face as he tells me, his only child, a story, and the scoop of mint chocolate chip ice cream perched atop a sugar cone from the Baskin Robbins whose departure from the mall many years ago almost left me in tears. (I immortalized that particular memory in the novel I never finished once the doctors discovered the terrible truth about my sister's genes.) Now, I can see my great-grandmother's laugh - because she laughed with her eyes - as she watches a funny movie with me in her basement, an ice-cold can of "Co-cola" in her hand and an unfinished game of Chinese checkers on the coffee table. Now, I can see my husband's face as he asks me to marry him on the sidewalk in front of my grandparents' house in Wake Forest, NC, where we spent our first wonderful long weekend together as best friends just three days before he asked me out (not the first time he asked, but the first time I said "yes") during the first semester of our senior year of high school. Now, I can see my little sister's beautiful, working eyes focus on me as she runs to give me a hug.

I graduated from college in the spring of 2004, and that tree beside the library is no longer a regular part of my life. The SouthPark Baskin Robbins is so long-gone that most people living in Charlotte these days probably don't even know that it ever existed. My great-grandmother passed away a few years ago, and I never got to tell her goodbye. My husband and I are still as in love as we were on our wedding day, but my grandmother is very sick, and the house where John asked me to marry him was sold two months ago. And my sister has not made eye contact with me in a very long time, because Batten disease came along and decided that she doesn't deserve to see. So I cherish photos I took of her more than a few years ago - the ones in which she is looking at the camera. And more than ever, I cherish each and every moment spent with my blind sister. I cherish the miracle that is her presence in my life, and I hate the disease that wags its finger at me every day, tells me to stop fighting back, tells me I should be satisfied with the memories I already have and stop dreaming of making more.

Saturday, November 13, 2010

Miles to a Miracle!!!

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit - some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor's school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates - never mind that she's blind. Taylor has always refused to watch the figurative race - life itself - from the sidelines - and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy - an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.

On the day of the practice 5K shortly before their first shot at the real thing - the Jingle Jog in uptown Charlotte - Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others - including her classmates and coaches - fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T's feat that day and immortalized it in an article she wrote for Endurance Magazine.

A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister's face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing - even Batten disease - is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word 'Believe,' written in big chalk letters stretched across the pavement. And even though T didn't win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don't know exactly how long it will take us to get there, the finish line - in this case, the cure for Batten disease - does exist. And the smarter and faster we run, the more kids like Taylor we'll save.

Enter Miles to a Miracle, Taylor's Tale's exciting new campaign to fight the disease that threatens to steal Taylor's ability to run and so much else. T's story is about running, but you can do whatever activity you love for kids with Batten disease - whether it's running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own - from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 - the distance in miles around the globe - in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don't think you'll do any fundraising but still want to help us use Taylor's inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend's effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:


Go to Miles to a Miracle!

Wednesday, November 3, 2010

Two Little Letters

"People who attempt the difficult often attain the impossible."

-Mimi B. Hull, Ph.D.

I strive to live by these words everyday. I try to remind myself that while life's not perfect, there's always something better down the road, even if we're forced to clear a lot of hurdles before we get there. I pray for the strength and the will to fight those two little letters - 'im' - clutching the 'possible' and holding it back. We WILL win our battle against those letters someday soon, and all that will be left is the miracle. Come hell or high water, I believe.

Love to my mom, who shared this little dose of inspiration with me on one of my down days. Love to my sister who, no matter how many hurdles stand in her way, will always be our miracle.

Saturday, October 23, 2010

New Video from BDSRA

Please take a few minutes to watch this new video from the Batten Disease Support and Research Association (BDSRA), filmed at the organization's annual conference in Chicago in August 2010. It's a wonderful collection of perspectives from families and other individuals deeply affected by Batten disease. I'm featured on the video starting around the 4:30 minute mark. Thank you so much to our friends at BDSRA for creating this great tool in the fight against Batten disease and for allowing me to tell my story. Remember, you can help us fight this tragic disease by spreading the word and also by making a donation at http://www.taylorstale.com/get-involved. Thank you for your support!

The Batten Journey from On Scene Digital Printing on Vimeo.

Wednesday, October 13, 2010

What Next?

In 1984, Reynolds Price - acclaimed writer, Rhodes Scholar, Milton expert, Duke University professor of English and my third cousin - learned he had cancer: a 10-inch-long, malignant tumor wrapped around his spine that he came to call 'the eel.'

Imagine getting that diagnosis today. 26 years ago, the eel was a death sentence. And yet 26 years later, Reynolds is still writing books and teaching his usual three courses at Duke. Seven years ago, when I was 21, I drove 10 minutes from my Chapel Hill apartment to Reynolds' house in the woods. We spent the afternoon talking about spirituality, Scotch, ginger molasses cookies (inspired by the Foster's Market molasses cookies I'd brought to share) and even a little writing. That day still conjures up the clearest of pictures and deep-down feelings whenever it crosses my mind.

I'm attending a great class with my mom at our church on Wednesday evenings. It focuses on spirituality in Reynolds' works. Tonight, we discussed A Whole New Life: An Illness and a Healing. This extraordinary book is the story of Reynolds' agonizing illness and astounding survival. It was published in 1994, and the first time I read it as a college student, I had no inkling of the sadistic disease lurking in my little sister's cells. I think that I will read it again. On page 185 of the paperback edition, Reynolds makes a profound statement. At the time of my first reading, my life was free from the kind of pain and suffering that I know all too well these days. In fact, when our teacher at church, the poet/novelist Tony Abbott, brought the passage to our attention in tonight's class, I read it with virgin eyes, as though I had never encountered it before:

"If belief in an ultimately benign creator who notices his creatures is available to you, you may want to try at first to focus your will on the absolute first ground-level question to ask him, her or faceless it. Again, that's not "Why me?" but "What next?"

In the early days following Taylor's diagnosis, I often plainly asked God all possible variations of that question:
  • "Why her?"
  • "Why me?"
  • "Why us?"
I was on the verge of losing my faith entirely in the wake of Batten's entrance into our lives when I suddenly realized that I was asking the wrong question. Whether or not there was a why, I certainly wasn't doing anyone any good, least of all Taylor, by questioning the sober reality of her defective CLN1 gene. It was on that day that I decided the only way to fight back was to start figuring out how to play the cards in my hand. Otherwise, I might as well have thrown all my chips on the table and left the game.

Here is another passage from that same page that I simply love:

"My own luck here was long prepared, from early childhood; but as with all sorts of invisible luck, there have been forced treks these past ten years when I all but quit and begged to die. Even then though I'd try to recall a passage of daunting eloquence in the thirtieth chapter of the Book of Deuteronomy where the baffling God of Jews and Christians says

'I call Heaven and Earth to witness against you today that I have set life and death in front of you, blessing and curse. Therefore choose life so that you and your seed may last to love the Lord your God....'"

Though she hasn't read Reynolds' book, Taylor gets it. She's always gotten it. T greets each new day and bids it goodnight choosing life, no matter how tough things are between sunrise and sunset. A life with Batten disease surely isn't one we would have chosen for her, nor is it one she would have chosen for herself had she been given a choice of cards. But they're her cards, and ours because we love her. And because I love her, I choose life for her, too. And here's a question for Batten disease: you gave us a good fight today. We fought right back. We're still playing the game. So what next?

Tuesday, October 5, 2010

The Girl Who Escaped in the Middle of the Night

My piano teacher of many years, Dzidra Reimanis, called me today. I sent her a note yesterday to check in on her and also share the news that I now have a grand piano and plan on playing regularly again. This afternoon, not 36 hours after I put the envelope in my mailbox, my cell phone rang. I was shocked to learn that Dzidra is 83 years old (but still teaching full-time).

I started taking lessons from Dzidra before my feet reached the floor.

Dzidra was always ageless in my eyes. The day my mother (a piano teacher herself) took me to Dzidra's house for my first-ever piano lesson, I was four years old and still learning to read - so I guess you could say I learned my ABCs, treble clef and bass clef all at the same time. Over the 14-odd years that I went to that house, growing and changing constantly and in the later years still wearing soccer shorts and shinguards from practice and driving my own car, she was always the same Dzidra. Dzidra left Latvia, a tiny country on the Baltic Sea in northern Europe, in the middle of the night as a young girl. I discovered her origins one day when I asked her what the letters 'RIGA' on her car license plate  meant. Dzidra explained that Riga is the capital of Latvia. I was always fascinated with Dzidra's story after that day. I was proud of the fact that I was one of the only students who always spelled her name correctly on competition entry forms. And as much as I hated practicing the piano at home, I was in awe of Dzidra's love for the art of playing it and teaching it. And it is an art. When you walk in Dzidra's back door, you enter an open room with a couch, coffee table, shelf and two Steinway grands standing back to back - one for students, and one for Dzidra.

I have been back in my hometown since the day I graduated from UNC. I live 10 minutes away from Dzidra and work two minutes away from her. And yet I haven't been to see her at all in the past six years. After talking to her for a few fleeting minutes this afternoon, I wondered why. That's why I'm going to see her first thing in the morning on my way to the office.

Think about the people who've touched you in some way. Do you get to see them everyday? How often do you talk to them? Maybe you live under the same roof and drink coffee at the same table every morning or go to sleep in the same bed every night. If you're like me, you can easily rattle off the names of people who have had a profound impact on your life, and yet for half of them, you can't remember the last time you saw each other or even talked on the phone. If you're anything like me in this regard, I hope you'll make this one promise to yourself and the special people in your life, either past or present: call them. Send them a letter or a card. Show up on their doorstep. Schedule time to catch up. And though it's awfully convenient, Facebook doesn't count. I take the easy way out sometimes, too. But it just isn't the same.

I haven't tried hard enough with Dzidra or anyone else for that matter - other teachers; my grandparents; parents; friends; cousins I suddenly stopped treating like cousins when the marriage broke up; my sister, whose beautiful life slips away more and more with each passing year. I care so much about all of them, but then I get busy and tell myself that tomorrow's another day. It took a series of tragic events in my life over the past four years - each and every one of which deeply affects someone I love - to understand this, and still I forget. But then I come across an old photo, or the phone rings, and I remember.

Friday, October 1, 2010

Angels Swoop Down

Just when I begin to wonder whether I have enough strength to continue, angels swoop down out of the clouds and save me.

Thank you for renewing my faith in miracles. You know who you are.

That's all.

Wednesday, September 29, 2010

Exploring Fairyland on Wheels

On Monday, after three nights at a wonderfully remote lodge in the Shenandoah Valley of Virginia, John and I realized we weren't ready to go home and so headed two hours northeast - away from our house in Charlotte - to check out some of the caverns in the area.

We enjoyed the first set, Endless Caverns; my only regret leaving was that the third (lowest) level of the cave was not open to the public. I'm that cat whose curiosity will get it killed one day, and hearing the tour guide talk about the closed-off portion of the cave was rough.

The second set, Luray Caverns, required a 20-minute drive up the highway.  A mile before we reached the parking lot entrance, we'd tagged Luray as endlessly more commercialized than Endless. Seedy tourist traps dotted the road, and the caverns themselves accounted for just one of the attractions accessed from the parking lot. We briefly considered nixing Luray for the Skyline Drive in nearby Shenandoah National Park, but in the end, we sucked it up, paid our $46 and joined one of the tour groups in line to receive audio tour headsets like the ones they hand out at Alcatraz.

As soon as we took our first few steps into the underground wonderland, I took in the brick walkways, handrails, audio tour signs and yards upon yards of wires leading to harsh floodlamps in the eons-old rock. As I silently cursed the ultra-modernization of the caverns themselves and imagined myself instead exploring a wild, undeveloped cave, I noticed that a young woman in a wheelchair and her parents had joined our group. Before I had time to wonder how she would be able to navigate the steep stairs we had just descended, two teenaged guides came up behind her and pushed a hidden button that activated a sophisticated lift system. The guides negotiated with the wheelchair until its owner was first safely on the lift and then, just moments later, on the smooth, gently sloped brick walkway that snaked deeper into the cave. For the duration of the 75-minute tour, the woman and her parents brought up the rear but never kept the rest of us waiting. By the time we climbed back up those stairs toward daylight, I was glad John and I had chosen to stay and thankful, too, that the woman in the wheelchair had been given the chance to see the caverns, just like us.

Back when Taylor first became visually impaired, I quickly grew very aware of physically handicapped people around me as well as the opportunities and assistance (or lack thereof) afforded to them in public places. I never really thought about the mechanics of finding the right button in the elevator or distinguishing the ladies' room from the men's until my sister could no longer read the signs. Now, I'm hypersensitive of those mechanics as well as the feelings of people like T, and I marvel at the lack of sensitivity some others show toward them. Blindness is T's most significant handicap today, but I know in my heart that unless we find a cure quickly, she will eventually join many of her fellow Batten disease children in spending most of her days in a wheelchair. And while I initially wrung my hands over the considerable liberties the private owners took with their personal gold mine at Luray Caverns, I know that if my sister could see that underground fairyland, I wouldn't want a steep staircase to stand in her way.

Wednesday, September 22, 2010

When the Clouds Disappear

We take so much for granted in life. Why is it that it often takes losing something (or the prospect of losing it) to realize what we have? I took childhood for granted, and then, one day, I looked in the mirror and discovered that I was all grown up. I treated summers with my (now) husband that way during the four years that we attended different colleges, and every year, right around the time that July changed over to August, it occurred to me that we were about to be apart for another nine months, and I tried to cram an entire relationship into two weeks. Luckily for me, he eventually married me anyway. I treated college that way; I graduated. I took my best friend from college for granted, and now I never see her, even though a mere 150 miles of highway separates us. I know now that while true friendships last forever, time with friends doesn't always survive. I took my grandmother for granted - she was much younger than my friends' grandmothers, and I loved her more than anything, and I thought I'd have her forever. Now, she has a terrible brain disease, and whenever I see her, I want to hold her and never let go and burst into tears at the same time. And I ALWAYS took my little sister for granted, right up until July 24, 2006, when the geneticist told my parents she has a fatal monster called Batten disease. Even now, I struggle to find a balance between spending time with her and trying to save her, much of which I do alone on my laptop while she sits in my parents' house just three miles down the road.

I'm often guilty of taking life itself for granted, no matter how many times I'm reminded of its fragility (by watching people I love suffer or passing by crumpled cars and ambulances and fire trucks on the side of the road). I get into a rhythm. I get up in the morning and, if it's a weekday, float from the kitchen (where the caffeine is), to the shower, to the closet, to rush-hour traffic to, finally, my office. Every night, I sink into bed far too close to the time that I'm scheduled to rise and do it all over again, closing a chapter on another day sans great adventure, with only my dreams to connect me to the whole wide, wonderful world just out of reach. Sometimes, deep down inside, I want to get in my car and drive west or on a plane and fly halfway around the world, just because I can.

I talk about dancing in the rain; but I've gotten perhaps too skilled at knowing when it's raining, something that may have come from sharpening my survival instinct over these past four years of my life laced with sadness. What I don't remind myself often enough is to look UP at that fleeting blue sky whenever the clouds dissapear.

Wednesday, September 15, 2010


It's been a nostalgic week around here.

Friday night, John and I flew through the aisles at Michael's 10 minutes before they closed and made it up to checkout with armfuls of art supplies just as they were locking the front door. We recently dragged out our high school art portfolios and got inspired (to make more art, not take the time to move the enormous portfolios from the office floor back to the closet where they belong). This fall, whenever our interest in the football game on TV is just lukewarm, we'll watch it from the back of our bonus room, where we have a rickety table that wouldn't exactly strike you as a place for art but will become one just the same.

Two days after our adventure at Michael's, the Panthers were down two touchdowns when I heard the piano movers arrive (I wish I could have seen their faces the moment they discovered my mountainous driveway, double-checked the address on the mailbox, realized that yes, that was the house and regret that they weren't charging me a whole lot more money). The grand piano my mom got for her 14th birthday - the one that has resided at my grandmother's house ever since - is now sitting in my great room. It is a resilient instrument, having survived a fire and a couple of moves. It is a beautiful piece of art and deserves to be played by someone who is not 10 years out of practice, which is why I tried to teach myself to sight-read again tonight and unexpectedly played a duet with my dog, Daisy, who isn't used to the piano and, as I just learned, likes to sit behind the bench and bark on the high notes.

After Daisy and I finished our duet tonight, I returned to my laptop and bought tickets to our high school reunion. I don't look all that much different than I did 10 years ago, but somehow, when I wasn't paying attention, I got 10 years older.

I can explain the sudden urge to relearn the piano after all these years, but I can't explain why John and I dug through all of the junk in our storage closet to get to a bunch of drawings/paintings we did in high school, nor can I explain what possessed us to spend all that money on art supplies (money well spent, but why now?). I also can't explain why I sat cross-legged in the floor of our office after dinner tonight, rifling through photos from my Charlotte Soccer Club days, or why I'm listening to Deep Blue Something right now, which hasn't been cool since I was 14 (if it ever was). Maybe I'm running away from the present. After all, it's been raining in my world this week, and for all the optimism I preach in this space, for all that talk about dancing in the rain, a lot of times I just want to crawl into my shell and try in vain to stay dry. My life wasn't perfect before I knew my sister has Batten disease, but it sure was a hell of a lot easier. I only wish I'd known how blessed I was at the time. Don't we all say that at some point in our lives?

Mom, Taylor and I went to the Blumenthal Sunday night to see Mary Poppins. For all the injustices that have been done to T, she's still better at dancing in the rain than her big sister. She couldn't see the coolest parts of the show (when Bert walked up one wall, across the ceiling and down the other wall, and when Mary Poppins floated out over the crowd and glided into one of the balconies), but she still smiled and laughed and had a great time and clapped along with the crowd when the cast sang 'Supercalifragilisticexpialadocious.' T loves theater/ballet/etc. and always has. Even when she was really little, The Nutcracker was one of the highlights of the year for her.

Here is an old picture of T, our brother Stephen and me at one of those Christmas productions when T was a toddler. I realize the picture quality's bad, but does she look happy or what? Back then, I took those moments for granted. Now, I treasure them, partly because I don't have any idea how many more we'll share. I'm already nostalgic for our night at Mary Poppins. I'm nostalgic for the dinner we shared at Jason's Deli two weeks ago. I'm nostalgic for future moments with T, and I hope to God there will be a lot of them.

Tuesday, September 7, 2010

Rain from a Blue Sky

I have to begin this post by saying 'thank you' to my Uncle David and Aunt Holly, who just hosted us at their house on glittering Smith Mountain Lake, Va. for a quick Labor Day trip. The escape didn't come a moment too soon for any of us, and under an unmarred blue sky by day and velvet canvas spattered with stars by night, I, for one, enjoyed two of the happiest days I've had in a long, long time.

I started this blog with the intent to share stories about my sister, Taylor, Batten disease and the nonprofit we founded to fight it. Even now, several years later, I continue to be amazed at the sorts of experiences that move me to log in to the blog site and write. In the interest of full disclosure, I will say that those experiences have, at times, suffered a drought as the disease has marched on in my sister. She is quieter, more reserved these days; completely blind instead of mostly blind; dances and talks less. I tell myself that part of this story is her age - in my experience, one of the hardest for a girl. But I know that I would be lying to myself if I didn't attribute much of the sense of loss I feel these days to the disease.

I would also be lying if my blogs were all doom and gloom, my words painting our lives as all bad.

My current favorite quote belongs to Cindy Smith, mother of Brandon, who lost his life to Batten disease last fall:

"Life is not waiting for the storm to pass. It's learning to dance in the rain."

I never dreamed that 16 words could mean so much. Cindy's great wisdom lights the way when my path becomes dark; it helps me smile when all I want to do is cry. What better way to live our lives on this earth - whether we are stuck in a hurricane or a gentle spring rain? When I forget how to dance, I imagine myself running barefoot through sideways rain, my eyes squeezed shut and a big grin plastered across my face.

Again in the interest of honesty here, I won't try to convince myself that Taylor enjoyed our time at the lake in the same way that any of the rest of us did - from my parents and David and Holly on down to my little cousins and my husband and brother and myself. When we took the boat out late Sunday afternoon, she couldn't see the green mountain rising out of the sparkling clear water to touch the perfect sky. When John caught a huge carp, she likely heard its big body flopping against the dock but will never know what it looked like. When my cousins, ages 8 and 3, set off by themselves in the kayak to paddle around the cove, T couldn't join them.

T did, however, enjoy curling up with her Lion King soundtrack and an oatmeal cookie on the dock. When she snuggled up close to Mom in the boat and let the wind blow through her hair, she smiled. When John took Taylor and me tubing, she screamed roller coaster screams and implored him to go faster. Though David and Holly's dock is near the back of the cove, Dad told us T's yelps of joy reached them all the way from out in the channel. And, best of all, when Stephen and I sandwiched T between us on the supercharged Sea-Doo and I took them both for a wild ride, she never once asked me to slow down. Her fingers gripped my life vest a little bit tighter with each bump and jolt even as she threw her head back and laughed the kind of laugh that may very well add years to my life every time one reaches my ears. Near the end of the ride, I followed a boat back to our cove, criss-crossing its wake in an effort to feel those little fingers grip me even more tightly. And then, we were suspended in mid-air, and in a single instant frozen in time, my sister yelled, "Woo hoo!" That was when I knew for sure that in that moment at least, under that perfect blue sky, we were dancing in the rain.

Saturday, August 28, 2010

Miles for T

Late this past spring, I was running in my neighborhood when an idea popped into my head. The idea didn't have any shape or sense of order to speak of - when I climbed up my mountainous driveway at the end of my run, all I knew was that I wanted to use running as a way to fight Batten disease. Running is one of my purest forms of therapy, and it's also central to what many people have said is the most inspiring of many inspiring stories about Taylor. Without the advantage of sight but with the blessings of her own heart and a big-hearted friend, my sister completed two 5Ks when she was enrolled in the Girls on the Run program at her school.

Three months later, with the help of some very good friends of my own, my hodgepodge idea is becoming a reality. About a month from now, Taylor's Tale will unveil an exciting new campaign that will allow us to touch every part of the globe that has Internet access. And no matter how you prefer to stay active - by running, swimming, cycling, hiking, walking - anything that allows you to to log miles - you'll be able to do what you love in honor of kids all over the world who are fighting Batten disease. Along the way, you'll have the opportunity to share your own stories through words, pictures and videos - and connect with others logging miles, from the tree-lined paths of Charlotte, N.C., to Sioux Falls, S.D., to the foggy streets of London and even to faraway places like Australia and New Zealand (these are just some of the locales of friends who have already made a pledge to join our team!).

I'm so excited about this campaign that I'm having to work really, really hard to keep most of the details under wraps. With that said, it's probably best if I wrap up this particular post for now, but please stay tuned, as the launch will happen in the very near future. Thanks for all that you do to help us believe in miracles!

Saturday, August 21, 2010

Cheating Death

I've cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents - both younger at the time than I am today - that I'd be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then - miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly and, occasionally, a headache so severe that I'm almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents' house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don't remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother's wedding dress, hermetically sealed inside a cardboard box in - you guessed it - the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe five and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn't asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom's attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into a tall span of nothingness, time stood still, and I actually saw my mom's visor fly off her head as she came toward me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back, or my neck, or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet popsicle shaped like a frog and with gumballs for eyes. By the time I'd licked the popsicle stick clean, I'd made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, S.C. for a weekend-long soccer tournament. We played five or six games - I can't remember for sure - in a 36-hour span. By Sunday night, I was drained. I wasn't sure I'd be able to make it all the way back to Chapel Hill, so I stopped at John's apartment at UNC-Charlotte, walked inside and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John's apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barrelled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn't hit that speed limit sign, I wouldn't have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I'm not a betting person, but I'm willing to bet my Honda Civic wouldn't have fared too well, and I'd have fared even worse.

I'm feeling pretty lucky at the moment, and I haven't even mentioned a few other exciting car accidents, or last year's brief cancer scare, or my bad copy of the gene that causes infantile Batten disease - paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn't accidentally set her grandparents' house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I've been granted my fair share of new leases on life, and every morning when I wake up, whether or not I'm looking forward to the particulars of my day, I'm just thankful for the day. And for as long as God thinks I should be here, I'll keep fighting for Taylor - to help her cheat death, just this one time.

Tuesday, August 17, 2010

Birthday Wish

When I was 15, I came home from school on a dismal January afternoon and found my mom sitting cross-legged in the floor of her closet. As I stood in the doorway, my backpack still slung over one shoulder, she told me she was pregnant, due in August.

A high school sophomore just a few months shy of her 16th birthday, I couldn't fathom the idea that my mom was pregnant. So, my supremely adolescent response to the whole matter was to grab my Sony Discman (still cool in 1998), lace up my sneakers and run out into the sleet and freezing rain. More than an hour later, I returned home with frozen eyelashes and wet clothes and walked right past my mom. I didn't bring up her news once that night - and eight months later, when my little sister was born, I found various reasons not to make it to the hospital. The afternoon Taylor came home, though, I raced my now-husband up the stairs to peer over the side of her crib (he won the race and maintains that he has known her longer). First place or not, I was instantly hooked.

That day feels like it happened in another lifetime. This Thursday, the baby I fell in love with the moment I saw her will celebrate her 12th birthday. Over the past 12 years, we've watched countless movies together, ridden bicycles in the driveway, done silly dances in our socks on the fireplace hearth, raced down the corridors of an underground mall in Toronto in T's stroller, gotten our nails done, cheered for the TarHeels, bought special treats for each other's dogs, eaten lunch with the Disney princesses and collected their autographs, rocked to the Cheetah Girls, Miley Cyrus and the Jonas Brothers at the local arena, built towering sandcastles in the sand, let the waves crash over our ankles and feet and, best of all, given each other lots of hugs. I thank God every day for the sister I never imagined I'd have or even knew that I wanted. I pray to God every day that the memories won't have to end.

She doesn't know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won't be cured by this Thursday - I'm a realist - but real progress can be made. As a friend of Taylor's Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister's life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.

Grant My Birthday Wish for Taylor

Thursday, August 5, 2010

Along for the Ride

Nearly four days have passed since I returned home to Charlotte, and yet I am still trying to process all that I saw, heard and felt at the annual BDSRA conference in Chicago. As I said a few posts ago, I knew going in that the conference would be mentally and emotionally challenging for me. I officially attended as the president of Taylor's Tale, and my mission in that sense was threefold: learn as much as possible about research, talk to as many researchers as possible and deliver a check for a research project. Research, research, research. Focusing on the research helped me achieve the goals I set for my time, and our organization's time, in Chicago.

Words to describe my weekend: whirlwind. Exhilarating. Sleep-deprived. Inspiring. Painful. There were times I didn't know if I'd make it. I know some families - many of them long-time veterans of this conference - will read this and wonder why. I realize that for many families, the conference is a time to connect with the only other people in the world who can possibly understand what they're going through. A time to get advice from clinical folks who know how to at least attempt to untangle the tangled web of symptoms Batten disease kids face. In that sense at least, Chicago was easier than Rochester in '07. I don't like it, because it acknowledges that my sister has this disease, but I now know that I belong.

I was in the middle of a research session on Saturday morning when solace came to me in the form of a blinking red light on my BlackBerry. My sister had sent me an email - an email she typed thanks to a fantastic little program on her laptop that says the characters aloud as she punches the keys. And there on the phone's tiny little screen was my sister's heart and soul - her journal entry recounting our vacation in the Virgin Islands:

We went to the virgin islands. John saw a little shark and it ate a fish right in front of his knee. Scary! A BIG iguana sat under my lounge chair. He was as big as sunny with a tail as long as a snake.

From that point on, my day only got crazier, but unlike the prior 36 hours in the Chicago hotel, I flew from session to conversation to PSA filming to session to basement gym treadmill to conversation to banquet to hotel bar (where I could still be found at 12:30 in the morning, less than seven hours before my ride to the airport was scheduled to appear in the drive out front) on the wings of an angel. And as I sat exhausted on the plane the next morning, I felt hollowed out but also more whole, and I knew then that my sister's courage had gotten me through yet another dip in the roller coaster at a time when I was not strong enough to ride it alone.

Friday, July 30, 2010

Dream Therapy

My first full day in Chicago is not in the books, and I've already managed to glean a lot of great information about infantile and late infantile research. I look forward to sharing many details in our summer newsletter. It'll be delivered in the next few weeks, so if you haven't already, please be sure to go to our website and sign up to receive it!

Talking to scientists - getting the scoop on where things stand straight from the source - is incredibly important to the work we do at Taylor's Tale. It's not enough to help me sleep at night, though. Those conversations give me plenty to chew on, but I go somewhere else for my daily dose of inspiration - a medication I sorely need whenever I start to feel angry at a world that includes Batten disease or get impatient about the speed of science.

Today's dose of inspiration is this picture of Taylor and our dad while on vacation in the Virgin Islands last weekend. Dad told a joke at his own expense and asked T if he should puff up his chest for the camera. Right as I snapped the picture, T considered this and laughed. It was the best moment of that day. That's the kind of moment that helps me run faster and fight harder. It's the kind of moment that makes my dreams good again.

Déjà vu

I arrived in Chicago a few hours ago for the Batten Disease Support and Research Association (BDSRA) annual conference.

As I walked into the hotel lobby, I couldn't help feeling as though I'd been here before. I have, in fact, only been to Chicago once before, and that was for a work conference at a place with a view of Michigan Avenue. What I remembered, rather, was the moment my mom and I entered a different hotel in Rochester three years ago for our first BDSRA conference, which that year was paired with the international scientific congress on neuronal ceroid lipofuscinosis (NCL), the fancy name for Batten disease. We were still new to this then, not quite 12 months removed from that fateful day in July when a geneticist told my parents that their youngest daughter was going to die. We were scared because we were still getting to know Batten disease at that point. We were scared because we knew the conference hotel would be teeming with kids far more affected than Taylor at the time - our unwanted crystal balls. And yet, encasing the fear that resided deep within us like a hard, defiant shell was an enormous sense of confidence and our untarnished, shared belief that T would be different, that we would win.

I still wear that shell, but its once spotless exterior is covered in nicks after four hard years of watching a little girl I love, and our family, bend (but not break - not yet) under the weight of the tragedy that was encoded in all of T's genes and half of mine. I just realized that I never blogged on the most recent anniversary of T's diagnosis - July 24, one week ago tomorrow. I wonder now if counting those years ever mattered, or if it ever will. One thing Batten disease has managed to teach me, after all, is the importance of cherishing each day. I am simply too human to tackle this whole years or even months at a time. So instead, I tackle each day. I am not quite the same person I was when I walked into that Rochester hotel three years ago. In some ways, I am weaker. And yet, I am stronger - buoyed by the enduring hope that all of our friends' and donors' great gifts of time, friendship, love and money have given me. On Saturday night, I will award another research grant on behalf of Taylor's Tale as well as all those who support us and all those we aim to save. And for another 365 days, I will believe.

Sunday, July 18, 2010

Major Victory Scored for Rare Disease Community

Thanks to our partner, the Kakkis EveryLife Foundation, for their work on behalf of the rare disease community. The lives of children with Batten disease depend on not only the momentous work being done in research labs across the nation and world, but also on the ability of this research to make the leap from bench to bedside. The Kakkis Foundation's CureTheProcess campaign - an effort Taylor's Tale endorsed earlier this year - is dedicated to putting treatments for rare/orphan diseases like Batten disease on the fast track.

A major victory was just scored on behalf of everyone who suffers from rare/orphan diseases, due in large part to the work of our friends at Kakkis. Read the press release.

Sunday, July 4, 2010

Petals Off a Rose

It is July 4, a beautiful day in Charlotte. The Yankees game is on television, and the team in pinstripes is threatening to score. In a few hours, we will join friends and family for a cookout and, later, fireworks.

My mind and my heart, though, are on Oak Island off the coast of North Carolina, in the high-ceilinged kitchen of our beach house. I am 12. My mom is slicing a watermelon, and my grandmother is folding our quilt that doubles as a picnic blanket into a perfect rectangle. The men are sweating in their khaki shorts on the fake leather couches in the adjoining den. My brother, Stephen, is in the corner, playing a handheld video game. I am at the kitchen table - the same table that years later will sit in my college apartment and, after that, my post-graduation apartment back home, and finally, the bonus room in my house. I am drawing pictures in bright colors and eating a popsicle. Some of the cherry-flavored juices dribble onto my picture. I give one of my cartoon characters a red shirt to hide the spots. We are just a few hours away from piling into the car and driving seven miles down Main Street and over the bridge to the mainland and into the picturesque town of Southport on the shores of the Cape Fear River. Before reaching the waterfront park, we will stop at Hardee's for fried chicken and biscuits and mashed potatoes and gravy and sweet tea. At the park, we will spread our blanket among the others and stretch out to eat under a hazy blue sky. After dinner, my brother and I will walk down to the pier and buy red, white and blue snow cones. Someone gives us 10 dollars to buy fluorescent light rings that we will wear around our necks after the sun goes down. Just before nine, I put my head in my grandmother's lap and wait for the fireworks to light up the sky, an easy smile stretched across my small face.

It is just one version of a memory that was a staple of my childhood. From year to year, the minor details may have changed - for example, one year, Stephen and I didn't make it to the trailer that sold snow cones, because we ran through the sidewalk sprinklers after dinner until the adults worried, because it was getting dark and they didn't want to lose us in the throng of people on the lawn.

I haven't spent July 4 on the Southport waterfront in 12 years. My grandparents sold the beach house on Oak Island when I was in high school. I have been back to the island twice since then, and only once for an overnight trip. On that particular trip, I was relieved to find that the house was still there. I was sad to see the unfamiliar sedan parked in the unpaved driveway. My mom, grandmother, Taylor and I stayed in a friend's condo on the Intracoastal Waterway half a mile from the old house. I had a migraine the night we drove to Southport to sit on the swings a stone's throw from the picnic table that still had my name carved into the top in block letters and found my six-year-old sister's constant chattering unbearable. I yelled at her a lot. During a moment of temporary sanity, though, I took a picture of the others sitting together on the swing. It is in a frame in my guest room today. I keep the door to that room closed most of the time, but sometimes I'll walk in there just to look at that picture. In it, T's strawberry-blonde hair is long. As always, she is in pink. She can clearly see me standing there with the camera pointed at her, and she is looking at me. Her feet don't touch the ground. Almost exactly one year later, she will be diagnosed with Batten disease.

A neurodegenerative disease is, in a way, like the passage of time. I have faith that there will be always something new to look forward to. After all, I met my husband around the time we sold the beach house. My mom had Taylor the last summer we spent there - a memory cemented by the picture of her very pregnant on the couch in the sun room. I met some of my closest friends on campus in Chapel Hill years later.

Time, though, while promising the creation of new happy memories, strips some of the old ones away. Since Taylor was diagnosed with Batten disease in the summer of '06, I have lost my great-grandmother, worried constantly about my grandfather's failing physical health and the unimaginable stress my parents have to endure, watched degenerative brain disease tighten its long-held grip on one of my grandmothers and spring a sudden, forceful, rapidly moving attack on the other. Meanwhile, Batten, in its own dreadful way, has systematically robbed my beautiful little sister completely of sight, to some degree speech and to great degree happiness. Time has a way of washing away many of the painful memories, but sometimes it also steals from us the memories that are most beautiful, like pulling petals off a rose.

Saturday, July 3, 2010

Moments of Wonder

Life is unpredictable.

Sometimes, beautiful sunrises are followed by unfortunate phone calls that haunt the recipients for the rest of their lives. Other times, tragic accidents bring two people together who otherwise may never have met, and those people fall in love. We struggle to get through some days and claw and scratch our way out of the worst of them. When we find ourselves in a long, dark tunnel, it's the light at the end, either seen or imagined - breathing in mountaintop air, hearing the laugh of a child, getting a hug from a friend - that helps us find our way.

Life is a mixed bag.

In the middle of the night last night, I gave up on sleep. Seeing that my husband had had better luck finding peace, I climbed out of bed gingerly, tiptoed around my sleeping dog's bed on the floor of our room, opened the door quietly and padded down the hall to our great room. I sat down on the couch. I briefly took in, for the first time, the way light and shadows play on the 18-foot ceiling and walls when the world is sleeping. And then, without warning, I started to cry. But the sun still rose this morning, and not 10 hours after my solitary moment of grief, I laced up my shoes and stepped outside into a beautiful, sub-90-degree July day under bright green leaves that whispered in the midday breeze and a blue sky unmarred by clouds. I took a walk with my husband and my dog and breathed it all in, and I was happy.

Life is full of terrible pain and grief, but even in its darkest hours, life can be illuminated by moments of great wonder and beauty. And those - those are the moments that make life worth living.

Monday, June 28, 2010

It's Been a Long Time

It's been quite a long time since I took such an extended break from my blog. I had surgery to fix a broken (obliterated apparently) nose - another fun soccer souvenir - 17 days ago, and the recovery period has officially turned me into a couch potato (minus the laptop in the evenings at least - usually one of my resident couch friends). In any case, I just have to figure that having that much work done close to my thinker has totally robbed me of any creative juices - juices I'm still searching for even now. In any case, I did want to blog tonight, if only to:

1) let everyone know that I'm still here...


2) thank the wonderful hostesses, attendees and all others who supported Taylor's Tale last night at our Australia wine tasting, the last in the Wine Around the World for Taylor series of tastings. Yesterday also marked the birthday of the best mom in the whole world (the mom of Taylor, her big brother and yours truly), so our wine tasting was made complete by tasty cupcakes and a toast to birthday wishes (I know of at least one wish my mom made last night - just guessing - when she blew out that candle). Please check out our website for a recap of the event and, eventually, photos. If you are on Facebook, you can view the photos now on our page.

That's it - for now! More to come later.

Thursday, June 10, 2010

What Do You Wish For?

I went out for a sweet treat last night with my two favorite girls - Taylor and my mom. We experienced the euphoria of Yoforia, a new frozen yogurt shop situated conveniently (i.e. dangerously) on the way home from my office. After eating our yogurt piled high with scrumptious toppings, we sat on the bench in front of the fountain outside to watch the sky as it thought about storming, then sprinkled a few stray drops, then shifted colors like a kaleidescope until finally fading into early dusk.

I can't walk by a fountain without making a wish - a trait that was developed through countless nights at the old SouthPark Mall fountain outside the now long-extinct Baskin Robbins with my dad and enhanced in recent years by my increased need for fulfilled wishes. So as the late afternoon sky changed from cotton candy blue to deep purple and lavender to fiery orange and back again, we pulled out our wallets and produced handfuls of change, and we fed the fountain with pennies, nickels, dimes and quarters to the fountain's and our hearts' content, squeezing our eyes shut tight and making a wish on every last coin.

I wish for a strong run on the rain-soaked streets of my neighborhood as soon as I publish this post. I wish for a sound night's sleep tonight. I wish for a successful surgery tomorrow morning to fix the nose I broke playing soccer three months ago. I wish to feel well enough this weekend to watch the Americans at least play England to a draw in their World Cup opener. I wish for a summer filled with charmed memories created from here to the white sands of the Virgin Islands - images and smiles to bottle up for another day. I wish for a coming year in which the dark shadow of Batten disease moves at the pace of a snail - or not at all - to envelop my sister. I wish to see her grow up to experience the same milestones I have been lucky enough to live - graduating from high school and college, falling in love, getting married, discovering oneself and finding a way in the world. I wish for a cure. I wish for the strength, the courage and, above all, the miracle that could write her happy ending.

Sunday, June 6, 2010

Give Me a Sail

Learning that someone you love has Batten disease is like being stabbed with a serrated knife. Watching Batten disease attack someone you love is like twisting that knife a little more deeply over days, weeks, months and years.

After almost four years of this, I know a lot more about Batten disease but still nothing more about the future than I did on day one. If there is one thing I do know, though, it's that I have to keep breathing.

Because tomorrow, the sun will rise...and who knows what the tide will bring? 

Give me a sail.

Thursday, June 3, 2010

Ride the Booty Loop for Taylor's Tale!

Check it out - one of our board members, Anne Pipkin, is leading an effort to ride Charlotte's famous 24 Hours of Booty in honor of Taylor's Tale. See Anne's message below for more details. Thank you, Anne!

p.s. if you would like to wear a Taylor's Tale t-shirt for the ride but do not have one, please email me.


Even though the weekend registration is full, on Saturday, July 31, we can all ride together in honor of Taylor's Tale! If you do not want to ride, visit our web page and support the 24 Hours of Booty organization, which aims to unite all people 
suffering from disease.

Cut and paste the link below; then click on Charlotte; then Register; then Reboot; then Register as a Team Member; then input Taylor's Tale as the team name; then click Join Team; then enter the team password (taylorrocks); then enter your info. Ride ten minutes or ten hours...but join us!

Our base camp will be 1626 Queens Road West...come one, come all!

Batten Disease Awareness Weekend

This weekend marks International Batten Disease Awareness Weekend, a time dedicated to raising awareness of Batten disease. For Taylor’s Tale, it’s a time to share our story.

If you can do just three of the following easy ideas to raise awareness of Taylor’s Tale and Batten disease sometime this weekend, you can help us write a happy ending for all children like Taylor. For more ideas, click here.

How You Can Help 

Watch the Taylor's Tale video if you haven't seen it, and share it with friends either through Causes on Facebook, by posting the link or by sending by email.

Share our Facebook page with your friends by recommending it.

Pledge your status on Facebook, Twitter, etc. with a donation call to action and link to the Taylor’s Tale site (Example: Every child deserves a happy ending. Help children with Batten disease by making a donation at www.taylorstale.com.)

Wear your Taylor's Tale T-shirt over the weekend. If you don’t have one, don purple clothing or a purple ribbon.

Share Taylor’s story with three people who have never heard of Taylor's Tale.

Make your email signature purple for the weekend and following week.


Laura King Edwards

Taylor's Tale
7804 Fairview Road, Box 135
Charlotte, NC 28226-4998

Every Child Deserves a Happy Ending
Signed in purple to help write the happy ending for Taylor’s Tale by finding a cure for Batten disease. 

Monday, May 24, 2010


Last night, my mom and I took Taylor to see the Broadway show Wicked on the wings of someone's kindness. It was an amazing production - one my mom and I both left saying we'd see again in a heartbeat. Near the end of the first act, when Elphaba (a.k.a. the Wicked Witch of the West) rose high above the stage crowned by an eerily beautiful blue light, every single last little white-blonde hair on my arms stood up. But when my sister squeezed my hand and laughed out loud at the billy goat professor Doctor Dillamond's baaaaaahhhs, my heart soared.

Thank you to our anonymous angel for the gift of a memory my two favorite girls and I will never forget.

Thursday, May 13, 2010

Anonymous Angel

Last weekend, my mom asked me if I believe everything happens for a reason. I didn't really give her a straight answer. You see, I used to think everything happened for a reason. Then, after 24 years, four months and 23 days, I learned that my sister was born with a defective gene that affects her ability to produce an important enzyme, giving her Batten disease. In the three years, nine months and 13 days since that crushing diagnosis, I still haven't landed on any good reason for Taylor to be sick. 

I had a rough start to my week. Then, Tuesday night, I had a late soccer game. We were all stretching on the sidelines before the game started when the lights suddenly went out. That gave us about 20 minutes to kill in the dark while we waited for a few phone calls to be made and the lights to warm back up. So as we were standing there, we talked about random things. One of my teammates mentioned she had three tickets to Wicked that she needed to sell. She'd already seen the Broadway show about the witches of Oz, she said. I said my little sister, who is sick, would give anything to go. She told me she'd sell the $80 tickets to me for $65 apiece. 

Taylor loves The Wizard of Oz. She collects Dorothy snow globes and has wanted to see Wicked very badly for a very long time - ever since our good friend, Callie, told her about it. So of course I told my teammate I'd buy the tickets. 

We had another game tonight, so I headed to the field with a $195 check made out to my teammate with the tickets. When I got there, I told her we could just make the exchange after the game. She responded by saying we should make the switch before we played - that she wanted to talk to me anyway. When we got out of earshot of the rest of our team, she told me she didn't need my check. She wasn't allowed to say who, but someone on the team had bought the tickets for me. 

On Monday, I was gearing up for a really bad week. I could feel myself heading downhill on the never-ending roller coaster. But as I drove home tonight, I counted three great acts of kindness directed at my little sister and our family in less than a week: the first two by T's classmates, and the last by an anonymous angel who plays soccer with me once or twice a week. 

I still don't think everything happens for a reason. Until T is cured, any silver lining in her disease will elude me. But I do believe that T attends the school she does for a reason. And I do believe that those lights went out on the field Tuesday night for a reason. Thanks to a lot of compassionate kids, Taylor's Tale is $1,250 closer to awarding another year of funding for an important research project this July. And thanks to my anonymous angel, on the evening of Sunday, May 23, I'll get to see my sister smile big enough to get me through the inevitable dips in the roller coaster.