Things I’m Thankful For, Part I

Published: November 23, 2010  ~   0
By Laura Edwards

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 9 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 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, the closing of which 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, North Carolina, 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, and tells me I should be satisfied with the memories I already have and stop dreaming of making more.

Miles to a Miracle!!!

Published: November 13, 2010  ~   0
By Laura Edwards

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:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!

Two Little Letters

Published: November 4, 2010  ~   0
By Laura Edwards

“People who attempt the difficult often attain the impossible.” –Mimi B. Hull, PhD

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 who many hurdles stand in her way, will always be our miracle.

New Video from BDSRA

Published: October 23, 2010  ~   0
By Laura Edwards

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 here. Thank you for your support!

[vimeo http://www.vimeo.com/16104157 w=400&h=225] The Batten Journey from On Scene Digital Printing on Vimeo.

What Next?

Published: October 14, 2010  ~   0
By Laura Edwards

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. Twenty-six 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?

The Girl Who Escaped in the Middle of the Night

Published: October 6, 2010  ~   0
By Laura Edwards

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 4 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 shin guards 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 about the meaning of the letters ‘RIGA,’ which adorned her car license plate. 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 every day? 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.

Angels Swoop Down

Published: October 2, 2010  ~   0
By Laura Edwards

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.

Exploring Fairyland on Wheels

Published: September 30, 2010  ~   0
By Laura Edwards

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 flood lamps 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 teenage 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 developed a keen awareness 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 others with Batten disease 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.

When the Clouds Disappear

Published: September 22, 2010  ~   0
By Laura Edwards

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 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 inside of her. 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 disappear.