No Dead Ends

Published: February 26, 2012 ~ 0

By Laura Edwards

Yesterday morning, I awoke to the sound of my alarm at 4:45, swung my legs to the side of the bed and braced for a shot of late February as my bare feet hit the hardwood floor in the silent, dark room. Ordinarily, I can’t bear the thought of rising before dawn. But I stood and walked to the kitchen without hitting the snooze button even once. I had a race to run for Taylor.

My husband, God love him, doesn’t understand this crazy race stuff but still dragged himself out of bed early enough to head to the race site with me and play on his iPhone in the relative warmth of his car for 70-some minutes while he waited for texted-in-stride instructions at mile marker nine to get to the finish line.

A few minutes after 7:30, I lined up with 333 other brave souls for the start of the first-ever Charlotte 10 Miler. I run the Tar Heel 10 Miler in Chapel Hill, NC on the campus of my alma mater every April, love it and couldn’t believe my luck when I learned that my hometown had gotten its own version of the wonderful but rare distance and – better yet – had chosen to put it almost in my own backyard.

At 7:55, the horn sounded.

Last year, I set a personal record (PR) for the 10-mile distance when I ran the Tar Heel 10 Miler in 1:24:00, finishing in the top 20 percent of the field.

Five days later, I injured my left Achilles tendon in a soccer game. I spent the next three months in a boot. Since then, I’ve run a grand total of one race – a 10K in the rural NC mountains last weekend. I missed last November’s Thunder Road Half Marathon for the first time in several years. Needless to say, I had no clue how I’d do in the Charlotte 10 Miler. And though the field was small, it was strong. My non-runner husband’s first words when we arrived were, “These people look serious.” So when I took off at the sound of the horn and let the cold air fill my lungs, I told myself I just wanted to run a respectable race in my little sister’s honor.

When I passed the first mile marker, the app on my phone announced my current pace – 8:35 per mile. I knew that put me close to my 2011 Tar Heel 10 Miler time (when I averaged 8:24 per mile) but didn’t think I could keep it up.

But even after I reached the halfway point, my pace held steady.

Around mile marker eight, the course cut through a neighborhood, rounded a bend and presented my fellow runners and me with the second-steepest hill I’ve ever encountered in a race (the steepest being Laurel Hill – a monster near the end of the Tar Heel race so notorious that it gets its own separate timing mats). And right then, my legs voted unanimously – without consulting me – to quit. Every muscle from my feet to my waist burned right down to my bones.

I thought about walking to the top of the hill. What harm could it do? With such a small field, I didn’t have to worry about the psychological tear-down effect of watching scads of runners pass me while I caught my second wind.

And then, just as quickly as the thought had entered my mind, it dissolved. In its place I saw a timeless image of my sister in her first 5K; falling, scraping her knees and palms; being given a chance to walk; gracefully turning it down; getting to her feet and finishing the race; running – not walking – across the finish line.

I ran up that hill, using my arms to propel my body when my legs refused. When I got to the top, I found my second wind. As I caught my breath, I sent my husband the promised text – “Get to the finish line!” – stowed my phone and picked up speed.

finish line

Taylor can’t run 5Ks anymore. But she is with me for every race I run. Never is that more apparent than when my body begins to fail me. I maintained a steady pace the entire race – except for the final mile. I ran mile 10 a full minute faster than any of the previous nine miles. I crossed the finish line at 1:26:10; I averaged an 8:37/mile pace, fell just two minutes short of my 2011 PR and beat half the field.

After the race, other runners talked about the hill that almost claimed me. Many thought it warranted a name, like the famed Laurel Hill. One runner suggested “Dead-endhaven Hill” (after a nearby street, Endhaven Lane).

My next race is seven weeks away, but my race to save children like Taylor from Batten disease never stops. The latter makes the Charlotte 10 Miler – even with a field chock-full of “serious runners” (in the words of my husband) – look like a walk in the park. But I know that I have to keep going – even on the days when the hills seem like insurmountable mountains.

Batten disease comes with a lot of pain. Our fight with this monster is far from easy. There will be many difficult days. But there are no dead ends.

Sweet Music

Published: February 22, 2012 ~ 0

By Laura Edwards

Sunday marked the end of the fourth annual piano playathon for Taylor’s Tale. Here are the numbers: 141 students of 18 teachers played at five venues for 18 hours total over three separate days. In all, the events raised $3,004.26.

Here are some memories gifted to us this year:

The addition of a Suzuki violin group – especially touching for Taylor’s mom, because Taylor took Suzuki violin lessons the year we learned she has infantile Batten disease
A 6-year-old boy played a small violin, and he and his younger sister sang the Spiderman song together; Mom and Taylor sing that song every morning when they brush their teeth (they don’t know why – they just do!)
The students ranged from very accomplished/experienced to brand new – i.e. one girl just two months removed from her first lesson, yet willing to step up and play (and do a fantastic job!) for children with Batten disease
The little sister of the former student who played sans butterflies – with so much joy, in fact, Mom thought they’d have to close the piano lid at the end of her turn
The students who remembered meeting Taylor last year (she did not attend this year) and went out of their way to ask how she is doing
The adult student who returned on the last day of the playathon, not to play, but simply to listen
The students (children) who agreed to do interviews with the media that came to cover the event – and nailed them
The student who entered a beauty pageant and chose Batten disease as her platform
The boy (probably Taylor’s age or not much older) who played the Journey song “Don’t Stop Believin'” and played it a second time just for Mom, because “believe” is her favorite word
The former (now grown) student and childhood cancer survivor who couldn’t attend the playathon but supported it from afar with a donation

Mom listening to music

Thank you to the event co-chairs, Polly Greene and Pamela Tsai, and all of the teachers for their amazing efforts on behalf of Taylor’s Tale.

Thank you also to the venues – Burrage Music Company, Hopper Piano Company, Music & Arts, Maus Piano and Organ and Ruggero Piano.

Finally, thank you to all of the students who played for using their musical gifts to give the gift of hope to children with Batten disease.

What’s Best about Today

Published: September 21, 2011 ~ 0

By Laura Edwards

At various points throughout my childhood, I had my whole life planned out. When I was 6, for example, I intended to make a living selling Xeroxed copies of my handwritten, illustrated stories. I remember the day I sold my first story; my piano teacher bought it for a dollar. Needless to say, I had arrived. That same year, I declared myself a future astronaut. I knew the names of all of the planets, the location of the asteroid belt, the difference between a gas giant and a terrestrial and the fact that sometimes, Pluto is closer to the sun than Neptune. I was NASA-bound. In middle school, I decided I liked drawing fantasy worlds better than calculating parallax, so I set my sights on becoming an artist for Disney (after my professional soccer career ended, of course).

Crazy kids like me aren’t the only dreamers. I don’t have any children yet, but my mom told me that when parents choose a name for their children, they think of the future. When they chose mine (Laura Catherine), they envisioned it on a wedding invitation. When they chose my brother’s (Stephen Howerton), they thought about how it would look on his desk.

I know that my sister’s first (Anna) and middle (Taylor) names honor our great-grandmothers. But that’s all I know. When my mom shared the origins of my name and my brother’s with me just last night, my sister’s name was distinctly absent.

I used to envision big moments in Taylor’s future. Her graduation from college; her wedding day. But because Batten disease casts its dark shadow over the world in which we now live, we are forced to take things one day at a time. We wait for the occasional breaks in the clouds, and in those moments, we dance in the brightest, most beautiful sunlight. But the clouds always come back.

Shortly after Taylor was diagnosed, a well-meaning friend suggested I try to find the silver lining in my sister’s illness. More than five years later, I still insist that there is NO silver lining associated with this monster. To me, calling any part of our situation a silver lining implies that the possibility of losing my sister will somehow be worth it someday. But that’s not to say we’ve learned nothing from it.

Regardless of whether or not Batten disease ever butted into my world, I would have done well to learn this lesson long ago:

If we think too much about tomorrow, we may lose what’s best about today.*

*Thanks to my mom, Sharon, for providing the inspiration for this and so many of my posts. I love you!

Locks of Hope

Published: September 1, 2011 ~ 2

By Laura Edwards

My mom, Taylor, and I all have the same hair stylist; in fact, I ran into the girls as I pulled into the parking lot at the salon earlier tonight for a long-overdue cut.

I will never forget the afternoon in her salon in January 2008, just before my parents and sister boarded a plane for a city thousands of miles away so that Taylor could take part in a clinical trial. Taylor had beautiful, long, blonde hair back then, and my parents wanted to save some of it from the operating room floor for a wonderful program called Locks of Love. The stylist first braided my sister’s hair, then took a large pair of scissors and snipped it off near the nape of her neck, placed it into a Ziploc bag, and handed it to our mother. The image of Mom sitting there in the salon chair, her youngest child’s braid in her lap and silent tears rolling down her cheeks, is forever burned into my memory, just as is the moment a few days later when the study coordinator came to our family in the surgical waiting room in that faraway hospital, the rest of Taylor’s hair in yet another Ziploc bag in her outstretched hand.

As I gathered my things after my haircut tonight, my stylist’s assistant asked me about Taylor’s prognosis. I was the last customer of the evening, and I can imagine that my stylist and her assistant both looked forward to getting home to their families. But instead, we all stayed in that tiny salon for another 30 minutes.

I have a couple of stock answers ready whenever someone asks me about Taylor – not Taylor’s Tale, but Taylor. This is because I assume they want really good news – like, “Taylor is doing much better! We’re out of the woods!” Or, “The surgery/medicine worked! She’s all better now!” But this is Batten disease. And the only constant about Batten disease is that no child has ever survived it. They all travel their own road, but all of the roads lead to the same end. That’s pretty sad, though, and people have enough sad stuff in their own lives without taking ours on, too. So while the much hoped-for responses (see above) would be disingenuous, I still feel the need to come up with something positive to say. So I usually answer with something like, “She’s a fighter!” That is true – Taylor is the most courageous person I know, except for maybe my mom. Or often I’ll say, “We’ve made amazing progress for kids like her!” That’s true, too, but I usually say that when I really don’t want to talk about Taylor. Because then I’m just another person with a cause – but in my imagination, at least momentarily, the cause isn’t life and death for my family. It means a lot to me, but it’s not about me, so it’s not as scary.

Tonight, for whatever reason, I decided not to whip out one of my short-order responses. When my stylist’s assistant asked the question, something in her eyes said she wasn’t looking for the happy-go-lucky answer – something to make her feel better about the world. And 30 minutes later, my stylist declared that she had already cried a little and didn’t want to cry a lot, and she couldn’t do that in front of me, so why didn’t we all just head home?

Before we left, my stylist said that early on, she could tell I just wanted to fight, fight, fight. I was a woman on a mission. And if anyone asked me if I believed Taylor could be “the one” (to survive Batten disease), I boldly said, “Yes. I believe in miracles.” But as time went on, I took on a quieter form of determination. I’ve never stopped believing, but over time, I became a little less “rah rah” in how I went about it. That may have been when I replaced “Taylor” with “kids like her” whenever I talked about research – not because I stopped believing in a happy ending to our story, at least in the deepest depths of my soul, but because I finally understood our opponent. In the meantime, I grew a hard outer shell to protect me from Batten disease. The shell keeps me from crying – in fact, I’m almost unable to cry. The shell gives me the courage to stand in front of a crowd – or sit with two friends in a dimly lit salon after closing time – and talk about the monster that’s attacking my little sister without totally losing it.

Yes, I still believe in miracles. But my definition of true miracles has changed. I used to believe that I could have a direct impact on whether or not a miracle actually took place. As if I could wave my magic wand, and suddenly I could buy a cure for Batten disease at the local CVS Pharmacy, and Taylor would be able to see again, and I’d help her do her homework and go to her dance competitions and swim meets.

I know now that if such a miracle is possible, it will happen independently of anything I’ve done or could do. Because miracles defy logic. They require divine intervention.

I don’t know if a true miracle will save Taylor’s life. Only God knows that. But I know that another, more worldly kind of miracle is being constructed at this very moment – a miracle I can help create. In labs across the world, talented researchers are unlocking vast secrets of the human brain and its complexities and wonders and ways to fix it when it’s under attack. And I know that the worldly miracle is coming. I know that Taylor’s Tale can be an important part of it.

In the meantime, the best thing I know to do is what I said to my stylist and her assistant before we walked out together tonight: I can wake up each morning and commit to find one good, happy thing in each day. It may be a phone call that delivers news so good it takes my breath away. It may be a gorgeous sunset or a long run. It may be a great cup of coffee. And each night, before I drift off to sleep, I can silently repeat my prayers to God to give Taylor the life I believe she deserves.

Long after Taylor’s surgery, my mom revealed that she could never bear to part with all of Taylor’s hair. And seeing my sister’s thick golden locks, still as brilliant as the last day they framed her innocent, 9-year-old face, took me back to that morning so long ago in a hospital waiting room far from home. That morning, our hearts were filled with fear, but also hope.

We’re going to hold onto HOPE for a little bit longer.

Grace

Published: August 15, 2011 ~ 2

By Laura Edwards

On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother’s familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

“The way people have responded to this situation on the coast has restored my faith in humanity,” she wrote near the end of the story. “I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people.”

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor’s diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that – not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at sixteen, and her three children – and the grandchildren that followed later – were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake ‘N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children’s children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn’t sure I’d be able to make it till Christmas. I often wore sunglasses to class, even on the cloudiest of days, to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the forty or so miles to my dorm to pick me up and take me back to their house, where I’d complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she’d sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she’d adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when UNC posted final grades, I made the dean’s list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air felt so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn’t want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on Oct. 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until Oct. 31 – her 68th birthday. During that month, her world, and ours, came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn’t necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there, eventually diagnosed as Lewy body dementia, that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn’s occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor’s Batten disease diagnosis. As I said, my grandmother’s children and grandchildren are everything to her – and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor’s illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her – like the letter she sent me in the fall of 1999 – more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don’t quit.

When I think of you, I think of the term “Grace under pressure.”

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is “class.” Not money, not prestige, not social position.

Just simply, who you are.

Love,

Grandmama

The Meanest Mother in the World

Published: April 23, 2011 ~ 0

By Laura Edwards

Growing up, I thought I had the meanest mother in the world.

My friends’ mothers did most of the work on their science fair projects, but I had to do almost all of the work on mine. One year, I tested different brands of store-bought popcorn for their popping prowess. On a gorgeous Saturday afternoon, my mother made me sit at the kitchen table counting hundreds of popped and unpopped kernels while my friends played outside.

In elementary and middle school, I hated wearing dresses and got nervous around boys, but during my sixth grade year, my mother forced me to participate in Teen Cotillion. On Wednesday nights, instead of building forts in the woods or going to Charlotte Hornets games with my dad, I had to put on a skirt and go to a middle school gym to learn how to do the waltz and the shag and the electric slide and hold hands with boys.

For more than a decade, my mother dragged me to piano lessons once a week, and the other six days, she made me practice for at least 45 minutes, setting the timer on the oven so I couldn’t cheat. While other kids got to play fun music from movie soundtracks and chart-topping albums, I had to play the classics. And while lots of kids got away with just playing in the annual recital, I had to play in all of the competitions, too. I got a ‘superior,’ the best score, every single competition in every single year – all but one. That time, I got an ‘excellent,’ the second best score. On the way home, my mother told me I didn’t play to my potential.

Some of my friends bought pizza in the school cafeteria five days a week, but my mother sent me to school with thermoses of chicken noodle soup and apple slices and peanut butter sandwiches with the crust still attached.

A lot of my friends’ rooms looked like war zones, but my mother made me clean my room and took away privileges if I didn’t. She used to follow me around with the vacuum cleaner and got mad when I wore my muddy soccer cleats into the kitchen.

Most of my high school friends had midnight (or later) curfews, but my mother insisted that I arrive home by 10:30. During my sophomore year, on the night before I turned 16, I went to the senior follies production at school with my junior and senior friends. One of them convinced me to stick around for a birthday celebration with store-bought cupcakes and mismatched candles at midnight. I walked in the door of my house at 12:25, almost two hours after curfew. My mother grounded me.

None of my friends’ parents pressured them about their grades like my mother pressured me. The first semester of my freshman year of high school, I got my first-ever ‘C,’ in English. My teacher told my parents that I got the ‘C’ because I didn’t apply myself, so my mother took away my Cliffs Notes, threatened to hire a tutor, and insisted on reading my take-home papers before I turned them in. I never got another ‘C’ again; that spring, I took the state writing test and got the highest score in the school. Seven years later, I graduated from college with an English degree and an ‘A’ average.

Many of my soccer teammates’ moms came to every single game – even the weekend-long tournaments out of the state – and waited in the parking lot after practice so they could yell at the coaches about their daughter’s playing time. My mother never came to practice, never yelled at my coaches, and never even came to many games. She was too busy being president of the Junior League or serving on some other board to give kids with handicaps or from less fortunate families a chance to believe. And while my teammates’ mothers helped them research college soccer programs and athletic scholarship opportunities, my mother told me to go to the best school, even if I had to walk on the team or, worse yet, never got a chance to play on the varsity.

When I became extremely homesick at the beginning of my freshman year of college, my mother wouldn’t let me move home to go to the school my boyfriend attended. She told me that if I didn’t like my school, I could go somewhere else, but I couldn’t come home.

When I told my mother my boyfriend and I wanted to spend the summer after my graduation driving across the country, she told me no. Instead, she made me get a PR internship at a local ad agency while I figured out what I wanted to do with my life, since my original plan to be a starving artist didn’t solve the issue of getting me off my parents’ payroll. That internship led to the career I have today. And when I wanted to get married after I earned my undergraduate degree but before my husband finished his, she convinced me to wait until he was halfway through grad school.

Finally, after years of waiting, my wedding day was the happiest of my life. That day, I stood in front of 75 of our closest family and friends and toasted my father and my mother for giving me everything a daughter ever could ask for.

Since that day, I’ve seen my mother torn apart by the disease that shattered our family the same day we learned of its existence for the first time, just one month after my wedding. I’ve watched her fight for my sister, Taylor, like her own life depended on it – and maybe it does. I’ve watched her demand the best of the people who have a chance to give kids with Batten disease a future, just like she used to demand the best out of me. I’ve seen her at her most desperate, and in those moments, I’ve tried, often in vain, to be the rock for her that she’s always been for me, even though I used to be too naive to see it.

I love my sister, but I’m not only fighting for her. I’m fighting for my mother – the greatest mother in the world. Because that’s what she always did for me.

Mother’s Day is almost two weeks away, but my mother deserves to be honored 365 days a year. Happy Mother’s Day, Mom. I love you!

Still Standing

Published: April 7, 2011 ~ 0

By Laura Edwards

It’s been one of those weeks for me. They come along every once in awhile. My tears are threatening an uprising.

I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. One early evening, I started crying without warning as I stood at my kitchen counter making macaroni and cheese, listening to music and watching the sun tuck into the clouds behind the trees in my backyard. I sank down to the floor and stayed there with my back against the dishwasher and my bare feet on the cold tile floor as hot tears soaked my shirt and my shoulders shook. I didn’t know what made me cry at that moment, and I didn’t know how to stop. So I just cried until I didn’t have any tears left.

After a 5K fundraiser one cool, rainy Saturday morning the following spring, I held the hand of a boy with juvenile Batten disease for 30 minutes. I knew Seth wouldn’t be able to see my tears, but I still held them in until after I’d walked away. And as soon as I did, that was it for me. I took my mom by the arm, and we found my car and drove home. I climbed the stairs to my bonus room, closed the blinds and slept on the couch for five solid hours. And I NEVER sleep during the day.

Somewhere along the way, my life before Batten disease dropped out of sight in the rear-view mirror. I cried less and less. Mostly, I stayed angry. I’m still angry, which is good in a way, because it makes me want to fight like hell. Sadness doesn’t get me anywhere. Lately, I’m feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide.

Mostly, it’s working. I cry very little, but when I do – it’s epic.

I don’t know where I am or how I got here. If you’ve lived my story, you understand the source of my doubts.

Originally this line said that I don’t know how I’m still standing, but I deleted it. Because I DO know.

I’m standing because of my family. Tragedy generally does one of two things to relationships: tear them apart or super-glue them together. Tragedy sucks, but it’s still been my super-glue. I love being in the same room as the people I love, and I’d walk through fire for them.

I’m standing because of my sister – my hero for the ages. She has the most evil, unfathomable disease on the face of the earth; it belongs in hell. She can’t see, and she can’t always say what she’s thinking. But today, she gave an awesome presentation on Moby Dick. Tonight, she helped me push our cart through the grocery store – while singing a Bee Gees song. And for the first time all day, I really laughed.

Most of all, I’m standing because of faith. This past Christmas, a dear friend gave me a necklace with these words:

“FAITH is the strength by which a shattered world shall emerge into the light.” –Helen Keller

With the passing of each day, Taylor’s survival falls somewhere farther away from logic. But as long as I’m surrounded by angels, I’ll believe.

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?

Nostalgia

Published: September 16, 2010 ~ 0

By Laura Edwards

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 locked 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.