Thankful

Published: November 21, 2012 ~ 0

By Laura Edwards

Fighting Batten disease has changed my perspective on life. It’s affected my system for assigning value to things, from those that can be bought and sold to those that cannot. Tonight, on the eve of another Thanksgiving Day, here are just some of the things for which I’m thankful.

Ice cream. You can get it in a carton, cup or cone. You can get it in almost any imaginable flavor. It always tastes good. It almost always makes a sad day less sad.

Two (mostly) healthy legs and feet, two functioning eyes and a great pair of running shoes. Together, they help me run for my little sister four to five days a week. Running is the best antidepressant for me. Without it, I may have lost my sanity a long time ago.

Beautiful places. When I stood on the edge of this magnificent valley in the North Cascades range of Washington state last year, I wondered aloud how anyone could ever possibly question that there is a God.

My West Highland white terrier, Daisy. I brought her home because I wanted something snuggly to love on at night. She’s given me that and so much more.

True friends. If I could claim nothing other than a few really good friends, I’d still be rich.

My Grandma Kathryn – one of the purest, kindest, most selfless people ever to walk the face of the earth. She taught me to love long walks on the beach and hush puppies with honey butter and the written word, but most importantly, she taught me to believe in myself. Tomorrow will likely be the last Thanksgiving we spend together.

My brother. Ten years ago, I would have sworn up and down that we’d never get along. We still don’t agree on everything, but who does? Stephen – I’m proud of you!

My parents. They gave me opportunities, but they also challenged me to want to be the best I could be. They taught me to reach for the space between unattainable perfection and self-respect. I owe at least some small slice of everything I have – everything I am – to them.

My husband, John – my best friend since our junior year of high school. My rock.

Moments of joy that burst out of the darkness of despair. Moments we want to hold onto forever.

A girl who taught the rest of us a lot about love. About courage. About never giving up – regardless of the odds.

The word ‘believe.’

This day. I don’t know what tomorrow holds, but I have today. And it is a gift.

Unfinished

Published: October 20, 2012 ~ 2

By Laura Edwards

During the spring of my junior year of college, I penned the first chapter of a novel for young adults for a class assignment. I stayed up all night to write it just hours before I had to turn it in – and I’d been given nearly the whole semester to work on it – so at first, I hardly expected it to go anywhere. But after sunrise, when I read what I’d written, I discovered I had something good on my hands. So I took the book on as an independent study project during my senior year and churned out close to 200 pages – a chapter a week.

When I graduated, I’d finished about two-thirds of my novel and had the last third written in my head. But when I got back to Charlotte, I started working full-time in public relations and marketing, coaching a soccer team that traveled on the weekends, covering sports for the local paper and planning my wedding, and the book sat on my hard drive…just sleeping, I told myself. I vowed to find a way to finish it as soon as I got married.

But then of course, John and I hadn’t even finished writing our thank you notes when my family got Taylor’s Batten disease diagnosis, exactly one month after the wedding.

In the book, the main character’s mother is diagnosed with terminal brain cancer.

When I learned about my sister’s illness, I thought that maybe we had enough non-fiction brain disease to go around. So when friends asked me about the book, I told them it’d been a nice ride while it lasted, but the ride was over. And I traded in those weekly chapters for (almost) weekly blog posts about our fight against Batten disease for the next six years.

A few months ago, I was up late (like tonight), and before I realized what I was doing, I pulled up my manuscript and randomly scrolled to page 136. Amazed, I saw that I’d gone directly to the moment in the story when, for the first time, the main character fully comprehends the strength of the enemy her family is up against. What transpires is a raw, intense night that changes the lives of the central character and her family forever.

Sometimes I wonder why my book took the twists and turns it did. I wrote most of it, including that chapter, at 21. My grandfather died of heart disease during my ninth grade year, but otherwise, I didn’t have experience with tragedy. I’d never heard of Batten disease, though the monster hid unseen in my little sister’s genes even then. I didn’t really know that much about loss.

When I read that chapter, I suddenly knew: I wanted, NEEDED, to finish the book, regardless of the non-fiction brain disease that now wreaks havoc on my real-life family every day.

When I wrote that chapter nine years ago, I had to imagine how my characters would feel.

I won’t have to use my imagination now.

Priceless

Published: October 5, 2012 ~ 2

By Laura Edwards

My cousin, Morgan, is a fifth grader. Each night when my Uncle David gets home from work, he gives Morgan and her little sister, Madi, all of his loose change for their piggy banks. One day, Morgan told David and my Aunt Holly that she didn’t want to keep the money anymore. She made a box with a slot in the top for coins and dollar bills; she wrote ‘Taylor’s Tale’ on the outside of the box, and from that day forward, Morgan collected her daddy’s loose change for the fight against Batten disease.

David sits on the Taylor’s Tale board of directors. We had a board meeting last night, and David arrived with a storage-size Ziploc bag bearing about $70 in heavy coin rolls, wrinkled, cotton-soft bills and crisp, new bills.

Some people might read this and think, “Seventy dollars won’t take you very far. It won’t even buy you a well check-up. Life-saving treatments cost a lot of money.”

I’d say they’re half right. Life-saving therapies – the kind that could change the future for kids like Taylor – DO cost a lot of money.

But there’s something priceless about a fifth grader who can read fat novels and swim like a fish saving up all that loose change to help save kids her age who can’t see, talk or walk.

And if enough people had Morgan’s heart of gold, we’d be that much closer to writing the happy ending to this story.

Another Season

Published: September 26, 2012 ~ 0

By Laura Edwards

I just returned from a short trip to Great Smoky Mountains National Park, which straddles the North Carolina – Tennessee border. Septembers in this part of the country are generally mild, and the Smokies are still carpeted with vibrant green leaves. But when we hiked to the summit of Mt. LeConte (6,593 feet) on our last full day in the park, we found random bursts of fiery reds and golds. Where the mountains reached for the sky, the leaves were just beginning to burn, and nature promised the arrival of another season.

As I paused to take in the endless views at the summit and along the trail, I felt the deep sense of appreciation I always get for the gift of sight – something my little sister, Taylor, no longer has. I remembered a fall day on which she jumped into Dad’s piles of leaves with unbridled joy. A day in another lifetime.

I also thought about how, as one season ended and another began on that mountain, so began another season of unknowns back home in Charlotte for my sister and our family. Since Taylor’s Batten disease diagnosis, every year has presented its own set of challenges. More than six years have passed since the diagnosis; now, each month is Pandora’s box. As time goes on, Batten disease grows stronger, and we can no longer take years, months, weeks or even days for granted.

A deciduous tree loses its leaves each autumn. Often, this is a beautiful process. The tree becomes an artist’s palette of orange, crimson or gold. Soon, the transformed leaves fall to the ground – sometimes in chunks, other times alone, until the branches are bare. In the spring, the tree is reborn, and the process begins again.

I have watched the leaves fall from Taylor’s stunningly beautiful tree since before I first heard of Batten disease. But unlike the trees atop that mountain I hiked or the ones here at home, my sister will not get any new leaves.

Never Forget

Published: September 11, 2012 ~ 0

By Laura Edwards

On the morning of Sept. 11, 2001, I sat in a poetry writing class at the University of North Carolina as fiery, unspeakable events unfolded in New York City, Arlington, VA and rural Pennsylvania. None of us had smart phones in those days, so when our teacher dismissed us, I walked outside and headed for my next class just as I would have done on any normal Tuesday. At the time, I didn’t notice the deserted quad, normally bustling with students at that time of morning.

When I climbed the steps of the journalism school and walked inside, I found what appeared to be the entire student body, crammed into the building lobby but yet strangely silent. They all stood frozen, their eyes transfixed on the journalism school’s large projector TV screen, where two commercial jets crashed into the twin towers of the World Trade Center, again…and again…and again.

I remember when our professor’s voice broke the silence to announce that class was cancelled. But I don’t remember the rest of those kids clearing out of the building. At some point, I did float out of that lobby alone, away from those terrible images and onto the steps of the journalism school, where I found the quad deserted for the second time in one day. My body, guided by some power other than my own, eased down into a sitting position, at which point my 19-year-old lungs breathed in the crisp, clean air of a late summer day on an American college campus, and my innocent eyes drank in the image of an unmarred blue sky dotted only by the soaring, leafy green treetops that watched over bright minds and moonlit strolls and games of Frisbee.

In those moments, on that impossibly beautiful day, I realized our world would never again be the same.

On the morning of July 24, 2006, I sat at my desk at a hospital in Charlotte, NC – eight months into my new job and one month into my marriage to my high school sweetheart. It was a hot but beautiful day, and everything, so far at least, had fallen into place for me. My world overflowed with happiness and possibility.

When my phone rang a few minutes after 10 a.m. – about the same time I learned of the 9/11 attacks – I heard the phrase “neuronal ceroid lipofuscinosis” for the first time – and my world changed forever.

My parents live eight miles from the hospital. I climbed behind the wheel of my car shortly after taking that call, but I don’t remember a single moment of the drive. Somehow, a force from some deep, unknown place guided me home, where I was most needed.

I do, however, remember every single moment from the rest of that fateful day.

The tear-soaked embrace in the floor of my parents’ bedroom.

Seeing my little sister – and feeling alternately overjoyed and crushed knowing she was completely unaware of the deadly disease within her – when we picked her up for her therapy appointment.

Building matching teddy bears with Taylor at the Build-a-Bear Workshop, making a wish for her life, stuffing it deep into the bear before sewing it up tightly…and not feeling silly at all.

It’s amazing how, in a matter of seconds, our lives can transform from being buoyed by hope and joy to being warped by pain and the pure cruelty of fate. It’s amazing how quickly our concept of what’s most important can change.

Today and every day, I remember those who lost their lives on 9/11 and those whose lives have been impacted by the tragedy. I am grateful for all those who make it possible for us to feel safe. And though the news clippings may fade, the memorial crowds may shrink and the stories may become more few and far between, I will never forget.

Today and every day, I fight my own battle for my little sister, in hopes that one day, the worlds of children like her and families like mine will not be shattered in a single moment. And though my body may grow tired and – yes – I may lose her – I will NEVER FORGET.

Love

Published: September 6, 2012 ~ 1

By Laura Edwards

This week, Taylor’s good friend, Charlotte, invited her to cheer from the stands at her school volleyball game and join her and the other girls for burgers afterward.

Taylor ate school lunches and walked the halls with those girls for six years. This year – ninth grade for all of them – six years post-Batten disease diagnosis – my parents faced a cruel decision.

Those girls aren’t my little sister’s classmates anymore. But when I saw this picture, I discovered that they still love her. And I loved them for it.

Each and every day, I grieve for what could have been.

A normal high school experience for Taylor.

A long and happy life.

Every once in a while, a small miracle comes our way.

Sometimes it comes in the form of opportunity…of hope.

Sometimes it comes in the form of love.

Just love.

Playing with Passion

Published: September 3, 2012 ~ 3

By Laura Edwards

Two years ago, I inherited the grand piano my grandparents gave Mom as a gift for her 14th birthday.

Growing up, I used to crouch on the upper staircase in my grandparents’ split entry, safely hidden behind the sofa flanking the bannister in the living room, to listen to Mom play the piano that now sits in my great room long after she thought I’d fallen asleep. The hardwood stairs didn’t have a scrap of carpet on them, so often, after Mom finally played the last notes of Brahms’ “Intermezzo,” I’d crawl to bed with bruises on my knees. But the next night, banged-up knees and all, I’d sneak out of bed as soon as I heard Mom open the piano bench and shuffle through the sheet music.

I took lessons from one of Charlotte’s most renowned teachers for more than 10 years (Mom taught piano professionally, but she and Dad decided that a teacher-student relationship would not be healthy for our mother-daughter relationship). I earned “superiors” at competitions and overcame my nervousness to perform in front of roomfuls of people at my teacher’s annual recitals, but I never loved playing the way I loved listening. I hated practicing; I never truly felt the notes beneath my fingers but for the oven timer in the next room, dutifully ticking off the mandated minutes of practice time. I learned to play my pieces perfectly but never passionately.

Mom stopped teaching lessons many years ago. My grandparents sold her childhood home – the sad event that precipitated my early inheritance of a grand piano that gave my mother, and secretly me, so many hours of pleasure. Its sweet notes no longer dance within the walls of that house. Now, they dance in mine. These days, out of practice and nearly 15 years removed from all that formal training, I don’t come close to perfection. But without a competition or a recital or an oven timer looming over my head, for the first time in my life, I play with passion.

I think my sister would have played with passion had she been given the chance to play. Taylor loves music more than any other thing. Thankfully, Batten disease has not succeeded in stealing her ability to listen. Listening, to music and to life around her, is Taylor’s window to the world.

Batten disease robbed Taylor of the chance to take piano lessons and so much else. But music has done so much to enrich my life and the lives of people I love. Thanks to a dedicated group of piano teachers in Raleigh, the city in which I used to secretly listen to my mom play late at night all those years ago, it has helped advance the fight against the disease that will take my little sister away from me.

September is National Piano Month. If you play, thank a piano teacher. If music has touched your life or the life of a loved one in any way, embrace it!

The sound is in the piano…the music is in us. –Suzanne W. Guy

First Day of High School

Published: August 27, 2012 ~ 6

By Laura Edwards

Tomorrow is Taylor’s first day of high school.

Ever since we first heard the words “Batten disease” six summers ago, Taylor has attended a small, private school, a school that gave my sister its heart and won mine.

Tomorrow, she’ll be a ninth grader at a huge public high school.

I’ll never forget my first day of ninth grade.

I went to a magnet elementary school for seven years and developed bonds that I haven’t lost to this day. But most of my elementary school friends went to different middle schools, and I spent the better part of the next two years making new friends. The end of my eighth grade year forced another round of goodbyes, as the dividing line for two rival high schools went straight down the next neighborhood over. And all of my middle school friends went to the other high school.

When my parents pulled into the traffic circle at the big high school on the morning of my first day as a ninth grader, I didn’t want to get out of the car…but I eventually did (with some coaxing). And after my first class – freshman English – I didn’t want to go to second period out of fear that I’d have to walk the halls alone. When the bell rang at the end of second period, I sat glued to my seat, my limbs frozen; lunch came next, and the cafeteria – teeming with kids who all seemed to have found a crowd three hours into the new school year, terrified me most of all. I peeled myself out of my desk chair only after I saw the teacher peering at me over a stack of books and papers in her arms as she shuffled for the door and looked for a free hand to turn out the light.

I’ll never forget the roller coaster sensation that rocked my insides as I walked into the crowded cafeteria and found my way to the pizza line, just as I’ll never forget the über-popular girl who invited me to sit at her table. From that moment, I survived ninth grade. I made the soccer team, enjoyed my classes (sort of), found niches in writing and art, discovered new friends and reconnected with old ones. I went on to have an incredible four years in high school. I never ate lunch with that girl again. But I never forgot what she did for me.

Taylor’s high school experience will be very different from mine. She won’t go to class every day. She won’t try out for the soccer team. She won’t follow in my footsteps and write for the school paper or chair the art honor society. She won’t see the smiles of the good people who do things to help her experience something perfectly normal like high school, at least in some small way. She may not have four years.

When I was Taylor’s age – once I got past my initial, supremely introverted nervousness – I always had my mind on the next big thing. When I played soccer on a high school field, I dreamed of playing for the national team. When I drew pictures, I dreamed of drawing for Disney. When I wrote, I dreamed of writing the next great American novel. When I made a new friend, I wanted to make more. Sometimes now, I look back and wonder if I missed little things happening in the present because I was so focused on the future.

Taylor doesn’t have that luxury.

I used to have big dreams for my little sister.

I still do.

I just had to adjust them a bit.

I hope Taylor has a good first day of ninth grade at her new school.

I hope she smiles and laughs.

I hope her new friends – both young and old – see how beautiful she is, both inside and out.

I hope she knows how much I love her.

Sisters

Published: August 12, 2012 ~ 0

By Laura Edwards

Taylor will celebrate her 14th birthday on August 19 – one week from today.

My little sister’s life began during the first week of my junior year of high school. I was 16 years old. I didn’t bother leaving soccer practice to see her at the hospital. I already had an annoying 11-year-old little brother, and I didn’t want a little sister.

I fell in love with Taylor the moment Mom and Dad brought her home; we became fast friends.

She helped me with my homework.

She put up with my bear hugs.

We worked on our tans together.

She won the biggest fan award on my college graduation day.

She was the best senior flower girl ever.

She rocked a stuffed chipmunk head for an entire day at Disney World, because Chip and Dale are my favorite Disney characters.

She took me to my first Cheetah Girls concert.

She helped me paint the rock at her school in her favorite colors – purple and pink – for her half-birthday just over a month after she had major brain surgery.