Exercise 6

Published: June 10, 2012 ~ 0

By Laura Edwards

I found a bunch of old creative writing assignments in a notebook while cleaning last week.

During my sophomore year of college, I started my intermediate fiction writing class with a prompt and 30 minutes to write. I don’t remember the prompt for “Exercise 6,” the first half of which is included below, but I’m not sure that much matters.

Mom and Taylor under the counter

When I was sixteen years old, my mother had a little girl. She and Dad named her Anna Taylor after my great-grandmothers and decided to call her Taylor. Mom and Dad hadn’t planned the pregnancy; it was a “surprise.”

It took a long time getting used to seeing Mom in maternity clothes. Mom has much better taste in clothes than I do, and she sure has the looks to go with it. She was a beauty queen in college, but in the classic pretty sort of way, not in the ditzy “I’m easy” kind of way. She was also like the most well-respected person in all of Charlotte because she headed up every volunteer organization she ever joined. She gave all the inner-city kids hope and kept the symphony from going broke. She even got the meet the President of the United States once. Too many people were counting on her; she was way too busy to have a baby.

Mom told me that she was pregnant one day when I came home from school. I was a fifteen-year-old sophomore, and she was forty. She was sitting cross-legged on the carpeted floor of her walk-in closet rummaging through some old photographs when she must have heard me come in.

“Hi, sweetheart,” she called. “Do you think you could come here for a second?”

I dropped my backpack in the front hall and trotted upstairs.

She asked me how my day had been, as usual. I told her it had been long, as usual. Then she just came out and said it. No buildup or anything.

“I’m pregnant, Laura.”

At first, I thought she was joking. I kept waiting for the punch line, but she just sat there, her eyes searching mine. And then: “I’m due in August.” She was in gray leggings and an old sweatshirt, and a headband held her short blonde hair out of her eyes. My mother was beautiful, even in her housecleaning outfit. I was only five when my little brother was born, but my memory was pretty clear: he was born in the summer and she was hot and miserable and worn out and the ’80s maternity clothes were too ugly for her classy looks.

I still don’t know whether I was hurt, or sad, or mad, or what. It was all just too weird. I ran out of the room and didn’t speak to her for the rest of the afternoon. Better to remain silent than to say the wrong thing and hurt her feelings. It was rainy and cold outside, and I put on my headphones and my Nikes and sprinted the two miles to my best friend’s house to cry to HER in HER closet. It was so cold, the tears froze on my face as I ran. It wasn’t fair.

Often, we don’t know what we have until we’re in danger of losing it.

I’ll Run. I’ll Believe.

Published: June 1, 2012 ~ 0

By Laura Edwards

Today is June 1, 2012.

It’s been 2,139 days since I learned about a devastating disease for the first time – in the very worst way.

It’s a day that marks the end of school, maybe forever, for my little sister.

It’s the first day of International Batten Disease Awareness Weekend.

It’s the first of three more days to believe.

In a few minutes, Jeff McGonnell, an ultra marathon runner from Davidson, NC, will begin his second annual “Loopy for a Cause” run around the Davidson town Green. He’ll run through the night and tomorrow morning, and when I arrive after lunch to join him for the afternoon stint, he’ll still be running. In all, Jeff will run for 24 hours. Last year, he ran almost 90 miles in support of the fight against Batten disease and children like my sister, Taylor (Jeff runs for Brandon and Jeremy Hawkins, who are friends of his son and have juvenile Batten disease).

In 24 hours, Jeff will say hello to a golf chair and a Gatorade, and the loopiness will end. In 48 hours, Batten Disease Awareness Weekend will come to a close. But our fight will be far from over.

Another 2,139 days from now, I’ll still be fighting like hell.

One day, I hope to use this space to tell you we’ve beat the damn thing – or at least knocked it down.

Until then, I’ll run. I’ll believe.

Note: I’m scheduled to run with Jeff from 3-4 p.m. on Saturday, June 2, but you can come out and support “Loopy for a Cause” anytime between 6 p.m. tonight and 8 p.m. tomorrow (the event will continue for two hours after the conclusion of the run). Click here to learn more.

Her Light

Published: May 7, 2012 ~ 0

By Laura Edwards

The past couple of months have not been great; Taylor’s had a tough spring. But every so often, a light flicks on somewhere deep inside my little sister.

Our good friends, Callie and Will, married by the sea at 5:30 Saturday afternoon. Not long after they said their vows, my sister, who needed help navigating the soft sand on the beach and sat in one of the few chairs reserved for elderly grandparents and those otherwise unable to stand for the short ceremony, found her way to the middle of the dance floor. Out there, Taylor’s light burned brightly.

Perhaps her light only appeared bright because in its absence, a world dictated by Batten disease is so dark. But sometimes, I don’t stop to think about how much of the light is illusion and how much of it is reality. I just stop to drink it all in.

One Amazing Kid

Published: April 26, 2012 ~ 0

By Laura Edwards

I know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at www.jake4taylorstale.com. By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at www.jake4taylorstale.com to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!

Trading Punches

Published: April 14, 2012 ~ 2

By Laura Edwards

Tonight, Donya – the mother of a 4-year-old little girl – posted the following message on our Facebook page:

I am the mother of Ali, whom is 4 years old. she was diagnosed with Infantile Battens on July 15, 2011. I am writing to you to express my sincere gratitude for all you efforts in raising funds for research with Battens disease. I often feel great despair as i am a single mom trying to raise funds & awareness as to the impact i am making. I praise the Lord as i read all the great discoveries that you have funded for this disease. This gives me great HOPE & i am so thankful for Taylors Tale! God bless you for bringing us one step closer to the CURE waiting to be found!

I don’t believe any two experiences are identical, but nearly six years after Taylor’s diagnosis, I still remember the emotions I battled on a daily basis as I struggled to comprehend our tragedy – and how quickly and dramatically our world shrank as we searched for other families that understood – or at least had the ability to offer some semblance of a map for the dark, cruel world into which we’d fallen overnight.

Six years isn’t a very long time in most cases, but it’s a long time to fight Batten disease, because fighting Batten disease is like getting up every morning, heading straight into a fistfight, losing badly, standing up slowly, staggering into the corner, slumping down on the stool for a quick rest and then stumbling back into the middle of the ring to do it all over again. It’s crazy. But we do it – I do it – out of hope that every once in awhile, I’ll get in a good lick or two, and maybe – just maybe – when I’m all bruised and bloodied, I’ll manage to land a surprise haymaker and take down the disease that dared to take my sister away from me.

Donya, thank you for sharing the impact Taylor’s Tale has had on your own very personal fight with Batten disease. Just five short years before your daughter’s diagnosis, my family received the same shocking diagnosis of infantile Batten disease. The doctor said that nothing could be done and sent us home to make happy memories with my little sister while we still could. But that wasn’t good enough for us.

I’ve taken a lot of shots over the past six years; the road ahead will be more difficult than any I’ve traveled before – and I still haven’t landed that haymaker. But I don’t want any child or family to have to settle for a world in which there are no answers, and as long as I’m still standing, I’ll keep fighting on behalf of children like Ali and Taylor!

Magic

Published: March 11, 2012 ~ 0

By Laura Edwards

I was only 9 years old when Earvin “Magic” Johnson, the Lakers’ mercurial star, got a phone call. Magic, in Salt Lake City for a game with the Utah Jazz, was instructed to fly home immediately. Shortly after he returned to Los Angeles, he received the news that would change his life forever. Magic, just 30 years old, recently married and at the height of his playing career, had HIV – a disease with no known cure.

In The Announcement, an ESPN documentary that aired tonight, Magic remembered that day. How he wondered if he’d heard the words correctly. How he considered his basketball career. How he told his wife.

I was 24 years old, recently married and on top of the world, when I received a phone call that led me to drive home immediately. That day, my family received news that would change our lives forever. My sister, Taylor, just 7 years old, had infantile Batten disease – a disease with no known cure; a disease that is universally fatal.

No matter who you are, life can change in an instant.

More than 20 years after his diagnosis, Magic still has HIV. But he does not have AIDS. He has raised millions of dollars for HIV/AIDS research. He still has a family. His playing days are over, but he spends a lot of time in basketball arenas as a fan. And he looks healthy.

Magic’s status, of course, grants him access to the world’s best medicine and doctors. Nevertheless, he is living proof that HIV can be treated, even if it can’t be cured.

We may never have a cure for Batten disease, but there is a treatment out there. Something – a pill, an injection, a surgery – that could give children like Taylor prolonged, mostly normal lives. An enhanced version of the current cocktail of therapy sessions and symptom-controlling medications.

Magic Johnson has been fighting for 20 years and doesn’t seem to be slowing down anytime soon. I would give anything to have my little sister around for another 20 years.

But I know I can’t count on that.

So, I just have to keep fighting in the meantime – for her, but also for all of the future Taylors. Because we won’t be the last family to get a phone call.

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.