Digging Deep

Published: April 12, 2011 ~ 1

By Laura Edwards

I managed this self-portrait before dawn
the morning of the race.

As promised, following are my results from the 2011 Tar Heel 10 Miler, run on the campus of UNC and the streets of Chapel Hill on a misty Saturday morning before the sun ever broke through the clouds.

Time: 1:25:27
Pace: 8:35/mile
Laurel Hill time: 7:35
Place: 734 out of 2,189 overall; 267 out of 1,252 females; 60 out of 200 females ages 25-29

I began the race on Stadium Drive with a nasty head cold, an injured Achilles (pulled in a soccer game two days prior), and maybe an hour of sleep (worried I’d sleep through my 5 a.m. alarm, I never quite made it to dreamland).

Around mile marker two, I felt a burning sensation in the ball of my left foot. It never went away, forcing me to change the way I run (more naturally a sprinter than a distance runner, I run entire road races on my toes). Hours later, I’d discover the source of the pain – an enormous blood blister.

Near mile marker five, the pain in my Achilles relented, blissfully replaced by a runner’s high.

A few miles later, I called my parents from the course just to check in. Their voices gave me the boost I’d need just moments later.

Soon after we said goodbye, I reached Laurel Hill – the most difficult part of the race, featuring a 200-foot vertical climb over the course of a mile. By then, my lack of sleep had caught up with me. But when I crossed the first timing mat, I pushed myself, getting as close to a sprint as my body permitted. Each time my ruined feet hit the pavement, I heard my little sister’s laugh, and I dug deeper. I crossed the second timing mat at the top of Laurel Hill seven minutes and 35 seconds after crossing the first – meaning I’d run the most challenging mile a minute faster than my average mile pace.

Soon afterward, I heard the music at the finish line as I rounded a bend. And when I reached the final straightaway, as in every race, I pulled out one more sprint for “T.”

I ran the 2011 Tar Heel 10 Miler 12 minutes faster than in 2010, so tonight, true to my word, I’ll make a $60 donation to our Miles to a Miracle campaign. But more importantly, I’ll never stop running. In fact, I got back out on the track tonight, ready to tackle the next race for Taylor. Laurel Hill has nothing on the mountain we have yet to climb. But I believe.

Please consider making a gift of your own to help Taylor’s Tale cross the finish line of the ultimate race: the race to save the lives of children like my little sister. Give Now

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.

Laurel Hill

Published: March 22, 2011 ~ 0

By Laura Edwards

Two weeks from Saturday, I’ll run my favorite race, the Tar Heel 10 Miler, on the streets of Chapel Hill, NC and the gorgeous campus of the University of North Carolina.

I’ll pass mile marker one on the L-shaped road I used to take to UNC basketball games at the “Dean Dome” and soccer practice before they turned our old field into a parking lot.

Around mile marker five, I’ll run past the Forest Theatre, where I got initiated into the co-ed honor fraternity the same night a student proposed to his girlfriend with a candlelit dinner on the stone amphitheater’s grass-carpeted floor.

Near the very end of the race, I’ll climb Laurel Hill, which earned its famous rep due to the fact that it climbs more than 200 vertical feet over about a mile. It’s the most difficult part of the race – so much so that race organizers place separate timing mats at the bottom and top for the simple fact that any runner who notches a killer split on Laurel Hill earns automatic bragging rights.

Laurel Hill isn’t easy, but my playlist, my Asics and my love for my little sister will carry me to the top. And soon after I reach that pinnacle, I’ll cross the finish line.

This will be the third race I’ve run for Taylor since Thanksgiving, but this time, I’ll have additional motivation. In 2010, I ran a slow 1:39 in the Tar Heel 10 Miler. Just two days ago in Charlotte, I ran 10 miles and beat that time by almost 20 minutes. Granted, south Charlotte doesn’t have a Laurel Hill. But I’m almost a sure bet to improve on my 2010 tortoise pace this Saturday, April 9.

To honor my little sister’s valiant fight against Batten disease, I’m pledging $5 for every minute under my 2010 time. I’m also asking friends to give anything they can in support of my run. I’ll post my race result here on Sunday, April 10.

To donate, visit www.taylorstale.com/miles and click on the ‘Donate’ button in the sidebar.

I’m incredibly grateful for the support of all of our angels. Though we have many Laurel Hills ahead of us in the fight to save Taylor, we’ll never stop fighting – or running.

miracle

Published: March 13, 2011 ~ 0

By Laura Edwards

mir*a*cle – noun. 1: an extraordinary event manifesting divine intervention in human affairs / 2: an extremely outstanding or unusual event, thing, or accomplishment

On her way out the door following our ACC tournament fundraiser late this afternoon, a woman I’d never met walked up to me, squeezed my arm, looked right into my eyes, and asked the question that forever looms in our anxious hearts: “Is she going to be okay?”

“She” is my sister, Taylor, who at that moment sat less than ten feet behind me at our family’s table and yet was quite clearly wrapped up in her own private, dark world far, far away. Without looking away from the woman’s searching eyes, I offered only the following: “We still believe in miracles.”

I dodged the woman’s question, I know – but the prospect of answering directly quite honestly scares me these days. Each time the sun rises and falls, marking the end of another day without a cure for infantile Batten disease, Taylor’s survival more clearly defies all logic.

When scientists finally unlock the key to this evil disease, I will not call it a miracle. I will call it great science. And I know it will happen. The question is when.

If my sister should beat this disease – that will be a miracle, and when it happens, I will fall to my knees, look up at the sky, and thank God, because no matter what marvels modern medicine can conjure to make her road more comfortable, only He can ultimately lead her out of the darkness.

I’m still waiting for that miracle. But I’ve witnessed other miracles along the way.

Last night, Taylor attended her school dance. When my parents met John and me in the school parking lot to deliver her to us, my mom had tears in her eyes, because in our world, every ‘normal’ experience is emotionally charged. We smile and laugh on the outside, but on the inside, we wonder, ‘Will she be able to handle it?’ and ‘Will this be her last one?’

As we walked down the short hallway to the cafeteria, where the dance had already started, I worried that the kids would ignore Taylor. I silently thanked God for my husband, knowing he would take Taylor’s hand and lead her onto the dance floor if no one else would.

But my fears were unnecessary.

True story: three boys danced with Taylor last night. As I watched from my wallflower spot, an uncanny warmth spread from my head to my toes. And in those moments, I knew I was witnessing a miracle in its purest form – an extraordinary event manifesting divine intervention in human affairs. Because those were angels twirling my sister around the room.

The Last Birthday Girl

Published: February 28, 2011 ~ 0

By Laura Edwards

The Last Birthday Girl in 1982

On Tuesday, I’ll celebrate my last-ever birthday.

Okay, so not really. But I’ll be 29, and since I don’t care to turn 30, I’ve decided that at the very least, March 1, 2011 will be the last time I officially recognize my new age.

Despite my disdain for the number 30, chances are good that I’ll celebrate many future birthdays. Over the years, I’ve dodged plenty of bullets. I got off to a rocky start, suffering a severe brain injury at birth. Soon after, I became the first of two of my parents’ three children to have brain surgery. Then, when I was five, I took a nasty fall from the top of a high dive and landed on my back on the concrete pool deck. Eleven years later, I got in the first of three major car accidents. I’m particularly lucky to have walked away from the second. And in 2009, I had a lymph node removed during a cancer scare.

All of those things are safely behind me now. I still have scars on my head and my stomach from the intracranial shunt I sported as an infant, but a lime sherbet Popsicle and a spell in the shade took care of the diving board incident. The cars involved in the accidents really took it on the chin, but every single time, I walked away shaken, and nothing more. Oh, and the offending lymph node? It was benign.

These days, my biggest health issue is the fact that I’m an orthopedic train wreck – something I brought on myself and conveniently ignore whenever I lace up my shoes and head out for a run on Charlotte’s finest asphalt. When I look in the mirror and see signs of my ice cream obsession and a head of hair that’s not quite as blonde as it used to be, I suddenly remember that I’m not seventeen anymore. But in that same mirror, I also see a girl who got a single good copy of the CLN1 gene. A girl who also got a bad copy, yes – but that copy’s nowhere to be found in the mirror. You see, in a fight between a good copy and a bad copy of CLN1, the good copy always wins. It’s only when you’re unlucky enough to get two bad copies that you have infantile Batten disease. And if that happens, chances are you won’t even be able to see your reflection in the mirror – or anything else. Those bad copies will have stolen your sight.

I’ve had my fun with this whole ‘last-ever birthday’ thing. Now, what I really want to do is thank God in advance for each and every last future birthday He decides to give me. Life is a gift, and I don’t take a single day for granted. I can’t. But I sure do have a hell of a chance at seeing tomorrow. My sister can’t say that. Because she got two bad copies. So if Taylor lives to celebrate her 30th birthday, it’ll be more of a miracle than anything in my life ever was. And if that day comes, I’ll give her one hell of a 30th birthday party.

Make the Future

Published: February 20, 2011 ~ 0

By Laura Edwards

“People are always blaming their circumstances for what they are. I don’t believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.” –George Bernard Shaw

‘Incurable’ is unacceptable.

Root Beer and Rameses

Published: February 16, 2011 ~ 0

By Laura Edwards

Yesterday marked the 12th Valentine’s Day my husband and I have shared. We’re renovating our kitchen and hate going out on Valentine’s, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card. I gave him a card and…root beer. Four glass bottles of Stewart’s root beer, actually.

Twelve years ago, we were high school juniors and best friends. Often, on the days that I didn’t have soccer practice right after school, we’d watch movies, play basketball on the elementary school’s blacktop court or walk up to the grocery store, buy a four-pack of Stewart’s root beer and drain all four on the sidewalk outside. We had a blast; it was the best fun $3.99 could buy. I was dating someone else at the time. Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born. And before she could crawl, she taught me that lesson all over again. One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn’t let go, even after she drifted to sleep. When she first started talking, she couldn’t say my name, instead calling me ‘Rar-Rar.’ Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs. Halfway through my senior year, T celebrated her second Christmas. I’d gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed version of Rameses, the UNC mascot, which played the Carolina fight song when you squeezed its hoof/paw/whatever you call a fuzzy ram’s foot. Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly, ‘Rar-Rar’ replaced ‘ Rah rah Carolina’ in the song’s lyrics.

I left for college eight months later. A few weeks into my freshman year, I got an email from my mom – or so I thought. When I opened it, I discovered that it was actually from T.

‘Dear Rar Rar,’ it said. ‘I wanted to send you a message too! Here goes! (insert two lines’ worth of randomly assorted letters of the alphabet here).’ I printed the email and stuck it to the corkboard on the wall in my dorm room. I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time. But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can’t hold T quite the way I used to, because she weighs almost as much as I do. Fuzzy Rameses lives on the bed in my guest room – the room I decorated with my sister in mind but that she has never slept in. Rameses’ batteries are long dead, but he’s got a home under my roof for as long as he wants. And T hasn’t called me Rar Rar regularly in a long time. When she talks – which isn’t as often lately – she calls me Laura. But one thing hasn’t changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party. After dinner, we watched one of her girly girl movies. Her favorite chair isn’t big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs. Ten minutes in, she found my pinky.

Opposites Attract

Published: February 6, 2011 ~ 0

By Laura Edwards

It’s Saturday night, and my parents are out celebrating a friend’s birthday, so Taylor and I are watching Ella Enchanted at their house. Right about the time the pizza I’d baked disappeared and I started the movie, my husband and brother fled to my house three miles down the road, allegedly to put up drywall in our kitchen (we’re renovating) but more likely to avoid having to watch Ella Enchanted.

When I was 12, I wouldn’t have watched a movie like Ella Enchanted even if you tied me down in the chair (I would have figured out a way to escape or, if my attempts failed, squeezed my eyes shut and stuck my fingers in my ears). When I was 12, I wore cutoff denim shorts and Charlotte Hornets t-shirts. My most prized possessions were my Legend of Zelda Nintendo game (my brother wasn’t allowed to touch it) and the black and orange Nike cleats that matched my middle school soccer jersey. Seventeen years later, I’m mostly that same girl. I like pedicures and expensive haircuts, but I’m still happiest in old jeans or Adidas pants and long-sleeved t-shirts or stretched-out Carolina sweatshirts. I still play video games and, when I’m not injured – which is rare lately – soccer. But my sister is a girly girl to the core. She likes sparkly jewelry and cute skirts and movies about princesses.

In spite of our differences, I love hanging out with my little sister. Even when she was still a toddler, I imagined going shopping or getting our nails done together or helping her plan her wedding.

I was only a month removed from my own wedding nearly five years ago when the Batten disease diagnosis tore my dreams into a million tiny little pieces. And now, though I still cling to my belief that we can find an answer to this monster in time for Taylor, I can’t escape the disease, even when we’re happiest together. Even tonight, as T listened to her movie and smiled, she dutifully swallowed each of the nine pills I put in her delicate little hand.

I hate this disease. I hate everything it represents. I hate it for all that it has stolen from us and for all that it will steal in the days to come. I hate it for threatening to steal my little sister from me. And yet somehow, through all that hate, I still find happiness in the most unusual places, like shared princess movie nights.

Over at my house, the guys have probably wrapped up in the kitchen, put the tools away and retreated to the great room to play Xbox and drink beer. I may be a video game and soccer-playing, old sweatshirt-wearing kind of girl watching a princess movie on a Saturday night with a 12-year-old dressed in pink pajamas and fuzzy pink socks, but I still think I got the better deal.

Move Mountains

Published: January 23, 2011 ~ 0

By Laura Edwards

My mom frequently shares nuggets of wisdom such as the one below with me via email. I love getting these messages from her, particularly when I’m having a rough day. They serve as a reminder of what I’m fighting for and reassurance that I’m not fighting alone.

“I believe life is constantly testing us for our level of commitment, and life’s greatest rewards are reserved for those who demonstrate a neverending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams and those who live in regret.” — Anthony Robbins

I won’t ever give up.