Run Toward the Light

Published: May 5, 2011 ~ 0

By Laura Edwards

I have a confession to make: saving my sister will not be easy. This is not a new revelation on my part. In fact, no one in our family ever claimed that our mission to save children like Taylor would be a piece of cake. Some days (many, in fact), we search for the answers in a pitch-black world, with seemingly no hope to light our way. But we must never stop searching. We must continue this journey – if not by sight, then by faith.

Sometimes, I let several weeks pass between blog posts. If I’m not writing, I’m searching. Searching for what? God only knows. Hope? Salvation? Happiness? Eventually, I find my words. Often, they drift toward running.

I cannot run at the moment. I tore my Achilles playing soccer three weeks ago – the culmination of a less severe injury that originally occurred two days before I ran a 10-mile road race in Taylor’s honor. So I run in my mind – on cool, damp sand by the sea as the sun sinks behind a low cloud, or a field of wildflowers in a high mountain meadow – but never the unforgiving pavement.

Charlotte Benson, the mother of a child with Batten disease, is not a runner. But Charlotte understands the difference between a sprint and a test of endurance. She understands that our shared battle is a test of the latter. She knows that often in our long race to defeat this monster, we must run in the dark.

I am injured, and Charlotte is not a runner. We have never met. And yet, we are running together – through the deepest, blackest darkness that is Batten disease, buoyed by our faith and the incredible gift of each other and the sick children we love.

Thank you, Charlotte, for your beautiful words. On their wings, I’ll run toward the light for another day.

Run to the Sun, by Charlotte Benson

A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the Foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.

As parents of a child with a terminal illness, there are so many unanswered questions. This not only is a race against time to find a treatment or a cure for our own daughter, but it’s a journey through the dark, facing the fear of running alone, and not knowing what obstacles and challenges lie ahead. The verse that continually comes to mind and is such a great source of comfort is 2 Corinthians 5:7, “For we walk by faith, not by sight.”

Our foundation was built by our family, our friends, and our community, all of whom have shared their talents, their gifts and their resolve to achieve the same goal. We have set out to accomplish something that has never been done before……..to eradicate Batten Disease and 600 other rare diseases through our carrier screening test. It’s a journey where friends and community follow us closely and offer support and encouragement. It’s a journey where everyone brings their talent and strength and sews them together to form an unbreakable bond: a resolve to commit, to endure, and to finish what we’ve set out to do.

This race is not a sprint. It is an endurance event that requires the commitment and support of a team. There is an African proverb that says, “If you want to go fast, go alone. If you want to go far, go with others.” God has provided for us with the incredible gift of our community, our “team,” which perseveres. These runners do not face the challenge of this course alone; our foundation does not face the challenge of Batten Disease alone. We are a team.

And best of all, we have charted a course. We are not simply running in the dark, aimlessly wandering from hopelessness, to fear, and despair; we are running to the sun, to the light, to the hope, to the dawn of a new day where Batten Disease no longer exists: our own Enchanted Rock. For light emerges from the darkness and morning is born from the womb of night.

Visit Charlotte’s Blog

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!

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.