Spunk

Published: June 16, 2011  ~   0
By Laura Edwards

I’m all about anniversaries. And on Tuesday, I celebrated one: the two-month anniversary of a sideline sprint that ended with me crawling off the soccer field, my left Achilles tendon partially torn like a piece of frayed rope. Sixty-one days later, my Achilles spent its “anniversary” feeling just about as worthless as it did the moment it tore.

These unfortunate circumstances are partly my fault, I know. There’s no use in denying it; I’m a bad patient. After all, my doctor did tell me to wear my walking boot at all times unless I’m fully engaged in my usual fetal position in bed for a too-short night’s sleep. But the boot’s hot. It’s a pain to take on and off. It’s not the best summer fashion statement; I keep thinking I should decorate it with miniature leis and little pink umbrellas and other fun things that make me think of cute sandals and tropical islands and activities best done bootless. And, it’s not water sports-friendly. I spent this past weekend at my aunt and uncle’s house on beautiful Smith Mountain Lake in Virginia. Getting from the house to their dock in a beautiful, quiet little cove with a full view of the mountain itself requires navigating 86 unevenly-sized wooden steps. My uncle, a surgeon, was horrified at my lack of compliance with doctor’s orders – first when I attempted to come down those steps barefooted and crutch-less, and then later, when I came down the steps a second time, still barefooted but this time on crutches, only to ditch the crutches as soon as I reached the bottom step.

One reason I’m a bad patient is that I am extremely prone to cabin fever. I cherish those fleeting moments in which I have nothing to do and can simply sit still and breathe, but when I’m forced to sit still, it drives me crazy.

The second reason I’m a bad patient is that I’m just plain stubborn. Sometimes, when instructions don’t suit me, and I’m the only one who stands to lose, I just don’t follow them.

I’m stubborn about Batten disease. Some people have asked me, and my mom, why we’re still fighting this damn monster. It’s winning the fight right now and has been all along, so why are we still throwing punches?

I’ll tell you why we’re still fighting. We haven’t been knocked out yet, that’s why. We may have bloody lips and swollen eyes and busted noses, but we’re still standing, and we’ve managed to get in a lot of good licks on Batten, too. There are still people out there who haven’t heard Taylor’s story. There are still people out there who, given the opportunity, would be inspired to fight beside us – for one battle or maybe the whole war. I learned that this spring; I spoke publicly on behalf of Taylor’s Tale on six different occasions, and every time, at least one perfect stranger came up to me afterward wiping away “I want to help” tears. And, most importantly, there’s still a lot of kids who need us to keep fighting. We won’t find the answer in time to save all of them – maybe not even my own sister. I know that. Believe me, I’ve known it for a long time.

But just as my family’s still standing, my sister’s still smiling. When Taylor was little, we called her “spunky,” which really meant she was stubborn as hell but so damn cute that “spunky” just fit better.

Keep throwing those punches, Batten. Eventually, the fight will end, and you’ll be lying on the ground, and we’ll be standing. We’ll be covered in blood, and we’ll struggle to keep our balance, but we’ll still be on our own two feet. Because we’re too spunky to take “no cure” for an answer.

In spunk we trust.

The Raindrops Danced

Published: May 17, 2011  ~   0
By Laura Edwards

Tonight, throughout most of the 30 minutes I spent chained to a recumbent bike at the gym, my eyes darted from the Kindle in my lap to the darkening sky through the windows – layers upon layers of deep blueberry blue and blackberry purple, like a frosted layer cake left out in the sun on a humid day. As I hobbled out the front door some time later, the orthopedic boot that has been my fashion statement for the past month holding my busted Achilles together like Scotch tape, the front desk attendant told me to stay dry.

As luck would have it, the first warm, fat drops of rain fell from that layer cake sky just as I walked out into the balmy night.

Normally, I would have sprinted the 50 feet to my car. I don’t like to get wet. My husband routinely teases me about my love for the outdoors and, conversely, my distaste for rain unless I’m safely out of it. Just two days ago, he watched with a smile from the door of the chapel where our friends were about to be married as I limped unevenly across the parking lot, my left foot in the boot and my right foot in a three-inch heel, a slippery Pashmina wrap slung over my shoulders and the world’s largest golf umbrella clasped in both hands.

As I pulled out of the gym parking lot, I received an unexpected visit from a decade-old memory of an afternoon at my grandparents’ house in Wake Forest. In the pictures that played on the projector screen in my mind, Grandma Kathryn chases an overalled-toddler version of Taylor around the front yard under a gray sky. Taylor manages to avoid our grandmother’s outstretched arms, only to be scooped up by John when she rounds the corner and runs right through his hiding place. He turns her upside down and tickles her, then sets her on her feet. And the game begins all over again.
A soft breeze rolls over the tops of the trees – a warning for rain. As the first drops cascade out of the sky and onto our waiting faces, I run for cover. Taylor runs to the porch and tugs at the handle of an umbrella three times her size. John takes the umbrella from her, opens it and wraps her tiny fingers around the shaft. Her cherub face breaks into a grin, and she takes off down the winding path to our grandmother’s garden, singing in the rain.
I smiled as I remembered this very real moment – a testament to my little sister’s ability to find beauty in every drop of rain. The image of Taylor skipping down that garden path reminded me of the words of Cindy Smith, a courageous mother who lost her son to the same disease that threatens to take my little sister away from me forever.
“Life is not waiting for the storm to pass. It’s learning to dance in the rain.”
As the spring rain poured from the sky, I rolled down my window. The raindrops danced on my outstretched arm as a smile danced across my face and love filled my heart.

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.

mir*a*cle

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.