Run for Taylor on February 25!

Published: January 8, 2012 ~ 0

By Laura Edwards

If you live within a reasonable distance of Charlotte (or if you don’t but like to travel!), you’re invited to join me for my hometown’s only 10-mile race on Saturday, February 25. I’ll bundle up in purple, the color of Taylor’s Tale, and run in honor of my little sister on what will be a chilly morning. The 10-mile distance is my favorite – I run the Tar Heel 10 Miler in Chapel Hill, NC each April – but it’s rare, so I was ecstatic when I heard about the Charlotte 10 Miler.

If the thought of running 10 miles sounds miserable to you, don’t worry – the event will also feature a four-mile run. The four-miler will start at 7:30, about 10 to 15 minutes prior to the headliner. Both races will begin by Urban Active in Ballantyne and follow south Charlotte’s McMullen Greenway to Four Mile Creek along gorgeous paved trails; they’ll end at the Earthfare on N. Community House Road. So if you’re not a runner, at least you know where to cheer! 🙂

The Charlotte 10 Miler officially benefits the Crohn’s & Colitis Foundation’s Team Challenge and the American Cancer Society. You can add a third cause, Taylor’s Tale and the lives of children fighting Batten disease, to the list by joining me on race day. All in all, there are plenty of reasons to run on February 25:

Support three amazing causes
Running is great exercise
Receive a free t-shirt if you register by Feb. 18 (everyone loves free t-shirts, right?)
Hang out with me 🙂

To learn more about the race (and register), click here. To learn more about running for Taylor’s Tale, contact us. I hope to see you on race day!

The Search for the Invisible Finish Line

Published: January 1, 2012 ~ 0

By Laura Edwards

My Charlotte elementary school held an annual field day competition – for me, the highlight of the year. Back then, I spent many recess periods reading novels in the shade of the old campus’ stately oaks, too introverted to insert myself in the hopscotch and foursquare games and friendship bracelet-making parties of the other girls. But when field day rolled around, I showed up in Umbros and a t-shirt, handed my thick glasses to my teacher and smoked all of my classmates in the fifty-yard dash.

Throughout my soccer career, I wasn’t always the most talented player on the field, but I was almost always the fastest. As a right midfielder, I loved to sprint down the sideline with the ball at my feet, beat the defense to the corner flag, wait for my teammates to catch up and curl a cross back to the top of the box for a shot on goal. I never led my team in goals scored, but I often led it in assists. During the spring of my senior year, my high school coach moved me to defense; prior to each game, he instructed me to mark the opposing team’s fastest player.

My best friend on my high school and club soccer teams could juggle the ball till the sun went down; I couldn’t juggle the ball for more than five seconds. But I had a killer cross, could throw the ball farther than most of the men’s team, and could outrun the whole conference. If I’d run track, I’d have specialized in the 400. And on the soccer field, I made my living as an athlete.

Nearly 20 years after I took home my first blue ribbon for the 50-yard dash and 14 years after I first stepped onto a sweet-smelling, freshly mowed soccer field, I learned that my little sister likely wouldn’t have the opportunity to chase her own dreams. After her Batten disease diagnosis, Taylor ran two 5Ks. But she last crossed a finish line in May 2009. And today, that singular moment feels as if it happened in another lifetime, to another family.

When doctors discovered the fatal flaw in Taylor’s genetic makeup, I ran to escape it. When adrenaline coursed through my veins, I felt unbeatable. Rather than turn to alcohol or drugs in an attempt to blur the sharp edges of my family’s tragic turn, I became addicted to running.

But Batten disease didn’t tire easily, and it became clear that we had a long fight on our hands. One morning, in a moment of perfect clarity, I realized that I wouldn’t find salvation at the end of a 50-yard sprint. So I did the only things I knew to do. I gathered all of my stamina. And I reinvented myself as a distance runner.

After passing the 13th mile marker during my first half marathon, I wanted to quit. My lungs burned. A fire raged in the soles of my shoes. A soccer player accustomed to sharing a field with 21 others, I discovered at that moment that running can be a very lonely sport – if you let it. But then, I rounded a corner and came upon a gray-haired lady sitting in a lawn chair on the side of the road. As I approached her, her eyes met mine. A look of understanding crossed her face; at that moment, I believe she understood me better than I understood myself. She smiled, put her hands together, and yelled, to me and only to me, “You can do it!”

finish line

I probably overtook 100 people in that final .1 mile, sprinting at full speed through a tunnel of spectators under a clear winter palette dotted with the skyscrapers of uptown Charlotte.

About five months later, I entered a spring race held among the blooming dogwoods and azaleas on the campus of my alma mater; in just under 90 minutes, I jogged through the tunnel and onto the oval circling the field at Kenan Stadium, where my legs found new life and carried me past almost everyone and across the finish line of the Tar Heel 10 Miler.

The races have gotten a lot easier since I christened my long-distance career. Despite a sore Achilles, I finished in the top one-fifth of the field in the Tar Heel 10 Miler this past April. A couple of weeks ago, I went out and ran 13.1 on a beautiful Saturday afternoon – just because I felt like it. But our battle with Batten disease – our search for the invisible finish line – has gotten more difficult with each passing year. Sitting here now, writing these words on New Year’s Day, I know that 2012 will be, without question, the toughest test yet.

I also know, from experience, that it is indeed possible to accelerate when, moments before, you thought you had nothing left to give. And I know that no matter how painful or exhausting it may be, I must be faster in 2012 than I have ever been before.

Yesterday, I ran 10 miles in my last personal physical challenge of 2011. My time for the first mile? 10:01. For the tenth mile? 7:24.

A Dose of Laughter is Good for the Soul

Published: December 28, 2011 ~ 1

By Laura Edwards

Want to live longer? Then you’d better eat a healthy diet, exercise regularly, refrain from smoking, get adequate sleep and control stress. You’d also better hope you don’t have a serious illness lurking in your genes, if it’s genetic, or just around the corner, if it’s acquired. Because when it comes to something like Batten disease, for example, you can just about throw all of that other stuff out the window. It undoubtedly helps, but in the end, it’s simply an unworthy opponent for the group of disorders officially known as neuronal ceroid lipofuscinosis – the 28 letters of hell.

My parents have tried just about everything to keep Taylor as healthy as possible – from physical and occupational therapy to a modified diet, more medications than I can keep straight and even experimental brain surgery. I have no idea how much of an effect any of it has had on her Batten disease. But there is one thing of which I’m absolutely certain:

I know in my heart that when my little sister laughs, she grows stronger. Because a dose of laughter is good for the soul.

Lauren, a member of the Taylor’s Tale board and a friend and colleague of mine who has known Taylor since 2007, watched my sister last night so my parents could go to the NC State – Louisville bowl game being played here in Charlotte along with everyone else in my family who is not a Carolina fan (so, basically everyone but me). Partway through the evening, John and I found ourselves in the area and decided to stop by my parents’ house for a quick visit. When I walked into their kitchen and saw Taylor and Lauren watching a Disney movie on the sofa in the next room, I immediately noticed the smile plastered across my little sister’s face. Today, Lauren told me that Taylor spent much of the night laughing – at her, mostly – particularly whenever she sang along with the songs in The Lion King. At one point, Lauren asked Taylor if she liked her singing, to which she replied, “No!!!” and laughed hysterically. So of course, Lauren continued to sing, and Taylor continued to laugh.

Taylor laughing

I crack up over the things that Taylor finds funny. Sometimes I think she has a twisted sense of humor, and I love it. It’s part of her spunk. For example, she regularly says I stink and calls me “fat butt” – words always accompanied by a giggle or at least a sideways grin. In fact, my mom once told me that “Laura stinks” is generally the first phrase out of Taylor’s mouth each morning:

Mom/Dad: “Good morning, Miss Taylor! Ready for some breakfast?”

Taylor (eyes still half closed): “Laura stinks!”

I average a couple of long showers a day; when I still lived at home, my dad often liked to remind me how I ran up his water bill. So I’m fairly certain that I don’t stink – at least most of the time. And I’m no stick, but I’m a workout fanatic and have never had anything resembling a “fat butt,” I’m happy to say. I’m far from perfect, but I’m pretty confident in the personal hygiene and weight departments. Coming from anyone else, the above accusations would probably get on my nerves more than anything. But coming from my little sister, they’re priceless. Because in my eyes, at least, they’re glimmers of the spunk that helped my sister go toe-to-toe with our brother, 11 years her senior, even when she was a toddler; the spunk that helps her get the best of a sister old enough to be her mother; the spunk that I believe is the basis of her ability to say “Screw you” to Batten disease, day after day – even when the adults around her can’t bring themselves to do so.

Thankful

Published: December 23, 2011 ~ 0

By Laura Edwards

I have the day off to clean my house and prepare to host Christmas Eve.

Like many men I know, my husband, John, respects the talent of singer Josh Groban but does not enjoy listening to his music. But John went to the office, and Daisy and I have the house to ourselves until late this afternoon, so Josh’s pipes kept us company this morning while I baked ginger molasses cookies for friends and neighbors and Daisy barked at the squirrels in our front yard.

The song “Thankful” filled my ears when I first plugged my iPhone into the speakers in my kitchen and began to pull ingredients for the cookies. I’ve always liked the song, but this morning, for the first time, I really listened to the lyrics. As the notes filled my kitchen, I smiled as I realized that yes – in the face of the tragedies, both great and small, that strike my family, again and again, I sometimes fail to see the JOY that surrounds me still. The song reminded me that no matter how many times I pray for miracles, I must be willing to meet God halfway – to be the change I want to see; to never stop believing; to believe in the things that, on the worst of days, seem impossible and yet still live, deep inside our hearts.

I’m thankful for the many miracles, both great and small, that I have witnessed; the love of family and friends; the beautiful sunshine streaming through my windows; the gift of hope; the power to BELIEVE for another day.

“Thankful”

Somedays we forget
To look around us
Somedays we can’t see
The joy that surrounds us
So caught up inside ourselves
We take when we should give.

So for tonight we pray for
What we know can be.
And on this day we hope for
What we still can’t see.
It’s up to us to be the change
And even though we all can still do more
There’s so much to be thankful for.

Look beyond ourselves
There’s so much sorrow
It’s way too late to say
I’ll cry tomorrow
Each of us must find our truth
It’s so long overdue

So for tonight we pray for
What we know can be
And every day we hope for
What we still can’t see
It’s up to us to be the change
And even though we all can still do more
There’s so much to be thankful for.

Even with our differences
There is a place we’re all connected
Each of us can find each other’s light

So for tonight we pray for
What we know can be
And on this day we hope for
What we still can’t see
It’s up to us to be the change
And even though this world needs so much more

There’s so much to be thankful for

The Bell Still Rings for T

Published: December 21, 2011 ~ 0

By Laura Edwards

Taylor and Santa share a moment in 2003

“At one time most of my friends could hear the bell, but as years passed it fell silent for all of them. Even Sarah found that one Christmas she could no longer hear its sweet sound. Though I’ve grown old the bell still rings for me, as it does for all those who truly believe.”

-Chris Van Allsburg, The Polar Express

This holiday season is our sixth since doctors discovered that my little sister, Taylor, has infantile Batten disease. This is my 42nd post in 2011. It’s been a packed, whirlwind kind of year – for the rare disease and Batten disease communities…for my family…for me. And now, just 10 days shy of 2012, I’m exhausted; fresh out of inspiration for this blog.

When I’m wracked with writer’s block, like tonight, I’ll often go back and reread some of my five years’ worth of combined posts on my old blog, Transmissions, and this one for inspiration. I’ve found each year of our unexpected journey to be different than its predecessor, and my own words, read through the lens of increased experience, can be striking. But at the same time, little has changed…because after all, we’re still traveling the same cursed road, looking for an exit sign, hoping we’ll find it in time for T.

The following appeared on my original blog, Transmissions, on Dec. 31, 2008.

Reflections

There are about ~~five hours~~ (ten days) remaining, on the east coast at least, in ~~2008~~ (2011).

I hate New Year’s resolutions and rarely make them. Few of the ones I’ve ever made have lived to see February, and I say, why do we need a new year as an excuse to make a commitment to something important in our lives? Most New Year’s resolutions are hokey or clichéd, like losing weight. The only diet I ever really stuck to was the one I was forced to undergo six weeks before my wedding, when I realized on the day of my portrait shoot that my mother was a beanpole when she got married, and that I’d better starve myself if I hoped to wear her wedding dress for a full six hours (the hour on the front porch of Cone Manor that day was too much).

~~2008~~ (The span from 2008-2011) had its high points, but I’m ready to let it go. I began the ~~year~~ (four-year period) on a cross-country flight to Portland, Oregon, where my sister was slated to be the sixth and final participant in an experimental study that involved the complete shaving of the full head of hair she loved, the drilling of eight boreholes in her skull and a harrowing seven-hour brain surgery during which my family and I sat huddled in the waiting room of the children’s hospital, our fingers crossed and our hearts in our throats. Taylor’s acceptance into the study was a miracle – the decisive phone call from Portland the month prior left us in happy tears – but her participation in it was the scariest thing any of us had ever experienced. Our time in Oregon, like Taylor’s spot in the trial, was a contradiction. We slept little, and I will never forget the way Taylor looked in the recovery room following her surgery. If I had ever for a moment doubted that my sister was sick, I was sure of it then. On the other hand, we couldn’t all stay in her room around the clock, so my husband and my brother and I had the opportunity to see some of one of the most beautiful areas of our country. As nerve-wracking as that week was, I made some great memories on the road to Mount Hood, in the Columbia River Gorge and on the beaches of coastal Oregon. And on the plane ride home, John and I each said what we had both been thinking: Taylor had likely just been given the best chance of survival that any child with Batten Disease has ever been given.

Though the rest of the ~~year~~ (following four years) unfolded more quickly than I could record it (them), those eight days in Portland will stand still in time forever. I still feel as though someone else lived them in my body as I watched from a distance, invisible and silent to the world around me. These last ~~12 months~~ (five years and five months) since the diagnosis, I’ve watched the disease take bits and pieces of my sister that it didn’t already have, but I’ve also watched her learn the Braille alphabet and heard her laugh, again and again. I’ve put blood, sweat and tears into fundraising and building awareness – and it has never been easy – but I’ve had the honor of helping start a non-profit named for my sister, and as much as I fret over the talks I give at our events – as shy as ever – I’ve seen the tears in people’s eyes and felt the warmth in their hands and their hugs after I’ve finished. I’ve watched my family continue to bond and rally around this cause, but I’ve been there on the worst days, too – the days the reality of Taylor’s disease hits us hard in the face. I’ve been there on the days that even when it seemed as though it couldn’t get any worse – as we’ve realized once again that Taylor has a disease no child has ever survived – another family member had a heart attack, or suffered a bad fall, or just went through a hard time. On the night one of my mom’s brothers had a heart attack, I asked her other brother what was happening, and he simply replied, “The sky is falling.” And right then, it was. But before the sky crashed down on us, we came together, and put up our hands, and with all of our might, we pushed the sky right back up again to where it belonged. And the next morning, the sun rose in that sky.

I’m not just anxious about ~~2009~~ (2012)…I’m terrified. I’m not lost on the fact that Taylor has a degenerative disease, and that until she is cured, she will only continue to decline until there is nothing left of the sister I love. In between my nightmares, though, are the good dreams – the ones where the clouds have parted, and the shades over her eyes have been lifted, and she can see once again, and the disease eating away at her has been banished forever. I know that for every good day, there may be a bad one, and vice versa. Tomorrow we may feel lost, but the next day we may only BELIEVE. The harder it rains one day, the brighter the sun shines the next. I can’t live thinking there won’t be more good news, lots of good news. I have to see the good in the bad. I have to BELIEVE that we will find the cure. And I do.

So bring it on, ~~2009~~ (2012). I know there is good to be had in your days. I know there will be tears and frustrations. I know there will be setbacks, but there will also be progress. We have nowhere to go but up. And I’m going to keep on jumping.

Nearly three years after writing that post – true to my word – I’m still jumping. My landings aren’t always that soft, and the bell doesn’t ring quite as clearly as it once did, but we are still here, fighting, believing. And so the bell still rings for T.

Happy holidays to all of our supporters. Thank you for helping us believe.

Windows to God

Published: December 5, 2011 ~ 1

By Laura Edwards

Every year, the arrival of the Christmas season leads me to take a step back and reflect on my spirituality.

I’m a seventh generation member of First Presbyterian Church in my hometown of Charlotte, and my dad’s family has an illustrious history there. The only women to be honored with military funerals in the church – the daughter and wife of General “Stonewall” Jackson and the granddaughter and daughter of Dr. Robert Hall Morrison (the first pastor of the church and first president of Davidson College) – are on my family tree. In the early 20th century, a father and son pair from my dad’s paternal grandmother’s family served as pastor and elder.

Despite my family’s history in the church, I’ve never been particularly religious. When I was a child, my family often sat in the overflow section adjacent to the sanctuary on Sundays or, worse, ate a second breakfast at Bruegger’s in our Sunday best because I’d balked at wearing a dress just long enough to make us too late even for the overflow section. I did, however, know the stories of the Bible better than any of my Sunday school classmates, because I got bored to tears during the grown-up church service, and reading the Bible was the only thing my parents allowed me to do to pass time during the minister’s sermon. As an adult, I’ve made it to church very little. I didn’t join a congregation during my four years as an undergrad in Chapel Hill, and my husband (raised Catholic) and I don’t regularly attend church now; in fact, we really only make it for Christmas and Easter – sometimes.

Though I’ve never been much for organized worship, I’ve always been spiritual. I kept journals for years, and every once in awhile, I’ll go back and read some of them. Even during (and perhaps even particularly during) my teenage years, God influenced my words. My third cousin, the late Reynolds Price, once told me that it was okay if standing on a mountaintop made me feel closer to God than sitting in church. Many of the stories written by Reynolds, whose books were published in more than 30 languages, are spiritual in nature, from the obvious (The Tongues of Angels) to the not-so-obvious (A Whole New Life). Several years ago, I studied four of his works, the aforementioned titles included, during a series I attended with my mom at First Presbyterian (one of the few times in recent years that I’ve visited the church grounds on a regular basis). I did some of my best writing in the weeks following those sessions. I wrote a lot about God. And today, though the thought of attending a Sunday service doesn’t make me cringe the way it did when I was 12, I still prefer to search for religion outdoors rather than under the roof of a church. I felt incredibly close to God the morning my husband and I stood on the rim of Utah’s Bryce Canyon in the biting cold of a 13-degree October dawn at nine thousand feet to follow the sun, a glowing ball lifted into the sky by invisible hands, as it illuminated the hoodoos – thousands of drip castles frozen by time.

Rainy Lake I felt just as close to Him one day four months ago, when we hiked to a remote, glacier-carved lake in North Cascades National Park on the Canadian border. When I first laid eyes on that scene, I knew that only divine hands could have created something so wonderful.

After Taylor was diagnosed with Batten disease in 2006, I was angry at God for a long time, and I wasn’t the only one; my mom – a far more faithful churchgoer than I – admitted that she left the sanctuary one Sunday during the sermon, because she just couldn’t bring herself to give thanks to God, at least not that day. I went to counseling for awhile, and my first of two therapists asked me to read a book that he said would teach me to understand that when bad things happen to good people – for example, Batten disease to an innocent, perfect-in-every-other-way 7-year-old child – it isn’t God’s doing – that God feels our pain, too, and gives us tools to face the sorrow that marks human life.

I stopped going to therapy well over a year ago. I’m not sure how much all of those hours spent on couches in counselors’ offices helped me face my sister’s illness and the pain and suffering it has caused my entire family, but I have never forgotten that first lesson. And good thing, because I don’t think I could go through life hating God. If anything, making peace with God has helped me concentrate on what’s good; for example, the sound of my little sister’s laugh or the sight of her smile, both of which make an appearance less often these days and thus have become even more cherished; or the love of my family, which has stayed strong in the face of unfathomable tragedy. Also cherished are the travels that have taken me to some of the most beautiful natural places on God’s earth – those places where I’ve chosen to worship, if silently – and my frequent runs, during which I feel, despite the pain in my joints, that while Batten disease could have only been conjured in Hell, it may knock me down, but it will never beat me.

These are my windows to God.

And the Sun will Set, and Rise Anew

Published: November 23, 2011 ~ 0

By Laura Edwards

Tonight, on the eve of a national holiday about giving thanks, I want to do exactly that…regardless of the dark forces that dare to confront us in the light of day; the monsters, seen and unseen, that threaten all that is beautiful. Because if there is one constant in this world of ours, it is that the sun will set, and the next morning, it will rise anew. And when that moment comes, I will stand at the window, and I will give thanks for the sunlight on my face and the air in my lungs. Should it happen to rain, I will walk outdoors and greet it, and then I will dance. I will face the day, and I will cherish it.

Sandcastles

Published: November 16, 2011 ~ 2

By Laura Edwards

I started writing stories when I was still wearing Velcro sneakers and pigtails and catching lightning bugs in jelly jars in the summer. In junior high, I often retreated to my tree house for hours with only a spiral notebook and a ballpoint pen. And though I’ve almost always written fiction, I’ve rarely succeeded in keeping real life out of my stories. People who’ve touched me have a way of sewing themselves right into the fabric of my life, such that if I were to try to remove them, the whole thing would come unraveled.

There’s my Granddaddy Parks, a Duke-educated World War II vet who wore Brooks Brothers to the table every morning. He liked two eggs sunny side up and his bacon cooked to a crisp. He spread real butter on his Pepperidge Farm toast and drank Dr. Brown’s black cherry sodas. Granddaddy Parks always smelled like medicine. He sat at his card table in the den with a glass of club soda to take his pills. In the afternoon, if he wasn’t playing golf, we read Winnie-the-Pooh books or watched Tom and Jerry cartoons on his laser disc player and ate green grapes or Edy’s cookies ‘n cream ice cream. When I was 8, he and my grandmother took me to New York City. We stayed in the Hilton, where the housekeeper tucked my stuffed dog from FAO Schwartz under the covers of my rollaway cot so that it’d be resting, waiting for me, when we returned. We ate at places like La Cote Basque, where a lady behind me ordered escargot and made me lose my appetite, and Mme. Romaine de Lyon, where the red and white-checkered tablecloths were made of fine linen, not plastic. While we waited for our food, Granddaddy taught me how to play games like blackjack and poker, games he got to play at the high rollers’ tables whenever he went to Las Vegas. During family beach vacations, he’d take all of us to Tony’s, a little Italian restaurant tucked away from the commotion of the Grand Strand. My dad never got to eat pizza or pasta at home growing up, because Granddaddy didn’t like the way it smelled. But Granddaddy knew I hated the Marker 350′s lobster and loved Tony’s cheese ravioli. So every summer, we went to Tony’s, and Granddaddy had the veal.

My Granddaddy Parks finally succumbed to a weak heart the winter I was 14. I was at a soccer tournament in Georgia and never had the chance to tell him goodbye.

There’s my Grandma Kathryn, who dropped out of school at 16 to have my mom and, for most of my life and long before I was born, ran her own business, Kut & Kurl by Kathryn, in the same building as my Papa Jerry’s grill and a pool hall that generated a good chunk of Papa’s customers. Grandma Kathryn wore Kmart jeans to cut hair and bought her church clothes at Hudson Belk. She liked crushed ice, not cubes, and stuck her coffee in the microwave right after she brewed it, because she liked it piping hot. She helped me find sand dollars on the Oak Island shore and write poetry while driving on I-40 in eastern North Carolina; together, we found beauty in a scrubby patch of wildflowers perched on a hill and a jet gliding across a backdrop of flat, gray sky. She rubbed my temples during my migraine attacks and, during my undergrad years, drove to Chapel Hill to take me to Mama Dip’s for Brunswick stew and strawberry shortcake when I’d had a bad day.

My Grandma Kathryn has a horrible brain disease that is like dementia, depression, and Parkinson’s disease all rolled into one. Every time I see her, it feels like the continuation of one long goodbye that may never have a proper conclusion.

There’s my sister, Taylor, who came into my life at a time when I thought she would just get in the way but found her way into my heart before she ever uttered her first words. Taylor padded around the house dragging my stuffed UNC mascot by one fuzzy black hoof and held my pinky finger when she slept in my arms. From the confines of a stroller, she helped me take over the below-ground level of a mall in San Francisco while our parents went to a company dinner. She gave concerts to imaginary thousands – she the lead singer, her big sister the keyboard player, my parents’ hearth our stage. She danced circles around my desk chair, a welcome distraction while I did my math homework, and chanted “Rar-Rar!” at the top of her lungs from the sidelines during my soccer games. She helped me build sandcastles by the sea and weave stories of the princes and princesses living inside. She taught me that even girly girls aren’t above jumping into a pile of leaves and convinced me to give the color pink a second chance. She helped me understand that growing up healthy is a privilege that cannot always be earned.

My sister, too, has a tragic brain disease. It already stole her vision. Now it is stealing her speech and her ability to walk. Before it is done with her, it will steal her life. She is 14.

I want to hold onto all that’s ever happened to me, everything I’ve done, and everyone I’ve ever known. I want to see every face, hear every voice, and feel every moment we’ve shared. It’d be easier to let it all wash away, gone forever, like sandcastles at the changing of the tide. But if that ever happened, a large part of me would be gone forever, too.

Laced with Love

Published: November 14, 2011 ~ 0

By Laura Edwards

In March 2010, an errant soccer ball in an indoor match shattered my nose into a million little pieces. I got hit in the face again last fall, just four months after major surgery to repair the fracture. And three days ago, I underwent my second – and hopefully last – major nasal/sinus surgery.

My family, God love them, has been patient with all of my soccer and running injuries all the way back to my middle school days, when my dad – my number one fan – and I ended up in the hospital emergency department several times. I’ve torn my ankle ligaments so many times they’re like old, loose rubber bands ready to snap at any moment; I’ve hurt my knees; I’ve injured my Achilles tendon; I’ve had my upper lip ripped apart by a stone on a ring on the finger of a girl on an opposing team in a soccer scrimmage; I’ve had two foot surgeries; I’ve tried every imaginable orthotic in an attempt to relieve foot and calf pain when I run; and I wouldn’t be surprised to find out I’ve had a concussion or two along the way. Off the field, I’ve fallen out of a tree house and from the top of a high diving board, both times landing on my back; I’ve survived one car accident only by the grace of God and been lucky to walk away from others with nothing more than jangled nerves.

This past Thursday night, my little brother – with whom I exchanged maybe five nice words when we were kids but love to pieces now – called to wish me well the next day. The next morning, my dad arrived on my doorstep to take me to the surgery center for my latest operation; he stayed on call throughout the procedure, which took twice as long as expected; when he had to leave, my mom and my sister relieved him and cared for me until my husband picked me up later in the evening. All weekend, my husband played nurse and still managed to clean the house, feed the dog, rake the leaves, cook the meals and answer my every beck and call. Today, both of my parents teamed up on a wild goose chase of sorts for new pain meds, because I had an allergic reaction to the first and struggled on just Tylenol. And tonight, with my husband stuck at his engineering firm feverishly working to meet a deadline, my dad showed up at my house with a dinner of chicken, rice pilaf and pumpkin pie, all laced with love.

You can choose your friends, but you can’t choose your family. You can make decisions one way or another that have an effect – for better or worse – on your health – but you can’t choose your genes. None of us would have chosen a life of infantile Batten disease for my little sister or any child. But I’d rather have my family, complete with its tragic genetic mutation, than not at all. I’d rather fight with them than with anyone else, and I wouldn’t trade them for the world.