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.

To Overcome

Published: November 3, 2011 ~ 0

By Laura Edwards

I love this quote, included on a fundraising request from a Charlotte-based organization called Metrolina Association for the Blind:

“Although the world is full of suffering, it is also full of the overcoming of it.” –Helen Keller

How can we overcome the suffering caused by Batten disease, even for a single day? How can we end it for good?

Ironman 70.3 Miami: Less than 36 Hours to Go!

Published: October 28, 2011 ~ 0

By Laura Edwards

The Marshes’ view earlier today, somewhere in South Carolina

Early this morning in Charlotte, NC, Amy and Parker Marsh loaded their car, racked their bikes and set out for Miami, FL. On Sunday morning, they and 2,500 others will compete in the Ironman 70.3, a grueling test of endurance and will that begins with a 1.2-mile open water swim, followed by a 56-mile bike ride and finally ends with a 13.1-mile run through Miami proper. Though the Marshes have competed in numerous triathlons and half-marathons, this will be their first half Ironman. And they’ll be doing it for children fighting Batten disease.

During the journey to south Florida earlier today, Amy shared her pre-race thoughts with me via a text message:

We are excited that our big race day is finally here but are a bit sad that all of the training and preparation is coming to an end. We are hopeful that the race goes smoothly – no flat tires!

We have been thinking about Taylor and will continue to think of her throughout our race. Every stroke we swim, pedal we push and step we run will be for her and other children with Batten disease.

In addition to promoting awareness of Batten disease, Amy and Parker have asked friends and family to donate to Taylor’s Tale in honor of their first-ever Ironman 70.3. They’ve already raised $860, meaning they are just $140 away from their $1,000 goal!

I think we can help the Marshes achieve their goal before the race begins on Sunday morning. Please consider giving at least $10 in support of the months and months of hard work Amy and Parker put into getting ready for their big day on behalf of children like Taylor! If just 14 people can spare $10, they’ll make their goal!

Click here to donate now. Thank you for your support, and best of luck to Amy and Parker!

2,500 Laps: Three Weeks to Go

Published: October 8, 2011 ~ 0

By Laura Edwards

The deadline for completing my 2,500-lap challenge in Taylor’s honor is October 29 – just three weeks from today. I’ve logged 1,670 laps in the pool since the campaign began on June 21 – meaning I still have 830 laps to go.

Eight hundred thirty laps in the 25-yard pool equates to about 11.8 miles. In running shoes, 11.8 miles would be pretty easy; in fact, I ran seven this morning and would have gone farther if not for my college football team’s noon kickoff. Unfortunately, running doesn’t have a direct correlation with swimming. After all, that’s why the running portion of an Ironman race (26.2 miles) is more than 10 times longer than the swimming portion (2.4 miles).

So, 830 laps in three weeks? All I can say is that I’ll give it my all. I put in 120 laps yesterday and 80 the day before. After I finished my 100th lap yesterday, the older man in the next lane over asked me if I compete. I was so shocked, I pulled my swim cap halfway back, shook the chlorinated water out of my ears and asked him to repeat the question. I haven’t “competed” (if “competed” means swimming in a timed race) since I took up space as a 7-year-old on the Beverly Woods East neighborhood pool swim team during the 1989 summer season. So, I explained to the man that I’m a runner/soccer player rehabbing an Achilles injury and trying to churn out 2,500 laps for her sick little sister in the meantime – that is, 2,500 laps of breaststroke, since it’s the only stroke I’m not ashamed to put on public display. I think he thought I was crazy. At the very least, I took off shortly after answering his question, and, when I returned to that end of the pool 50 seconds or so later, lap number 102 in the bag, he was nowhere to be found.

If he thought I was crazy, he certainly wouldn’t be the only one. I think I’m crazy, too; torn ligaments and tendons, inflamed metatarsals and broken noses be damned, I’ll keep moving. I’ve always loved athletic pursuits, and in the past five-plus years since Taylor’s diagnosis, they’ve been my lifeline. I love a good adrenaline high, and it works wonders as a temporary analgesic for the searing pain in my legs and feet and the heart-wrenching pain caused by watching my sister lose ground to the disease lurking in her genes.

But, no matter how far or fast I run or swim, my little sister still has Batten disease. And when my post-workout physical pain subsides, the emotional pain always returns.

Mud Everywhere!

Published: September 25, 2011 ~ 0

By Laura Edwards

My husband, John, is the latest to embark upon a Miles to a Miracle campaign for Taylor’s Tale. On Saturday, October 15, he’ll compete in the USMC Ultimate Challenge Mud Run in Columbia, SC with three teammates.

John’s team after the 2010 Greenville Mud Run

The USMC Mud Run is a 5.2-mile, all-terrain course peppered with thirty-six obstacles. It attracts participants from across the nation and is the largest mud run in North America. Teams are required to jump, climb, crawl and swim their way over, under and through mud holes, walls, trenches and other obstacles en route to the finish line. Participants get mud in places they didn’t know existed and, after completing the race, take what my husband (who completed his first mud run in Greenville, SC in 2010) calls a “fire hose shower.” Before they climb in the car to go home, participants strip down to their underwear and throw their clothes – including shoes – in the trash. The mud run is not a place for someone like me – an athlete with a knack for getting injured. That’s why I’ll be in the cheerleader role when John gets muddy in honor of my little sister, Taylor.

My husband’s worked hard to get ready for the big day, often joining me on my runs and doing chin-ups at odd hours of the day and night. Please consider supporting John’s efforts in the USMC Ultimate Challenge Mud Run by making a donation to the Taylor’s Tale Miles to a Miracle campaign. Simply click on the link below to visit John’s Miles to a Miracle profile, scroll to the ‘Support My Cause’ section at the bottom of the page and enter your donation amount in the space provided. As a friendly reminder, Taylor’s Tale is a 501(c)3 non-profit organization, and all donations are tax-deductible! Oh behalf of John, the Taylor’s Tale team and all children like my sister, thank you for helping us put an end to Batten disease!

Support John’s efforts with a donation to Taylor’s Tale

Learn more about the USMC Ultimate Challenge Mud Run