Cheating Death

Published: August 21, 2010 ~ 0

By Laura Edwards

I’ve cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents – both younger at the time than I am today – that I’d be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then – miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly, and, occasionally, a headache so severe that I’m almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents’ house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don’t remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother’s wedding dress, hermetically sealed inside a cardboard box in – you guessed it – the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe 5 and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn’t asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom’s attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into nothingness, time stood still, and I actually saw my mom’s visor fly off her head as she came towards me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back or my neck or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet Popsicle shaped like a frog and with gumballs for eyes. By the time I’d licked the Popsicle stick clean, I’d made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, South Carolina for a weekend-long soccer tournament. We played five or six games – I can’t remember for sure – in a 36-hour span. By Sunday night, I was drained. I wasn’t sure I’d be able to make it all the way back to Chapel Hill, so I stopped at John’s apartment at UNC-Charlotte, walked inside, and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John’s apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barreled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn’t hit that speed limit sign, I wouldn’t have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I’m not a betting person, but I’m willing to bet my Honda Civic wouldn’t have fared too well, and I’d have fared even worse.

I’m feeling pretty lucky at the moment, and I haven’t even mentioned a few other exciting car accidents, or last year’s brief cancer scare, or my bad copy of the gene that causes infantile Batten disease – paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn’t accidentally set her grandparents’ house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I’ve been granted my fair share of new leases on life, and every morning when I wake up, whether or not I’m looking forward to the particulars of my day, I’m just thankful for the day. And for as long as God thinks I should be here, I’ll keep fighting for Taylor – to help her cheat death, just this one time.

Birthday Wish

Published: August 18, 2010 ~ 0

By Laura Edwards

When I was 15, I came home from school on a dismal January afternoon and found my mom sitting cross-legged in the floor of her closet. As I stood in the doorway, my backpack still slung over one shoulder, she told me she was pregnant, due in August.

A high school sophomore just a few months shy of her 16th birthday, I couldn’t fathom the idea that my mom was pregnant. So, my supremely adolescent response to the whole matter was to grab my Sony Discman (still cool in 1998), lace up my sneakers and run out into the sleet and freezing rain. More than an hour later, I returned home with frozen eyelashes and wet clothes and walked right past my mom. I didn’t bring up her news once that night – and eight months later, when my little sister was born, I found various reasons not to make it to the hospital. The afternoon Taylor came home, though, I raced my now-husband up the stairs to peer over the side of her crib (he won the race and maintains that he has known her longer). First place or not, I was instantly hooked.

That day feels like it happened in another lifetime. This Thursday, the baby I fell in love with the moment I saw her will celebrate her twelfth birthday. Over the past 12 years, we’ve watched countless movies together, ridden bicycles in the driveway, done silly dances in our socks on the fireplace hearth, raced down the corridors of an underground mall in Toronto in T’s stroller, gotten our nails done, cheered for the Tar Heels, bought special treats for each other’s dogs, eaten lunch with the Disney princesses and collected their autographs, rocked to the Cheetah Girls, Miley Cyrus and the Jonas Brothers at the local arena, built towering sandcastles in the sand, let the waves crash over our ankles and feet and, best of all, given each other lots of hugs. I thank God every day for the sister I never imagined I’d have or even knew that I wanted. I pray to God every day that the memories won’t have to end.

She doesn’t know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won’t be cured by this Thursday – I’m a realist – but real progress can be made. As a friend of Taylor’s Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister’s life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.

Grant My Birthday Wish for Taylor

Along for the Ride

Published: August 6, 2010 ~ 0

By Laura Edwards

Nearly four days have passed since I returned home to Charlotte, and yet I am still trying to process all that I saw, heard, and felt at the annual BDSRA conference in Chicago. As I said a few posts ago, I knew going in that the conference would be mentally and emotionally challenging for me. I officially attended as the president of Taylor’s Tale, and my mission in that sense was threefold: learn as much as possible about research, talk to as many researchers as possible and deliver a check for a research project. Research, research, research. Focusing on the research helped me achieve the goals I set for my time, and our organization’s time, in Chicago.

Words to describe my weekend: whirlwind. Exhilarating. Sleep-deprived. Inspiring. Painful. There were times I didn’t know if I’d make it. I know some families – many of them long-time veterans of this conference – will read this and wonder why. I realize that for many families, the conference is a time to connect with the only other people in the world who can possibly understand what they’re going through. A time to get advice from clinical folks who know how to at least attempt to untangle the tangled web of symptoms Batten disease kids face. In that sense at least, Chicago was easier than Rochester in ’07. I don’t like it, because it acknowledges that my sister has this disease, but I now know that I belong.

I was in the middle of a research session on Saturday morning when solace came to me in the form of a blinking red light on my BlackBerry. My sister had sent me an email – an email she typed thanks to a fantastic little program on her laptop that says the characters aloud as she punches the keys. And there on the phone’s tiny little screen was my sister’s heart and soul – her journal entry recounting our vacation in the Virgin Islands:

We went to the virgin islands. John saw a little shark and it ate a fish right in front of his knee. Scary! A BIG iguana sat under my lounge chair. He was as big as sunny with a tail as long as a snake.

From that point on, my day only got crazier, but unlike the prior 36 hours in the Chicago hotel, I flew from session to conversation to PSA filming to session to basement gym treadmill to conversation to banquet to hotel bar (where I could still be found at 12:30 in the morning, less than seven hours before my ride to the airport was scheduled to appear in the drive out front) on the wings of an angel. And as I sat exhausted on the plane the next morning, I felt hollowed out but also more whole, and I knew then that my sister’s courage had gotten me through yet another dip in the roller coaster at a time when I was not strong enough to ride it alone.

Dream Therapy

Published: July 30, 2010 ~ 0

By Laura Edwards

My first full day in Chicago is not in the books, and I’ve already managed to glean a lot of great information about infantile and late infantile Batten disease research. I look forward to sharing many details in our summer e-newsletter. It’ll be delivered in the next few weeks, so if you haven’t already, please be sure to go to our website and sign up to receive it!

Talking to scientists – getting the scoop on where things stand straight from the source – is incredibly important to the work we do at Taylor’s Tale. It’s not enough to help me sleep at night, though. Those conversations give me plenty to chew on, but I go somewhere else for my daily dose of inspiration – a medication I sorely need whenever I start to feel angry at a world that includes Batten disease or get impatient about the speed of science.

Today’s dose of inspiration is this picture of Taylor and our dad while on vacation in the Virgin Islands last weekend. Dad told a joke at his own expense and asked T if he should puff up his chest for the camera. Right as I snapped the picture, T considered this and laughed. It was the best moment of that day. That’s the kind of moment that helps me run faster and fight harder. It’s the kind of moment that makes my dreams good again.

Déjà vu

Published: July 30, 2010 ~ 0

By Laura Edwards

I arrived in Chicago a few hours ago for the Batten Disease Support and Research Association (BDSRA) annual conference.

As I walked into the hotel lobby, I couldn’t help but feel as though I’d been here before. I have, in fact, only been to Chicago once before, and that was for a work conference at a place with a view of Michigan Avenue. What I remembered, rather, was the moment my mom and I entered a different hotel in Rochester three years ago for our first BDSRA conference, which that year was paired with the international scientific congress on neuronal ceroid lipofuscinosis (NCL), the fancy name for Batten disease. We were still new to this then, not quite 12 months removed from that fateful day in July when a geneticist told my parents that their youngest daughter was going to die. We were scared because we were still getting to know Batten disease at that point. We were scared because we knew the conference hotel would be teeming with kids far more affected than Taylor at the time – our unwanted crystal balls. And yet, encasing the fear that resided deep within us like a hard, defiant shell was an enormous sense of confidence and our untarnished, shared belief that T would be different, that we would win.

I still wear that shell, but its once spotless exterior is covered in nicks after four hard years of watching a little girl I love, and our family, bend (but not break – not yet) under the weight of the tragedy that was encoded in all of T’s genes and half of mine. I just realized that I never blogged on the most recent anniversary of T’s diagnosis – July 24, one week ago tomorrow. I wonder now if counting those years ever mattered, or if it ever will. One thing Batten disease has managed to teach me, after all, is the importance of cherishing each day. I am simply too human to tackle this whole years or even months at a time. So instead, I tackle each day. I am not quite the same person I was when I walked into that Rochester hotel three years ago. In some ways, I am weaker. And yet, I am stronger – buoyed by the enduring hope that all of our friends’ and donors’ great gifts of time, friendship, love and money have given me. On Saturday night, I will award another research grant on behalf of Taylor’s Tale as well as all those who support us and all those we aim to save. And for another 365 days, I will believe.

Petals Off a Rose

Published: July 4, 2010 ~ 0

By Laura Edwards

It is July 4, a beautiful day in Charlotte. The Yankees game is on television, and the team in pinstripes is threatening to score. In a few hours, we will join friends and family for a cookout and, later, fireworks.

My mind and my heart, though, are on Oak Island off the coast of North Carolina, in the high-ceilinged kitchen of our beach house. I am 12. My mom is slicing a watermelon, and my grandmother is folding our quilt that doubles as a picnic blanket into a perfect rectangle. The men are sweating in their khaki shorts on the fake leather couches in the adjoining den. My brother, Stephen, is in the corner, playing a handheld video game. I am at the kitchen table – the same table that years later will sit in my college apartment and, after that, my post-graduation apartment back home, and finally, the bonus room in my house. I am drawing pictures in bright colors and eating a popsicle. Some of the cherry-flavored juices dribble onto my picture. I give one of my cartoon characters a red shirt to hide the spots. We are just a few hours away from piling into the car and driving seven miles down Main Street and over the bridge to the mainland and into the picturesque town of Southport on the shores of the Cape Fear River. Before reaching the waterfront park, we will stop at Hardee’s for fried chicken and biscuits and mashed potatoes and gravy and sweet tea. At the park, we will spread our blanket among the others and stretch out to eat under a hazy blue sky. After dinner, my brother and I will walk down to the pier and buy red, white and blue snow cones. Someone gives us 10 dollars to buy fluorescent light rings that we will wear around our necks after the sun goes down. Just before nine, I put my head in my grandmother’s lap and wait for the fireworks to light up the sky, an easy smile stretched across my small face.

It is just one version of a memory that was a staple of my childhood. From year to year, the minor details may have changed – for example, one year, Stephen and I didn’t make it to the trailer that sold snow cones, because we ran through the sidewalk sprinklers after dinner until the adults worried, because it was getting dark and they didn’t want to lose us in the throng of people on the lawn.

I haven’t spent July 4 on the Southport waterfront in 12 years. My grandparents sold the beach house on Oak Island when I was in high school. I have been back to the island twice since then, and only once for an overnight trip. On that particular trip, I was relieved to find that the house was still there. I was sad to see the unfamiliar sedan parked in the unpaved driveway. My mom, grandmother, Taylor, and I stayed in a friend’s condo on the Intracoastal Waterway half a mile from the old house. I had a migraine the night we drove to Southport to sit on the swings a stone’s throw from the picnic table that still had my name carved into the top in block letters and found my 6-year-old sister’s constant chattering unbearable. I yelled at her a lot. During a moment of temporary sanity, though, I took a picture of the others sitting together on the swing. It is in a frame in my guest room today. I keep the door to that room closed most of the time, but sometimes I’ll walk in there just to look at that picture. In it, T’s strawberry-blonde hair is long. As always, she is in pink. She can clearly see me standing there with the camera pointed at her, and she is looking at me. Her feet don’t touch the ground. Almost exactly one year later, she will be diagnosed with Batten disease.

A neurodegenerative disease is, in a way, like the passage of time. I have faith that there will be always something new to look forward to. After all, I met my husband around the time we sold the beach house. My mom had Taylor the last summer we spent there – a memory cemented by the picture of her very pregnant on the couch in the sun room. I met some of my closest friends on campus in Chapel Hill years later.

Time, though, while promising the creation of new happy memories, strips some of the old ones away. Since Taylor was diagnosed with Batten disease in the summer of ’06, I have lost my great-grandmother, worried constantly about my grandfather’s failing physical health and the unimaginable stress my parents have to endure, watched degenerative brain disease tighten its long-held grip on one of my grandmothers and spring a sudden, forceful, rapidly moving attack on the other. Meanwhile, Batten, in its own dreadful way, has systematically robbed my beautiful little sister completely of sight, to some degree speech and to great degree happiness. Time has a way of washing away many of the painful memories, but sometimes it also steals from us the memories that are most beautiful, like pulling petals off a rose.

Moments of Wonder

Published: July 3, 2010 ~ 0

By Laura Edwards

Life is unpredictable.

Sometimes, beautiful sunrises are followed by unfortunate phone calls that haunt the recipients for the rest of their lives. Other times, tragic accidents bring two people together who otherwise may never have met, and those people fall in love. We struggle to get through some days and claw and scratch our way out of the worst of them. When we find ourselves in a long, dark tunnel, it’s the light at the end, either seen or imagined – breathing in mountaintop air, hearing the laugh of a child, getting a hug from a friend – that helps us find our way.

Life is a mixed bag.

In the middle of the night last night, I gave up on sleep. Seeing that my husband had had better luck finding peace, I climbed out of bed gingerly, tiptoed around my sleeping dog’s bed on the floor of our room, opened the door quietly and padded down the hall to our great room. I sat down on the couch. I briefly took in, for the first time, the way light and shadows play on the 18-foot ceiling and walls when the world is sleeping. And then, without warning, I started to cry. But the sun still rose this morning, and not 10 hours after my solitary moment of grief, I laced up my shoes and stepped outside into a beautiful, sub-90-degree July day under bright green leaves that whispered in the midday breeze and a blue sky unmarred by clouds. I took a walk with my husband and my dog and breathed it all in, and I was happy.

Life is full of terrible pain and grief, but even in its darkest hours, life can be illuminated by moments of great wonder and beauty. Those are the moments that make life worth living.

What Do You Wish For?

Published: June 10, 2010 ~ 0

By Laura Edwards

I went out for a sweet treat last night with my two favorite girls – Taylor and my mom. We experienced the euphoria of Yoforia, a new frozen yogurt shop situated conveniently (i.e. dangerously) on the way home from my office. After eating our yogurt piled high with toppings, we sat on the bench in front of the fountain outside to watch the sky as it thought about storming, then sprinkled a few stray drops, then shifted colors like a kaleidoscope until finally fading into early dusk.

I can’t walk by a fountain without making a wish, a trait I picked up through countless nights at the old SouthPark Mall fountain outside the now long-extinct Baskin Robbins with my dad and enhanced in recent years by my increased need for fulfilled wishes. So as the late afternoon sky changed from cotton candy blue to deep purple and lavender to fiery orange and back again, we pulled out our wallets and produced handfuls of change. We fed the fountain with pennies, nickels, dimes and quarters to the fountain’s and our hearts’ content, squeezing our eyes shut tight and making a wish on every last coin.

I wish for a strong run on the rain-soaked streets of my neighborhood as soon as I publish this post. I wish for a sound night’s sleep tonight. I wish for a successful surgery tomorrow morning to fix the nose I broke playing soccer three months ago. I wish to feel well enough this weekend to watch the Americans at least play England to a draw in their World Cup opener. I wish for a summer filled with charmed memories created from here to the white sands of the Virgin Islands – images and smiles to bottle up for another day. I wish for a coming year in which the dark shadow of Batten disease moves at the pace of a snail – or not at all – to envelop my sister. I wish to see her grow up to experience the same milestones I have been lucky enough to live – graduating from high school and college, falling in love, getting married and finding a way in the world. I wish for a cure. I wish for the strength, the courage and, above all, the miracle that could write her happy ending.

Give Me a Sail

Published: June 7, 2010 ~ 0

By Laura Edwards

Learning that someone you love has Batten disease is like being stabbed with a serrated knife. Watching Batten disease attack someone you love is like twisting that knife a little more deeply over days, weeks, months, and years.

After almost four years of this, I know a lot more about Batten disease but still nothing more about the future than I did on day one. If there is one thing I do know, though, it’s that I have to keep breathing.

Because tomorrow, the sun will rise…and who knows what the tide will bring?

Give me a sail.