Atypical Situation

Published: July 30, 2012  ~   0
By Laura Edwards

Hope Solo, a fixture on the US women’s national soccer team, makes headlines for her fiery personality almost as often as she does for being one of the world’s best goalkeepers. Today, she refused to back down from tweets she made Saturday criticizing Brandi Chastain, a commentator covering the Olympics for NBC.

I grew up playing soccer. In my eyes, Brandi Chastain is not a sports broadcaster but rather the primal screaming, sports bra-baring hero of the 1999 Women’s World Cup final. Chastain scored the shootout goal that beat China for the title in front of more than 90,000 people in the Rose Bowl. The next morning, after reading the newspaper, I cut out the iconic images of the game and made a collage that hung in my room until I got married nearly seven years later.

Before that legendary match, the US had to win other games to get to Pasadena. The quarterfinal against Germany took place in the Washington, DC area. Just a few days before the game, Dad got three tickets. To this day, I don’t know how or where he got the tickets or how much he paid for them. Dad told my brother and me we’d have to drive to the 7 p.m. game that day and drive back to our home in Charlotte, NC that same night – almost 1,000 miles total.

We didn’t stay very long to celebrate after the win; we got back on the road by 11. I was 17 years old that summer, and Dad asked me if I wanted to start out behind the wheel. I thought we’d take turns driving, but Dad and my brother passed out before we even reached the highway.

I drove all the way back to Charlotte without stopping even once. I kept the highway between my thumbs; I listened to the same song, “Typical Situation” by Dave Matthews Band, on repeat for hours and at a volume that should have kept my dad and brother awake but didn’t; I rode the adrenaline high of an amazing win by our country and an experience I would never forget.

My sister, Taylor, will be 14 in a few weeks; in a few short years, she will be the same age I was on that magical night in DC.

At Taylor’s age, I idolized the women’s national soccer team. I wore the jersey in my dreams and scored on invisible opponents on empty fields for hours on end in real life.

Sometimes, I wonder what Taylor dreams about now. I wish she could tell me. I wish I could give her everything.

Neuronal Ceroid Lipofuscinosis

Published: July 24, 2012  ~   0
By Laura Edwards

I hate July 24.

On June 3, 2006, my grandparents hosted my wedding shower at their house in Wake Forest, NC. It was the first day of the happiest seven weeks of my life. At the time, I had no way of knowing that it would be the next-to-last time that I would have my entire family and my closest friends together for a happy occasion (my wedding would be the last). We grilled burgers and chicken and dined on card tables set up on the lawn behind Grandma Kathryn’s beloved back porch. The sun sank beneath the horizon about the time John and I opened the last gift and my grandfather polished off the last piece of cake; my little sister, Taylor, and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears.

Taylor and Morgan in leis

On June 24, I married my best friend from high school in a beautiful inn famous for its lush gardens in the mountains of North Carolina. Taylor and Morgan ruled the tiny, makeshift dance floor in the inn’s parlor after the ceremony.

On July 24, my husband and I wished each other a happy one-month wedding anniversary, kissed each other goodbye and headed our separate ways for work. As I drove to the office under a clear blue sky, I thanked God for all the gifts He had given me. I was newly married to my best friend and had an amazing family, a great job and even a promising novel in the works. I felt invincible.

A few minutes after 10 that morning, I hit ‘save’ on a press release to take a call from my mother.

I can’t remember much of what Mom said to me. I don’t know how much I heard over the loud ringing that filled my ears after she said the words “neuronal ceroid lipofuscinosis” in reference to Taylor. I remember, with my sobbing mother still on the phone, Googling that phrase with trembling fingers and crumpling into my chair like a crushed soda can when I read the summaries listed with the search results until my eyes filled with tears and I couldn’t read any longer. The words and phrases shot off the screen and straight into me like icy daggers, each one more awful than the last:

Rare. 

Inherited. 

Progressive.

Seizures.

Motor deterioration.

Cognitive deterioration.

Blindness.

No treatment.

No cure.

Early death.

I don’t remember the rest of that phone call, but I will remember July 24, 2006 for as long as I live.

Taylor doesn’t chase fireflies in the moonlight anymore, but I will never forget the innocent beauty of that night she shared with our cousin, Morgan, before a sleeping genetic defect awoke from its seven-year slumber and began its systematic destruction of a life with great promise.

I no longer need Google to tell me what neuronal ceroid lipofuscinosis – or Batten disease – does to a child like Taylor. I’m an expert on a disorder I never wanted to know. I’ve spent time with the world’s greatest Batten disease scientists. I’ve seen it unfold in real life. I’ve watched it wreak havoc on my sister. I’ve seen the names of children I know added to the list of “Batten angels.”

I declared two wars on Batten disease on July 24, 2006 – the war for my little sister, and the war to end Batten disease forever.

Batten disease is winning the war for my little sister. It’s had six long years to do its dark work.

As I’ve watched how Taylor has faced her disease, I’ve realized one thing that gives me satisfaction, if not true solace:

Batten disease may have the power to destroy a life with great promise.

But it can never destroy a heart with great love.

Dance with Me

Published: July 22, 2012  ~   0
By Laura Edwards

20120722-195412.jpg Five years ago, just days shy of the one-year anniversary of my little sister’s diagnosis, Mom and I flew to Rochester, NY for our first Batten Disease Support & Research Association annual conference. The airport shuttle dropped us off in a parking garage beneath the hotel, and we rode an escalator up to the lobby.

I will never forget the moment we stepped off that escalator into a sea of children strapped into wheelchairs with ugly IV bags and feeding tubes and beautiful yet broken eyes. Right then, standing in that lobby, more than 700 miles from my golden-haired, caramel-eyed sister with the sharp wit, sassy smile and broken gene, Mom turned, hid her face against my shoulder, willed herself not to cry and willed Taylor’s fate not to deliver on its horrible promise. That day, Mom vowed to never take Taylor to a BDSRA conference.

This year, the conference came to our hometown of Charlotte, NC. Affected children and their families and scientific and medical experts from all over the world spent four days in a hotel just a 10-minute drive from my parents’ neighborhood. But still, Mom held true to the vow she made in that hotel lobby in Rochester at the dawn of our journey.

The BDSRA conference always includes a Saturday night banquet that begins with a procession of affected children into the hotel’s ballroom followed by a dance (siblings dance to raise money for BDSRA, and others get in on the fun). I didn’t dance last night, even though I’m a sibling and my husband and dad joined Mom and me at the banquet. Instead, when I wasn’t working with a good friend there to film a video for Taylor’s Tale, I stood on the edge of the parquet dance floor and watched. I thought about how much Taylor, at home with a respite care worker, would have loved the dancing part of the banquet. I smiled at the memory of our friend Callie’s wedding in May, when Mom, Dad and Taylor ruled a small corner of the beach house’s dance floor, and smiled even more broadly at the image of my sister and my cousin Morgan in their matching flower girl dresses, twirling around the foyer of the Inn at Ragged Gardens at my own wedding exactly one month to the day before Taylor’s diagnosis.

As I watched, I noticed Emily, a beautiful, blonde angel of a little girl, ruling the dance floor much as Taylor did at her age. As my gaze followed Emily’s twirls and jumps and spins, it landed on her father, Tracy. In that moment, Tracy rocked to a much slower song than the one that played from the DJ’s speakers. He held Emily’s affected twin sister, Laine, in his arms.

I hate, hate, hate this disease.

That’s all.

Big Damn Fish

Published: June 19, 2012  ~   0
By Laura Edwards

big fishI’ve never been a huge fan of fishing; I don’t have the patience. I can’t stand it when I go long stretches of time without a bite or – worse – when a fish steals my bait. I like chilling on boats and beaches and riverbanks, losing myself in a good book or good conversation or simply soaking up the sunshine while other people fish.

Taylor has more patience than me – and more of a knack for fishing, apparently. My parents took my little sister out to a friend’s farm in a neighboring county late this afternoon and let her drop a hook in a stocked pond. Her catches grew more impressive as the shadows lengthened.

Fighting Batten disease, I’ve learned, is kind of like fishing. I have to be patient. If I spend too much time distracted by other things, I won’t be rewarded with progress. I have to keep an eye on the bobber. If I don’t, all of the fish might get away (and steal my bait!). But I’ve also learned that life, like fishing, isn’t fun if it’s all work and no play; if I’m 100 percent focused on the bobber all the time and never allow myself to look away – to read a page in my book or share in good conversation or soak up some rays from the sun – I’ll get burned out; I might learn to HATE fishing; and I might just let the big damn fish – the one fish we really want – get away for good.

When Pigs Fly

Published: June 13, 2012  ~   0
By Laura Edwards

flying pigA few minutes before 8 p.m., I shut down my laptop, vowed to ignore all emails for the rest of the night and took my dog, Daisy, on a walk before the last rays of sunshine gave in to darkness.

I didn’t do so well. At 8:09, I got an email from my mom with the subject line “fw: when pigs fly.” Well – wouldn’t YOU read it?

I’m not sure what you expected. But in our world, emails with subject lines like that originate from the desks of incredible scientists and include phrases like “translational research,” “pig model proposal” and “drug absorption.” You see, in our world, Porky the Pig isn’t just a pig. He’s a possible window to new discoveries – to answers for children like Taylor.

The most exciting thing about that email was that it contained a new idea. The craziest thing about that email was that I actually understood most of it – even scrolling through it on an iPhone with a 13-pound Westie tugging on my arm and a noisy lawnmower whining in my ears.

My elementary school required students to complete a science fair project every year. I hated the science fair. HATED it. One year, I chose the famous “Which brand of store-bought popcorn pops the most corn?” project, because I thought it would be easy.

Big mistake. I will never forget the Saturday afternoon Mom and I popped all those bags of popcorn. It was probably the most beautiful day of the year. We lived on a cul-de-sac at the time, and I could hear all of the neighbors’ kids’ voices as they played in the circle while I sat at the kitchen table, grudgingly counting every stupid popped and unpopped piece, one by one. I hated Mr. Orville Redenbacher’s guts and prayed for our microwave to break.

It’s not that I hated science. In fact, I found science incredibly fascinating. I loved learning about planets and galaxies and dreamed of discovering new worlds. I knew a ton of stuff about dinosaurs and built motorized cars and appliances with the erector set my grandfather brought back from F.A.O. Schwartz after one of his trips to New York City. Ninety percent of the stories I wrote in elementary and middle school (and I wrote a LOT) fell in the science fiction/fantasy category. Example A: kid’s mother’s boyfriend turns out to be an alien and kidnaps him. Example B: siblings find an old mirror in their grandmother’s attic and fall through the glass into a fantasy world full of prehistoric animals.

I loved – and still love – science that I can SEE – or at least science that I can visualize. I love science that has a story. I loved biology; I hated chemistry.

I hated my elementary school’s science fair, but one of my close friends won it every year. Now she’s getting her PhD in cell and developmental biology at Vanderbilt. And I’m still writing stories. Figures.

The more we change, the more we stay the same.

I always assumed I’d keep writing.

I never dreamed I’d be part of a worldwide effort to find a treatment for a rare, fatal childhood disease that kills its victims by preventing the body from breaking down fatty substances called lipopigments, thus causing the death of specific cells, called neurons, in the brain, retina and central nervous system.

I never dreamed that my little sister would be one of those victims.

Or that I’d be getting emails from talented scientists about translational research and drug absorption and pig model stuff. In fact, if you’d told me 10 years ago that at age 30, I’d be knee-deep in groundbreaking medical research, you know what I would have said?

“When pigs fly!”

Shelter from the Storms

Published: June 11, 2012  ~   0
By Laura Edwards

The sixth anniversary of my sister’s diagnosis is in six weeks. I still don’t know it all, but I’ve managed to learn a few things in the past six years:

  • The secret to life isn’t waiting for the storm to pass; it’s learning to dance in the rain (borrowed from Cindy Smith, who lost her son to infantile Batten disease but never lost her resolve against the monster that robbed her).
  • Even the strongest storms are followed by rays of sunlight, however fleeting.
  • People – really GOOD people – provide shelter from the storms when the rain beats down and the punishing winds grow unbearable.

I am incredibly grateful for the GOOD people in my life – the people who’ve dared to believe with us. Without them, we’d be lost.

Laura and Taylor

Exercise 6

Published: June 10, 2012  ~   0
By Laura Edwards

I found a bunch of old creative writing assignments in a notebook while cleaning last week.

During my sophomore year of college, I started my intermediate fiction writing class with a prompt and 30 minutes to write. I don’t remember the prompt for “Exercise 6,” the first half of which is included below, but I’m not sure that much matters.

Mom and Taylor under the counter

When I was sixteen years old, my mother had a little girl. She and Dad named her Anna Taylor after my great-grandmothers and decided to call her Taylor. Mom and Dad hadn’t planned the pregnancy; it was a “surprise.”

It took a long time getting used to seeing Mom in maternity clothes. Mom has much better taste in clothes than I do, and she sure has the looks to go with it. She was a beauty queen in college, but in the classic pretty sort of way, not in the ditzy “I’m easy” kind of way. She was also like the most well-respected person in all of Charlotte because she headed up every volunteer organization she ever joined. She gave all the inner-city kids hope and kept the symphony from going broke. She even got the meet the President of the United States once. Too many people were counting on her; she was way too busy to have a baby.

Mom told me that she was pregnant one day when I came home from school. I was a fifteen-year-old sophomore, and she was forty. She was sitting cross-legged on the carpeted floor of her walk-in closet rummaging through some old photographs when she must have heard me come in.

“Hi, sweetheart,” she called. “Do you think you could come here for a second?”

I dropped my backpack in the front hall and trotted upstairs.

She asked me how my day had been, as usual. I told her it had been long, as usual. Then she just came out and said it. No buildup or anything.

“I’m pregnant, Laura.”

At first, I thought she was joking. I kept waiting for the punch line, but she just sat there, her eyes searching mine. And then: “I’m due in August.” She was in gray leggings and an old sweatshirt, and a headband held her short blonde hair out of her eyes. My mother was beautiful, even in her housecleaning outfit. I was only five when my little brother was born, but my memory was pretty clear: he was born in the summer and she was hot and miserable and worn out and the ’80s maternity clothes were too ugly for her classy looks.

I still don’t know whether I was hurt, or sad, or mad, or what. It was all just too weird. I ran out of the room and didn’t speak to her for the rest of the afternoon. Better to remain silent than to say the wrong thing and hurt her feelings. It was rainy and cold outside, and I put on my headphones and my Nikes and sprinted the two miles to my best friend’s house to cry to HER in HER closet. It was so cold, the tears froze on my face as I ran. It wasn’t fair.

Often, we don’t know what we have until we’re in danger of losing it.

Come on Eileen

Published: May 25, 2012  ~   0
By Laura Edwards

soccer teammatesI had my nails done on my way home from the office this afternoon. A local station played on an unseen radio in the otherwise strangely quiet salon. Between my pedicure and manicure, the station played the song “Come on Eileen,” released by the Dexys Midnight Runners in the summer of ’82, when I was three months old. As the first notes reached my ears, I immediately thought of one of my best friends from high school, Allison. Allison and I played on the same school and select soccer teams for six years. Our high school varsity team put together a playlist for pre-game warm-ups on the field for all of the home games each spring. Allison LOVED ’80s music, and she’s the only person I ever met who could get psyched up for a game by listening to a song like “Come on Eileen.” I still can’t figure it out, but hearing the song today made me smile just the same.

Taylor’s eighth grade year is complete. If life had turned out differently, my little sister would be a rising freshman, her whole life still ahead of her. She might have been on the field for select soccer team tryouts this summer or in the football stadium with a couple of pom poms this fall. But instead, Taylor will not be with her classmates – her friends – when they enter high school in August.

At Taylor’s age, I didn’t have many worries – not real ones, anyway. When most of my middle school friends when to the rival high school, I worried about making new ones. I wanted straight As, not As and Bs. I desperately wanted to impress my select soccer coach in our twice-weekly practices so he’d give me lots of playing time on Saturdays and Sundays. I wanted a “steady” boyfriend, or at least a date.

Taylor doesn’t have time to worry about any of those things. She’s fighting for her life. And I HATE that. I lost a lot of sleep over a lot of frivolous things during my teen years. Then, I turned around and spent a good part of my 20s fighting tooth and nail to give my little sister – and every other kid like her – a shot. Not at making straight As, or becoming a star athlete, or dating the homecoming king or queen. A shot at LIFE, whatever it might hold. That’s all.

My little sister is beautiful. I love her just for who she is. And I HATE Batten disease.

The Sun Still Rises

Published: May 21, 2012  ~   2
By Laura Edwards

My family just returned from a too-short vacation on the South Carolina coast. We shared three wonderful days throughout which the beauty of long walks at low tide, playing catch and eating hushpuppies and ice cream cones outshone the ugliness of Batten disease.

At the end of the third and final evening, after a good-natured but protracted Scrabble battle, we all sank into our beds much too late. Just a few hours later, in the dead of night, my mom’s cell phone rang. As we awakened one by one and struggled to comprehend the information the caller shared, our beautiful weekend dissolved.

We did not return to bed that night. Several hours later, I floated out to the balcony of our beachfront condo; my legs felt as though they were not my own. At the very moment in which I leaned on the railing and exhaled, a pinpoint of light appeared on the eastern horizon. I stood, transfixed, and watched as invisible hands lifted a glowing disc of fire into the blue-gray sky and chased the darkness away.

As beautiful as that sunrise was, I would have missed it 1,000 times for the chance to erase the event that precipitated that phone call. But the sun still rises, no matter what happens while it is away. Every morning, it arrives, regardless of the forecast. And I know that no matter how desperate our situation becomes as time goes on, I can’t ever stop believing in our ability to find beauty among all that ugliness.

sunrise