Never Forget

By Laura Edwards

On the morning of Sept. 11, 2001, I sat in a poetry writing class at the University of North Carolina as fiery, unspeakable events unfolded in New York City, Arlington, VA and rural Pennsylvania. None of us had smart phones in those days, so when our teacher dismissed us, I walked outside and headed for my next class just as I would have done on any normal Tuesday. At the time, I didn’t notice the deserted quad, normally bustling with students at that time of morning.

When I climbed the steps of the journalism school and walked inside, I found what appeared to be the entire student body, crammed into the building lobby but yet strangely silent. They all stood frozen, their eyes transfixed on the journalism school’s large projector TV screen, where two commercial jets crashed into the twin towers of the World Trade Center, again…and again…and again.

I remember when our professor’s voice broke the silence to announce that class was cancelled. But I don’t remember the rest of those kids clearing out of the building. At some point, I did float out of that lobby alone, away from those terrible images and onto the steps of the journalism school, where I found the quad deserted for the second time in one day. My body, guided by some power other than my own, eased down into a sitting position, at which point my 19-year-old lungs breathed in the crisp, clean air of a late summer day on an American college campus, and my innocent eyes drank in the image of an unmarred blue sky dotted only by the soaring, leafy green treetops that watched over bright minds and moonlit strolls and games of Frisbee.

In those moments, on that impossibly beautiful day, I realized our world would never again be the same.

On the morning of July 24, 2006, I sat at my desk at a hospital in Charlotte, NC – eight months into my new job and one month into my marriage to my high school sweetheart. It was a hot but beautiful day, and everything, so far at least, had fallen into place for me. My world overflowed with happiness and possibility.

When my phone rang a few minutes after 10 a.m. – about the same time I learned of the 9/11 attacks – I heard the phrase “neuronal ceroid lipofuscinosis” for the first time – and my world changed forever.

My parents live eight miles from the hospital. I climbed behind the wheel of my car shortly after taking that call, but I don’t remember a single moment of the drive. Somehow, a force from some deep, unknown place guided me home, where I was most needed.

I do, however, remember every single moment from the rest of that fateful day.

The tear-soaked embrace in the floor of my parents’ bedroom.

Seeing my little sister – and feeling alternately overjoyed and crushed knowing she was completely unaware of the deadly disease within her – when we picked her up for her therapy appointment.

Building matching teddy bears with Taylor at the Build-a-Bear Workshop, making a wish for her life, stuffing it deep into the bear before sewing it up tightly…and not feeling silly at all.

It’s amazing how, in a matter of seconds, our lives can transform from being buoyed by hope and joy to being warped by pain and the pure cruelty of fate. It’s amazing how quickly our concept of what’s most important can change.

Today and every day, I remember those who lost their lives on 9/11 and those whose lives have been impacted by the tragedy. I am grateful for all those who make it possible for us to feel safe. And though the news clippings may fade, the memorial crowds may shrink and the stories may become more few and far between, I will never forget.

Today and every day, I fight my own battle for my little sister, in hopes that one day, the worlds of children like her and families like mine will not be shattered in a single moment. And though my body may grow tired and – yes – I may lose her – I will NEVER FORGET.

Live Every Day

By Laura Edwards

Twin TowersTen years ago today, terrorists flew four planes into the towers of the World Trade Center, the Pentagon, and the Pennsylvania woods a short time before I walked into my poetry writing class at the University of North Carolina. Afterward, I walked across an eerily calm quad, up the steps of the School of Journalism building and into a sea of students crowded around an enormous TV screen in the lobby. I watched with the others as the planes’ fiery connection with the Twin Towers played over and over again. I remained after our professor canceled class and all of the other students dissipated. I walked outside and sat, alone, on the stately building’s silent front steps under the deepest, most perfect blue sky I had ever seen. And, just weeks into my sophomore year of college, I realized that my life – indeed, the lives of all Americans – would never quite be the same – ever again.

I’ve often thought about the people who lost their lives on that fateful day – and all of the people they left behind. My husband is a native of Queens, NY and the product of families that immigrated from Ireland and Italy in search of  better opportunities in the Land of the Free. Thankfully, all of my husband’s relatives and friends still in the city were spared; his mother’s twin brother, an accountant for the NYPD who was closest to the tragedy that day, felt the ground shake under his desk at One Police Plaza but made it out without a scratch.

I’ve often thought about how very normal that morning must have felt for the majority of the people who lost their lives in the attacks. How likely none of them imagined the goodbye kiss they gave their spouse, or bear hug they gave their kids, or perfect bagel and cream cheese from the corner deli that they ate on the run, would be their last.

I remember how normal the morning of Taylor’s diagnosis felt to everyone who loves her – every minute leading up to the life-changing news.  And I struggle to recall how I spent the previous day – if I valued what I thought I had – a beautiful, smart, sweet, perfectly healthy little sister – as much as I should have.

There will never be another 9/11/01. I will never have another sibling diagnosed with Batten disease. Nonetheless, we have to cherish what we have and never, ever take the people we love for granted. No matter what, we have to live every day.

The Little Things

By Laura Edwards

Taylor, Mom and I are on the South Carolina coast enjoying a few days’ respite.

I used to wonder if there were more Bargain Beachwears and cheesy Putt-Putts than grains of sand at this oceanic collection of high-rise condos and tourist traps. My grandfather loved this place because he was a golfer, and the Grand Strand is a golfer’s paradise. In a single day, you can play nine holes, eat lunch and dessert at Greg Norman’s restaurant, play the back nine and eat overpriced seafood at a different restaurant for dinner, no problem. My grandfather passed away one chilly weekend in early December when I was fifteen and playing in a soccer tournament in Athens, Georgia, but we still come down here. If we come by way of SC 9 (I call it “Back Road 9,” and not affectionately, either), we pass by Tony’s Restaurant, which serves great Italian fare and is not a chain like its neighbor, Carrabba’s. Granddaddy hated the smell of marinara sauce and wouldn’t have pizza or pasta in his house, even when my dad and his brothers and sister were growing up. But I love Italian, so every summer when we came down, Granddaddy would make a reservation for dinner at Tony’s one night. It was a little thing, but it made me feel special nonetheless.

We’ve been here almost 24 hours now, and the worries we left behind in Charlotte already feel a world away. We made it out to the beach late-morning and just sat watching the ocean with our toes in the cool sand for awhile. Then, we played catch until T announced that she was ready for lunch. She’s pretty good at catch – you just have to give her a heads up before you throw the ball and talk to her before she throws it back so she can locate you. When the girls went upstairs, I went for a run on my own. The people are more scattered this time of year, so the beach doesn’t resemble a mosh pit. I was able to find a good lane right above the water line, where the sand’s only slightly wet and not too soft, and after a few minutes, I turned off my iPod so I could listen to the waves and the occasional seagull. It was the most therapeutic run I’ve had in weeks.

Though I packed enough clothes to stay two weeks without ever doing a load of laundry, I forgot some key items – I always do – so after watching my Heels get a decisive win in the first round of the NCAA tournament sans ACC POY Ty Lawson (my mom, who doesn’t follow sports at all, now calls him “The Toe”), I decided to walk up to the CVS on the main road. Mom wanted to get a walk in, so we convinced T to tag along by promising that she could pick something out once we got there. We walked three abreast to the drugstore and perused the aisles, discussing the merits of Maybelline vs. L’Oreal mascara and ways to get my feet sandal-ready (soccer and running take a toll on my feet, which aren’t pretty to begin with). Meanwhile, T decided she needed a mirror for her purse and lip gloss. On the way home, we didn’t make it one block before T decided she just couldn’t wait to apply her new lip gloss, to which I pointed out to Mom that it was a good thing at least one of her girls turned out girly! The only thing I applied to my lips at age ten was Chapstick.

So here we are now, enjoying an excitement-free night in the condo. T’s retreated to her room to watch a DVD, Mom’s prepping for T’s upcoming school presentation on Helen Keller, and I’m glued to the TV for the night games (currently, I’m watching Clemson lose to Michigan). I realized a long time ago that I don’t need the kind of manufactured fun found in excess at North Myrtle Beach to, well, have fun. The last couple of years of our lives have only reinforced that.

I’ll always try to be honest here – so I’ll say that I live in constant fear of what tomorrow may bring (or rather, what Batten disease may bring tomorrow). So, just as countless others who, like me, dearly love someone who is facing a life-threatening disease, I have many things that I want to do with my sister, and I always feel as though I can’t do them quickly enough. My sister once said she wanted to go to Hawaii; I want to take her to Hawaii. She is a Disney fanatic; we took her to Disney World before she was diagnosed with Batten disease, when we still believed she was only losing her vision; she wants to see the Jonas Brothers on their world tour; I am disappointed that they are not coming to Charlotte. But what I have to remember – what all of us have to remember – is the joy we can extract from the simplest of activities, like our impromptu game of catch on the beach or our girls’ night at CVS. As much as I want T to have happy memories, I’m not convinced that we have to have countless so-called exciting adventures for that to be possible. I want her to remember the fun time we all shared at Disney World, but I also want her to remember – and I want to remember as well – the times we’ve spent snuggling on the couch or sharing an $11 cheese pizza, drinking Diet Cokes through straws and talking about boys and clothes, as we did when I took her on a “date” one night week before last. Even if we could afford all of the adventures, sometimes I just want to enjoy my sister’s presence without it being overshadowed by the experience or the landscape around us. My grandparents took me on an amazing trip to New York City when I was eight years old; we stayed in the Hilton, rode in a stretch limo all over Manhattan, went to fancy restaurants and museums and the World Trade Center and FAO Schwartz, but that trip is not what I remember most about my relationship with my Granddaddy Parks. No, what I remember the most is watching Winnie-the-Pooh together in the TV room just down the hall from where I sit now – and those dinners at Tony’s.