The Dying of the Light

By Laura Edwards

My grandparents used to have a beach house on Oak Island, a finger of land at the southern tip of North Carolina. Nearly every summer, we spent the Fourth of July week on the island; on the Fourth, we packed a huge picnic, piled into cars, drove across the Intracoastal Waterway and into Southport, a charming town raised where the Cape Fear River meets the Atlantic Ocean.

Before reaching the waterfront park, as if we didn’t already have enough food, we stopped at Hardee’s for a southern feast of fried chicken and biscuits and mashed potatoes and gravy and sugary sweet tea.

At the water’s edge, we spread our blankets on the short-clipped grass and stretched out to fill our bellies under a hazy blue sky while the boats drifted by. As the evening wore on, the lawn filled. My brother and I danced through the blankets and chairs clutching soft dollar bills from my Grandma Kathryn. We bought snow cones and glow-necklaces at the pier before the summer sun disappeared and the fireworks lit up the sky.

Time changes us all.

My grandparents had to sell the beach house around the time Taylor was born; it’s been many years since I last saw the Cape Fear River sky lit up by sparkling streaks of red, blue, green, purple, orange, yellow, silver and gold. My grandmother fought a brave battle against Lewy body dementia, but Lewy body dementia always wins; we said goodbye to her on Christmas Day 2012. And my sister, whose bright eyes used to drink in the world and all its beauty, lives in a world of darkness.

fourth of julyThis Fourth of July, John and I invited family and friends to our house to eat burgers and brats and watch the World Cup. Toward the end of the afternoon, my parents and Taylor appeared at the door. My sister has, thankfully, gained weight since her scary stint in the hospital. She looked pretty in her cotton dress, perfect for a summer cookout. She couldn’t eat with us.

After everyone left and the kitchen was clean, John and I piled into the back of my parents’ car and went uptown with them to find a parking lot where we could watch the fireworks shot off from the minor league baseball stadium. The home team’s pitching staff isn’t very good, and the game ran late. We sat in our folding chairs for a long while and talked while we waited for the show. It was unseasonably cool and felt nice, but I missed the salt breeze on my face and the aroma of my Papa Jerry’s bucket of fried chicken, even though I never ate it.

Finally, the fireworks began. I watched in silence next to my sister’s wheelchair. I remembered our own private fireworks show in Mom and Dad’s driveway just two years earlier. That night, Taylor sat in a golf chair and clapped each time Dad shot a Roman candle or bottle rocket into the night. As they exploded over the front yard, I called out the colors, one by one, to my blind sister.

Taylor didn’t clap for the fireworks this time. Instead, I held her hand in its soft purple brace. As the show ended, I savored the warmth of her touch, and I watched the dying of the light.

Full of Wonder

By Laura Edwards

Easter at the beach houseWe spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.


By Laura Edwards

sand dunes

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.

Taylor building sand castles

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.


By Laura Edwards
On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother’s familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

“The way people have responded to this situation on the coast has restored my faith in humanity,” she wrote near the end of the story. “I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people.”

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor’s diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that – not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at sixteen, and her three children – and the grandchildren that followed later – were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake ‘N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children’s children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn’t sure I’d be able to make it till Christmas. I often wore sunglasses to class, even on the cloudiest of days, to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the forty or so miles to my dorm to pick me up and take me back to their house, where I’d complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she’d sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she’d adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when UNC posted final grades, I made the dean’s list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air felt so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn’t want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on Oct. 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until Oct. 31 – her 68th birthday. During that month, her world, and ours, came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn’t necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there, eventually diagnosed as Lewy body dementia, that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn’s occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor’s Batten disease diagnosis. As I said, my grandmother’s children and grandchildren are everything to her – and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor’s illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her – like the letter she sent me in the fall of 1999 – more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don’t quit.

When I think of you, I think of the term “Grace under pressure.”

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is “class.” Not money, not prestige, not social position.

Just simply, who you are.