The Dying of the Light

Published: July 7, 2014 ~ 4

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.

This 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.

High Tide

Published: June 26, 2013 ~ 0

By Laura Edwards

July 4 is next week, and unlike so many years of my childhood, we’ll spend the holiday at home in Charlotte. We used to celebrate Independence Day in the waterfront park of Southport, NC. Every year, we packed a huge picnic and spread our blankets in the grass and stuffed our bellies and stretched out on our backs to watch fireworks in every color of the rainbow light up the black sky over the Cape Fear River. Then, we piled in our car, exhausted but happy, and drove back to our beach house on Oak Island.

We haven’t seen the Southport fireworks in more than 15 years. In that time, my grandparents had to sell the beach house. Marriages ended. Kids went away to college, graduated and got jobs. Weddings happened. We learned that my little sister has Batten disease. My grandmother, an angel on earth and the matriarch of our family, went to heaven this past Christmas Day.

Five or six years after my grandparents built the beach house, the town started to have problems with erosion on the beach. My grandmother once told me that the problem stems from the fact that Oak Island meets the Atlantic Ocean at an odd angle. The cabana at Long Beach just up the street from our house washed away, so the town rebuilt it. If we wanted to take a walk on the beach, we had to time it just right, or else our walk could turn into a swim.

And yet, that sandy finger of land on the coast of North Carolina always held magic for us, even as the forces of nature exerted their will. We loved the new cabana just as much as the old one. We missed having a wide beach, great for long walks and sand dollar hunts and dreaming, but we just pulled our chairs right up to the dunes where the waves couldn’t get us, dug our feet into the thick sand and drank up the sun.

But life is not a beach, and Batten disease is not the ocean.

Will these waves of change keep pounding away until we have nothing left but our memories?

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We 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.

Cape Fear River Sky

Published: July 5, 2012 ~ 2

By Laura Edwards

My grandparents used to own a beach house on Oak Island, a finger of land at the southern tip of North Carolina. Nearly every summer, we spent Fourth of July week on the island; on the Fourth, my family and extended family packed an enormous picnic, piled into cars, drove across the Intracoastal Waterway and its marshy shores and into Southport – a town built where the Cape Fear River meets the Atlantic Ocean. We spread our quilts on the soft grass in front of the pier, watched the boats drift by and filled our bellies. As the evening wore on, the crowd around us on the lawn grew larger. My younger brother and I usually picked our way through the other blankets to the pier to buy snow cones and glow-necklaces before the sun sank beneath the horizon. And when the last rays of sunlight finally faded to darkness, the fireworks began.

My grandparents sold the beach house right around the time Taylor was born. I’ve been back to the island several times since then, and on each visit, I drove past the house. It felt strange seeing someone else’s memories (shells, driftwood), perched on the porch railing. I’ve been back to Southport, but not for the Fourth. In fact, it’s been nearly 15 years since I last saw the sky over the Cape Fear River lit up by sparkling streaks of red, blue, green, purple, orange, yellow, silver and gold. We’ve had to make new memories. But the image of that sky in my mind is just as clear as if I witnessed it yesterday.

Last night, we spent the Fourth of July at my parents’ house, more than 200 miles from our Cape Fear River sky. We had a much smaller crowd and different scenery, but we had amazing food and, afterward, our own fireworks show. 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.

sparklers

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.

Wake

Published: July 9, 2009 ~ 0

By Laura Edwards

I headed to the office before sunrise Monday morning for a meeting. The roads were nearly empty, and even though I’d gotten less than five hours’ sleep, I felt mellow. It seemed a little early for the Coldplay CD in my stereo, so instead, I turned to the local classical station and let the notes of Brahms and Beethoven and Hadyn fill the quiet.

Somewhere between Park South and Selwyn, one particular piece my mom used to play floated over the speakers. I remember hiding on the hardwood stairs leading up to the second floor of my grandparents‘ house many nights after I was supposed to have been asleep and peering through the banister that bordered the living room as she played. My mom, a piano major in college, played beautifully. It’s nearly impossible for a child to remain totally soundless on stairs that aren’t carpeted, even in sock feet, but I was always spellbound.

It’s funny how music can spark the imagination, because as I navigated the roads leading to my office during and after that piece played on the radio, I remembered not only those nights on the stairs, but a whole rush of other memories of times past – of swinging so high the swing set shook and my toes seemed to touch the sky, or those afternoons and evenings I spent stretched out on the floor of my open-air tree house with a spiral notebook, a pen, and the breeze. The just-finished Fourth of July weekend, of course, sparked images of summers at our beach house on Oak Island, NC, and picnics of biscuits and fried chicken and sweet tea on a blanket under the fireworks and the stars just across the Intracoastal in Southport.

T’s illness is a threat to the future, but it can’t touch these happy images of the past. And even as we fight for her life, so we continue to file away great moments – if not entire days – away for later.

We headed up to Smith Mountain Lake in Virginia for the holiday weekend for some much-needed quality time with family. The house on the cove that opens up to the breathtaking view of a green mountain rising up out of the lake is the wooded retreat of my aunt and uncle and their two little girls, my cousins. And for nearly three full days, Batten disease was relegated to the background, and genuine smiles graced the faces of the people I love most.

T is on a drug therapy that doesn’t allow her to swim in the lake, but that didn’t stop her from strapping on a life jacket and climbing aboard one of the Sea-Doos with me after some convincing. I never topped 20 miles per hour for fear of splashing her in the face, but her happiness as we cruised the open waters in front of the cove was palpable. She screamed and squealed almost constantly, but by the grace of the Sea-Doo’s side view mirrors, I could see that the smile never left her face. And later, after we’d climbed the ninety steps from the dock back to the house for the evening, I watched as our cousin, Morgan, played the role of T’s angel. Morgan celebrated her seventh birthday on Sunday and is nearly four years T’s junior but was as good with T as any adult I’ve ever seen. Not once did she ever seem to be fazed by my sister’s blindness. Her compassion and acceptance were gifts of the greatest value.

We’ve returned home to find that, as expected, Batten disease is still a veil over every facet of our lives. I’m re-energized for the fight, though – if only for the promise of even one more day with my sister – her laughs in my ears and her hand curled around mine.