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.

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

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.