Petals Off a Rose

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 six-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

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 was feeling mellow. It felt a little too 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, could play 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 was 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, N.C., 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 mph 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 was able to see that the smile never left her face. And later, after we'd climbed the 90 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 phased 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.