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.