Rain from a Blue Sky

Published: September 8, 2010  ~   0
By Laura Edwards

I have to begin this post by saying ‘thank you’ to my Uncle David and Aunt Holly, who just hosted us at their house on glittering Smith Mountain Lake in Virginia for a quick Labor Day trip. The escape didn’t come a moment too soon for any of us, and under a flawless blue sky by day and velvet canvas spattered with stars by night, I, for one, enjoyed two of the happiest days I’ve had in a long, long time.

I started this blog with the intent to share stories about my sister, Taylor, Batten disease and Taylor’s Tale, the non-profit organization we founded to fight it. Even now, several years later, I continue to be amazed at the sorts of experiences that move me to log in to the blog site and write. In the interest of full disclosure, I will say that those experiences have, at times, suffered a drought as the disease has marched on in my sister. She is quieter, more reserved these days; completely blind instead of mostly blind; dances and talks less. I tell myself that part of this story is her age – in my experience, one of the hardest for a girl. But I know that I would be lying to myself if I didn’t attribute much of the sense of loss I feel these days to the disease.
I would also be lying if my blogs were all doom and gloom, my words painting our lives as all bad.

My current favorite quote was shared with me by Cindy Smith, mother of Brandon, who lost his life to Batten disease last fall:

“Life is not waiting for the storm to pass. It’s learning to dance in the rain.”

I never dreamed that 16 words could mean so much. These words light the way when my path becomes dark; they help me smile when all I want to do is cry. What better way to live our lives on this earth – whether we are stuck in a hurricane or a gentle spring rain? When I forget how to dance, I imagine myself running barefoot through sideways rain, my eyes squeezed shut and a big grin plastered across my face.
Again, in the interest of being honest here, I won’t try to convince myself that Taylor enjoyed our time at the lake in the same way that any of the rest of us did – from my parents and David and Holly on down to my little cousins and my husband and brother and myself. When we took the boat out late Sunday afternoon, she couldn’t see the green mountain rising out of the sparkling clear water to touch the perfect sky. When John caught a huge carp, she likely heard its big body flopping against the dock but will never know what it looked like. When my cousins set off by themselves in the kayak to paddle around the cove, T couldn’t join them.
T did, however, enjoy curling up with her Lion King soundtrack and an oatmeal cookie on the dock. When she snuggled up close to Mom in the boat and let the wind blow through her hair, she smiled. When John took Taylor and me tubing, she screamed roller coaster screams and implored him to go faster. Though David and Holly’s dock is near the back of the cove, Dad told us T’s yelps of joy reached them all the way from out in the channel. And, best of all, when Stephen and I sandwiched T between us on the supercharged Sea-Doo and I took them both for a wild ride, she never once asked me to slow down. Her fingers gripped my life vest a little bit tighter with each bump and jolt even as she threw her head back and laughed the kind of laugh that may very well add years to my life every time one reaches my ears. Near the end of the ride, I followed a boat back to our cove, criss-crossing its wake in an effort to feel those little fingers grip me even more tightly. And then, we were suspended in mid-air, and in a single instant frozen in time, my sister yelled, “Woo hoo!” That was when I knew for sure that in that moment at least, under that perfect blue sky, we were dancing in the rain.

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.