Wednesday, September 29, 2010

Exploring Fairyland on Wheels

On Monday, after three nights at a wonderfully remote lodge in the Shenandoah Valley of Virginia, John and I realized we weren't ready to go home and so headed two hours northeast - away from our house in Charlotte - to check out some of the caverns in the area.

We enjoyed the first set, Endless Caverns; my only regret leaving was that the third (lowest) level of the cave was not open to the public. I'm that cat whose curiosity will get it killed one day, and hearing the tour guide talk about the closed-off portion of the cave was rough.

The second set, Luray Caverns, required a 20-minute drive up the highway.  A mile before we reached the parking lot entrance, we'd tagged Luray as endlessly more commercialized than Endless. Seedy tourist traps dotted the road, and the caverns themselves accounted for just one of the attractions accessed from the parking lot. We briefly considered nixing Luray for the Skyline Drive in nearby Shenandoah National Park, but in the end, we sucked it up, paid our $46 and joined one of the tour groups in line to receive audio tour headsets like the ones they hand out at Alcatraz.

As soon as we took our first few steps into the underground wonderland, I took in the brick walkways, handrails, audio tour signs and yards upon yards of wires leading to harsh floodlamps in the eons-old rock. As I silently cursed the ultra-modernization of the caverns themselves and imagined myself instead exploring a wild, undeveloped cave, I noticed that a young woman in a wheelchair and her parents had joined our group. Before I had time to wonder how she would be able to navigate the steep stairs we had just descended, two teenaged guides came up behind her and pushed a hidden button that activated a sophisticated lift system. The guides negotiated with the wheelchair until its owner was first safely on the lift and then, just moments later, on the smooth, gently sloped brick walkway that snaked deeper into the cave. For the duration of the 75-minute tour, the woman and her parents brought up the rear but never kept the rest of us waiting. By the time we climbed back up those stairs toward daylight, I was glad John and I had chosen to stay and thankful, too, that the woman in the wheelchair had been given the chance to see the caverns, just like us.

Back when Taylor first became visually impaired, I quickly grew very aware of physically handicapped people around me as well as the opportunities and assistance (or lack thereof) afforded to them in public places. I never really thought about the mechanics of finding the right button in the elevator or distinguishing the ladies' room from the men's until my sister could no longer read the signs. Now, I'm hypersensitive of those mechanics as well as the feelings of people like T, and I marvel at the lack of sensitivity some others show toward them. Blindness is T's most significant handicap today, but I know in my heart that unless we find a cure quickly, she will eventually join many of her fellow Batten disease children in spending most of her days in a wheelchair. And while I initially wrung my hands over the considerable liberties the private owners took with their personal gold mine at Luray Caverns, I know that if my sister could see that underground fairyland, I wouldn't want a steep staircase to stand in her way.

Wednesday, September 22, 2010

When the Clouds Disappear

We take so much for granted in life. Why is it that it often takes losing something (or the prospect of losing it) to realize what we have? I took childhood for granted, and then, one day, I looked in the mirror and discovered that I was all grown up. I treated summers with my (now) husband that way during the four years that we attended different colleges, and every year, right around the time that July changed over to August, it occurred to me that we were about to be apart for another nine months, and I tried to cram an entire relationship into two weeks. Luckily for me, he eventually married me anyway. I treated college that way; I graduated. I took my best friend from college for granted, and now I never see her, even though a mere 150 miles of highway separates us. I know now that while true friendships last forever, time with friends doesn't always survive. I took my grandmother for granted - she was much younger than my friends' grandmothers, and I loved her more than anything, and I thought I'd have her forever. Now, she has a terrible brain disease, and whenever I see her, I want to hold her and never let go and burst into tears at the same time. And I ALWAYS took my little sister for granted, right up until July 24, 2006, when the geneticist told my parents she has a fatal monster called Batten disease. Even now, I struggle to find a balance between spending time with her and trying to save her, much of which I do alone on my laptop while she sits in my parents' house just three miles down the road.

I'm often guilty of taking life itself for granted, no matter how many times I'm reminded of its fragility (by watching people I love suffer or passing by crumpled cars and ambulances and fire trucks on the side of the road). I get into a rhythm. I get up in the morning and, if it's a weekday, float from the kitchen (where the caffeine is), to the shower, to the closet, to rush-hour traffic to, finally, my office. Every night, I sink into bed far too close to the time that I'm scheduled to rise and do it all over again, closing a chapter on another day sans great adventure, with only my dreams to connect me to the whole wide, wonderful world just out of reach. Sometimes, deep down inside, I want to get in my car and drive west or on a plane and fly halfway around the world, just because I can.

I talk about dancing in the rain; but I've gotten perhaps too skilled at knowing when it's raining, something that may have come from sharpening my survival instinct over these past four years of my life laced with sadness. What I don't remind myself often enough is to look UP at that fleeting blue sky whenever the clouds dissapear.

Wednesday, September 15, 2010


It's been a nostalgic week around here.

Friday night, John and I flew through the aisles at Michael's 10 minutes before they closed and made it up to checkout with armfuls of art supplies just as they were locking the front door. We recently dragged out our high school art portfolios and got inspired (to make more art, not take the time to move the enormous portfolios from the office floor back to the closet where they belong). This fall, whenever our interest in the football game on TV is just lukewarm, we'll watch it from the back of our bonus room, where we have a rickety table that wouldn't exactly strike you as a place for art but will become one just the same.

Two days after our adventure at Michael's, the Panthers were down two touchdowns when I heard the piano movers arrive (I wish I could have seen their faces the moment they discovered my mountainous driveway, double-checked the address on the mailbox, realized that yes, that was the house and regret that they weren't charging me a whole lot more money). The grand piano my mom got for her 14th birthday - the one that has resided at my grandmother's house ever since - is now sitting in my great room. It is a resilient instrument, having survived a fire and a couple of moves. It is a beautiful piece of art and deserves to be played by someone who is not 10 years out of practice, which is why I tried to teach myself to sight-read again tonight and unexpectedly played a duet with my dog, Daisy, who isn't used to the piano and, as I just learned, likes to sit behind the bench and bark on the high notes.

After Daisy and I finished our duet tonight, I returned to my laptop and bought tickets to our high school reunion. I don't look all that much different than I did 10 years ago, but somehow, when I wasn't paying attention, I got 10 years older.

I can explain the sudden urge to relearn the piano after all these years, but I can't explain why John and I dug through all of the junk in our storage closet to get to a bunch of drawings/paintings we did in high school, nor can I explain what possessed us to spend all that money on art supplies (money well spent, but why now?). I also can't explain why I sat cross-legged in the floor of our office after dinner tonight, rifling through photos from my Charlotte Soccer Club days, or why I'm listening to Deep Blue Something right now, which hasn't been cool since I was 14 (if it ever was). Maybe I'm running away from the present. After all, it's been raining in my world this week, and for all the optimism I preach in this space, for all that talk about dancing in the rain, a lot of times I just want to crawl into my shell and try in vain to stay dry. My life wasn't perfect before I knew my sister has Batten disease, but it sure was a hell of a lot easier. I only wish I'd known how blessed I was at the time. Don't we all say that at some point in our lives?

Mom, Taylor and I went to the Blumenthal Sunday night to see Mary Poppins. For all the injustices that have been done to T, she's still better at dancing in the rain than her big sister. She couldn't see the coolest parts of the show (when Bert walked up one wall, across the ceiling and down the other wall, and when Mary Poppins floated out over the crowd and glided into one of the balconies), but she still smiled and laughed and had a great time and clapped along with the crowd when the cast sang 'Supercalifragilisticexpialadocious.' T loves theater/ballet/etc. and always has. Even when she was really little, The Nutcracker was one of the highlights of the year for her.

Here is an old picture of T, our brother Stephen and me at one of those Christmas productions when T was a toddler. I realize the picture quality's bad, but does she look happy or what? Back then, I took those moments for granted. Now, I treasure them, partly because I don't have any idea how many more we'll share. I'm already nostalgic for our night at Mary Poppins. I'm nostalgic for the dinner we shared at Jason's Deli two weeks ago. I'm nostalgic for future moments with T, and I hope to God there will be a lot of them.

Tuesday, September 7, 2010

Rain from a Blue Sky

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, Va. for a quick Labor Day trip. The escape didn't come a moment too soon for any of us, and under an unmarred 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 the nonprofit 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 belongs to 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. Cindy's great wisdom lights the way when my path becomes dark; it helps 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 honesty 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, ages 8 and 3, 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.