Thursday, July 30, 2009

A Toast to Taylor - and a Good Friend

My good friend Shannon, a fellow blogger and Taylor's Tale activitist, just posted a great tribute to my sister, our cause and fine wines on her always entertaining (and educational!) food and travel blog, Shananigans. Check it out here. Thank you, Shannon!

Sunday, July 26, 2009

Swine & Cheese

This afternoon/early evening, members of the Beverly Woods East Swim Club and friends raised $1,100 for Batten disease research at Cookout for a Cure, a laid-back affair staged at the pavilion tucked into the trees that ring the pool. The results wouldn't have been possible without the generosity of our chef, Greg Frye (aka Greg's Swine & Cheese), who slow-cooked the meat to perfection over a span of more than eight hours (during which he was visited by a curious raccoon at his backyard pit when most of the nation was sleeping), as well as Ed and Cindy Gash and Kelly and Mike Crum.

Greg engineered a feast of hand-pulled pork barbecue, macaroni and cheese, baked beans and barbecue slaw, plus an assortment of sauces to satisfy both eastern and western BBQ loyalists. In addition to meticulously crafted, authentic North Carolina barbecue, Greg is also well-versed in the arts of lowcountry shrimp boils and hot wings.

To learn more about Greg's Swine & Cheese, email Greg at

Friday, July 24, 2009

There All Along

Today marks the third anniversary of T's Batten disease diagnosis.

My family escaped to the South Carolina coast for a few fleeting days this week. We had perfect weather, but the cotton ball-dotted blue sky and soft breeze couldn't mask the changes that have marked the past several years. My brother, a college senior-to-be, is taller and more serious than he was last summer. The beachfront condo we've inhabited for one or, if we're lucky, several weeks each year since I was six years old, is a little tireder; the sea spray and SPF that rode the wind to the eighth floor and settled as a thick film on the balcony's sliding glass doors to be discovered the night we arrived inspired Windex and paper towels, not weathered charm. My little sister's post-brain surgery hair is more chestnut than golden. Her eyes are unseeing.

Yesterday, our last day, as I soaked up the sun's rays and the pages of my open book fluttered, I drifted away and recalled summers spent lying in the surf as the waves washed over me, imagining that I was shipwrecked, only to return to the present and see T come into view, standing upright as the waves crashed over only her ankles and feet; my sister is on a drug therapy that suppresses her immune system, making ocean water too dangerous for whole days spent tummy-down in the wet sand.

When I was T's age, I used to stand on the very same beach and wonder how many grains of sand made up the vast expanse that stretched all the way to the horizon in either direction. It wasn't until later that I understood just why counting all of them could never be possible.

I won't ever know how many grains of sand make up the beach I've walked for more than 20 years or even a shovelful. I know that some things are not possible.

After I snapped out of my shipwrecked daydream, Mom, T and I walked along the inlet that carves out a crescent swath in the sand within sight of our sea spray and SPF-caked balcony doors. For a reason unknown, I remarked that mole crabs, or sand fleas, seemed to have disappeared from the beach in recent years. I described the animal to T and how Stephen and I used to scoop handfuls of them out of the sand below the tide line. I described their smooth gray shells and squirming legs that searched desperately for sand to burrow into even as you held them up in the air. But to help T understand sand fleas, I really needed to have one.

Without a live model, the subject changed to the inlet's transformation and the apparent struggle of the beach's newest construction to sell units. Some time later, after we'd turned back for home, I looked down and spotted two minuscule pockets of churning sand. I bent over and scooped up a handful of doubtless thousands of grains of wet sand; there, in my palm, were two sand fleas.

Sunday, July 19, 2009

The Fight for a Cure: Another Year of Groundbreaking Research

Last night in St. Louis, Taylor's Tale helped make it possible to award one-year grants to four talented research teams from the University of Texas Southwestern at Dallas (led by Sandra Hofmann, MD, PhD, whose work we've funded for the past two years), Washington University in St. Louis, the University of Missouri and the National Institutes of Health.

These projects will help us move closer to a cure for children with Infantile NCL, the form of Batten disease from which Taylor suffers.

On behalf of Taylor's Tale, I'd like to thank our funding partners in these endeavors: Hayden's Batten Disease Foundation Inc. and the Batten Disease Support and Research Association (BDSRA) North American and Australian chapters.

I also want to thank all of our donors, who've given me the gift of hope and a very real belief in our ability to write the happy ending for which we've been desperately searching since July 24, 2006 - the day of T's diagnosis. That day, my family cried in each other's arms, but before the tears dried, we'd gathered the resolve to fight for a little girl who deserves nothing less. We couldn't do it without you; love to you all.

Wednesday, July 8, 2009


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.

Thursday, July 2, 2009

I'm ready to make miracles.