Thursday, July 21, 2011

2,500 Laps: One Month Later

Since my last update re: my quest to swim 2,500 laps in 132 days, I've met Noah Coughlan (twice), graduated from the walking boot that put me in the pool in the first place and notched another 120 laps. And even though I now have my doctor's permission to do weight-bearing exercises, I'm going to finish what I started. I have till October 29 to swim the last 2,020 laps; considering all of the conflicts I have between now and then, including another surgery on my twice-broken nose that will sideline me for at least a week, it won't be easy. But Noah ran through thunderstorms and soaring temperatures; he ran from vicious dogs, through blisters and scrapes and a bout with food poisoning; he ran at all hours of the day and night to meet his mileage goals. So tonight, as he continues his long drive home to northern California, though a big part of me would rather curl up with a good book, I'll head to the pool. Because that's what Noah would do.

When you get a chance, please watch this video. It beautifully captures the spirit of the last two days of Noah's 132-day run. Keep an eye out for my little sister toward the end, standing in a group of kids with Noah on the beach that served as the finish line for one of the most inspiring and most physically demanding feats ever achieved by one person. Can't find Taylor? As usual, she's the one in pink. :) Watch the Video

Tuesday, July 12, 2011

The Work of His Angel, Complete

This past Saturday afternoon, I stood on the beach in Jacksonville, FL, under a threatening sky of quilted purples and grays and deep blues, with the Atlantic Ocean at my back and an entire country before me. There, I watched as Noah Coughlan led a pack of runners through the parking lot and onto the sand for the last 50 yards of a 2,464.18-mile journey that began in Oceanside, CA 132 days earlier, on February 28 - fittingly, World Rare Disease Day. The other runners pulled up at the spot where the waves lapped against the shore, but Noah ran into the surf, shoes and all, overcome with emotion and exhaustion and enormous energy all at the same time.

I won't even pretend I have the talent to find words that could possibly capture the grandeur of the gift Noah gave families like mine. All along, he meant to tell our story to the rest of the world. In the process, he carried me, and undoubtedly others, out of the dark world of Batten disease and into the light. At times this year, I've wanted to quit. My sister isn't well. The little girl I fell in love with is still in there, but Batten disease casts a long shadow. With each month that goes by, her light burns a little less brightly. On July 24 - just 12 days from now - it will be five years since the day a geneticist told my parents to go home and love her; that she would die young. Those words, and the pages and pages of Google results for 'Batten disease' that corroborated them, seemed so hard to believe then. Five years later, the cold, cruel reality of Batten disease has hardened in me.

As I watched Noah wade into the ocean, however, something washed over me, a rhythmical, spiritual feeling unlike anything I'd ever experienced, and I knew at that moment that a miracle had unfolded before my very eyes.

I wouldn't necessarily consider myself superstitious, but I do believe that God works in mysterious ways. In the aftermath of Noah's finish, the clouds at our backs grew darker and darker, but the sky above the ocean remained astonishingly clear. It wasn't until much later that those clouds finally burst apart and rained down upon us, the work of His angel - for now - complete.

Wednesday, July 6, 2011

2,500 Laps: Two Weeks In

Just a quick update re: my quest to swim 2,500 laps in 132 days in honor of Noah Coughlan's cross-country run for kids with Batten disease: over the first 17 days, I've only been able to make it to the pool five times, but the good news is that those five swims added up to 360 laps! Life makes it tough to commit to something every day, which makes Noah's achievement that much more powerful. He's one of my heroes, and I can't wait to meet him in person.

As a friendly reminder, if you'd like to support my quest to swim 2,500 laps with a gift to Taylor's Tale, visit and click on the 'Donate' button in the sidebar on the left. If you have any questions about this, please let me know! Thanks in advance for your support.

More to come soon...

Monday, July 4, 2011

A Timely Message

The road has been more difficult than usual lately. Somehow, I think I was meant to find the following quote, printed on cardstock and slipped in among spiral notebooks and unread mail on the desk in my parents' kitchen tonight:

"I believe life is constantly testing us for our level of commitment, and life's greatest rewards are reserved for those who demonstrate a never ending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams from those who live in regret." --Anthony Robbins