New Blog Site

Write the Happy Ending has moved! You can find it at www.writethehappyending.com. This will be my last post here, so please bookmark the new site. Thank you, as always, for reading!

2,500 Laps: Two Months In

Just a quick update on my quest to swim 2,500 laps in 132 days: yesterday afternoon, I hit the 870-lap mark after a quick 70-lap swim. I gave myself 132 days to swim 2,500 laps in honor of Noah Coughlan's cross-country run, and after 63 days - meaning a little less than halfway through - I'm only slightly better than a third of the way to my goal. I was out of town a LOT in July and August, however, and I hope to make up a lot of ground while I'm home over the next couple of weeks. The only speed bump may be a minor surgery scheduled for early September. I'm making a second trip to the OR to finish fixing my nose, which I broke badly playing soccer last year, so swimming probably won't be an option for a week or so.

On another note, my physical therapist gave me some great news on Wednesday. He thinks I'll be able to run in about a month - something I haven't been able to do since I injured my Achilles (playing soccer, of course!) on April 14. I'm committed to this swimming thing, though - for Taylor as well as my long-term health. I've just got to stay focused. 1,630 laps to go...

As a friendly reminder, if you'd like to make a pledge toward my 2,500-lap quest for Taylor and others like her, simply visit the Miles to a Miracle website and click on the 'DONATE' button on the left. If you have any questions, please let me know. Thanks, as always, for your support!

Grace

On October 4, 1999, I arrived home from school to find an envelope addressed to me in the mailbox. My grandmother's familiar cursive hand graced the outside of the envelope and filled the card inside, spilling onto a separate piece of stationary. Also tucked in the envelope was a newspaper clipping from the Raleigh News & Observer. The photo depicted an NC State University vet student comforting a dog separated from its owners by Hurricane Floyd, a category two storm when it flooded eastern North Carolina that September.

Because the photo did not include a caption, Grandma Kathryn explained its significance in her note. In doing so, she shared one of her many stories with me. She was a storyteller in the purest sense of the word; she knew how to give her words life beyond the page on which they were written or the air in which they were spoken, and in doing so, she always imparted some piece of great wisdom.

"The way people have responded to this situation on the coast has restored my faith in humanity," she wrote near the end of the story. "I was beginning to think no one cared about their neighbors, but that is simply not true. Most of us are basically good, just misguided. Tragedy sometimes brings out the best in people."

Grandma Kathryn and me in June 2006, just three weeks before
my wedding and seven weeks before Taylor's diagnosis.

My grandmother said her faith in humanity had faltered, but I never saw that - not in 1999, and certainly not now. She devoted her entire life to those she loved or those who needed her, and she never expected anything in return. She became a mother at 16, and her three children - and the grandchildren that followed later - were her life. She always dreamed of becoming a writer but never had the chance to go to college or even finish high school, enrolling in beauty school instead. Decades later, she helped me discover a love for writing and, for many years, helped me find my own words. She is present in the happiest memories from my childhood. I remember lazy summer days on Oak Island, days we took long walks on the beach and looked for shells or sat in a swing on the waterfront in Southport, eating hushpuppies with honey butter and filling stacks of spiral notebooks with poems and short stories; nights we hung a sheet over the bare windows of her house in Raleigh and ate Shake 'N Bake chicken and Kraft macaroni and cheese while we plowed through rented movies stacked two feet high.

Life was never easy for Grandma Kathryn, but it was, for the most part, happy. And she did everything in her power to ensure that her children and children's children had happiness.

I will never forget my freshman year of college. I began and ended my college career at UNC-Chapel Hill, but I spent the spring semester of my first year at NC State. I became so deeply depressed in the fall that I wasn't sure I'd be able to make it till Christmas. I often wore sunglasses to class - even on the cloudiest of days - to hide my tears. Some nights were particularly bad, and on those nights, my grandparents climbed in the car and drove from Wake Forest, just north of Raleigh, the 40 or so miles to my dorm to pick me up and take me back to their house, where I'd complete my homework assignments on the family room couch while my grandmother made my favorite foods for dinner. After dinner, she'd sometimes join me on the couch and rub my head till I fell asleep, as she did when I was a little girl and suffered from terrible migraines. The next day, if needed, she'd adjust her schedule at the beauty shop so that she could drive me back to Chapel Hill in time for school; I never missed a class. In December, when final grades were posted, I made the dean's list. Meanwhile, NC State accepted my transfer application, so in January, I moved in with my grandparents in Wake Forest and began attending classes in Raleigh.

One weekend in February, I returned home to Charlotte to visit my family and John. On Sunday, just a few hours before I had to make the drive back to Raleigh for class the next day, I went for a run on the outdoor track at the YMCA. The sky was a clear, brilliant blue, and the air was so cold that it hurt my lungs. As I sprinted the length of the last straightaway, my lungs burning, I suddenly realized that I wanted to go back to Chapel Hill for my sophomore year, mostly because I didn't want to go through the rest of my life believing that I had failed at something.

I re-enrolled at UNC that fall, just as I had decided on that sunny, cold day in February. I had three amazing years there and never once regretted my decision to return. However, I also never forgot the four months I lived with my grandparents and attended NC State. Though forged by great pain, they also brought happiness.

More than seven years after I lived with my grandparents, my grandmother fell and broke her hip. She was admitted to a hospital near her home on October 1, 2008, and later transferred to the hospital in Greensboro where my uncle is a surgeon. She remained there until October 31 - her 68th birthday. During that month, her world - and ours - came crashing down. Though she had to have surgery to repair the broken hip, the injury itself didn't necessitate a protracted hospital stay. It was the frightening symptoms that emerged during her time there - eventually diagnosed as Lewy body dementia - that kept her there for so long.

Now, when we look back on the months leading up to the diagnosis, we recognize the signs. At the time, we attributed Grandma Kathryn's occasional odd comments and vacant facial expressions to depression stemming from the loss of her own mother and Taylor's Batten disease diagnosis. As I said, my grandmother's children and grandchildren are everything to her - and the thought of Taylor dying young was literally killing my grandmother. To this day, a large part of me believes that her own disease intensified and perhaps even arrived years prematurely due to her heartbreak over Taylor's illness.

Lewy body dementia, like Batten disease, is ugly. It strips people of their faculties, but also their personalities. Lewy body has spared very little of my grandmother just three years removed from the diagnosis. Every time I see her or talk to her, I struggle to avoid crying. My grandmother, who taught me to love books, will never read again. My grandmother, whose cards I eagerly awaited to receive in the mail, will never write again.

Because the grandmother I knew is no longer with us, I cherish pieces of her - like the letter she sent me in the fall of 1999 - more than I ever imagined I would, just as I never imagined the last days of her beautiful life would be spent this way. She taught me so much over the years. She taught me not only how to write, but also how to love; she taught me to figure out what I want in life and to never, ever give up in my efforts to obtain it. She taught me about the things that are important, and the things that are not.

Now, facing the prospect of losing my grandmother and my little sister, I can only hope that I inherited their ability to see the best in every situation, their great love for others and their indomitable strength in the face of adversity. And, if I should ever lose my way, I will need only to read this, the note tucked into that card I received in the mail so long ago:

Dear Laura,

I want to tell you again how much I like and admire who you are. You are realizing what is important. Not soccer, joyous though it is for a short time, but relationships, your values that keep you head and shoulders above the crowd. The people who love you, unconditionally, no questions asked. Friends you will remember years from now. Some little moment that seemed unimportant at the time, but the memory lingers on.

Enjoy each day. You can only live this part of your life one time.

You said that adversity makes you strong. That is true. Pain and sorrow make you strong also, but the thing that gives you the most strength, the staying power to stand alone, is love.

Now it is the love of family and a special friend or two. One day soon it will be someone who loves you for the person you are, who knows all your secrets, and loves you all the more for them.

You are preparing for that time now and he will be a lucky man because you have a strong character. You are kind, intelligent, determined. You don't quit.

When I think of you, I think of the term "Grace under pressure."

You are the person I always hoped you would be and I love you very much.

When you go to college, you will be pushed and pulled to do things that you know in your heart are wrong. That is when this inner strength and character you have so painfully acquired will be so important. That is "class." Not money, not prestige, not social position.

Just simply, who you are.

Love,

Grandmama

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

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.

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 www.taylorstale.com/miles 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...

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