Saturday, August 28, 2010

Miles for T

Late this past spring, I was running in my neighborhood when an idea popped into my head. The idea didn't have any shape or sense of order to speak of - when I climbed up my mountainous driveway at the end of my run, all I knew was that I wanted to use running as a way to fight Batten disease. Running is one of my purest forms of therapy, and it's also central to what many people have said is the most inspiring of many inspiring stories about Taylor. Without the advantage of sight but with the blessings of her own heart and a big-hearted friend, my sister completed two 5Ks when she was enrolled in the Girls on the Run program at her school.

Three months later, with the help of some very good friends of my own, my hodgepodge idea is becoming a reality. About a month from now, Taylor's Tale will unveil an exciting new campaign that will allow us to touch every part of the globe that has Internet access. And no matter how you prefer to stay active - by running, swimming, cycling, hiking, walking - anything that allows you to to log miles - you'll be able to do what you love in honor of kids all over the world who are fighting Batten disease. Along the way, you'll have the opportunity to share your own stories through words, pictures and videos - and connect with others logging miles, from the tree-lined paths of Charlotte, N.C., to Sioux Falls, S.D., to the foggy streets of London and even to faraway places like Australia and New Zealand (these are just some of the locales of friends who have already made a pledge to join our team!).

I'm so excited about this campaign that I'm having to work really, really hard to keep most of the details under wraps. With that said, it's probably best if I wrap up this particular post for now, but please stay tuned, as the launch will happen in the very near future. Thanks for all that you do to help us believe in miracles!

Saturday, August 21, 2010

Cheating Death

I've cheated death more than once.

I suffered an injury at birth and got the gift of an intracranial shunt. Doctors told my dazed first-time parents - both younger at the time than I am today - that I'd be severely handicapped if I pulled through. I was in the hospital for a long time. Then, I got a staph infection. The shunt had to come out. And then - miraculously and still without any logical explanation nearly 30 years later, I got better. I no longer needed the shunt. I was healed. Today, all that remains is a small lump on the back of my skull, a tiny white scar on my belly and, occasionally, a headache so severe that I'm almost driven to put an end to my misery.

Less than three years after I kissed my shunt goodbye, I cheated death again. I was in the basement of my grandparents' house, where my grandfather kept a pinball machine and two classic arcade games that towered over me at the time. I don't remember any of what happened, but as the story goes, I dragged a chair over to one of the arcade games, presumably to play, and knocked over a can of gasoline that my grandfather had brought into his house for some unfathomable reason. The fumes from the gasoline ran across the floor and straight to the furnace, where they ignited. My uncle was cooking steaks on the grill outside when he realized the house was on fire, ran inside, scooped me up and ran back out. The entire lower level of the house had to be rebuilt, but I came out of the incident unscathed, despite the fact that I had been mere feet away from the furnace when it burst into flames. The other notable survivor of the fire? My mother's wedding dress, hermetically sealed inside a cardboard box in - you guessed it - the basement. The same dress I wore on my own wedding day four years ago.

Fast-forward another two years. Mom and her best friend took me to a pool with a high dive on a hot summer day. I was maybe five and had never been on a high dive before. I made the trek from our lounge chairs alone and climbed the huge ladder. When I reached the top rung, I called out to Mom and her friend on the opposite end of the pool. I hadn't asked for permission to try out the high dive but figured that at that point, it was too late for anyone to stop me. I swayed back and forth as I raised my voice louder and louder to get Mom's attention. The wet railings slipped through my tiny clenched fingers. As I fell backward into a tall span of nothingness, time stood still, and I actually saw my mom's visor fly off her head as she came toward me in a full sprint. Then, without warning, I hit the concrete back-first with a thwack! I could have broken my back, or my neck, or cracked my skull into a million little pieces. Instead, I just had the wind knocked out of me. After a few minutes, the lifeguard walked me over to a shaded table near the concession stand and brought me a lime sherbet popsicle shaped like a frog and with gumballs for eyes. By the time I'd licked the popsicle stick clean, I'd made a full recovery.

When I was 20, I drove from Chapel Hill to Clemson, S.C. for a weekend-long soccer tournament. We played five or six games - I can't remember for sure - in a 36-hour span. By Sunday night, I was drained. I wasn't sure I'd be able to make it all the way back to Chapel Hill, so I stopped at John's apartment at UNC-Charlotte, walked inside and promptly went to sleep. The next day, Monday, my first class of the day was a creative writing class at 3:30. I slept in and left John's apartment around noon, leaving plenty of time to get back for the class. It was sunny and warm for October. At 1:47 p.m., on a dangerous stretch of highway less than 60 miles from Chapel Hill, I veered off the road to the left and barrelled into a speed limit sign in the middle of an enormous grassy median going around 65 miles per hour. The highway patrolman estimated I was asleep for about a quarter of a mile. If I hadn't hit that speed limit sign, I wouldn't have been jarred awake, and I would have likely continued veering off to the left and into oncoming traffic on another highway. I'm not a betting person, but I'm willing to bet my Honda Civic wouldn't have fared too well, and I'd have fared even worse.

I'm feeling pretty lucky at the moment, and I haven't even mentioned a few other exciting car accidents, or last year's brief cancer scare, or my bad copy of the gene that causes infantile Batten disease - paired with my good copy, the difference between being a carrier and a victim, like my sister. My sister, Taylor, whose birth and infancy were all smooth sailing, who didn't accidentally set her grandparents' house on fire, who never plummeted from the top of a high dive or fell asleep at the wheel but who, unlike me, got two bad copies of the Batten disease gene. I've been granted my fair share of new leases on life, and every morning when I wake up, whether or not I'm looking forward to the particulars of my day, I'm just thankful for the day. And for as long as God thinks I should be here, I'll keep fighting for Taylor - to help her cheat death, just this one time.

Tuesday, August 17, 2010

Birthday Wish

When I was 15, I came home from school on a dismal January afternoon and found my mom sitting cross-legged in the floor of her closet. As I stood in the doorway, my backpack still slung over one shoulder, she told me she was pregnant, due in August.

A high school sophomore just a few months shy of her 16th birthday, I couldn't fathom the idea that my mom was pregnant. So, my supremely adolescent response to the whole matter was to grab my Sony Discman (still cool in 1998), lace up my sneakers and run out into the sleet and freezing rain. More than an hour later, I returned home with frozen eyelashes and wet clothes and walked right past my mom. I didn't bring up her news once that night - and eight months later, when my little sister was born, I found various reasons not to make it to the hospital. The afternoon Taylor came home, though, I raced my now-husband up the stairs to peer over the side of her crib (he won the race and maintains that he has known her longer). First place or not, I was instantly hooked.

That day feels like it happened in another lifetime. This Thursday, the baby I fell in love with the moment I saw her will celebrate her 12th birthday. Over the past 12 years, we've watched countless movies together, ridden bicycles in the driveway, done silly dances in our socks on the fireplace hearth, raced down the corridors of an underground mall in Toronto in T's stroller, gotten our nails done, cheered for the TarHeels, bought special treats for each other's dogs, eaten lunch with the Disney princesses and collected their autographs, rocked to the Cheetah Girls, Miley Cyrus and the Jonas Brothers at the local arena, built towering sandcastles in the sand, let the waves crash over our ankles and feet and, best of all, given each other lots of hugs. I thank God every day for the sister I never imagined I'd have or even knew that I wanted. I pray to God every day that the memories won't have to end.

She doesn't know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won't be cured by this Thursday - I'm a realist - but real progress can be made. As a friend of Taylor's Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister's life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.

Grant My Birthday Wish for Taylor

Thursday, August 5, 2010

Along for the Ride

Nearly four days have passed since I returned home to Charlotte, and yet I am still trying to process all that I saw, heard and felt at the annual BDSRA conference in Chicago. As I said a few posts ago, I knew going in that the conference would be mentally and emotionally challenging for me. I officially attended as the president of Taylor's Tale, and my mission in that sense was threefold: learn as much as possible about research, talk to as many researchers as possible and deliver a check for a research project. Research, research, research. Focusing on the research helped me achieve the goals I set for my time, and our organization's time, in Chicago.

Words to describe my weekend: whirlwind. Exhilarating. Sleep-deprived. Inspiring. Painful. There were times I didn't know if I'd make it. I know some families - many of them long-time veterans of this conference - will read this and wonder why. I realize that for many families, the conference is a time to connect with the only other people in the world who can possibly understand what they're going through. A time to get advice from clinical folks who know how to at least attempt to untangle the tangled web of symptoms Batten disease kids face. In that sense at least, Chicago was easier than Rochester in '07. I don't like it, because it acknowledges that my sister has this disease, but I now know that I belong.

I was in the middle of a research session on Saturday morning when solace came to me in the form of a blinking red light on my BlackBerry. My sister had sent me an email - an email she typed thanks to a fantastic little program on her laptop that says the characters aloud as she punches the keys. And there on the phone's tiny little screen was my sister's heart and soul - her journal entry recounting our vacation in the Virgin Islands:

We went to the virgin islands. John saw a little shark and it ate a fish right in front of his knee. Scary! A BIG iguana sat under my lounge chair. He was as big as sunny with a tail as long as a snake.

From that point on, my day only got crazier, but unlike the prior 36 hours in the Chicago hotel, I flew from session to conversation to PSA filming to session to basement gym treadmill to conversation to banquet to hotel bar (where I could still be found at 12:30 in the morning, less than seven hours before my ride to the airport was scheduled to appear in the drive out front) on the wings of an angel. And as I sat exhausted on the plane the next morning, I felt hollowed out but also more whole, and I knew then that my sister's courage had gotten me through yet another dip in the roller coaster at a time when I was not strong enough to ride it alone.