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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 in Virginia for a quick Labor Day trip. The escape didn’t come a moment too soon for any of us, and under a flawless 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 Taylor’s Tale, the non-profit organization 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 was shared with me by 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. These words light the way when my path becomes dark; they help 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 being honest 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 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.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 twelfth 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 Tar Heels, 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.
Major Victory Scored for Rare Disease Community
Thanks to our partner, the EveryLife Foundation, for their work on behalf of the rare disease community. The lives of children with Batten disease depend on not only the momentous work being done in research labs across the nation and world, but also on the ability of this research to make the leap from bench to bedside. The EveryLife Foundation’s CureTheProcess campaign – an effort Taylor’s Tale endorsed earlier this year – is dedicated to putting treatments for rare/orphan diseases like Batten disease on the fast track.
A major victory was just scored on behalf of everyone who suffers from rare/orphan diseases, due in large part to the work of our friends at EveryLife. Read the press release.
Batten Disease Awareness Weekend
This weekend marks International Batten Disease Awareness Weekend, a time dedicated to raising awareness of Batten disease. For Taylor’s Tale, it’s a time to share our story.
If you can do just three of the following easy ideas to raise awareness of Taylor’s Tale and Batten disease sometime this weekend, you can help us write a happy ending for all children like Taylor.
How You Can HelpÂ
- Watch the Taylor’s Tale video if you haven’t seen it, and share it with your friends.
- Share our Facebook page with your friends by recommending it.
- Pledge your status on Facebook, Twitter, etc. with a donation call to action and link to the Taylor’s Tale site (Example: Every child deserves a happy ending. Help children with Batten disease by making a donation at www.taylorstale.org.)
- Wear your Taylor’s Tale T-shirt over the weekend. If you don’t have one, don purple clothing or a purple ribbon.
- Share Taylor’s story with three people who have never heard of Taylor’s Tale.
- Make your email signature purple for the weekend and following week.
Simple Kindness
I have worried so much about my sister lately – for all of the regular reasons, of course, but also because she’s in the sixth grade. Middle school was tough for me. My awkward stage dragged on for about three years. I liked to play soccer and build forts in the woods and play video games and wear t-shirts and jeans – not exactly the ticket to popularity for a girl going through puberty. It wasn’t until much later that I realized most of my classmates were going through their own confused versions of growing up. This year, I’ve watched T face all of the normal challenges an 11-year-old girl faces in addition to the challenges of losing her vision and fighting Batten disease. She’s done it with a smile on her face – and unlike her big sister, she’s never been too afraid to follow her heart.
A few weeks ago, several of Taylor’s friends dreamed up the idea to have a fundraiser at school for Taylor’s Tale. They got approval from the powers that be. They organized and promoted it.
Last Friday was the big day. T’s classmates paid a dollar to wear pajamas to school. Several of the girls’ moms made popcorn in advance, and the girls sold snacks during lunch. At the end of the school day, T’s friends handed my mom a bulging envelope decorated with sticky notes that told the story: the kids had raised nearly $500.
That night, the girls and their moms hit uptown Charlotte for girls’ night out, featuring dinner and a play. It wasn’t until much later that Mom and T returned home, where T put on her pink and orange polka dot pjs for the second time that day and climbed into bed. She went to sleep exhausted but happy.
I want to thank everyone who had a hand in what turned out to be a great day for Taylor’s Tale and the fight for a cure for Batten disease. Most of all, though, I want to thank the girls who take care of my sister the five days a week they’re all in school and whose love lifts her up on the days they’re apart. Sometimes, the greatest act of all is simple kindness.
Three Years
Tonight marks the three-year anniversary of Chapter One, the event that started it all for Taylor’s Tale. On the night of February 9, 2007, less than seven months removed from Taylor’s crushing diagnosis, my family told our story publicly for the first time to about 160 guests in the home of two very kind friends, Leslie and Bruce Schlernitzauer. As we turned the last pages of Chapter One, the people there to share it with us joined the fight to cure Batten disease by donating nearly $40,000 to the cause. I still remember the feeling of hope that washed over me as the last guests departed and I discovered the extent of the evening’s success.
Three years later, we’re a 17-month old public charity. Seven of the dedicated women who helped make Chapter One happen – who were there starting with the very first steering committee meeting – sit on our board of directors today. The research project that was launched as a result of Chapter One is in its third year of funding and making exciting history in the effort to cure infantile Batten disease. Taylor’s smiles and laughter still brighten the days of those who know and love her. And we are still fighting. Whether you’ve been with us from the very beginning, have stood by us in the past or have yet to write your own chapter of Taylor’s Tale, the mere fact that you’re reading this now helps me BELIEVE for the future.
Click on the links below to read other historical Chapter One-related posts and view photos of the night that inspired a movement.
My Birthday Wish
I’m turning 28 on March 1, and I have just one birthday wish. Please consider making a gift to Taylor’s Tale, the nonprofit organization I helped found in honor of my younger sister, Taylor, who has infantile Batten disease. Your gift will help us find a cure for children like her. Thank you in advance for your support!
To grant my birthday wish via Facebook, click here. Otherwise, you can make a donation using PayPal on our website.
Taylor’s Tale on Twitter
Taylor’s Tale is now on Twitter! Follow us to get real-time updates on the search for a cure for Batten disease and how you can get involved. Check us out here.
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