It's Been a Long Time

It's been quite a long time since I took such an extended break from my blog. I had surgery to fix a broken (obliterated apparently) nose - another fun soccer souvenir - 17 days ago, and the recovery period has officially turned me into a couch potato (minus the laptop in the evenings at least - usually one of my resident couch friends). In any case, I just have to figure that having that much work done close to my thinker has totally robbed me of any creative juices - juices I'm still searching for even now. In any case, I did want to blog tonight, if only to:

1) let everyone know that I'm still here...

and

2) thank the wonderful hostesses, attendees and all others who supported Taylor's Tale last night at our Australia wine tasting, the last in the Wine Around the World for Taylor series of tastings. Yesterday also marked the birthday of the best mom in the whole world (the mom of Taylor, her big brother and yours truly), so our wine tasting was made complete by tasty cupcakes and a toast to birthday wishes (I know of at least one wish my mom made last night - just guessing - when she blew out that candle). Please check out our website for a recap of the event and, eventually, photos. If you are on Facebook, you can view the photos now on our page.

That's it - for now! More to come later.

What Do You Wish For?

I went out for a sweet treat last night with my two favorite girls - Taylor and my mom. We experienced the euphoria of Yoforia, a new frozen yogurt shop situated conveniently (i.e. dangerously) on the way home from my office. After eating our yogurt piled high with scrumptious toppings, we sat on the bench in front of the fountain outside to watch the sky as it thought about storming, then sprinkled a few stray drops, then shifted colors like a kaleidescope until finally fading into early dusk.

I can't walk by a fountain without making a wish - a trait that was developed through countless nights at the old SouthPark Mall fountain outside the now long-extinct Baskin Robbins with my dad and enhanced in recent years by my increased need for fulfilled wishes. So as the late afternoon sky changed from cotton candy blue to deep purple and lavender to fiery orange and back again, we pulled out our wallets and produced handfuls of change, and we fed the fountain with pennies, nickels, dimes and quarters to the fountain's and our hearts' content, squeezing our eyes shut tight and making a wish on every last coin.

I wish for a strong run on the rain-soaked streets of my neighborhood as soon as I publish this post. I wish for a sound night's sleep tonight. I wish for a successful surgery tomorrow morning to fix the nose I broke playing soccer three months ago. I wish to feel well enough this weekend to watch the Americans at least play England to a draw in their World Cup opener. I wish for a summer filled with charmed memories created from here to the white sands of the Virgin Islands - images and smiles to bottle up for another day. I wish for a coming year in which the dark shadow of Batten disease moves at the pace of a snail - or not at all - to envelop my sister. I wish to see her grow up to experience the same milestones I have been lucky enough to live - graduating from high school and college, falling in love, getting married, discovering oneself and finding a way in the world. I wish for a cure. I wish for the strength, the courage and, above all, the miracle that could write her happy ending.

Give Me a Sail

Learning that someone you love has Batten disease is like being stabbed with a serrated knife. Watching Batten disease attack someone you love is like twisting that knife a little more deeply over days, weeks, months and years.

After almost four years of this, I know a lot more about Batten disease but still nothing more about the future than I did on day one. If there is one thing I do know, though, it's that I have to keep breathing.

Because tomorrow, the sun will rise...and who knows what the tide will bring? 

Give me a sail.

Ride the Booty Loop for Taylor's Tale!

Check it out - one of our board members, Anne Pipkin, is leading an effort to ride Charlotte's famous 24 Hours of Booty in honor of Taylor's Tale. See Anne's message below for more details. Thank you, Anne!

p.s. if you would like to wear a Taylor's Tale t-shirt for the ride but do not have one, please email me.

JOIN US ON JULY 31 AS WE RIDE THE BOOTY LOOP WITH TAYLOR'S TALE ON OUR BACKS!

Even though the weekend registration is full, on Saturday, July 31, we can all ride together in honor of Taylor's Tale! If you do not want to ride, visit our web page and support the 24 Hours of Booty organization, which aims to unite all people suffering from disease.

Cut and paste the link below; then click on Charlotte; then Register; then Reboot; then Register as a Team Member; then input Taylor's Tale as the team name; then click Join Team; then enter the team password (taylorrocks); then enter your info. Ride ten minutes or ten hours...but join us!

Our base camp will be 1626 Queens Road West...come one, come all!
http://www.24hoursofbooty.org/site/TRC 

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. For more ideas, click here.

How You Can Help 

Watch the Taylor's Tale video if you haven't seen it, and share it with friends either through Causes on Facebook, by posting the link or by sending by email.

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.com.)

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.

Example:

Laura King Edwards
Taylor's Tale

7804 Fairview Road, Box 135
Charlotte, NC 28226-4998

laura@taylorstale.com

www.taylorstale.com  *  http://writethehappyending.blogspot.com
http://twitter.com/taylorstale  *  http://www.facebook.com/pages/Taylors-Tale-Fighting-Batten-Disease/70019819739

Every Child Deserves a Happy Ending

Signed in purple to help write the happy ending for Taylor’s Tale by finding a cure for Batten disease. 

Wicked

Last night, my mom and I took Taylor to see the Broadway show Wicked on the wings of someone's kindness. It was an amazing production - one my mom and I both left saying we'd see again in a heartbeat. Near the end of the first act, when Elphaba (a.k.a. the Wicked Witch of the West) rose high above the stage crowned by an eerily beautiful blue light, every single last little white-blonde hair on my arms stood up. But when my sister squeezed my hand and laughed out loud at the billy goat professor Doctor Dillamond's baaaaaahhhs, my heart soared.

Thank you to our anonymous angel for the gift of a memory my two favorite girls and I will never forget.

Anonymous Angel

Last weekend, my mom asked me if I believe everything happens for a reason. I didn't really give her a straight answer. You see, I used to think everything happened for a reason. Then, after 24 years, four months and 23 days, I learned that my sister was born with a defective gene that affects her ability to produce an important enzyme, giving her Batten disease. In the three years, nine months and 13 days since that crushing diagnosis, I still haven't landed on any good reason for Taylor to be sick. 

I had a rough start to my week. Then, Tuesday night, I had a late soccer game. We were all stretching on the sidelines before the game started when the lights suddenly went out. That gave us about 20 minutes to kill in the dark while we waited for a few phone calls to be made and the lights to warm back up. So as we were standing there, we talked about random things. One of my teammates mentioned she had three tickets to Wicked that she needed to sell. She'd already seen the Broadway show about the witches of Oz, she said. I said my little sister, who is sick, would give anything to go. She told me she'd sell the $80 tickets to me for $65 apiece. 

Taylor loves The Wizard of Oz. She collects Dorothy snow globes and has wanted to see Wicked very badly for a very long time - ever since our good friend, Callie, told her about it. So of course I told my teammate I'd buy the tickets. 

We had another game tonight, so I headed to the field with a $195 check made out to my teammate with the tickets. When I got there, I told her we could just make the exchange after the game. She responded by saying we should make the switch before we played - that she wanted to talk to me anyway. When we got out of earshot of the rest of our team, she told me she didn't need my check. She wasn't allowed to say who, but someone on the team had bought the tickets for me. 

On Monday, I was gearing up for a really bad week. I could feel myself heading downhill on the never-ending roller coaster. But as I drove home tonight, I counted three great acts of kindness directed at my little sister and our family in less than a week: the first two by T's classmates, and the last by an anonymous angel who plays soccer with me once or twice a week. 

I still don't think everything happens for a reason. Until T is cured, any silver lining in her disease will elude me. But I do believe that T attends the school she does for a reason. And I do believe that those lights went out on the field Tuesday night for a reason. Thanks to a lot of compassionate kids, Taylor's Tale is $1,250 closer to awarding another year of funding for an important research project this July. And thanks to my anonymous angel, on the evening of Sunday, May 23, I'll get to see my sister smile big enough to get me through the inevitable dips in the roller coaster.