Wicked

Published: May 25, 2010 ~ 0

By Laura Edwards

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

Published: May 14, 2010 ~ 0

By Laura Edwards

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 carry me through the inevitable dips in the roller coaster.

Fly High

Published: May 6, 2010 ~ 0

By Laura Edwards

I was driving to the office this morning, counting the hours of good sleep I’ve gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.

Taylor has never once forgotten to look for joy in the most unexpected places and has a knack for finding it when most of us would just pass on by. She can’t see her movies, so she listens. She couldn’t see the over-the-top production side of the concerts she’s attended the past several years, but she can sing the lyrics to every song and will be the first to tell you that the Jonas Brothers are ‘hot.’ She couldn’t see the blooming flowers and blue sky Mom and I saw as the three of us took a walk recently, but she proudly held Sunny’s leash, felt the cool spring breeze on her face, put one foot after the other and never once complained that she was the only one who couldn’t enjoy the azaleas. And though she needed my help finding each rung of the ladder on our cousins’ playground set when we visited them last month, when it was her turn to swing, she swung higher than anyone. She had a huge grin on her face, and she reached for the sky.

Fly high, Teaser. I love you.

Believe in T

Published: April 21, 2010 ~ 1

By Laura Edwards

My sister’s teacher forwarded a touching story about a little boy named Teddy Stoddard to my parents and many others, and it quickly made its way to me. The short version of the story is that the grubby, withdrawn, sometimes unpleasant Teddy earns a place in his stern teacher’s heart when she discovers that he had been forced to endure the death of his mother two years before. The teacher was immediately ashamed of the way she had treated Teddy. Soon afterward, Teddy gave the teacher two Christmas gifts: a near-empty bottle of perfume and a rhinestone bracelet with some of the stones missing, both wrapped in a brown paper grocery bag. Some of the other children laughed and poked fun at Teddy’s gifts, but the teacher treasured them. From that day on, the two developed a friendship that withstood the test of time. And many years later, after Teddy became a doctor, he thanked his old teacher for changing his life.

A quick Google search revealed that little Teddy Stoddard’s story was a work of fiction first published as such in a magazine in 1976. I can imagine that same discovery has marked the end of the story’s significance for many people. Not me.

Though she is not grubby or unpleasant, I still see some of my sister in Teddy. Taylor is beautiful and smart, brave and kindhearted. But Taylor is fighting her own battle, and because of that, she is occasionally misunderstood. She has Batten disease. Because blindness is part of her disease, her eyes don’t act the same way sighted people’s eyes act. And if she’s in a group of people, she’ll often get very quiet. Some people may think that means she’s not paying attention. But she is; she’s listening. She’s always listening.

Some may think it would be easy to give up on Taylor. There are plenty of other children out there who can see. There are plenty of other children who aren’t up against something as cruel as Batten disease. But like the fictional Teddy Stoddard, Taylor is filled with dreams. Because of an unfortunate roll of the genetic dice, her dreams may be harder to reach. But that’s never stopped Taylor from reaching up toward the sky; running 5Ks, going to school dances, learning Braille, memorizing the words to all of her favorite songs, getting straight As and teaching me more about love and dreams than I ever imagined possible.

Teddy’s story may be fictional, but Taylor’s is very real. And regardless of how you feel about Teddy’s story, remember the essence of its closing lines:

Just try to make a difference in someone’s life today.

Believe in angels – then return the favor.

Don’t ever stop believing in people who still believe in their dreams.

Don’t ever stop believing in T.

Letter to an Angel

Published: April 13, 2010 ~ 1

By Laura Edwards

Dear Daniel,

I hope you can find a few minutes between adventures to read my letter! There must be lots of mountains to ski down in heaven. Are they as beautiful as Mammoth Mountain? As you’re racing down the slopes, feel the wind in your hair and the sun on your face, but also the presence of your family and friends. They love you so much, and they will always be by your side.

My little sister, Taylor, has Batten disease, too; in fact, that’s how I got to know your family. You and Taylor have so much in common! You are both very brave, and whenever the grownups get really sad, you remind them how to smile. And just like you wouldn’t let Batten disease stop you from going to the ocean and skiing, Taylor hasn’t let Batten disease stop her from going to school with her friends or singing and dancing.

I am afraid of Batten disease, but Taylor helps me stay strong, just like you help your mommy and daddy and Lauren and David stay strong. It’s easy to want to fight for fighters like you and Taylor. You are my heroes. I write lots of stories about Taylor, and I even wrote a story about you when you turned 10 years old in January. Everyone who read your story told me you inspired them, and I just said, “Me too!”

I am so sorry we weren’t able to find a cure for Batten disease in time to save you, Daniel. Everyone already misses you here, but you are with God now, and I know He will keep you safe. Your life inspired so many people, and I know it will help give me the strength I need to keep fighting for Taylor and all of the other children with Batten disease. Your mommy told me that after your surgery, she felt like she was seeing the brilliant sunlight of hope for the first time. Even though your body has left us now, Daniel, your spirit still burns brightly. I’m not surprised that someone who loves adventures as much as you do would bring so much hope to so many people. Your life was a miracle. And one day, because of the gifts you gave us, I will find mine.

Rest in peace, be filled with the grace of God’s love, and take those mountains in heaven by storm! We love you.

Love,

Laura

Daniel Kerner

1/13/2000 – 4/12/2010

Pray for Daniel

Published: April 12, 2010 ~ 0

By Laura Edwards

I wrote an article about Daniel Kerner that appeared in our winter e-newsletter. Daniel, who turned 10 years old in January and is battling late infantile Batten disease, and his family have a special place in my heart. Tonight, they need your prayers.

If you don’t receive our e-newsletter, you can read Daniel’s story on the Taylor’s Tale website here.

To Daniel, Joanna, Marc, Lauren, and David – stay strong.

The Possible

Published: March 29, 2010 ~ 0

By Laura Edwards

Thanks to Jim Dunlevy, Raymond Felton, Rufus and the Charlotte Bobcats for bringing smiles to Taylor’s face last Friday night. Taylor and my 10-year-old nephew, Joey, had a memorable night at the arena – one that included access to the pre-game shoot-around, dinner in the Back Court, high fives to the players as they ran through the tunnel from the locker room to the court and lower level seats for the team’s win over the Washington Wizards. It was Joey’s first NBA basketball game and possibly T’s first since her world went completely dark. It didn’t matter. She still cheered and clapped when the Bobcats did well. She still smiled from ear to ear when Raymond Felton walked over to our seats at the shoot-around and said her name. And she still had a big hug for Rufus as soon as she felt the team mascot’s big, furry arm draped over her shoulders.

T knows that Raymond Felton was my favorite player during my years at Carolina. And despite all of the obstacles standing in her way, she still believes that someday, she will walk the same campus that her older sister and the Bobcats’ starting point guard once did.

To me, that’s what dreams are all about. Believing makes the improbable possible. Having faith AND working hard can make the possible come true.

Renewal

Published: March 21, 2010 ~ 0

By Laura Edwards

We had a wet winter here in Charlotte. My grass is already a rich, vibrant green, my roses are already coming to life, and the weeping willow we planted in the backyard two summers ago is already stretching its limbs toward the skies after its months-long slumber. Yesterday, we were graced with clear blue skies and temperatures in the mid-70s here in North Carolina. Not even March Madness could keep me, a self-described college basketball nut, indoors.

More than just a physical renewal, spring inspires a spiritual sort of rebirth. As I ran laps around the pond in our neighborhood yesterday morning, my sense of ‘believe’ was stronger than it has been in a long, long time.

Mom, Dad, and Taylor escaped to Charleston for a quick renewal of their own during the middle of T’s spring break this past week. On Friday, what was supposed to be an afternoon departure turned into a walk along the city’s waterfront park and famous Battery that stretched into the early evening hours. There, an 11-year-old girl going through an unimaginable illness and two parents going through an unimaginable pain found solace in the sunshine, the breeze and the sound of gentle waves as they lapped up against the walls of the Battery.

Believe.

Dancing in the Stars

Published: March 7, 2010 ~ 0

By Laura Edwards

Taylor went to her first school dance on Friday night. Decked out in a sparkly pink and purple top adorned with dream catchers over a denim skirt, chocolate tights and Ugg boots, my sister spent two hours on the arm of her date, Scott. And since parents were strictly forbidden from the school grounds during the dance by the sixth graders, I was the lucky girl who got to spend a Friday evening as a fly on the wall (the only fly in the world that can operate a digital camera and camcorder), there only if Taylor needed help (she didn’t).

Having never attended a dance with a date until my junior prom when I was 17, I got to bear witness, via my much younger sister, the best parts of ‘crushing’ on a boy pre-high school (and all of the attending drama). The smiles on Taylor’s face said everything. There were no teen-charged mixed signals to analyze: she had the time of her life. And there, in the Fletcher School’s cafeteria with ’80s music playing in the background and neon deejay lights painting the air, the fly on the wall was having the time of its life, too – holding assorted cell phones for pre-teens, catching the scenery on camera and bottling up the dream catcher girl’s courage and her date’s kindness for the days to come.