The Soul of the Playathon

By Laura Edwards

Not long after we learned that my little sister has a rare disorder called Batten disease, my grandmother’s best friend, Polly Greene, opened her heart and the piano studio in her home in Raleigh, N.C. She invited her young students and their families to play music in a relaxed environment on a chilly February afternoon to honor Taylor’s brave fight and raise money for a fledgling organization called Taylor’s Tale.

The playathon Polly founded became an annual event. Her friend and co-chair, Pamela Tsai, took the effort to a local piano shop in its second year, and it’s only continued to grow. Last weekend, the sixth annual playathon brought together 19 teachers and 112 students, whose music and show of support for a peer many of them have never met attracted almost 250 guests on Super Bowl Sunday.

The kids and their teachers raised over $3,000 for our fight against Batten disease, but that’s not what I love most about the playathon. It’s the event’s soul, captured best in the reflections of those who created it and continue to stage it, year after year:

Pamela and studentsThe (kids) who met (Taylor) in the past always want to know how she is doing and if they will see her this year. They understand when I say she can’t travel very well anymore, but they wish that she could. The ones who haven’t met her want to know all about her…how old she is, what she can do, would she hear them if they played? They really do seem to know who they are playing for and why. Sometimes, students will tell me that they saw someone else at their school in one of the (Taylor’s Tale) t-shirts and went and talked to them. It seems clear the playathon is more than just another activity to them.

At Hopper (Piano & Organ Company) a little girl of about 7 emptied her change purse…that likely accounts for the 55 cents (in the final amount raised). I thought that was very cute.

-Pamela Tsai

Polly and studentsThe playathon offers an opportunity for young people to use their music to give back – to reach out – to help someone else. I watched the students come into the different venues – music in hand, parents and friends by their sides, smiles on their faces – all because they are playing music and not thinking about themselves. Some are dressed to the nines and some in casual clothes, but they come, and they come willingly. They come to play for Taylor.

There must be something freeing for them to know that each note they play is for Taylor and for others like her; to know that by giving up a few minutes of their weekend, someone else might get better or at least be encouraged.

But a look at the parents’ and students’ faces also reveals a lot. At recitals, you see parents and children come in, (and you notice) some signs of stress on their faces, some worried brows over whether their child will play well and slumped shoulders of some students who know they did not practice enough. But at the playathon, parents and students come in relaxed, smiling and talking with each other, all knowing it is going to be a fun afternoon – they can play pieces they like – they can use their music – and they are sharing the stage with students of other teachers, all for a great cause.

It is also a window into the styles of fellow teachers – you see them as they relate to their students – how they encourage them and talk with them – how the students look to their teachers for encouragement and acceptance and a nod that they did well. This is something private piano teachers do not get to experience, because we are all teaching in our own studios; how nice it is to be able to interact with other teachers and their students. It is rare for this to happen – especially when all are there for a common cause, and it does not involve competitions or contests.

And finally – here are some pictures that stick in my mind:

The 6-year-old who is so shy, she will not speak up at school but will go up on a stage in front of strangers to play for Taylor, and the surprised look on her parents’ faces as she does so with confidence.

The 9-year-old girl who brings her own entourage of friends – all dressed in their Sunday best and acting like they are at the best music show in town.

The young girl dressed in a purple skirt with net and stars befitting the best ballerina in town and her pink cowboy boots.

The teacher whose students all come dressed in purple for Taylor – and when you look closer, most of the parents are in purple, too.

The father of a new student who has only had a few lessons – worried about how well she is doing – then seeing his beaming face as he watches her play her pieces – he knows she is doing just fine.

The look on the face of the father of a teenaged boy who goes to the stage – hat on his head, dressed in casual clothes and playing his own version of his pieces – change from interest, to pride, to a broad smile and then a shake of his head in wonderment.

The student with autism who has found a love of music but is wary of playing and anxious about going up to the piano, but he does it for Taylor – and he is proud of himself when he is done.

The store owners who graciously donate their recital halls for Taylor – and then you see them go over and put a donation into the basket.

The look on the face of Taylor’s grandfather as he sits on the front row listening to student after student play for his granddaughter.

It is an afternoon with little stress for the students – an afternoon of music – an afternoon of students supporting and encouraging each other – an afternoon of teachers sharing a musical experience with each other – an afternoon for Taylor.

-Polly Greene

Thanks to all those who attended the event and gave to Taylor’s Tale, from parents and grandparents to others who had no children playing but came to support our cause anyway. Thanks also to Hopper Piano & Organ Company, Maus Piano and Organ and Ruggero Piano for donating space for this wonderful event once again. Finally, thanks to Polly, Pamela and all of the teachers and students whose selfless love and dedication help us get closer to beating this disease each year.

Watch a UNC-TV feature story about the playathon

Just Words on a Page

By Laura Edwards

Yesterday, I did the most amazing thing: I scheduled my day. My husband promised a friend he’d help him with a home improvement project that I suspected would turn into an all-day affair. I had a couple of tasks I wanted to accomplish with my Sunday of solitude. I not only made a list – I scheduled the items into specific blocks – and I told myself if the time on a task ran out, that’d be it.

After I organized my notes from interviews for a book-length project and went for an eight-mile run in the January sunshine, I worked on PR for the piano playathon, an annual event benefiting Taylor’s Tale and the fight against Batten disease in Raleigh, NC. Two hours before the UNC-Clemson basketball game, I took a cup of decaf coffee, a blanket, my snuggly dog and a book I’m reading for fun (I love to read, but it doesn’t happen often) up to my reading nook by the front window in my bonus room.

For awhile, I lost myself in the book, a novel set in post-Civil War Virginia. As I soaked up the silence and watched the late-afternoon light dance on the spines of books I’ve collected for almost three decades, I thought about how my sister, Taylor, who taught herself to read before she graduated from the preschool class at our church, can no longer enjoy the stories that fill the pages of the books lining the shelves in her own room.

Taylor with Braille placematWhen we learned Taylor would lose her vision, she began working with Jill, a VI specialist (teacher for the visually impaired). My sister learned the letters of the braille alphabet. She learned how to string the letters into words and the words into sentences. She showed me the correct way to read the raised dots of the braille alphabet with my fingertips, even though, because I’m not blind, it would have been easier for me to learn how to read the letters with my eyes. She learned how to type on a Perkins Brailler, a braille typewriter. She typed braille notes for me and made a braille birthday card on fire engine red construction paper for my 27th birthday. Her teacher, Jill, wrote the words underneath the raised dots, because, unlike my little sister, I never mastered the braille alphabet.

But then Batten disease stole braille from Taylor, too. My sister is the girl who, not so long ago, foiled her church preschool teachers’ idea to help the other kids learn to read when she skipped down the hall and announced the names printed in neat, block letters above each cubbyhole. But then her eyes quit on her, and a few years later, her fingers quit on her, too.

You could say the books lining my shelves are just things. You could say the stories they share are just words on a page.

But while they’ve brought me great joy, they’re another symbol of all my sister has lost; of all she stands to lose. 

I’ve heard something about this story.

I don’t like the way it ends.

Sweet Music

By Laura Edwards

boy playing pianoSunday marked the end of the fourth annual piano playathon for Taylor’s Tale. Here are the numbers: 141 students of 18 teachers played at five venues for 18 hours total over three separate days. In all, the events raised $3,004.26.

Here are some memories gifted to us this year:

  • The addition of a Suzuki violin group – especially touching for Taylor’s mom, because Taylor took Suzuki violin lessons the year we learned she has infantile Batten disease
  • A 6-year-old boy played a small violin, and he and his younger sister sang the Spiderman song together; Mom and Taylor sing that song every morning when they brush their teeth (they don’t know why – they just do!)
  • The students ranged from very accomplished/experienced to brand new – i.e. one girl just two months removed from her first lesson, yet willing to step up and play (and do a fantastic job!) for children with Batten disease
  • The little sister of the former student who played sans butterflies – with so much joy, in fact, Mom thought they’d have to close the piano lid at the end of her turn
  • The students who remembered meeting Taylor last year (she did not attend this year) and went out of their way to ask how she is doing
  • The adult student who returned on the last day of the playathon, not to play, but simply to listen
  • The students (children) who agreed to do interviews with the media that came to cover the event – and nailed them
  • The student who entered a beauty pageant and chose Batten disease as her platform
  • The boy (probably Taylor’s age or not much older) who played the Journey song “Don’t Stop Believin'” and played it a second time just for Mom, because “believe” is her favorite word
  • The former (now grown) student and childhood cancer survivor who couldn’t attend the playathon but supported it from afar with a donation

Mom listening to music

Thank you to the event co-chairs, Polly Greene and Pamela Tsai, and all of the teachers for their amazing efforts on behalf of Taylor’s Tale.

Thank you also to the venues – Burrage Music Company, Hopper Piano Company, Music & Arts, Maus Piano and Organ and Ruggero Piano.

Finally, thank you to all of the students who played for using their musical gifts to give the gift of hope to children with Batten disease.

Today Was a Fairytale

By Laura Edwards

Thank you to the following people for organizing a magical afternoon this past Sunday at Ruggero Piano in Raleigh: Polly Greene, Susan Burnette, Cree Russell, Dottie Buster, Pamela Tsai, Chris Dobson, Deborah and Richard Ruggero, all of the students who spent a beautiful weekend afternoon making music for Taylor’s Tale, and all of the family and friends who attended.

Thank you also to the piano student and his friend, a cellist, who played a beautiful, impromptu rendition of Taylor Swift’s “You Belong to Me” after learning that it is one of Taylor’s favorite songs. My sister was in the room when this happened. I knew it was coming and made a point to watch her face as the song began.
Often, T will get very quiet and appear to gaze off into empty space, and sometimes, the people around her assume that she’s zoning out. I think that many people forget (or never realize in the first place) that she is blind – which perfectly explains the daydreamy look she gets. Her eyes are beautiful and still have the power to betray the way she feels at any given moment, but mechanically speaking, they have nowhere to look. And when she grows silent, it’s usually because she’s listening. In the absence of visual stimuli, T has mastered the art of picking up even the slightest auditory cues. So when others think she’s ‘zoning out,’ she’s actually 100 percent invested in the moment and is likely more wholly aware of all of its nuances than the sighted people around her.
As the notes of “You Belong to Me” danced from the piano and cello on the stage to where T was sitting in the crowd, it was as if someone had suddenly switched on a light inside of her. Rarely overtly emotional, T instead allowed herself only the slightest smile – but a smile that illuminated her face just the same.
I regret not getting the names of the musicians who brought real happiness to my sister on Sunday. In case either of them happens to stumble across these words, though, I want them to know that if I had been thinking clearly when I thanked them in person on Sunday, I would have said – to borrow from the title of another Taylor Swift song – Today Was a Fairytale.

February Events

By Laura Edwards

We have two great events scheduled for February! If you fancy wine or music (or both!) and want to help support Batten disease research in 2010-2011, please consider joining us on Feb. 11 and Feb. 28.

On Thursday, Feb. 11 at 6:30 p.m., join us for a wine tasting hosted by Tryon Distributors at the Rosewood Community Room, located on Providence Road in Charlotte. For a $35 tax-deductible donation to Taylor’s Tale, you can enjoy French wines, indigenous cheeses and chocolate truffles. This exclusive event will be limited to 50 guests, and reservations are required no later than Feb. 8. Learn more about this event here.
A piano playathon will kick off at 1 p.m. on Sunday, Feb. 28 at Ruggero Piano in Raleigh. The piano will be going all afternoon! Stop by at your convenience to enjoy the music, light refreshments and coffee. Admission is free, but donations are encouraged. To learn more, click here.