Taylor King, Sixth Grader

Published: June 20, 2009  ~   0
By Laura Edwards

I’ve been officially mired in my longest stretch between posts since I started my new blog in February; the Charlotte summer has arrived – along with its trademark, near-unbearable humidity – and I think it has fried my brain.

I haven’t written about T in awhile, so a quick update: she “graduated” from elementary school the first week of June and officially became a middle school student. At the moving up ceremony, her teachers recognized her for her “inspirational attitude” and her “amazing accomplishment of learning Braille.” Well said.
Every time I see T lately, I’m shocked all over again at how quickly she’s growing up. She’s getting tall. She has a crush on a boy who’s not on the cover of a Disney album, but rather a real-live classmate, and she’s already talking about this fall’s sixth grade dance. I see her thinking often, the way she does – she gets real quiet and still and tilts her head as if to train her gaze on something off to the side, though her gaze is unseeing. Sometimes I want so badly to know what’s going through her mind, to understand what it’s like to have the things happen that have happened to her. But then I would have to have Batten disease.

I don’t know what is going through T’s mind day in and day out, but I think I have an idea of what’s in her heart.
Tears sprang to my eyes as T’s friend guided her up the steps to receive her fifth grade certificate on moving up day. Really – how many parents cry at these things? And I’m only the sister – the sister who sat with the dad in place of the mom who was on another continent trying to save her daughter’s life.
I’ll never step back, evaluate my sister’s life and decide that she has had her fill; I can’t say, “well, she made it to sixth grade and learned Braille and ran two 5Ks, and that’s already beating the odds;” it will never be enough, and I’ll never stop fighting for more. By that, I don’t mean to detract from the blessings that have graced the first eleven years of her life. I am so thankful for those. And, since I’m on the subject of moving up day and achievements and growing up, my heart goes out to those angels who have been a compass for T, who have encouraged her and loved her and carried her – and her family – when we could not walk. T is our angel; you are hers. Stick with us awhile longer – we have more miles yet to walk for this girl.

The In Crowd

Published: April 30, 2009  ~   1
By Laura Edwards

We spent an awesome couple of days this past weekend at the new Great Wolf Lodge in Concord, just north of Charlotte. Thank you to the angels who made it possible for Taylor to make happy memories with her family at the resort.

The weekend marked the Great Wolf Lodge’s official grand opening celebration, complete with a Radio Disney banquet and intimate concert with Disney star Mitchel Musso of Hannah Montana fame in the lobby on Friday night. When the music started, most everyone else got up on their feet, but T remained seated on the floor. Every time I squatted down to talk to her during the show, she was lost – no – found – in her own private, happy little world of music. She chanted when the crowd chanted and clapped when they clapped and cheered when they cheered, but she experienced that hour in her own special way.

One of the songs Musso and his band performed was called “The In Crowd.” As the lyrics blared from the speakers stacked not more than two feet from where we stood and I took in the gobs of preteens and tweens and teens oogling the band members, I thought about how hard it must be for a girl T’s age to endure everything she has endured, from getting a rotten diagnosis to taking yucky meds to struggling with some subjects in school to going blind to traveling thousands of miles to have major (and experimental) brain surgery, losing her beautiful head of long blonde hair in the process. I think back to when I was in the fifth grade, like T, and remember how it was the year when it seemed as though an invisible switch was flipped, and the girls started puberty, had their first real crushes on boys and suddenly cared deeply about not so much what clothes they wore to school, but rather what others thought of them, and how all of those physical and social and emotional changes triggered what I call the ‘mean girls’ syndrome. I think, in one single moment, how compassionate people are and how cruel they can act. And then, I remember how T has faced each day – every wound, every setback, every laugh and every moment of great hope – with more grace and courage than I could ever dream of finding within myself. We have created such a complex system for how people are judged socially, and for what? We spend so much time examining other people for their faults that we often look right past their gifts.

The song served as a stark reminder of one of the many kinds of pain T has felt in her short life, but it was also a reminder of what makes her so special. Yes, she has Batten disease – but she’s also a 10-year-old girl who makes a note of Disney movie and CD release dates and who didn’t want to wash her hand after Mitchel Musso held it when it was her turn at the autograph session. She’s a girl who wants so badly just to be normal but who also isn’t afraid to walk – or dance – to her own beat.  And the moments we shared at the lodge – whether during the concert or on the slides at the indoor water park or on the mini golf course or in the arcade during our heated games of Skeeball and basketball and air hockey, were filled with her laughs and her smiles – and that, to me, is the grandest gift of all.