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.