Friday, June 3, 2011

The One Two Step

While I favored pirouettes and piles over the quickstep or the foxtrot, I am pleasantly thrilled with the ‘chicken dance’. No, not that traditional one we all know so well, the Gracie version (reminder: the 3 year old I babysit), the dance - I might add - includes flailing her arms and spinning in a circle until she falls down laughing.

There’s something untouched and pure and surprising and humorous and honest and real about little kids. They giggle when somethings tickles them, tears roll down their cheeks before they understand why they’re upset. Gracie’s newest obsession is the word ‘poop’, clearly I find this immensely entertaining, and I brought her my copy of “Everyone Poops” (I must confess it was a recent gift from my brother, ah the perks of having a bowel disease). She LOVED it and laughed so hard, asking what animals were on the pages pooping. I told her I had brought some more stories, she looked up at me with big eyes and asked, “Everyone Pees?”

Besides the fact that I love Gracie and her big brother very much and find them amazing little people, I’m touched even more to be their babysitter because of the way I started babysitting them. At the time, I had an NG tube and explained in detail what it meant to their parents, who were very understanding and supportive. By this time, I had a rote speech I’d give to kids about the tube, and was prepared to do this for Gracie and her brother. But much to my surprise, and delight, they didn’t seem to notice and asked no questions about it and couldn’t wait to show me all of their toys and books. Last summer, Gracie and I both went under the knife - her first for her little burst appendix, me next for my colon, but we’re both proud members of the down-an-organ club. They are reminders of my crazy dance with Crohn’s, the one step forward, two leaps back, falling down and getting up.

And so the theme of walking and feet and dancing is ingrained in me as I head into the final week before the Heel n’ Wheel. I pause to think of more ways to fundraise, not wanting to pitch my story as Hollywood’s next tragedy staring Natalie Portman (because, let’s face it, she is starring in virtually every movie nowadays, not that I don’t love her), but instead as just my life. Yes, I want someone to donate $10 to research. But no, I don’t want to go door to door with my big I-have-an-ostomy-and-a-disease eyes. I sent an email tonight to lots of friends and family with the exciting YAC and Gutsy Generation news we have worked on this past year as well as the bite-size version of my medical history, claiming pride and empowerment over my conditions (the truth, no matter how much it is drenched in cheesiness). So far, one donation - and hopefully more to come!

It’s human nature to want things we can’t have. For me at age five, it was purple hair (thank goodness my parents said no). For Gracie, it’s the (odd) desire to want to have one bang (aka one piece of hair as a bang) - she was taken with my lack of bangs and pretended to not have any herself. For my sister, it’s endless Timmie’s hot chocolates and ice caps (okay, perhaps possible, but unlikely). For people with IBD, it’s the want to be done with our diseases and get on with our lives. And come next Sunday, I will be walking, taking the tangible steps to achieve that - and who knows, maybe if I’m crazy enough, I’ll be doing Gracie’s chicken dance, celebrating what the CCFC has accomplished and the dance-worthy futures that lie in store for us all.


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