“You are who you are. And nothing can stop you from being the best you can be.”
–Oliver Scheier (Age 9)
“Hey E, do you want to write a Kids Flaunt for my website?” I had recently broadened the scope of my (increasingly narcissistic) blog to publish pieces from other adults, teens and even kids. Our ten-year-old had just returned from spending his first month away at camp in the Berkshires. Born with my genetic condition, Ectrodactyly, Ethan was essentially a ‘mini-me.’
When he handed me his draft, I found myself impressed not only by his level of confidence, but also by the level of maturity he could display: “I was super excited (about camp). But truthfully, I was a bit nervous, but not about the people there. Instead, I was nervous if camp wouldn’t turn out to be fun. After all, I love sports. I was hoping they would let me play the sports I love. As for my fingers, I felt as if people were curious, I have already been living with that…… Here is what I think. I had a good summer and the kids really did not always focus on my fingers. First, I was lucky because they were overall nice kids at my camp. But also, they accepted me because I was comfortable with myself and that made them comfortable with me.”
I had actually received several unprompted emails directly from the camp’s director wanting me to know how well Ethan was thriving. In one particularly surprising photo, Ethan was playing guitar. It would never have occurred to me to even try to introduce him to a string instrument.
Ethan ran off to play basketball in our driveway, without any idea of how much he had moved me. Staring out the window with tears streaming down my cheeks, I reminded myself that as a parent of a child with a blatant physical difference, it was up to me to give him (and his younger brother) opportunities that he himself might not even consider possible. I was grateful that others could also be counted on to step in and encourage my children to thrive.
I was thinking about the breakfast meeting that had just ended. It was my first face to face encounter with Mindy Scheier, a fashion designer and mother of three, including Oliver, who was born with a rare form of Muscular Dystrophy. Mindy and I met to talk about the synergies between Don’t Hide It Flaunt It and her planned initiatives to help the differently-abled community. She had been inspired to do something when she realized there were no jeans available for Oliver to wear comfortably over his leg braces. Thus was born “Runway of Dreams”, Mindy’s non-profit organization working with the fashion industry to adapt mainstream clothing for the differently-abled community. We sat together for hours, and it was one of those rare moments when you meet someone, but feel like somehow you’ve know them forever.
She and Oliver both wrote “Flaunt” articles telling their story to be published on my site. In Mindy’s piece, she shared her commitment not only to help her son live his life to its fullest, but to help him see vision and opportunity that he otherwise might not consider. “I see Oliver asking me questions or offering his thoughts about the Runway of Dreams program and it makes me so happy. I see how he embraces life–believing he can do anything. I want to protect that vitality forever but I live in fear daily that it will be shattered one day. But I lock that far, far away in the heart because Oliver CAN do anything…in the best way he can.”
“Wow. You and your daughter look so much alike. She’s your mini-me.” Savanna and I were at Starbucks this past week and the woman in line after us had been listening to Savanna list all the options for her next birthday party. My expression had been both blank and amused, knowing the same conversation would take many twists and turns and undergo several revisions before her actual birthday six months from now.
Upon hearing the comment, I shifted to complete bemusement. After all, we adopted Savanna at birth, yet I have received countless unsolicited comments from strangers telling me just that…..that she is my “mini-me.” With her blond hair and blue eyes as compared to my own dark brown, I continually wonder what is it about us that causes people to perceive a strong resemblance?
Then also this past week I read an article that instantly thrilled me. “Model with bionic arm walks at New York Fashion Week with her mini-me.” Accompanying the piece was a stunning photo of the beautiful Rebekah Marine walking with six-year-old Gianna Schiavone. Marine was born without a right forearm, while Schiavone was born without her left. “Gianna’s my mini-me, Rebekah told People.com. She looks like me and was also born the same way I was. In turn Gianna replied, “Walking with her makes me feel happy because there’s not just one me in the world.” I had to reach out and was delighted that Rebekah and Gianna subsequently agreed to a Kids Flaunt and Guest Flaunt interview about themselves and their runway experience together.
But there was more to come for Gianna in the press as a Model Ambassador for Runway of Dreams. Runway of Dreams had just announced a momentous new partnership with Tommy Hilfiger, the American fashion icon. In an unprecedented move, Hilfiger’s company embraced Mindy’s vision and recognized there was a clear gap in the market; there was a need to sell adaptive clothing to people that needed it to live their lives to the fullest. The new partnership brand adapts clothing using magnetic closures to replace things like zippers, buttons, snaps, and hooks, making it easier for differently-abled kids to dress themselves. Suddenly, the ability to purchase such fashionable, adaptive clothing was only a click away at anyone’s computer! The news garnered tremendous press and engendered great public enthusiasm. One of my favorite interviews, was in Self magazine. There Mindy was asked, “What is most important about your work?” Scheier responded with something tangible and meaningful. “At a photo shoot, we had one boy that was 15 and had been in a wheelchair his whole life. We had him try on one of the shirts, and he said ‘this is the first time in my life I have ever been able to dress myself.’ There is nothing I can do or say that’s more powerful than that.”
As I reflect back on the week, I can’t help but feel humbled and grateful to know some incredible, forward-thinking people whose life’s work involves making the world a better place for others. Their valiant efforts remind me that I not only have an incredible responsibility to my own children to think outside the box on their behalf, but that those ideas can extend even more broadly. In that sense, whether or not we surround ourselves with actual mini-me’s, we all have the power and responsibility of influence. And, if we use it to its fullest potential, we help others not only down the runway of their dreams, we can even help them take flight into a new reality for all of us.