Monday, September 2, 2013

MDA stars: Where are they now?

Twenty-four years ago today, my mom was untwisting my blonde hair from little sponge curlers that I somehow slept on the night before. She dressed me in my frilliest frock and used a whole can of hairspray in my poofy bangs, and we drove to Four Seasons Mall in Greensboro, NC. There, we found the bright balloons and glittery stars, the tables of volunteers on telephones, and the news reporters (anyone remember Cindy Farmer?) who would kneel down beside me and put a microphone in my face and prompt me to talk about how important it was for people to call in and pledge money so that kids "like me" could have the walkers, wheelchairs, and medical care we needed. Somewhere else - most likely Las Vegas - Jerry Lewis was in a bow tie, making jokes, telling stories, and urging people to give... and how could you look at a cute little Miss Muffet like me and not want to give?

The annual Labor Day telethon by MDA (The Muscular Dystrophy Association) was a big part of my childhood. Back then the telethon was an all-day event, but for me it was a year-round job. I was the poster child for several years - meeting the governor, Miss North Carolina, TV stars, race car drivers, corporate business CEOs, and the workers of the US Postal Service. My heart still smiles when I see local fire fighters out on street corners with fire boots, their fund raiser for MDA, or when I see people raising "bail money," or when the shamrocks start filling up storefront windows in March. I got to do some pretty incredible things and challenged the generosity of a lot of powerful people in those days, and I really did love being one of "Jerry's kids."

Kevan and Connie: "We are God's sibling trial!"

Today I was talking to Kevan about our childhood days of stardom, and what I could possibly write about us today in the sense of "Where are they now?" His response was this: "Well, we've beat all the odds." Powerful and true. I wonder how many people who met us as kids believed we would live the lives we have so far. There have been some scary close-calls for both of us, and there are some things we cannot do and have to depend on others for. But it is really amazing to me how much we have done and are doing. We aren't in denial of our disability - we know its effect on us and those we love, and when it comes up as an issue (whether political or personal) we face it head-on and fight for and encourage those who don't have the kind of amazing parents we had, or the resources and knowledge we've had.

But we don't allow our disability to define us or become an excuse for not living life fully and richly. I mean, I earned a Master's degree, work at a college, do life with incredible people in my dream-job ministry, traveled the country this summer, own my own car, and manage my own personal care. And my quality of life is pretty darn good, considering the minimal medicine and treatments I require.

I work hard to help people see past my wheelchair and my flimsy arms and wobbly neck and twisted feet and asymmetrical frame. It's not that I'm ashamed of my body and I don't cover up my weakness, but as a disciple of Christ, my life isn't about me or making people aware of me. I love to write and speak and teach, but my message is now about Jesus more than anything else - my disability isn't my platform, the gospel is; and my disability is just a backdrop to highlight the grace and power and faithfulness of God in my life.

Everyone has a disability... mine just looks more obvious than some. But think about what cripples, paralyzes, and weakens you. And instead of living as a victim of that, ask God how he can take even the worst of things and make it into something beautiful and powerful, to change the world and to bring him glory.

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