Throwback Thursday: MDA Telethon

Twenty-five years ago last weekend, 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 my little brother, 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.

Everyone has a disability... ours 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.

Choosing Life

"Here we go again, God," 
I breathe as my alarm starts to ring. 
"I don't know if I can do this thing called Life today..."
I lie still, 
blinking awake because I can do 
nothing else. 
I wait in the semi-light of dawn 
and wonder what this day will bring. 
"You can choose, you know," 
my Father whispers to me. 
"I always let you choose to live today or not.
Consider your choices, 
and choose what is best."

The sharp pain in my hip 
and the tingling in my foot
Forecast a day of stiffness 
and swelling. 
I take a deep breath 
Wheezing and rattling
And know my tasks for the morning will be 
Coughing and breathing. 
I want to stretch my arms and my back, 
But this blanket and gravity 
hold me fast. 
Glaring across the room, 
I weigh whether it would be better to 
Lay in this bed or 
sit in that wheelchair. 

My attendant - my friend - Maelynn -
opens the door and lets herself in
And sits in my chair, 
quietly waiting. 
She's giving me a choice, I realize.
She loves me and knows me, 
And is letting me choose 
to start my day. 

I think a little more about my aches and pains, 
And then I think about my patient friend, 
Whose joy and kindness warm my heart. 
I think about how beautiful musical poetry
Awaits in my CD player.
I think about Hannah and Kelsey and Pam
And how these friends will make me laugh today.
I think about my international students
Who will come to my home and call me "Tee-cha!"
I think about my African and Burmese teenagers
Who will make me crazy in the best possible ways. 
I think about all the mysterious and thrilling adventures 
Holding their breath, just waiting for me 
to sit up and start the day...
And who cares about pinched nerves when 
I have a Burmese baby brother named Sammy
Who gives me sloppy wet kisses? 

Life isn't measured in pain, but in joy -
And the joy of the Lord is my strength. 
Life isn't dependent on weakness, but on power -
And his power is made perfect in my weakness.
Life isn't defined by problems, but by purpose -
And He works in me day by day to fulfill his good purpose.
It isn't about what I can't do, but about what God can do -
And He can do all things. 

It is a choice - 
to give up or to have faith, 
to despair or to hope.

And today, I choose life.