Monday, June 18, 2012

Defying Gravity

Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!

It's time to try
Defying gravity
I think I'll try
Defying gravity
And you can't pull me down!

I'm through accepting limits
cause someone says they're so
Some things I cannot change
But till I try, I'll never know!

I never committed to having the steadiest hand in the crowd, but was sure I had this one. I thought about getting a tripod, but this was just another school concert. I’d been to many before and would attend many in the future. I expected her to sing just another song, but as soon as the first words came out it was clear I was wrong. What I heard was more than a solo. It was a statement. A statement of courage from a little girl who decided to look life in the eye and say, I will not be held down; I will Defy Gravity.

If you have followed this blog for any period of time you’d know that I am not an impartial judge when it comes to my kids’ performances. While I might be able to be tough on adults trying to break through on American Idol, America’s Got Talent, or X Factor, I’d give my own a 10 at the first note. One touch of emotion, one look in my eye, and I’m done. Yes, I admit it. All that aside, I was stunned that Thursday night, when Maddie took the stage. She’s taken a few singing lessons, belted out a few tunes in plays, but I did not expect this message, or then again, maybe I did.

When I was 11, I spent my time with pickup baseball games, paper football on the lunch tables, and generally doing my best to make it through Catholic School. My biggest challenge was math tables and making sure I kept my jokes quiet during weekly mass.  I faced no serious burdens only the wrong side of Sister Sarah’s wrath. This was no ruler or harsh word. It was much worse; the infamous, single space, handwritten, five page essay due the following day.  (Mine was on John Wayne.)  At the time I thought I was living on the edge (inside my carefully crafted suburban bubble), but boy was I wrong.

In contrast, when Maddie was 11, she was told by medical experts that her life would be filled with limitations. Her long term ability to walk was in question. She was to start a lifelong treatment with unclear results. She overheard others say they accepted their diagnosis and were not willing change their lives because of it. She felt alone and confused. Never once did I ever face such a challenge and am not sure what I would have done other than crawl up in a corner.  That is not Maddie's style. 

She decided to fight. She learned what she could understand, trusted her parents and caregivers, walked into Day Medicine with a smile on her face and bravery in her heart, and never, ever complained. Since that day things have gotten a bit clearer, the picture a bit rosier, and the future a bit brighter. I guess you could say it happened on its own and that she just had to wait for it. Or, you could say that in making the choice to be brave she changed her outlook.

That night when I started to video tape, I lost my steady hand. I didn’t shake because of what I saw, but because of what I heard. As I passed the camera to my son I realized I did not want to watch this through a lens. I wanted to take this in for myself. For that night a young girl was defining the way she planned to live and I didn’t want to miss it.

This past week the girls attended MDA Camp. I was pleased to hear Maddie sang again, this time at their talent show. I heard from a couple counselors that the room was silenced as she belted out her tune. This time it was a different crowd and a different song, but I hope the impact was the same. I hope at least one person was touched as I was. I hope at least one child who attended the camp, heard her voice, and quietly told themselves that despite their burden they too were going to make a statement. They too would put themselves in front of a crowd one day and tell the world that it is their turn to begin…Defying Gravity!

Bravo my dear. Bravo!
Matt

Here is a YouTube link to Maddie’s performance. Thankfully one of our friends had a tripod and took a great video. For some reason the video is a bit faster than the audio, but I promise you it is much better than the shaky one I took! I hope you enjoy it as much as we did.


Click here:
http://www.youtube.com/watch?v=4wKZsT7xp1s


Credit to: Wicked, “Defying Gravity”