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”

Sunday, June 3, 2012

Across the Universe

Images of broken light, which 
Dance before me like a million eyes,
They call me on and on across the universe.
Thoughts meander like a
Restless wind inside a letter box
They tumble blindly as they make their way across the universe.

Nothing's gonna change my world
Nothing's gonna change my world
Nothing's gonna change my world
Nothing's gonna change my world


Many years ago he told me it took him his whole life to find out what he really wanted to be. At first it sounded a bit sad, but when you saw the joy in his eyes and heard the excitement in his voice, any hint of sadness was washed away and replaced with a broad smile. Years after playing the corporate game with the politics and repetition, he had found peace in a new profession. Who could have guessed it would be at age 70 and as a volunteer fireman?

As you may have read in blog posts before, we have become active supporters of the MDA: speaking at events, gathering with friends to raise money, and meeting some wonderful people from all walks of life. Recently Maddie and I were asked to join their Fill the Boot fundraiser kick-off meeting in Harrisburg, PA. The Fill the Boot campaign began back in 1953 when a Boston fire fighter inspired his colleagues to raise money for a friend who had two boys with muscular dystrophy and has expanded since. (That friend's name was Charlie Crowley, which is odd, but no known relation.) Over the years, fire fighters have stood on street corners, boots in hand, raising money for kids with muscular dystrophy. Since 1953 the International Association of Fire Fighters have raised $435,000,000!

When Maddie and I were asked to come at speak at the event, she was excited and I was nervous. Maddie had recently been named the Pennsylvania State Goodwill Ambassador and was eager to get to work. I had spoke about our story in front of corporate groups, families, and others, but never in front of this group. My default was to present the same slides I had done so many times before, but something was driving me to tell a different story so I could not only motivate this group to hit the streets with vigor, but also offer them a connection to what they do. At first I did not understand, so set is aside.

I sat for some time staring at a blank computer screen trying to come up with the right words, but they did not come. And then, out of the blue, it hit me.  My normal story just would not do. I had an important story to share and this just might be the only chance I'd have to share it. So, I opened up my photo files and searched.


On the drive to Harrisburg Maddie and I talked about life, school, friends, and any old thing she wanted. We played the alphabet game, watched one town pass after another, and enjoyed the quiet. For those of you who have teenage children, you can appreciate how busy life can be going from one event to another. The opportunity to share moments of solitude with your children is a treasure.

When we arrived at the hotel and started to meet the fire fighters from across Pennsylvania I became nervous. I had practiced my speech and had to make sure it was right. I felt an obligation to ensure my message was passed on clearly and that it left the group with the same level of inspiration that it gave me.  When it was our turn, Maddie and I stood up and off we went.

I started the presentation with a short introduction and explanation about Pompe.  I then told them that I would not share the usual story of our experiences since diagnosis. Today was special.  Today I would share the story of another fire fighter who once said, "there is something special about that one" when he referred to our Maddie. I offered them four dates: 1928, 1993, 1998, and 2004. The first was the date of his birth, the second was the date of his retirement, the third was the date he discovered what he wanted to be, and the last was his passing.

I told the story of a man who got involved in his little retirement area, in California's high desert.  Through doing so, he noticed something was missing and just like he had done so many times before, he went about to fix it. He raised awareness, raised money, and helped the community invest in a new fire vehicle.  He went further by inspiring others to become volunteer fire fighters and then decided it was the thing for him as well. After standing on the sidelines, he became a volunteer, fought mountain fires, house fires, saved crash victims, and became a member of the fire fighter brotherhood.  Years later, those brothers stood by him when he fell ill and later by his family as their trucks lead us all to his resting place.

My story did not end there. It continued with a story of inspiration. By sharing photos, I explained that his dedication to fire fighters lives on. I told them how his inspiration guided his grandson's decision to become a San Diego fire fighter. I also told of his grand daughter's commitment to help inspire others including here today. While she may lack the strength to match the physical challenges of fire fighting, she was dedicated to help where she could. I stood at the podium with pride as the photos were revealed one after another. This was the story I wanted to tell because this man was more than a firefighter. He was my father, John Crowley, and one of their brothers.  While he wouldn't be there to stand on the street corners with them, he would be with them in spirit.

Maddie and I finished our presentation together. I mentioned a few lessons we have learned along the way. Maddie said a few words about herself and then what the MDA means to her, her sister, and to her friends. She spoke about fund raising for treatments those she knew that had none. She spoke about her anticipation for MDA Camp and that she loves when the firefighters come there to make dinner. Best BBQ ever! She then thanked them for what they do and for offering hope to everyone with muscular dystrophy.

Here are some of the photos I shared at the end of my presentation:

Fighting a house fire.

 
In uniform.


His son and grandson, the San Diego fireman.

 
His grandson (middle) at work.

 
                                His grand daughter with all the gear.

A few weeks past and I moved on to the other issues of life. There were school events to attend, work to be done, and blogs to be written. We then met up with some of the MDA staff that attended the event. As we relaxed, one approached me and told me she had a photo from my speech, which she wanted to share because there was something special about it. She had taken it at the Fill the Boot event when I was talking of inspiration and sharing photos. When she showed it to me I just smiled.

As you can see below, it's a photo of me at the podium and my dad on the screen.



Maybe it was the lighting in the room; the angle of the picture, or just maybe it was a little divine touch. Either way, that photo showed a son proudly speaking of his father and a dad whose face seems to have taken on extra color and come to life. I'm not saying it was hocus pocus or mystical magic. All I know is that it was a moment, captured in time, when a man appeared to reconfirm he was right all those years ago when he looked at Maddie and said, "there is something special about that one". From Across the Universe he saw that his little grand daughter was working hard to inspire at least one more fire fighter to volunteer to help others, just like he had done so many years before.

So, the ending of the song says, "Nothing's gonna change my world," but I don't believe it. I don't because I've witnessed a team of dedicated firefighters, a grand daughter, and a father do just that.

Thanks for reading,
Matt

Credit to: The Beatles, "Across the Universe"