Maddie's Mission

She told me to Walk this way! Talk this way! Walk this way! Talk this way! For those of you too young to remember, long before Steven Tyler was sitting behind the desk on American Idol, he had a little band in the 70's named Aerosmith. Then one day in the 80's, while practicing their well known song, RUN DMC knocked down the wall and created a masterpiece. In case you haven't heard or seen it, click here: Walk This Way On February 26th, we plan to be filled with the same energy and spirit, participating in the MDA's second annual Muscle Walk at the King of Prussia Mall in Pennsylvania. Our team, Crowley Crusade, will be walking along with many other MDA families to raise research money for muscular dystrophy. Last year, Crowley Crusade raised nearly $5000 for Pompe Disease research and this year our goal is to go even higher! Please sign up at http://www2.mda.org/goto/crowleycrusade , donate a few dollars, and walk a few laps with us to show support not only for our g...

I guess I shoulda known
  By the way you parked your car sideways
 That it wouldn't last

 See you're the kinda person
 That believes in makin' out once
 Love 'em and leave 'em fast

 But it was Saturday night
 I guess that makes it all right
 And you say what have I got to lose? 
 And honey I say

 Little red corvette
 Baby you're much to fast
 Little red corvette
 You need a love that's gonna last There are two sentences daughters say that drive fear through even the strongest of fathers. Even though you know it's just a matter of time before you'll hear them, you are still stunned when you do. They are signs of the thing you fear the most.  Your baby is growing up. The first sentence is, "Daddy, I have a boyfriend!" and the second is, "Daddy, I got my driver's license!" I try not to hide my head in the sand and deny that my daughter is getting older, but somehow it just happens. On...

How does it feel to be
  One of the beautiful people?
  Now that you know who you are
  What do you want to be?
  And have you travelled very far?
  Far as the eye can see.  Baby you're a rich man,  Baby you're a rich man,
  Baby you're a rich man too. This time of the year offers an odd mix of Christmas joy and New Year's anticipation. You'll find the rare station still playing classic Christmas carols, trying to retain the warmth of the season, while at the same time racks covered with paparazzi magazines listing the best things of 2011.  You'll find lists with the best news stories, best movies, best celebrities, best looking, the best scandals, and the best scoundrels. One list that never misses attention is the richest people.   We list those who have the most family wealth at the end of 2011, those who were paid the most money in 2011, and even those that lost the most money in 2011. S...

You tell me that you've got everything you want And your bird can sing But you don't get me, you don't get me When I was a teenager I thought my future was pre-determined. I didn't have the athletic ability to become a professional athlete nor the interest in becoming a lawyer. I was going to be a musician, writing songs, playing guitar, and singing in a band. I took the typical first step toward my goal, buying the first guitar in a pawn shop and taking lessons. Once a week I would head down to La Habra Music for lessons and each night I would slide on the turntable and play over the loud music coming out of my cheap speakers.  With the help of my teacher I was able to learn how to play chords, a couple simple riffs, and eventually my first song called "And Your Bird Can Sing" by some band named The Beatles. I must have played that song a hundred times, each time imagining the excitement of being on stage. Thankfully my parents were gracious enough to...

You say yes, I say no
 You say stop and I say go, go, go Oh, no You say goodbye and I say hello Hello, hello I don't know why you say goodbye I say hello Hello, hello Last July, I wrote the post Two of Us where I first shared the story of Mike Stanzione. As a reminder, Mike is a Pompe patient who has faced many of the same struggles other adult Pompe patients do, but with a twist.  While Mike had the same challenges with muscle weakness, respiratory deficiencies, etc., he wasn't able to manage them in the comfort of his home.  Rather, due to his 24 hour dependency on a ventilator and his health insurance, he was required to stay in a hospital.  The twist is Mike's hospital stay lasted over four years with no end in sight. When I met Mike last summer I was inspired.  I was inspired because despite the steadfast position from his insurance company who said he could not go home, he continued to believe that his stay was temporary. I was inspired...

I dig a pony Well you can celebrate anything you want Yes you can celebrate anything you want Ooh! Everything has got to be just like you want it to Because... It was a much simpler time when she began.  She was young and with the long flowing hair you expect to see on girls in elementary school.  The horse was at least three times her size so much so that she needed help just to make it up into the saddle. Once up there she did her best to control something that was clearly much larger and much stronger than she was.   At that time we had no idea that the muscle strength she struggled with would later be eclipsed by the strength of her heart to overcome her fear. I can't remember when she first asked to try it, but I do remember the first time she rode.   One benefit of living in the suburbs of Pennsylvania is the availability of horse stables and riding lessons.  After some research, we picked a place and  pulled into a gravel parking lot next to ...

Though I've tried before to tell her
 all the feelings I have for her in my heart
 Every time that I come near her
 I just lose my nerve as I've done from the start

  Every little thing she does is magic
  Everything she do just turns me on
  Even though my life before was tragic
  Now I know my love for her goes on  The other day I was tidying up the basement and came across a book titled, Don't Sweat the Small Stuff...and it's all small stuff and it got me thinking about our last visit to CHOP. The philosopher in me gets the idea that you shouldn't worry about the little things in life because somehow life continues on past the day to day woes. To be honest, I've preached the same story to my kids over and over again when they would come home with concerns that those of use who are "older and wiser" have overcome without bumps or bruises. Just when I thought I had it all figured out, I learned at CHOP that every little thing Madd...