Maddie's Mission

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. Some of these stories are

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 by his

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 an aging stable.  The sto

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

When I wake up early in the morning Lift my head, I'm still yawning When I'm in the middle of a dream Stay in bed, float up stream Please, don't wake me, no, don't shake me Leave me where I am - I'm only sleeping Everybody seems to think I'm lazy I don't mind, I think they're crazy Running everywhere at such a speed Till they find there's no need Please, don't spoil my day, I'm miles away And after all - I'm only sleeping As the youngest of six, I looked up to my older siblings for a variety of reasons, but when it came to sleeping in, Michael was the ace.  Of course there were other things that made him cool including his willingness to let his younger brother hang out with the older dudes (as long as I promised not to speak), his skill rebuilding customized VW engines in lightning speed, his fried bologna sandwiches, and his ability to make me laugh so hard my sides would ache.  While each of these deserves their own story, ex

I could see it was a rough-cut Tuesday Slow-motion weekdays stare me down Her lipstick reflex got me wound There were no defects to be found Snapshot image froze without a sound Freeze Frame! Freeze Frame! Freeze Frame! Freeze Frame! Freeze Frame! Now Freeze! I am usually the one taking the photos.  Just like my dad, I find it more interesting to take photos than to pose in them.  I prefer to be the clown behind the camera getting others to smile or better yet, grabbing that innocent pose they weren't expecting.  This interest is helpful, as God did not necessarily grant me a face ready for GQ magazine or the patience to sit and say "Cheese!”  Fortunately, I was lucky enough to marry someone whose good looks and patience were past down to my kids so when Genzyme called requesting a photo shoot I was OK to sit back and watch.  Our photographer Chris flew straight from recording the tornado damage in Tupelo and arrived at our house Sunday morning at 10 AM with two bag

Two of us sending postcards writing letters on my wall You and me burning matches lifting latches on our way back home We're on our way home We're on our way home We're going home You and I have memories longer than the road that stretches out ahead Back in the day before CNN, DVDs, and flat screens, there was something called television.   Not satellite television or on-demand television, just television.   For the benefit of those who are two young to remember, TVs used to be a big box with one dial, rabbit ears, and channels from 1-13, if you were lucky.   Growing up in Southern California’s 70’s, the line-up was simple.   Channels 2, 4, and 7 were the networks; 5 and 9 were the locals; channel 6 was PBS; and the others ran programs I usually ignored.   During the week, you had Sesame Street and The Electric Company in the morning, and The Brady Bunch and Adam 12 after school.   Saturday morning meant Bugs Bunny and Sunday meant Popeye . In those days

And you may find yourself living in a shotgun shack And you may find yourself in another part of the world And you may find yourself behind the wheel of a large automobile And you may find yourself in a beautiful house, with a beautiful wife And you may ask yourself-Well...How did I get here? Letting the days go by, let the water hold me down Letting the days go by, water flowing underground Into the blue again, after the money's gone Once in a lifetime, water flowing underground Wikipedia defines déjà vu as the feeling that one has already witnessed or experienced a situation. While I don't believe in previous lives, old souls, and all that stuff, I must admit to having that déjà vu feeling before.  While strange, it can be somewhat comforting especially when you try to figure out what to do next.  If I have been here before it must all work out, right?  Unfortunately, I could not find a definition for the feeling you have when you realize you have just