Maddie's Mission

Oh, flew in from Miami Beach B.O.A.C. Didn't get to bed last night On the way the paper bag was on my knee Man I had a dreadful flight I'm back in the U.S.S.R. You don't know how lucky you are boy Back in the U.S.S.R. Been away so long I hardly knew the place Gee it's good to be back home Leave it till tomorrow to unpack my case Honey disconnect the phone I'm back in the U.S.S.R. You don't know how lucky you are boy Back in the U.S. Back in the U.S. Back in the U.S.S.R. Writing a blog is an interesting experience because it is so interactive.  It is much different than writing a book where the reader has little opportunity to respond to the writer.  A blog offers the opportunity for the back and forth communication which makes the process so much more appealing to me.  In the early days we received tons of comments on each post because the emotion was high and each post was full of new information about a disease no one had heard about.  Over time, the comment...

Here come old flat top He come groovin' up slowly He got joo joo eyeballs He one holy rollers He got hair down to his knee Got to be a joker He just do what he please He wear no shoeshine He got toe jam football He got monkey finger He shoot Coca Cola He say I know you, you know me One thing I can tell you is You got to be free Come together, right now Over me Many years ago I was that guy in the car next to you...singing along to FM radio and using the steering wheel as a drum set.  Unless the singer was clear or I was lucky enough to find an album with liner notes, I had no idea what the lyrics were so filled them in with something that sounded right.   One song that challenged me over and over again was The Beatles "Come Together".  Despite many mumbles and guesses, I could never figure out the lyrics or what they all meant.  While it might have meant more if I knew the lyrics, I was perfectly fine as long as I could belt out the message " Come t...

Hello darkness, my old friend I've come to talk with you again Because a vision softly creeping Left its seeds while I was sleeping And the vision that was planted in my brain Still remains Within the sound of silence "Fools", said I, "You do not know Silence like a cancer grows Hear my words that I might teach you Take my arms that I might reach you" But my words, like silent raindrops fell And echoed In the wells of silence It was late 1999 when I first found myself inside that dark, silent  place.  A few days before I suffered a Grand mal seizure, was taken to the hospital and told I had a foreign mass in my brain and that only a MRI could confirm what it was.  As I lay there, still as could be, my mind raced.  I was a young father with a potential life threatening diagnosis and all I could think about is having more time to be with my wife and watch my kids grow.  At the same time I was no fool.  I knew that my case did not look good and that the pi...

I'm so tired, I haven't slept a wink I'm so tired, my mind is on the blink I wonder should I get up and fix myself a drink No, no, no. I'm so tired I don't know what to do I'm so tired my mind is set on you I wonder should I call you but I know what you would do You'd say I'm putting you on But it's no joke, it's doing me harm You know I can't sleep, I can't stop my brain You know it's three weeks, I'm going insane You know I'd give you everything I've got for a little peace of mind A few definitions: Pompe Disease  = Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages. Mononucleosis  = a common illness that can leave  you feeling tired and weak for weeks or months. Pompe + Mononucleosis  = A nasty mix which leaves you with just one thing to say ...  I'm So Tired! Back in December 2009 I first mentioned Mononucleosis in the post  The...

You, who are on the road Must have a code that you can live by And so become yourself B ecause the past is just a good bye. Teach your children well Their father's hell Did slowly go by And feed them on your dreams The one they picks The one you'll know by Don't you ever ask them why If they told you, you will cry So just look at them and sigh And know they love you The answer to the question, "What would you do if you won the lottery?", always intrigued me as it offers a window into a person's true ambitions.  If all financial road blocks were removed and all financial responsibilities were met, what would you do?  The immediate response is usually, "I'd quit!"  OK, but what then?  After all, most of us couldn't just sit on the sofa and watch television for the rest of our lives.  OK, at least some of us couldn't.   For me the answer is simple.  I would spend more time with my family and I would teach.  ...