Maddie's Mission

Well, I don't know why I came here tonight
 I got a feelin' that something ain't right
 I'm so scared in case I fall off my chair
 And I'm wonderin' how I'll get down those stairs
 Clowns to left of me, jokers to the right
 Here am I stuck in the middle with you

 Yes, I'm stuck in the middle with you
 And I'm wonderin' what it is I should do
 It's so hard to keep this smile from my face
 Losin' control, I'm all over the place
 Clowns to left of me, jokers to the right
 Here am I stuck in the middle with you All the signs were there, but I tried to ignore them.  The warm days of summer turned blustery, the school buses suddenly appeared, the leaves turned colors, and the radio started to play songs about a big jolly man in a funny red suit.  Yes, it's Open Enrollment season.   Open Enrollment is that special time of year when companies give their employees the opportunity to make health care choices for the upcoming year.  It...

Blackbird singing in the dead of night Take these broken wings and learn to fly
 All your life
 You were only waiting for this moment to arise

 Black bird singing in the dead of night
 Take these sunken eyes and learn to see
 All your life
 You were only waiting for this moment to be free Blackbird fly, Blackbird fly
 Into the light of the dark black night. When our family arrived at yesterday's MDA Muscle Summit at the Camden, NJ Aquarium I unexpectedly felt comfortable.  A year ago we would have politely excused ourselves from a room filled with people facing muscular dystrophies and moved to the room with all the "normal" people.  At that time, we did not yet have Maddie's diagnosis and believed everything was going to be taken care of in short order so we could move on with our lives.  But, this is a new year and our new life so we entered the room, with my presentation in hand and hopes for a good day. As a young kid, I remember watching the MDA Telethon on...

Try to see it my way, Do I have to keep on talking till I can't go on? While you see it your way, Run the risk of knowing that our love may soon be gone. We can work it out, We can work it out. Life is very short, and there's no time For fussing and fighting, my friend. I have always thought that it's a crime, So I will ask you once again. Last Saturday morning I did what a busy dad rarely has time to do, sit on the sofa and watch TV.  Fortunately there were no morning games to run off to and the lawn told me it wanted to enjoy another day looking unruly.  As I clicked channel after channel I found  endless debates.  There were debates about politics, about the NFL, about the MLB playoffs, and even an informercial debate on which detergent will give you the whitest whites.  Did you ever notice these debates never end?  There's no need because there is always time for another argument.  However, when it comes to rare diseases there is only so much ti...

I, I will be king
 And you, you will be queen
 Though nothing will drive them away
 We can beat them, just for one day
 We can be heroes, just for one day

 Though nothing, will keep us together
 We could steal time, just for one day
 We can be heroes, forever and ever
 What d'you say? When I was younger the word hero seemed to be more in style.  I had heroes all around.  They were Dr. J of the Sixers who could slam dunk like no other, the astronauts heading off into space, my father who was able to fix anything personal or material, the fireman who came to visit our school, and the entire Justice League.  Green Lantern was my favorite, but I don't remember if it was because of his cool ring and outfit or because my older brothers already chose the other ones.  (Sorry for the Super Hero diversion, back to the subject.)  Today, the "Hero" title seems tougher to achieve.  While many of us agree that the firemen who raced ...

One, two, three, four Can I run a little more? five, six, seven eight nine ten miles I love you. A, B, C, D Can you run along with me? E, F, G, H, I, J, I love you. Boom, bam, boom, Ooh my hip, Boom, bam, boom, There goes my knee, Boom, bam, boom, The finish line, Boom, bam, boom, Look at me! All together now, All together now, All together now, All together now, All together now, All together now... I'm a runner. All the signs are there... running shoes littering the garage, worn out 5K race t-shirts in the closet, the occasional aching knees, and the wish that maybe one day the passion to run a marathon will appear. Sometimes after miles and miles on the road I've wondered why I run. Seriously, why do people purposely leave the comfort of their sofa to find themselves miles from home with only a pair of worn out sneakers to get them back? Perhaps part of the reason is the adventure, part is to lose a few pounds, part is for therapy, or maybe part is also for something ...

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to... I never thought my life could be Anything but catastrophe But suddenly I begin to see A bit of good luck for me 'Cause I've got a golden ticket I've got a golden twinkle in my eye I never had a chance to shine Never a happy song to sing But suddenly half the world is mine What an amazing thing 'Cause I've got a golden ticket I've got a golden sun up in the sky And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this... You never give me your money You only...

The AMDA publishes a regular newsletter and contacted us for an article about our experience. Many of you already know the story, but I thought you might be interested. As a younger man I drove the finely paved Los Angeles freeways with ease. Like millions of others, I merged in and out of traffic, easily transferring from one on-ramp to the next at a speed only matched by the pace of city life. Everyone around seemed to follow the same path, eyes on the road, never stop to look around, and never look back. 
 
 Every so often I would notice a strange sight at a fork in the road. A car would have crashed right into the divider between one freeway and another. Why did this happen? Was it because the person was not paying attention, were not sure which direction to go, or were they frozen when forced to make a choice they weren’t prepared for? Whatever the reason I admit I always drove by with a bit of confusion and a bit of humor. After all, doesn’t everyone know which directi...