Maddie's Mission

If I needed someone You're the one that I'd be thinking of If I needed someone If I had some more time to spend Then I guess I'd be with you my friend If I needed someone Did you ever meet someone out of the blue and just know you would be great friends?  I'm not quite sure why this happens.  Perhaps it is because of shared experiences, similar interests, or in my case someone's ability to tell a great story which usually ends with a punch line I never expected. Whatever the reason, the good thing is that it happens and after that moment your life is a bit better. Emma's Facebook page proves making friends is not a problem.  While all 369 of them are important, finding those special people with whom you can share your most private thoughts comes rarely.  Fortunately, she's been graced with a few who are so special we now consider them family.  They have traveled both smooth and rocky roads together and continue forward with inspiring dedication to ea...

And in the end 
 The love you take 
 Is equal to the love you make November 18, 2010 is our anniversary.  It is one year after we received Maddie's diagnosis of Pompe disease.  Over the past of couple months I've thought a lot about this day and what it means to us.  I discovered it means much more than a medical milestone and much more than what a Hallmark anniversary card can cover.  It means “family” because without the five of us relying on each other, with the support from our family in California and Oregon we would not be in this place today.  It means “advocacy” because by being our girls’ advocates it’s been possible for them to see the best doctors and get the best treatments.  It means “courage and inspiration” because our girls have shown us how inspiring real courage can be.  It means “friendship” because of those who have stood by us when times were tough.  But, above all else it means “love” because of what ...

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 ...