Maddie's Mission

Nightswimming deserves a quiet night The photograph on the dashboard, taken years ago, Turned around backwards so the windshield shows Every streetlight reveals the picture in reverse Still, it's so much clearer Nightswimming, remembering that night September's coming soon I'm pining for the moon And what if there were two Side by side in orbit Around the fairest sun? Growing up on Pritchard Street in the 70's came with a few perks.  We had plenty of kids to play with, flat neighborhood streets perfectly designed for long bike rides, open front yards for adventure, and just enough peculiar old people to fuel stories of mystery and intrigue late into the summer.  But, above all was the swimming pool. I'm sure there were pools all across the area, but for a little guy who's world revolved around a two block radius, we were the only ones and fortunate. At age seven nothing quite matched the freedom of your own pool.  In was the ideal place to spend summer days...

I watch the ripples change their size But never leave the stream Of warm impermanence and So the days float through my eyes But still the days seem the same And these children that you spit on As they try to change their worlds Are immune to your consultations They're quite aware of what they're going through Ch-ch-ch-ch-Changes Turn and face the strain Ch-ch-Changes Don't tell them to grow up and out of it Ch-ch-ch-ch-Changes Turn and face the strain Ch-ch-Changes Where's your shame You've left us up to our necks in it Time may change me But you can't trace time My Dad had a way of saying a lot with just a few words. When I would complain about the smallest change he would tell me, "It builds character." Once I became a teenager and figured it all out, my standard response became, "I think I have enough." Thankfully he repeated himself year after year. When I did not get accepted to my college of choice, the response wa...

Imagine all the people Living for today Imagine all the people
 Living life in peace  You may say that I'm a dreamer But I'm not the only one It's not often that I think of life without Pompe anymore.  It is so woven into our daily lives that it seems like it has always been here.  I am used to helping Maddie with her violin case because it can become heavy, reminding Emma to be careful not to trip on the stairs, or watching Donna and the girls pack up and head out for yet another treatment. Pompe has become something which I never thought it would - - routine.  So, as I sat in New York City I was surprised to find myself thinking of life without it. Last Wednesday night I attended a company Christmas dinner at Del Frisco's Steakhouse in New York City with about fifty of my co-workers.  As I sat in my chair overlooking the Avenue of the Americas to the left and the Fox News building on the right something caught my eye that I had missed in ...

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...