Maddie's Mission

Have you seen her? So fine and pretty Fooled me with her style and ease And I feel her from across the room Yes, it's love in the third degree Ooh, baby, baby Won't-cha turn your head my way? Ooh, baby, baby Ah come on! Take a chance You're old enough to Dance the night away Whoa-oh, Come on girl, dance the night away It is a well-documented fact that the Crowley men are not dancers.  From Grandpa Tim, down to yours truly, we all must have been distracted when the good Lord handed out the dancing gene because we surely missed out.  Now I'm not saying we can't dance.  I'm saying we can't dance well.  OK, not even fairly well.  Sure, we can pull out rare moves at a family wedding, but in the end, video evidence verifies these were only haunting attempts at greatness. Curiously, the Crowley wives have not been impacted by the same genetic disorder. They glide from one end of the dance floor to the other and shift from one dance style to the next without...

Walk, walk, walk, walk... He said just Walk like a man Talk like a man Walk like a man my son No one's worth Crawling on the earth So walk like a man my son I am traveling this week with a colleague from Europe. He's in his 30's, full of energy and ambition, and was always the first one to jump at the late night dinners, the after party, and the paparazzi (kidding). However, since the last time I saw him he's changed a bit. The change is subtle and unless you've known him for a while you may not notice, but I saw it immediately. He now has a 5 month old daughter. A daughter, who has unexpectedly captured his heart and changed a person from one who loved to travel the world for business to one who can't wait to get home and be a Daddy. Depending on who you listen to, becoming a man has many definitions. They may be graduating from a university, moving out on your own, starting your career, getting married, etc. There is no doubt that all of these are ...

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 ...