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Learning To Fly

Well, I started out down a dirty road Started out all alone And the sun went down as I crossed the hill And the town lit up and the world got still I'm learning to fly, but I ain't got wings Coming down is the hardest thing It’s hard to believe that five years has passed since our last post in October 2013.   In , we shared a video interview highlighting the girls’ lives and next steps.   Emma was getting ready to head off to college and Maddie was preparing to be a high school freshman. About the same time, we took the decision to put the blog on hold so the girls could be who they wanted to be without a blog reminding them of the challenges they face.   Now that some time has passed, we have decided to return to sharing stories about our lives.   So, in honor of Disability Awareness Month, we wanted to offer a summary of what we have been up to over the past few years.   Emma attended Ur
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What A Wonderful World

I see trees of green, red roses too I see them bloom for me and you And I think to myself, what a wonderful world I see skies so blue and clouds of white The bright blessed day, the dark sacred night And I think to myself, what a wonderful world In September 2010 I posted an update titled  Heroes  where I highlighted Emma's recognition of some amazing people she met early in her Pompe adventure. (See )  Since that time we have met many others from doctors, to researchers, and fellow Pompe travelers.  I could probably write post after post about their importance, but today I will focus on just one.  Today I'd like to mention someone who continues to use his skills to give a voice to those who are sometimes forgotten.  By doing so, he has left a lasting impression on me.  And, by doing so, he has reminded the Crowleys that despite hardship and challenge, we truly live in a wonderful world.   If you live in the Phi


Well, a-beat the drum and hold the phone The sun came out today We're born again, there's new grass on the field A-roundin' third and headed for home It's a brown-eyed handsome man Anyone can understand the way I feel Oh, put me in coach, I'm ready to play today Put me in coach, I'm ready to play today Look at me, I can be centerfield This past summer our local Little League boys went for quite a run, winning the state championship, landing on ESPN, and coming up just shy of heading to the Little World Series. It was great to see boys that we've known for years mature into a special moment that they will remember for the rest of their lives. As I sat and watched the games I thought back to another championship that may not have gained the fame of this year’s team, but sure brought a bit of excitement to our house. The 2009 girls’ softball season arrived right on time.  The cool of winter was behind us and spring was in f

Sail on Silver Girl

When you're weary Feeling small When tears are in your eyes I will dry them all I'm on your side When times get rough And friends just can't be found Like a bridge over troubled water I will lay me down Like a bridge over troubled water I will lay me down Some posts come to me in a flash. I hear a song or think of a recent event and they are there just waiting to be written.  Very few are thought out and planned far in advance.  This is the latter.  I saw this one coming far before I began to write a blog or we knew anything about Pompe.  I saw it coming the first time I watched her walk away. The strange thing is I encouraged her to do this twice.   Both times I made a promise to always be there for her. The difference this time is she's not coming home for an afternoon snack and a nap.   The first time was elementary school.  This time it's college. During Emma's graduation party, a good friend of mine told me he realized some time ago that he was

When You Wish Upon A Star

When you wish upon a star Makes no difference who you are Anything your heart desires Will come to you If your heart is in your dream No request is too extreme When you wish upon a star As dreamers do When the idea was first presented to her, she quickly dismissed it.  She said she could not accept as there were others much more deserving than her.  Over time we kept the idea alive through the occasional reminder and dinner table discussion, but the door remained closed.  That was until one special night when magic happened and she accepted to wish upon a star. For those who don’t know, the Make A Wish ® Foundation is a wonderful organization that focuses on granting wishes to children with life-threatening medical conditions.   In a world that seems to be filled with negativity and constant challenge, this group moves forward with their mission day in and day out.  They do not do it for publicity or for the rich and famous.   As defined on their webpage they pursue their