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 https://maddiesmission.blogspot.com/2013/10/what-wonderful-world.html , 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
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 maddiesmission.blogspot.com/heroes ) 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