Today is World Duchenne Awareness Day (WDAD). Every year on the 7th of September this day rolls around and until 3 years ago I didn’t even know anything about it or Duchenne for that matter.
The reason for WDAD being held on the 7th day of September is the dystrophin gene which makes these boys unique is 79 exons long. In order for a person to make dystrophin which is necessary for muscle protection and repair, the entire sequence of the 79 exons must be read in order. Even one small error has a life altering impact for these boys.
Think of it a little like the telephone game we used to play as a kid. Most times the message would never be the same as it was when it started. Or one year I used “the wave” as an example. If it gets going around a stadium but one small section doesn’t get it right, it drastically affects how it flows from there on.
So in between my birthday and our anniversary in September, we have now added another day of celebration. My goal for this year for the month of September was to celebrate.
We started by celebrating our friends and family that have stood beside us, picked us up, or even carried us on our journey so far. And today I want to celebrate the opportunity to see blessings in the small things and not take anything for granted.
We have had wonderful opportunity to go on some adventures that we would not have been as open to 3 years ago. I would not have imagined having the garden we do or chickens, but because of our need to slow down for Cade we do. We even tried our hand at pheasant chicks this year with plans to do it again.
We have been on some bigger adventures too. But the thing I have noticed about our family since diagnosis, is that we are more open to possibilities that present themselves.
We no longer think in terms of too busy, but rather in can we manage it now or later.
We no longer think in terms of achievement in the worlds eyes, but rather does it make our eyes smile.
We no longer worry as much about schedule, but rather realize the beauty in spontaneity. (I still really like some of my routines though!)
But mostly, we no longer think of all that Cade can’t do or what he has lost, but rather all that he can do because of DMD. We have gained a strength and love in our family that I never knew was missing.
So Happy WDAD! Make it a great one in even your small endeavors!