~Bianca passed out after her 1st birthday celebration~
In honor of EB Awareness Week I would like for you to take a moment and read the story of the inspirational Pat Barbrey. This is the one story we read 8 years ago that really put things in perspective for us all! While most of the information out there was informative the majority was very very bleak regarding diagnosis. I always held out hope for a more positive story filled w/hope, dreams come true and a little humor! If you know me I'm always trying to look for the positive in even the biggest negative!
That's when we stumbled upon the following story:
Pat's daughter, Gena, has been so influential in keeping her mother's memory and inspiring story alive! I cannot believe the determination in this family...it reminds me of the one I am blessed to be a part of today!
Today once again I stumbled upon yet another one of those stories that lifted me up to highest high! I saw pictures of this beautiful woman once before and said to myself "wow I can totally picture my own daughter in a white dress" (Rob on the other hand must be cringing at the thought). Her name is Monique.
As I was reading her story I kept pausing to reflect on how we are raising Bianca the same way Monique was raised. Bianca goes to school almost every day with the occasional miss. She has excelled in school since day one, I know she's only in 2nd grade but reading at an almost 4th grade level and a straight A student, well that makes us proud! We have our ritual Family Friday night out which, for a reason beyond our control, she manages to end the day with a toy of her choice! And we treasure our simple weekends together as a family ~ crazy dogs included. We do so much more than what was expected of us back '02.
Robert & I were literally saying "screw off" to EB from the day we learned about Bianca's diagnosis. Yes we accepted that we were in for a real roller coaster ride possibly not strapped in at all times but we said "let's do it". No one said that the journey of life was going to be an easy one. The routes change all the time...and we're going to get to our final destination one way or another. The only thing under our control is how we arrive. Whether it will be laughing all the way like Santa or hissing and puffing like the Grinch ~ you decide! The route? Well that's already programmed into our destiny's GPS system.