We have traveled to the supposed “best” seeking successful treatment for Harper, but what exactly does “the best” mean when they continually refuse to acknowledge your expertise of your child despite your personal detailed documentation. What we have discovered is that “the best” are those most knowledgable about documented cases but not the most willing to address the uncommon disorders from a necessary but uncommon perspective until formal documentation is published. It takes one! ONE DOCTOR WILLING to hear what several patients from around the world are saying as common similarities among a unique group of individuals. WHERE IS THAT DOCTOR!? HARPER AND SEVERAL OTHERS NEED YOU IN ORDER TO SURVIVE!!!
Lily’s love of Happy Meals took us to Mc Donald’s every other week and when passing the drive through window we always saw the donation bucket for the Ronald McDonald House. When taking Lily to her Doctor check ups we would walk pass the Easter Seals office window. It often crossed my mind as to what these entities were actually for and how they affected me but never did I figure that out until Harper came.
I realize now, it is never about how anything affects me but rather how I impact the lives of others!
