Today is International Wolf-Hirschhorn Syndrome/4p- Awareness Day. In support, we wear jeans (for rare genes) or blue. I’m going to pass the microphone to Fiona’s father today, who so eloquently wrote this:
Dear friend, Fiona my daughter has this rare genetic deletion by the spontaneous workings of the creative process. For many folks in my culture her 4p- diagnosis is seen as a problem or as a cosmic mistake. This way of seeing impoverishes the whole world and simply perpetuates the deep alienation we have with reality, especially one another. It is certainly true that her very life challenges so many of our cultural assumptions and it takes a certain level of stability and awareness to see these covertly active prejudices in us. To then see through these subtle constructs and prejudices, into the deeper mystery of life requires no small working of grace and is seemingly chock full of the repeated humiliation of finding that we had once again grasped hold of some delusive yardstick to life.
Fiona eats yardsticks for breakfast…. She makes the rest of us eat them too. They don’t make for easy chewing, but the empty bowl afterwards can make for a great hat, or seat, or ball target, or drum or bowl. And when you can eat with Fi, you might get knocked loose from your grippers and catch a glimpse of the great mystery….
Sincere blessings on this Wednesday of Holy Week.