This has been a big month for my clan. We just got back from Disney and now we are off to the VACTERL Conference. Truth be told, I am looking forward to the conference more than I looked forward to Disney.
Disney is about suspending reality. It is pure fantasy. It is an escape to be sure, but it is not reality.
Ten years ago is about the time I first heard the word VACTERL. Ethan was born on the 12th of June and it was about this time of the month that the geneticist first put a word to the medical odyssey that we were beginning.
We call VACTERL the unwelcome house guest. We are a very happy family living with an annoying presence that very often dominates our lives. It sometimes feels like we are dealing with this monster alone. Our family is spread out across the country. And the incidence of VACTERL is rare enough that you are extremely unlikely to meet someone else who has even heard the ugly word.
But tonight that changes. Tonight our family becomes one of many dealing with a common foe. Tonight is not about fantasy; it is about facing reality with other unwilling hosts of this beast we call VACTERL. Tonight is a moment of solidarity, where we are safe in the knowledge that we are not alone.
I cannot wait.