This past weekend, a friend and I attended the Partners Resource Network's Beyond the Ard Conference in Austin.
The hotel was incredible, and the conference was well-planned and a good experience for meeting parents across the state. It was wonderful to visit with people who are deeply invested in creating open playing fields for those with disabilities and the inclusion of a panel of individuals with disabilities was an important acknowledgement that the stakeholders in this are ultimately our children who will grow up to be leaders in the disability community. Our role is to support them and to create environments that allow them to reach their maximum potentials.
The conference closed with a presentation by Josh Hanagarne, the world's strongest librarian and an individual living with Tourette's. I wish I could remember the specific details of his talk--it had me crying throughout. He is without a doubt a man with a story to tell--not one of ultimate overcoming, but of persistence. Some things can't be cured, can't be overcome. They may be able to be improved, to be tackled, to be granted moments, even months, of grace, only to return in full force, a seeming betrayal. And the work begins all over again to learn to navigate the reoccurrence and to find a way to make peace with the latest hurdle suddenly thrown into one's way.
Grace is not a natural state. It is a state to be worked towards daily, to be honored and cherished when we have finally worked our way to it. It is not a state, though, that we get to and remain in. We are constantly falling in and out of grace, and it is up to us to find our way back to that state.
So when we are granted moments of bliss, let's remember them, record everything about that state so that we can hold onto it when we are in the thick of our lives, knowing that we will find our way back to that ephemeral state of grace.