With the diagnosis of PDH deficiency Cara is the victim of a staggeringly unlikely series of unfortunate events. While it would be momentarily palliative to use this occasion to restate my own agnosticism that would be self centered and counterproductive. However, this event has still prompted me to think about what we as a family need to thrive going forward. We thankfully find ourselves in a wellspring of medical support and therapeutic interventions, but given there is no cure we’ll continue to need emotional reserves and spiritual support for the long road ahead.
Of course, pity and platitudes will not get us to where we need to go. I would even go as far to say that we don’t need friends on this journey insomuch as we need allies. Conscripts in the fight to carve out a corner of the world where life need not be as difficult for Cara as it would otherwise be. A place where folks have the courage to practice empathy. Simple actions like dropping the word “retarded” your vocabulary, holding the door for someone in a wheelchair, or joining the “Carawatts” our Energy for Life Walk team.
Innovations have a hard time flowing from environments where there is a culture of denial of the problem space. You don’t have to bring solutions to the ongoing difficulties faced by those among us with atypical abilities. Having the conviction and awareness to not be part of the problem is enough.