By NANCY MILROY
“My face looks like this. It doesn’t mean I’m any different from you. I have Otopalatodigital syndrome, a craniofacial disorder.”
When Joe Brooks, a junior music major at the University of Mary Washington, contacted me, I was unfamiliar with this syndrome and disorder. Joe handed me a pamphlet from the Children’s Craniofacial Association (CCA) and advised that I read it. Reaching out to the Humans of UMW community is part of Joe’s effort to inform us that September is Craniofacial Acceptance Month.
Craniofacial conditions vary, the most common being cleft lip and palate. You may be thinking, “Acceptance, sure. That’s easy.” But do you, reader, actually practice this?
Acceptance is more than the quick smile you formulate when you pass a person with craniofacial differences. Acceptance is recognizing an individual’s qualities without the motive to change them. CCA’s message of acceptance is that “beyond the face is a heart.”
When asked if he had faced a lack of acceptance at UMW, Joe replied, “Not on campus, no. It was in middle and elementary school when I did not feel accepted.”
However, Joe’s sentiment changed when he began to attend Cher’s Annual Family Retreat.
“I got this shirt in Arizona at the retreat. Children who have different craniofacial syndromes come together and are reminded that we are not alone, that we all have similar stories,” Joe said.
These stories are centered around the many surgeries that individuals with craniofacial disorders undergo. In 2009, Joe had a surgery that kept him in the hospital for three months.
At the close of the interview, I asked Joe a spotlight question traditional to Humans of UMW.
What is a metaphor for your life?
“My life is climbing mountains with rough terrain. I’ve had to climb different obstacles to get to where I am today. I’ve had to overcome the mountain of surgeries, the mountain of recovery, the mountain of proving to people that I can do things that they can do and the mountain of overcoming my own challenges.”
What mountain are you climbing now, and have you reached the top? If not, when will you?
“The mountain of graduating. I’m not on top yet, but I’m climbing.”