Titling ‘Choosing Ourselves’

People ask about the title of the memoir I wrote with my son Jim.

The phrase Choosing Ourselves occurs in my narrative and in one of Jim’s poems. It became a working title that reminded us that choosing to write a story about our shared journey was important to each of us. We thought the publisher would change it to something catchier. Indeed, we kind of hoped they would, as the phrase had the unappealing ring of self-absorption. To our surprise the publisher liked our title. Maybe because it connotes chutzpah, an unabashed willingness to talk candidly about ourselves and to put ourselves at the center of the story. Never mind that we both had reservations about going public with such a personal account of our struggle. Over time, we became more comfortable with the chutzpah notion of telling our story warts and all and believing our story could be relevant to others.
We also liked the other connotations of the phrase. Choosing Ourselves can mean choosing to be with one another, to be aware of, care for, and see value in each other. This connotation carries enormous significance for a mother and son who sometimes found being together stressful.
A third connotation implies the act of choosing for ourselves rather than relying on others to choose for us. This posture has become vital in our becoming authorities on what mattered to us beyond what modern medicine could provide. It means we asserted ourselves in discussions with experts who may not have welcomed our opinions.

Of course, in the case of a child born with a serious birth defect or disability, parents (and later, adult child patients) follow the advice of experts. We are grateful for the knowledge and skills of the surgeons who performed the many surgeries that gave Jim an intact palate and lip. We are grateful for the orthodontists who rearranged Jim’s existing teeth and shored up the upper jaw that wanted to collapse inward. We are grateful to the speech therapists who assisted Jim to make the best s’s, d’s, and t’s possible given the misaligned front teeth and absence of a palate and flexible upper lip; and the Ear, Nose and Throat experts who inserted the tubes in his ears to reduce infections and enhance hearing. Even so, there were times when we made choices for reasons important to us to decline an elective lip repair, decide against orthodontia, and take a break in speech therapy.

In the end we embraced the nuanced meanings of “choosing ourselves,” even though in doing so, some may think we consider ourselves excessively important. To those who take this meaning, we can only say, after so often feeling too vulnerable, not able to speak to one another (let alone others) about vital moments in our lives, not speaking up for ourselves, not exercising choice, and thinking our story irrelevant to others, that daring to choose ourselves has been not only liberating, but empowering. And has made us more aware of our self-worth and worth to each other. Not a bad outcome.