Even after sitting in on the support group with so many well-informed parents, I still wasn't too sure about how Chromosome 18 syndromes worked, so I looked to the Genetics 101 session for answers. It turned out that I was in good company: while the Chromosome 18 Registry has worked hard to untangle the intricacies behind the condition, much remains unknown.

Listening to families talk about the great variation in their children's situations, along with the contradictory medical advice they have been given, I saw everyone at the conference as engaged in solving a great mystery. A mystery as small as a gene and as large as the expanse of each day that dawns with new challenges. The mother cradling a child's head towards the camera was holding a secret gently closed like a rosebud, and the parents energetically discussing speech therapies were piecing together a puzzle that would bridge the gap between them and their children.

"Mystery" is better than "problem" and more apt than "disability." A mystery is a companion. It is something you come to know and respect even as you dance with it and try to untangle it. You accept a mystery will have something of the unknowable, and this acceptance allows you a point of peace from which to go on with the task of living. Most importantly, a mystery has room for growth—the room that many parents wish doctors would allow their children before making dire pronouncements about their prognosis.