I spent this weekend with my "river people" -- immediate family, extended family, and friends-who-might-as-well-be-family. The people who've known me since I was born and who, slowly, have been bringing their own friends and children into the clan. There was the baby, daughter of close family friends. Two sugar-and-spice-and-everything-nice girls who love to run around distributing hugs and demanding piggy-back rides. A pair of preteen sisters who used to demand piggy-back rides and now just stand back shyly aloof. Three male cousins, 15, 18, and 24, who seem to have suddenly morphed from endearing be inexplicable children into some creature entirely more nuanced and possibly even less explicable. A fairly ordinary group, in many respects. Perhaps with more love, trust, and respect than similar groups -- but, then, perhaps I'm biased.
And there's Sam. He's ten now, and he sits strapped into his own chair, contemplating the fire or reaching out to grasp at the nearest hand, face, or shirt. Grab his hands in yours (so he doesn't cling to something else instead) and lean in, sticking your nose right in front of his, and he starts to giggle. It's a contagious, gleeful sound. And he'll keep laughing as long as you're playing with him -- bopping your face in and out, making silly noises.
Sam has Angelman syndrome (http://www.angelman.org), a genetic condition characterized by easy laughter and affection. His parents are amazing: strong, patient, loving. I don't know how they do it; loving Sam is easy, but raising him must be extremely difficult. People with his condition develop, at most, a 5-10 word vocabulary. (Currently, Sam doesn't speak at all.) I don't know, because I've never asked, what Sam's medical expenses are, or whether the goverment assists in any way with them. But I wonder: what would Sam's life have been like if he had been born to parents with less personal strength or who didn't have high-paying jobs? And, furthermore, what responsibility does society hold to people like Sam and his parents?
We're all no more and no less than our own human selves, getting along in the world as well as our abilities allow. The acceptance that Sam's parents demonstrate inspires me to be both more forgiving of my own shortcomings and to (try to) understand the shortcomings of others. And Sam himself, with his happy giddiness, teaches another rudimentary lesson: spreading joy is worth more than most things in life. His condition, which seems at first glance to be a encumbrance, has its own advantages, too.
