By JENNIFER BISHOP
Thanks to a tiny defect in a single gene, my eight year old son is nonverbal. Still, he tries out a few word approximations, usually at 3:00am. Waking in his bed, he chooses the privacy of darkness to sing and laugh, whinny like a horse, and sometimes exclaim “aachooo!” followed by more laughter.
Last night he said “surprise!”
He pronounces it “hupPIE!” But I know what he means. His older brother often tantalizes him with the word just before clobbering him with a feather pillow. They play the game of Surprise, gasping in glee, until the older one retreats and the younger one baits him, hopefully entreating “hupPIE?”
I am used to listening to his sounds from my bed in the dark at 3:00am. But to hear “surprise!” unbidden at that hour is both a shock and a revelation. And a profound truth. His life embodies surprise. The wonder that we should both be here to share this moment!
Each of us is born with multiple tiny genetic errors. My son’s glitch just happens to fall in an essential developmental pathway, all but destroying his ability to speak, swallow, grow and develop. Until this gene was discovered in his blood in 2004, doctors believed that humans could not survive an alteration in that particular pathway. Yet here he is, along with about 100 others worldwide, waking at 3:00am bursting with laughter. Surprise!
He was certainly a surprise to his parents who had the audacity to expect something more common. And to his brother, who had no expectations but finds no other brother like this among his peers.
Born to his parents late in life (surprise!) with a rare genetic defect (surprise!), his first few years were riddled with suspense, hospitalizations, surgeries, and great unknowns. Even his many mighty specialists at Hopkins shrug when asked for predictions or prognosis.
Although he is greatly impacted by this gene, in ways that might sap many of us of our joie de vivre, each routine moment of a new day seems to surprise and enrapture him. The speckled morning light on his pillow, a new scrambled egg, the joy of a striped shirt, the sudden arrival of the yellow bus, the reaquaintence with every familiar face, the delight of returning home again, even the cadence of familiar nursery rhymes never loses its amazement and pleasure. He relishes all.
And in the simple act of living his life he is painfully remaking my own view of everything, everything I thought I knew about myself and the world at large.
Surprise!
