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Surprise

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!

    The Daily Drip

    • September 3, 2010

      • On September 8th, One Less Car is hosting cyclist/cellist extraordinaire Ben Sollee for the Baltimore leg of his 2010 Ditch the Van Tour, a cross-country endeavor in which Sollee straps his cello onto the back of his bicycle and tours city-to-city without leaving a carbon footprint. “I love touring by bicycle!” Sollee writes on his [...]

      • Columnist Neal Peirce argues that demolishing old elevated highways, like Baltimore’s Jones Falls Expressway, would  heal communities destroyed by these remnants of the post-World-War II building boom. He notes that one place where this idea s being pushed lately is New Orleans, where there’s a move afoot to tear down  2.2 miles of the elevated [...]

    • September 2, 2010

      • Highlights from Investigative Voice’s coverage of pretrial deliberations, as three men go on trial for the 2008 killing of Baltimore City Councilmember Kenneth H. Harris. “You look at my face when you’re talking to me!” Circuit Court Judge David Ross said yesterday to Assistant State’s Attorney Cynthia M. Banks, who was reading from a notepad [...]

      • Here’s another opportunity for Baltimore bicyclists to assert themselves: city transportation officials are installing an automatic bike counter on the Fallsway. This comes from a bulletin from the city Department of Transportation, which tells cyclists to “just look for the diamond-shaped groove and ride over it. “If we have the traffic numbers and public support,” [...]

    • September 1, 2010

      • Mayor Stephanie Rawlings-Blake has announced that the famous Georgia-based Le Mans racing series will participate in the Baltimore Grand Prix racing events this weekend.

    More of the Daily Drip »

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