Tuesday, March 08, 2011

Not so many days ago, I was on the George Washington Parkway, or the GW Parkway, for those who are local. I was headed south. In that direction, the parkway is a long, graceful freefall down the slopes of Virginia toward the river--mile upon mile of low stone walls, trees bare in the pre-spring, debris of last fall's leaves, everything a differentiated fawn color. The trees flicker by, real alternating with shadow in staccato as the car drops with each mile lower.

I like this time of year--nothing is 'pretty' on the parkway, just various shades of brown, but the palette is the color of attentiveness. Sure, brown is dull, but this range of color is the color of waiting, of expectation. An expectation of pale green, buds dotting the branches, the spears of plants about to rise. 'Barren' might be the word to reach for, but barren it is not. Fertility in disguise.

I'd crossed over from Maryland into Virginia via the Beltway and was on my way to a meeting in Northern Virginia. It was the weekend, and traffic was light.

Two lanes in each direction, the parkway has no shoulders and all the long downward glide, it curves gradually one way and then the other. To the left is the long drop to the Potomac, but the trees hide that, hide the rapids at Great Falls, until the river is visible as the slope begins to level out, the river now broad, placid and unhurried--university boathouses small on its opposite shore--until the road ducks under the giant arch of the Key Bridge and the traffic thickens and other roadways converge and merge and otherwise nest into a disorienting knot as the parkway winds through landmarks, the famous DC monuments visible across the river.

Then a shift to interstate as my route delves into another knot of highways. I'm a bit afraid of getting lost.

Driving into Northern Virginia, for people from the opposite shore, is a foray into the unknown known, where everything seems familiar, yet you must think quickly or be routed away from your destination and toward a city whose name you know, but with an unfamiliar street plan. Everything seems in reach, but a wrong turn could lead to 30 minutes of uncertain backtracking.

The day before, we'd taken Robert to Children's National Medical Center in DC for an appointment with Dr. Andrea Gropman, a mitochondrial specialist. Children's, also, is an unknown known, the treatment center we gradually left between 2006 and 2008.

The entry and hallways were still the same. Parking was still a nightmare. But the neurogenetics clinic was new and friendly, with fresh paint and bright colors and large wall stickers of kid-friendly characters.

Clinic is a crossroads of doctors and residents and medical students and genetic counselors, nurses and others. Some of this was familiar: the case history by the resident with the medical students looking on. Some of it was not: when we left Children's a few years ago, Robert had an "unknown neuromuscular disease." Few people know what to do with a child with an unknown disorder. For many, he was static as a stump--barren, without green shoots or leaves.

He returned as a child with a probable mitochondrial disorder, with a brain scan that says Leigh's syndrome. Unsure what to expect, I kept myself close, ready to put up my defenses. I had expected, as prognosis, a one-way freefall toward further deterioration. On the web, the same single paragraph about Leigh's persists through multiple iterations of search terms and web pages. The paragraph is grim.

But here, in the clinic with the freshly painted white walls and bright colors and Superman and Sponge Bob decorations, we learned that life, as always, is more complex than we imagine it to be. Yes, a tangle of highways that merge and converge--a route that may still be disorienting, that may take us to a destination we recognize or re-route us toward a city whose streets we've never known.

Every child with mitochondrial disease is different, said the genetic counselor, a cheery woman with an enviable liveliness. Even children with the same syndrome and the exact same genetic defect can have very different outcomes. We should think of Robert as living for years and years.

There's more to tell: a central place to monitor Robert's medications and supplements, more conversations with Keith Hyland about Robert's neurotransmitter deficits (which are not part of the syndrome, necessarily), what may be a re-routing of Robert's services back to Children's, the eventual development of a treatment plan. That kids with mito may have bad years and regress, followed by good years in which they recover and stabilize.

But none of this matters. The future is still uncertain, but the river to our left, out of sight, mostly, is broad and placid. For now. We know everything; we know nothing. Life flickers by, alternating what we know and what we don't, but the world is expectant again and green shoots may still rise among all this mottled brown shadow.

3 comments:

Elizabeth said...

This is profound news, and you've told it well -- in all its hope and ambiguity. I wish for continued green -- evergreen.

Sara said...

This is beautiful, beautiful, beautiful. So many prayers your way, Jeneva.

Dale said...

(o)