The first time I had a steak salad was in New York. At a reasonably, although not overly ostentatious, fancy hotel called, I think, the Metropolitan. Remember, this is New York City. There are degrees of sophistication, elegance, and service that defy the imagination. In terms of Manhattan fancy, the Metropolitan is somewhere north of the 50 percent mark.
Anyway, it is most likely the winter of 1998. I am not yet pregnant with Edith, and Robert has had his crash, but he is not yet on a feeding tube. Robert is like a doll: he weighs about 22 or 23 pounds, his arms and legs are floppy, his clothes are still tiny, and he is propped up on the hotel bed with a strata of pillows in white linen cases. He smiles a lot, which covers for his disconcerting immobility. The three of us are in New York, possibly on our way to Vermont for the holidays, because Roger is on a business trip to the home office.
The Metropolitan is in Midtown, and the exterior wall of our room is a floor-to-ceiling sheet of windows that looks out onto the canyons of Manhattan and all the pinpoint white, blue, red, and yellow lights. Taxis are small in the crevices the streets make. The buildings unfold like large-scale origami into the darkening distance of early winter evenings.
The Metropolitan serves steak salad: slightly bitter greens contrasted with a gradient brown and soft red of the meat. The hotel restaurant also serves a mixed berry parfait for breakfast in a tall glass, the dusky blues and reds, the textures of the berries available for admiration.
Robert is not on a feeding tube yet, so we undoubtedly make a mess of the table. He likes berries, he likes the idea of steak, and the careful pressing of one small bit of food through his lips to see if it sticks before his tongue reflex pushes it back out results in a scatter of food debris on the white tablecloth. Undoubtedly, Robert lists to the right side in the high chair, while we reflexively prop him up and he smiles back at us. The staff are unfailingly oblivious to the ways in which we violate the norms of elegant pretension. Perhaps we are a relief.
We are worried, of course. But we have recently been to see a neurologist at a major medical center whom we think makes sense, although he admits to not having a single answer, nor a guarantee of what may happen next. The absence of answers is, in fact, a relief.
Over the last several months, since the summer, Robert has undergone countless unsettling medical tests. His chart at Georgetown Pediatrics is pushing toward the two-inch-thick mark, and is in perpetual disarray. I have thumbed through this chart and marveled at the range of medical terms, the variety of the tests. The chart is not a roadmap or a narrative--it is a variety of berries tumbled into a glass. Some of the tests are simply blood or urine lab results, all done at the hospital lab. Others are stamped with the names of clinics and labs across the country. It seems no stone has been left unturned.
Each of these more sophisticated tests and the spare elegance of results laid out in neat tables across the white of the page, each of these tests is for an illness, a disease, a failure of the genome or the body's processes that is, in fact, the worst thing we have imagined yet. The worst thing any parent can imagine. Each time Robert fails or passes these tests (it depends on your perspective), another bullet is dodged. We come to see the tests as an obstacle course in which a single positive finding will end our race. To what, you might ask? We don't know where the finish line is, we just know we are forced to run this race, we just know there will continue to be obstacles in the form of blood draws and samples of other bodily fluids, electrodes and needles, physicians staring at him and us with slightly narrowed eyes.
Negative. Normal. Normal. Negative. Negative. We congratulate ourselves and Robert with each finding. This is like applying to college and flying through the SATs and AP tests and application essays--in some photographic negative or alternative universe. We are winning! If there are no answers, surely, we are winning. Because no one wants any of these answers. I have deliberately blocked out the names of the diseases and syndromes over time as a matter of personal survival.
The chart and its thick sheaf of non-findings. The diseases forgotten and nameless, stuffed in a paper grocery bag on the bottom rack of a cart in a dark parking lot in Bethesda.