Monday, December 13, 2010

a marathon in an alcove

The photo that I would have - should have - taken today, was of the view that I had at roughly 2.15pm: two arms, stretched on their respective chair arms, each equipped with an IV. One was solidly wrapped in gauze, a rather stolid affair, complemented by the large rectangle of the board used to keep the elbow straight. The other was rather laissez-faire even with the board, with a hint of gauze near the IV, sliding under the skin with little more than a blush, or possibly a Tegaderm to cover it. Blocky and relaxed, the arms' owners stretched out in their chair, admiring Luke, as he battled his father.

There's good in you yet, said the hero, and we admired his idealism, while hoping he'll be really, truly fast on the defense. (And he was.)

We do an annual, day-long test at the hospital, studying the way that the Eldest's body responds to his clotting medications. For a variety of reasons, the Eldest's is not a typical drug, meet person, person, meet drug relationship. He tends to bash his clotting protein up a bit, argue a bit, and then settle down into a functional relationship. The pattern has held stable for the past five years, and with any luck, will continue - and be predictive only of his approach to molecular structures of limited size.

Judging from the second arm in that alcove, and the day's Star Wars marathon, it is. Stretching out my own legs, smiling at the other arm's mother, we mamas settled into our own alcove. A couple of feet away, a voice commented on how badly Palpatine had aged, while another muttered agreement. And a good thing rippled outwards from the shared IVs, into a better thing.

It's good to have a mellow day, relaxing in a freshly redesigned alcove and cosy armchair. It's better yet to share that day with a friend. And best yet, with a blood brother.*

And that is the photo that I wish I had taken. Dang, blast and blergh. Instead, the photo that I was able to take today was this one:

Many thanks to the chef(s) of the Children's cafeteria, who rescued an embarrassed mama who'd somehow provided two lunches to one child. The other, lunchless child, feasted happily on a fresh batch of french fries, made in a a closed kitchen with specially prepared, Imperfectly allergy-friendly deep fryer. I'd like to think that my ample supply of orange juice, cherries and crisp apples helped make today a gustatory pleasure, but let's be honest: fries? with appalling globs of ketchup? rock.

And so does Bill, who made them.
*men and boys with bleeding disorders call each other "blood brothers." For any number of reasons,whether the loneliness of the rare condition, or the ragged remains of the post-HIV/AIDS bleeding disorder community, the term is a particularly poignant one. Of course, the guys also call each other "bruisers," which goes to show that poignancy can only be sustained for so long, before - no. Better not to go there.

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