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.

a wince, a wheeze

Oh, BlogPress, won't you let my postlets go? You've gone and eaten a picture-rich Chanuka post, written expressly for the absent grandparents, and hello? Greedy guts? Chanuka's over.

(grump, grump, grump, grump)

Oh, but who can stay grumpy when the kid's turning red and shuddering with laughter at my elbow? It is apparently beyond hilarious that, after being corralled by his domineering mother, he forgot - and crocheted ten stitches in the wrong direction. Think of a dash, written on top of a long pair of parallel lines, and then add momentum. Reaching for the next set of loops, the kid had to wrangle himself into a pause long enough to figure out what had happened. Laugh with me, he's inviting. I'm absurd, I'm contagiously ridiculous.

And now he's toppled over. And is writhing with silent, percussive laughter on the floor. I do believe that I'm being invited to pause, and admire his commitment to the role. Yes? Ah. Yes.

I'm happy to beam at him, as much for his own pleasure in his humor, as for the kid as a whole. Oh, but it's been a good few months for the boy. A year and more of things starting to fall into place...lessee. Need a narrative starting point, um - ah.

About 18-20 months ago, our car was periodically noisy. The Eldest would get in, pause, explode. Cause? bah, said the explosion. Causes are for lesser minds in search of a trigger for moments of emotional emphasis. 

Right, said the mama. And learned that one cannot duck effectively while wearing a seatbelt. Nor while keeping an eye on the road.

When the explosion was on coffee break, the car would be offered the dulcet tones of the whinge. My seatbelt's too tight, we'd be informed. Or, failing that, my shirt is too tight on me - why do you buy such things? Fists would fly in the back seat, the whinge would climb towards a shriek, and the mama towards a roar. Oh, it was a grand, grand time. And in the classroom, it was no better.

Let's talk about behavior, the teachers would say. He's definitely a class clown, but the trouble is that he doesn't - stop. I ended one parent-teacher conference with my head in my hands, and a teacher reassuring me, but we still love him! and thinking, sure. For now. And on the day when I was requested to take the kid home, after an out-of-control episode, I sat in the car, staring at the Eldest.


What happened?
The kid looked at me, his eyes clear and troubled. I don't know.
I looked back, searching, and found only that I believed the kid -  and realizing that, wavered on the edge of tears. And so did he.

When we leveled the asthma question at the doctors, at the kid, it was a wavering, wobbly one. The kid's lung capacity was 100% of the expected capacity for a child his age and size. But there it was, the tight chest, the rapid, gasping breath, the sudden snaps of irritability and nervous energy. Anxiety can make things worse, said our pediatrician, thoughtfully, and we all nodded. So can patterns, habits of emotional response, I mused. And internally, quailed. Anxiety is an old friend, and a squishy, oozing one. Hard to get a grip on the dude, but he's always lurking and at least familiar. But not, in our lad, pathological. Diagnoses carry their own burden, but they can also set you free - giving tools specific to that diagnosis, tested Things To Try, and that crucial short list of Things That Just Suck. I considered oozy, slippery ordinary kid stuff, and weighed it against the crush and weight of the diagnosis. And rather preferred the medical to the mundane. Did we get to choose?

Maybe. Maybe not.

What if it is anxiety? What if it isn't? The allergist and pediatrician urged us to try a month-long course of preventative asthma medicine. A couple of puffs of the inhaler in the morning, a pair at night. Tracking his lung capacity each time, looking to see if the big dips in capacity drop as the month goes one - and as the kid relaxes. We hesitated for a long pair of months. Steroids, even in low doses - daily? And yet, prophylactic medicine is something he knows, something that he's seen us trust to control bleeding. Can he let himself trust prophylaxis to control breathing, as well?

He could. And hugged his lung capacity measurements, the p'flometer, he called it, using them to reassure himself that all might just, possibly be well. A few weeks later, those lung capacity numbers trailed into relative unreliability. pphhhht, blew the kid, and rolled his eyes. And PUHPHHHHHHHHHTTTT! blew the kid. Thanks for the data points, the Man sighed, and tossed a third of them. But nobody could argue with the jump. His lung capacity increased by 42.2% (saith the Man), and we all stared. He's making his own rules again,  I muttered.

And grinned.

The teachers smiled back, politely puzzled. He's the class clown, they told me, and waited to see if I winced. I did, dropping my head onto one hand. But he can stop when he needs to, they told me. And his sense of humor is really quite good. Inexplicably, I began to choke. Swallowed. Resisted the urge to wheeze. There are class clowns who aren't funny? A twinkle from the teacher on the end of the table, and, oh, she said gently. Oh, yes.


And winced.

quiet in the head

I'm entangled with yarn today, and the warm - almost ruthlessly warm - sunshine is falling just so, through the windows and onto me, the yarn, and the bowl of browned butter-and-edamame garlic pasta. Or, rather, what's left of the pasta - the boys, who loudly bowled out the door not five minutes ago, ate most of it.

(heh)

Wait - what? Oh. Yes, I left you in the middle of a story. A hike was about to happen, I know, I know. And oh, yes. Sorry - when I left you, the Eldest wasn't eating things like butter. There was this dairy allergy (and a few others). Um. Well, look: here's the deal.

Blogs die when people stop writing them. They stutter, look sad, pop up with the odd, apologetic, oh I'm so sorry I miss my blog post, stutter - and stop. Mine stopped, waiting for me to finish the next part of the story. And life burbled around me, asking me to write about it - and always, to write about it now.

But I'm about to go hiking! I told life.

Life snorted, and tried not to roll its eyes. But now, said life, you are making crystallized ginger. See? Isn't it wonderful and yummy? Doesn't the warmth of it unfold on your tongue? And now, the Toddles is being alarming and splendid and razing your ideas of parenthood all over again, showing you why he was obsessively playing with those number flashcards. Oh, and did he just explain negative numbers to you? Now is full. Write now.

And do it - well, you know.

Oh, I said to life. I will. Just as soon as I finish this other thing...and you know the end of that story.

So, yes. I will take you hiking with us, up the volcano - and into it. I will show you a net and a boy and a biologist, and I'll explain about the dairy that came back and the boy who silently built webs of numbers. But today, there is yarn.

It's one of my favorite yarns, the Mochi Plus Yarn, in the Neptune Rainbow - a swirl of green-to-blue-to-purple, soft and silky. I used it once, to make a kipa for the Toddles. He loved it, and it lasted only long enough for me to learn not to wash wool in hot water. (ouch.)

But today's work isn't a kipa, and it isn't really mine. With the crisp Thanksgiving weather outside, Chanuka is coming. And that means, the boys and I working to make some gift for their teachers. We talked a bit, explored a bit, and then I made them a deal: for every row that you do, I'll do one as well.

Okay, they said. And dove into my stash, choosing a yarn for each teacher. The Toddles chain-stitched a row, tossed it to me, grabbed a second ball of yarn - and made all of eight stitches before disappearing to soothe himself with some Lego. The Eldest, however, glared. He moaned. He bitched. And then, he was quiet.

He smiled. Forwent a grin. Finished a row, and reached for a second ball of yarn. The next day, he would be sent upstairs after shrieking at his brother for oh, goodness knows what. He'd find me, hiding in my room, working on my part of the bargain. He'll curl up in my bed, pick up a random ball of yarn, and chain-stitch for a while.

It makes quiet in my head, he'll tell me. And I'll understand perfectly.

It does, indeed.