Monday, December 27, 2010

and the weather outside is - well, you know.

 Welcome to winter. We're knee-deep in this winter business here, and the wind is amusing itself by carving pretty patterns in the evidence - once it's turned our cheeks the traditional cherry-red, of course.  The boys tucked themselves up in my bed, with a library's worth of books and a grandparent, while my shovel and I worked on a peace treaty. Preferably before the ice sets in, making negotiations impossible.
Whoo, said the Toddles, watching the steam rise from my hair. It must be cold out there.

After two hours of being one with the snow shovel? Um. Yes.

Inside, however, we were warm. And, where that warmth needed a boost, there was a recipe for crystallized ginger. And oh, ginger has such a fresh, springtime scent when peeled, that it was just what we needed, while the wind roared past the windows. Fresh, crisp ginger peeled from the mandoline, and steamed its way to tenderness.

A half-hour later, the ginger had simmered in sugar water, mellowing into translucence.
Admittedly, the first time I'd made this recipe, I had managed to make a delicious crystallized ginger. This time, some quirk left us with a ginger-embedded toffee. Which, surprised, I poured onto a baking sheet and let cool. The piece that clung to my thumbnail, trailing threads of toffee, was fiery and sweet and wholly impervious to the carving, cold wind outside.
But I'm gonna need a hammer to crack anything off that mass in the baking will be worth it, the grandparent predicted. And proved herself right.

Note: the boys would like you to know that they are too wise to touch the stuff. Instead, they ate their body-weight in oatmeal coconut cookies (the recipe simplified by an all purpose GF flour mix) and considered the warming merits of a justly waged war. They took this photograph to illustrate, complete with the shadow of the Toddles, who was experimenting with the Dark Side of the Force.

And yet, outside, it was cold.

Sunday, December 19, 2010

frost and a photographer

What are you doing?
I'm taking a photo of this leaf.
But you only got part of the leaf!
Ah. Maybe I misspoke - I'm taking a picture of the frost on this leaf.
Oh. Can I take pictures, too?
Not now. We have to go to preschool.
Well, then can I take pictures while we drive to preschool?
Oh. Well, sure. But you can only press this button, and keep your fingers away from this bit, here - see? that's the lens and if you - kid? Are you listening?
[waving off the question] Thanks! I'm going to take pictures of - Mum. I can't take photos while you are talking at me. Could you please drive the car instead?

[mutter, mutter] late [mutter] [vroooom]

In the back seat of the car, the Toddles produced the sorts of sounds that happen when a well-brought up, mellow hum is introduced to an enthusiastic, cheerful chatter at a cocktail party. And occasionally, a metallic, consumer-preferred click of the camera informing us that a photo had been taken.

Ah, said the Toddles, with a deep satisfaction. There I am.

And there. Part of me, at least.

And here is what I see - but, he paused, not really. He thought this over.
Pressed some buttons, ignoring the warning rumbles from the front seat about [mutter, mutter] don't mess with that -  and then, click!

Yes, said the Toddles, thoughtfully. I do see that.

And that is in my eyes.

And I can see it being in my eyes - there.

I can only guess that, at this point, the kidlet refocussed internally, and so -

Tee, hee! giggled the Toddles, and the front seat called out, and clap't the shutter to? and was - rightly - ignored.

Throughout the drive, the Toddles click!ed and quietly murmured and hummed to himself. Click by click, he was trying to catch his world, check his own perspective, and build the pieces for his own, Toddleist purposes. But perhaps my favorites came after we stopped the car, and paused in a parking lot.

Here, the Toddleisms are fragmentary, detailed - but rich.

I'm here! the Toddles told the camera. Thanks for coming with me to school.

It was our pleasure, kidlet. Thanks for inviting us.

Thursday, December 16, 2010

okay, someone explain this to me?

At the National Hemophilia Association's annual meeting, a poster described the results of a study comparing plasma derived factor IX (pdFIX) and recombinant factor IX (rFIX), in terms of allergic reactions.  You can read about it here. 88 patients with factor IX deficiency, or hemophilia B, were given the pdFIX, and 163 patients were given the rFIX. The researchers looked to see the prevalence of allergic reactions and the development of antibodies, called inhibitors, that inhibit (hyuck, hyuck) the function of the protein in the system. Or, stop the protein from working at all.

Which, for the severe cases, takes you right back to where mama nature dropped ya. No clot, no dice.

I'm intrigued to see that there really wasn't a difference in the outcomes - 4 from the pdFIX group and 3 from the rFIX group developed inhibitors, and 7 had allergic reactions; 4 from the rFIX group, and 3 from the pdFIX group. But here's what has me gaping:
Potentially serious allergic reactions including anaphylaxis and the development of inhibitors -- antibodies that can neutralize replacement factor -- are uncommon but do occur and often concurrently, the investigators explained during a poster session at the annual meeting of the National Hemophilia Foundation.

From a purely personal note, well, duh. Allergy Boy (a.k.a., the Eldest) developed inhibitors and his first food allergy, roughly at the same time. Years later, we started asking questions about immunology, and not surprisingly, the hematologists admitted to being out of their depth. We found experts at a conference on inhibitors, and asked: allergic reactions are usually IgE mediated, but what kind of antibody is the inhibitor?
How does it work? Is there a relationship between the two processes? The inhibitor experts shook their heads, or looked doubtful. But, absolutely! an immunologist told my mom, and years later, researchers are studying the two as a pair, as you can see here.

The field has come a long way, baby, but this link between allergy and inhibitor remains a teasing, odd note. Interdisciplinary research, anyone?

More immediately, perhaps, what implication does this finding have for the management of hemophilia B? And specifically, if inhibitors and anaphylaxis tend to go together, are there specific implications for families with a history of allergy - or, I suppose, inhibitors? Should they keep an EpiPen on hand when they administer fIX?

Inquiring minds would really rather like to know...

By contrast, however, the following press release required no explanation:
Tofutti recalled 25 pallets of the Tofutti Yours Truly dessert, for possible dairy contamination. I could not find any information about the recall on the Tofutti website, however, which is surprising. Or, well, not. I admit to sighing the sigh of the unsurprised - my experiences with Tofutti has left me unimpressed by their level of education regarding food allergies.

Wednesday, December 15, 2010

a few loops of yarn - and new FA guidelines!

It's been a long day or three, despite a sunlit 40 minutes today with Nicole Snow's yummy recycled (and fair trade!) sari yarn. It's a slim, pleasantly random mix of fibers from sari fabrics, and is obligingly turning into a toddler's hat. Or so I hope.

(For those of you who are interested, I'm adapting one of the free Lion's Brand patterns, this one for the Elfin Baby hat. I've corkscrewed the hat's tail, and am using half double crochet instead of single, to accommodate the yarn's tendency to twist. The stitch count is still 1:1, even with my changes, although I added a chain of 15 to the initial chain stitches to make the corkscrewed tail.)
Eventually, though, I had to put down the yarn and go be a parent. Not that my efforts in this direction were terribly appreciated today, but alas, the Eldest was due to find some way to balance the wonderfulness of the parent-teacher conference.

Even so? oy.

So here I am, procrastinating on a last bit of editing that I need to do, and grumping. And, with a hat tip to Jenn, I ended up doing some verrrry dry reading in the place of the much less dry editing. But oh, worthwhile. The National Institute of Allergy and Infectious Diseases has released the new guidelines for the identification of allergies and their management. At last, a set of best practices for diagnosis - testing! standardized! finally! - and allergy management. Although I do note the deft ducking of the really tricky management questions, about outside of the home or clinic, still, ya gotta respect the rest of it.

Here's the summary, in tidy poster form. And the Wall Street Journal's article, with my favorite quote, It's especially hard to pinpoint a true food allergy in young children with eczema, since they make IgE antibodies to many foods. "If you did 100 food tests, all 100 would be positive. That's what we see from patients coming in from around the country," says David Fleischer, an assistant professor of pediatrics at National Jewish Health in Denver, which specializes in allergy and respiratory diseases.

Damn straight.

I did note that the NIAID's recommendations for managing anaphylaxis reaction seems to have removed antihistamine from the list of first response options for patients and parents, explaining that The use of antihistamines is the most common reason reported for not using epinephrine and may place a patient at significantly increased risk for progression toward a life-threatening reaction. Hm. Looks like it's time to put a call in to our allergy team, and to ask them if we should update the boys' allergy action plans...

Tuesday, December 14, 2010

c'est ci n'est pas une post - nor is it a recipe

Dear brain,

would you please shut up about the To Do list? Some of us would like to stop staring at the unscalable mountain, and get some frickin' sleep, Sir Hillary.

sincerely, body

Dear body,

sucks for you, don't it? Just complete one more item on the List, and then - maybe - you can sleep. It'll just get longer if you don't, you know.


Brain, go re-read your How to Get Things Done books. Don't you know that if I don't get sleep, then you don't get to be effective in accomplishing your goals? And how much do you think you can get done, anyway, with me chanting, tiiiiired, tiiiiiiiired, tiiiiired, tiraliralay in your ear, hmm?
just one more thing? Come on, you know you can.

Note to self: post the tomato-and-black-bean soup recipe, before my mother drives over here, to wrest the thing from my shaking hands.

oh, cripey. She's already called twice this afternoon. Oh - augh - okay.
Further note to self: how the hell did I make that soup, anyway? There was a recipe, but it had little impact on the outcome. My failure to repeat the miracle is not heartening.
oh, you bastard.
P.S. I accept chocolate as a bribe. So, I suspect, do you.

Despite my mother's very reasonable request, what follows is a recipe in narrative form. With apologies to the grandmaternal.

For nearly 14 years, the Man has accused me of hidden mathematical talents. Now, while I have a number of remedial math teachers who still insist on hiding under their beds, I'm fairly certain that I could assemble a rebuttal. And he would reply with one, inarguable fact: I have a bad habit, when under pressure, of forgetting that my brain should probably be allowed to operate my mouth. And that at times like that, I do tend to come out with surprisingly accurate calculations.

Or, to put it differently, I fail to think in grand style. I may even be good at it.

I would not be so petty as to describe a visit from my parents as a pressurizing experience, but I will admit to a bad habit of over-hostessing. I get into the groove, cook too much food, and fail to use my leftovers until after they leave, at which point we [sic] joyously laze my way through days worth of not-having-to-cook dinners. Lego with the boys, endless and minute Star Wars narratives, yarn and oh, storytimes both on paper and on limited engagement, This Night Only! Which is only encouragement to keep it up, printing reams of recipes I might cook before they come, testing one, two, and then oh, the pleasure of watching the fresh, ooo-yum produce come in, and the steaming/tossed/mmm/crunch/smell-that food go out. Can't beat it, from any angle.

But it is a bustle. So, I prep: beans to soak, things to defrost, sous chef work that the Man can do? mixes of dry ingredients that we can have ready? Always, there is more to prep than we could possibly manage - therefore, regardless, the bustle.

And there you go, background aplenty. And here it is:

A Bustled Black Bean-Tomato Soup
serves 6, unless you can manage otherwise.

I based the recipe on Martha Rose Shulman's Black Bean and Cumin soup, from the NY Times Recipes for Health. So,
2 tb olive oil
1 medium onion, chopped - oh, heck, 2? 3? onions, and finely chopped
4 large garlic cloves, halved - or, hey, just smashed with the side of the knife, and then peeled
1 dry cup of black beans, unless you've forgotten to soak and boil and ooops, so 1 big can of ready to roll black beans and thank you, Goya, for that nice ring pull lid because where on earth did the can opener go? I'm going to need it for the - oh -
14 oz can of tomatoes, and there's no ring pull on that one. Fine, then 2 cups of fresh tomatoes (so there!), chopped with love and a bah, who needs that canned stuff.
6 cups water, except that I am so very, very awesome and have finally learned that awesomeness is based on listening to my friends who tell me things about how easy it is to keep the ends of my carrots and the limp stalk of celery and the clean peels of my onions and turn them into broth. See? I listened. And while you might cavil at my awesomeness, I now have 6 cups of veggie stock, simmered slowly for 2.5 hrs. So neener, neener, neener, I'm using stock instead of water.

No, I'm not sneering.

Oh. I'm especially not sneering - toasted cumin seeds? ground? Um. Oh. [casts about kitchen]

Note to the reader: from here, there are one of two choices. Either, my previous, slightly self-mocking note about mathematical genius (did I say genius? okay, functionality. happy now?) is correct, and what I cast, I will reap with gustatory pleasure. Or not. And we send out for pizza. Or possibly, send my parents out for pizza, none of which comes in a suitably supervised kosher, Imperfect-able format.

I cast about, and find Chloe Coscarelli. Her vegan panini had won a contest in March, beating out any number of very very non-vegan contestants. And I had a recipe for this panini, including a spiced chickpea masala - and oh. A jar of turmeric, cumin, cinnamon, cloves - oh, no, I skipped the cloves, and used allspice - and cayenne - no, wait, I used chili powder. Right.

[thank you, Chloe]

Except that, oh, hm. I add a bit of cinnamon, and another bit of cumin. Sniff. Yes, that's better. I need the equivalent of 2 tsp of the I'm-not-gonna-do-that toasted cumin seeds, except how much is that when ground? No clue. Okay, let's go for 1 Tb of spice mix. But first, saute the onions, let them brown - add spices, yes! now! garlic? in it goes - and sniff the pot.


Oh, yes.



Okay, how about a dash of the barbecue spice mix from my wonderful Nicole Routhier? I just rediscovered her Fruit Cookbook on my shelf, and I made some fish on Friday - oh, okay, here we go. Her barbecue spice mix is definitely going to be a happy camper at this singalong, um, okay, here it is:
1 Tb cumin seeds, 1 tsp coriander seeds, 1 Tb brown sugar - o, was I supposed to pack that? bah - 1 tsp ground cinnamon, 1 tsp grated orange peel (yeah, because who has tangerines lying around, I asks youse), .5 tsp salt and .5 tsp fresh black pepper.

I close my eyes and reach for what might possibly be the tablespoon measure. Toss. Add the beans, tomatoes, broth - ha, ha! - and



6 bowls, 6 people herded to the table, 1 smaller one re-herded, then lifted and plonked down in front of salad and yesssssss, say the people. We all stare sadly at the empty pot. How unfair of the pot to be empty, and whose idea was that, I want to know. What's in it?

Oh, cripes, say I, and realize. I have no idea. Later that week, sniffing, I will still have no idea. And my mother, considering her options, will realize that her best chances of another bowl do not lie in letting me off the hook. 
Dear brain,
well, there you go. I still think you are going to be in the crapper for this one. Did you really call this a recipe?
thanks for your concern, but I have already taken steps to alleviate the situation. Do note the slightly erudite
(yet informative) post title, which should offer fair warning as to the limitations of that which is being offered here.
Oh, sure. But she's still going to kick your medulla, dude.

But what do I care? I'm going to sleep.
Dear limbic and frontal lobes,
please, please, please be gentle. Also, do accept this nice basket of fruit.

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.

Sunday, December 12, 2010

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.

Sunday, November 28, 2010

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.


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.

Friday, August 06, 2010

planting a foot on it (a Wish - part 5)

We began at the various visitor buildings, where the Eldest was ceremoniously given a small bag of informative gifts. And the loan of Ranger Rob, a twinkling gentleman with an excellent understanding of that which is small and male.

Hi, said the boys, and gazed adoringly at Rob, his uniform, his walkie-talkie and his generally obvious belonging-hereness. Hi, said Rob. And twinkled.

I explained the Eldest's Wish to climb a volcano, and Ranger Rob and I considered the challenge. To arrive at the Volcanoes National Park, we had driven, well, up. A whole lot of up, more than you'd have thought, given the effectiveness of the doowwwwwwn. Erm. You are already at the summit, another ranger pointed out. (Sans twinkle.) But Rob was unconcerned. I'll take you to what I consider the real summit, he declared. Are you ready? By now, I was pretty sure that I knew the answer.


And off we went, up a dusty trail to the (ahem) summit of Kilauea - a summit not appreciated by the tourists, who hang around the nicely paved semicircle with the pay-per-view lookout glasses. The US Geological Survey likes it just fine, and even stuck a literal pin in the map on that very spot, noting the volcano's highest point. They also built a tidy concrete housing over their pin, and we plopped ourselves on top, the better to consider the view.

It is a view that takes some considering.

Kilauea is an uneven sort of place, with steam rising in a great gush from the caldera, and then in little dribbles scattered through the landscape. Clouds hung low, promising damp, then drizzle, before blowing away to let in a blazing sunshine. Greenery would explode upwards, before stopping abruptly on the edge of lava. Even the bare rock left the sense of someone opposed to housekeeping - a handy geologist (drawn in by the twinkle, no doubt) pointed out the caldera's bathtub ring, a ridge showing the lava lake's level, before the most recent eruption. And who would dare scrub at that?

Untidy - and uncertain. Rob's walkie-talkie crackled often, chattering about emerging or possible alarms, and next door, a lab bristled with measurements and instruments eyeing the volcano's every twitch and wriggle. A place to be, but not to settle in, I thought - but possibly that had somewhat to do with the rock digging into my bum. Or possibly with that threatening gush of steam.

It was odd beyond odd to watch a jogger go by, pony tail bouncing.

The geologist, Kelly, offered to take the Eldest to the Jagger volcano lab and observatory, where she showed us boxes of ash and lava samples. The geologists examine the samples for mineral content, among other things. Different minerals are present at different depths, and a new mineral can mean that lava - or ash - is coming from a different chamber, below the surface. They track an amazing amount of information here, Rob told me, quietly. The computers help assemble the information, and can even help us try to figure out what is happening, during a crisis. And yet, looking around at the piled-up boxes of samples and reams of data, I had the feeling that a crucial degree of volcanology was instinct; a half conscious assessment of information, experience and a coalescing judgement, trailing explanations in its wake.

Reliable science would be nice, but hey, instinct works for me, too.

These are Pele's hair - and tears - said Kelly, and the boys listened with their mouths open as she talked about the way that volcanic glass is spun as thin as a human hair. She held up a bag of what truly looked like hair, and picked out a tear. I found this in the parking lot, a few days ago, she said. (I considered moving the car) Oooo, said the boys, but the Eldest hunched his shoulders, worried by the idea of that much volcanic activity.

Is it safe?

Kelly smiled at him. We watch the volcano, she told them, and study everything we can. The Eldest's shoulders relaxed slightly, finding this comforting. And then forgot everything but awe when Kelly explained how they took the lava samples. Ash daily and lava weekly, she told them, and grinned when I asked why her shoes don't melt. Later, she pointed out some Army green flight helmets and bits of gear. For when we go to get the lava, she said, calmly. Rob nodded gravely, and I caught the whisper's edge of a twinkle in Kelly's eye.

Oh, I said, lamely. Oh, boy.

Kelly flickered another micro-twinkle at me, and led us out to a little gallery of stuff thought cool by the geologists. We gaped at these for a while, remembering the difference between stalagmites and stalactites. Geologists really do get to collect the very bestest rocks. But Rob wandered over to what ought to be the Man's favorite map ever; a geological map, showing the dates and topographical details of the various lava flows. Here is where people were evacuated in such a such a year, Rob pointed, and there is where the lava did this, crossed that town, that road. You could see why Rob was still a Ranger - he looked at that map and saw events, people and needs, where numbers and notations about who knows what were written.

People? rocks? I don't think you can really separate the two around here. But you can pick a focus as a lens for reading a given moment.

We walked past a bunch of bemused geologists (children? in the lab?) and wound up some stairs. Thanks for letting us break chunks off the olivine, said a poster, signed, Ms X's class. I grinned, and kept climbing. We emerged into a glass-walled Situation Room on top of the Jagger lab, complete with webcams and fantastic views. And maps of Kilauea, Mauna Loa, Mauna Kea and goodness knows what else, from umpteen angles, dates and with an infinite number of teeny notations.

There is Mauna Kea, Rob waved. I peered at the omnipresent clouds. An eruption would show browns, and a glow. We'd see it, or an eruption around here, or there... He trailed off. And then, we'd respond, he said, simply.

Looking at the massive landscape, I didn't ask how, but suspected that the answer would depend on your lens.

We headed for the car, an annotated map in hand, slipping from specialness into anonymity. Waving goodbye to Rob and the tourist-aesthetic spaces, we looked for somewhere to get dirty.

It was time for a hike.

Wednesday, August 04, 2010

elimination and observation

High on the list of things that someone should tell people before they have babies (not that they'd believe you), is the bathroom issue. Sandi, I hate to admit it, but I seem to recall that even in your wonderful book, no mention of the Bathroom Problem is included. I gaze upon you and the others who pregged before me, with that slightly sad, disappointed gaze that only a mother can bring to bear.

Right, then the Bathroom Problem. (At this point, certain readers might want to stop reading. Such as my father. And possibly the MIL and FIL. I'm not going to be graphic here, but I will touch briefly on issues that might make them uncomfortable.)

(My father now throws his hands up and stalks off muttering about daughters who nag him to read the blog and then tell him to stop. Right then, I think we're ready.)

Okay, so what you are not told is that, unless you are ruthless about your playpen usage, your child will want to accompany you into the bathroom. Which means that, while you are attempting to focus on your business, the baby is wandering around the bathroom, scattering tissues and - in one notable case - pulling up loose tiles.

Our babes loves toilet paper. We keep a basket of tub toys in the bathroom, but he disdains these in favor of good old t.p. He shreds the t.p., chews on it (I worried briefly about pica, but I think that's just him playing around), and flings it about. At this stage in the game, he is starting to understand me when I say things like 'not food,' or 'not for you.' It might not stop him, but he does look up and take note.

Some days ago, I was busy while he played his usual shredding games. He popped some toilet paper in his mouth, and I told him 'no, that's not food.' He considered this, then offered the t.p. to me. 'Nope,' I told him, 'that's not food for me, either.'

He thought this over for a while, and then crawled over to my knee. He stood up, and waved his bit of toilet paper between my knees. I laughed and hugged him. 'Yes,' I told him. 'That is what toilet paper is for. But Mummy likes to do it herself, okay?'

Clever widget of a child, that one.

enacting a metaphor (a Wish - part 4)

Are we ready? Well, yes. But facing the prospect of actually managing the hike, I admit to being a little intimidated. So we started small.

Steam vents, said the sign, and oh, maybe we could picnic there? said the mama. Well, no. The steam was oh-oooo-eep! hot, and the wind was happily sending the stuff around unexpected corners. It was rather like playing peekaboo with the volcano, and we ditched lunch long enough to tromp around from vent to vent.

When they ran out of steam to squeal at, or vents to nearly-but-not-quite fall into, the boys invented their own.

That's my boys, kicking a little ash, the Man muttered, recovering from a fateful of the stuff. Grinned. And informed me that the above should be the caption for the relevant photo.

Suddenly, it seemed, momentum gathered. Lunch in the parking lot, loin girding, map checking - and with a speed and dispatch unusual for Imperfects, we were off. A brisk tromp from the Kilauea Iki overlook towards the Thurston Lava tube. Which, with great restraint (and a lack of flashlight) we passed by. Instead, we headed for the caldera floor.

Nature's blacktop, the Man joked. But a distant blacktop - it was way far down. I peeked over the edge. Whoa.

Look what you did, I told the Eldest. You got us here - and now we're going to go there. He grinned. I tried to look plaintive. Yes, we are, he told me. And bounded off down the path.

A switchback trail leads down to the caldera, overflowing with opportunistic greenery, loving the volcano's warmth at this cool, misty height. Alongside the trail were even more holes in the ground for the boys to admire. Ooooo, we said, and peered at stubborn bits of green growing out of the sides of the gaps, as far down as light would reach. Cracks in the ground do not exactly inspire confidence in the trail, but small boys bounding around close to the edge of oh, many things, doesn't bring much zen, either.

The kids took endless enthusiastic photos, determined to get the best angles and views while the Man tried not to start shrieking. Too far, too fast, too oh dear - gahrgh - you are about to fall in/over/throughohcripesohhelloh oh oh who left the bungie cords at home? We counted to parental ten (today's ten clocked in at 63, hooray!) and tried again.

Let's buddy up, kids, said the mama, and the Toddles jumped at me. Um, being a buddy means not knocking the other person off the trail, hey? Helping each other, instead? Sticking together?

The Toddles thought it over. Okay, buddy, he said, cheerily. Let's run! No? Oh, buddy, said the Toddles sadly, and patted my arm. Shall we walk briskly, then?

We shall, indeed. And we did, to the Toddles' cheery exhortations (and occasional, breathtaking bounce), all the way down. Whew, said the Man, but we were all too busy staring to respond. The Toddles pushed back his hood and considered.

The caldera floor is an oddly alien landscape. Crisp horizons of pahoehoe (pronounced poh-way-way) stretched before us, dusty and clean of plant life. Here and there, a pile of stones, or amu, marked the path. In some places, a parallel set of amu defined it rather precisely, and with cause. Walking, we passed places where the pahoehoe crusts had collapsed, a silent admonishment to keep to the path. Do not, said the guide, build your own amu. I helped the Toddles jump a foot-wide collapse, and jumped myself. Not a place to go awry, this.

Unnerving as it was to see, these collapses allowed plant life to enter the landscape. Twisty little trees - the kind that is adored by the honeycreeper - grew in the gaps, promising a gentle, vegetative revolution. But there were no birds, nor insects. Clearly, they were waiting, patiently, for the trees and ferns to do their work. This made for a quiet space, nearly barren, in which our voices were the only noise, and the little trees provided a slight break from the lava's grey-back.

The caldera floor glimmered with heat, but the boys clung to their sweatshirts, maybe anticipating their return to the chilly, misty crater's rim. Or maybe, appreciating the deep pockets in their sweatshirts, which they filled with rocks.

Here, said the Eldest, oh, Mum, look here! You can see how the lava cooled.

Spiky rocks, rippled rocks, crushed rock dust all told stories as we tromped along. The boys loved every fragment, and filled pockets with beloved specimens. By the end of the hike, most of these would have crumbled into a rather coarse - but beloved - sand.

And onwards we went.

Almost suddenly, it seemed, the pahoehoe was replaced by a spikier spatter (not a'a) and rocks from the caldera wall's collapse, and we were climbing - just as the Toddles began weaving on his feet. We slowed, sacrificing momentum for a mellow, subtly careful walk. I'm not tired, the Toddles told me thoughtfully. But bits of me are very near to exhausted. Over his head, the Eldest shot me a meaningful look. I nodded.

Step by step by step by step, that's how we make the mountain small, we chanted. I slipped my arm under the Toddles' armpit, and we began to climb. The stairs were steep, and some had long since crumbled, making narrow perches for our feet. Step by step by step by step, said the Toddles, cheerfully. That's how we make ourselfs so tall!

And then we were at the top. Tired, triumphant and with the odd muscle jumping from weariness, we circled the last two miles of the crater's rim. We'd hiked a challenging 4-5 miles, and oh, we felt it.

Look what you did, I told the kid. He grinned.

Look what we did, I whispered to the Man. He glowed.

And kindly drove us the long way home, following the curving, lush edges of a (flatter) coastline.

Tuesday, August 03, 2010

intermission (a Wish - part 3)

ow, ow, ow, ow.

I appear to have dry-roasted myself to an impressively glowing crisp. And while thematically, this ought to lead to a post about volcanoes, alas, it doesn't lead to much more than me keeping my arms straight (did you know that bending the elbow, or raising the arm pull on the skin at elbow and shoulder, respectively? I do).

But I can leave you with an unusual fact, and a photo:

Hawaiian Fun Fact:
While sunburnt skin is sensitive to heat from sources such as warm water, bedding, etc, it will also invite you to wince at the appearance of each goose bump, should you decide to supply yourself with a/c.

ow, ow, ow, ow, ow.

But enough whinging, let's have a pic, eh? I've mentioned the rather lovely roadside graffiti, and we were idly admiring it as we drove north, through the lava fields. There was not, after all, much else to admire - barring, perhaps, the wonderful blueness of the sky, which I was having a hard time enjoying, being already rather crispy.

By contrast to what seemed a fairly ruthlessly sunny sky, the Hawaiian graffiti was worth a gentle smile

and a rapid set of blinks.

Aloha, indeed. We pulled over, and I took my crispy self across the highway (two whole lanes, eep) and aimed the camera. The graffito had chosen a really nice, distant site so as to make for a good view from the road, and a nice little hike over crusty pahoehoe lava, should we want to edit it.

But the broken crusts of pahoehoe, and the impressively deep blackness between the lava's edges are enough to discourage any editor. Still, if I could, I'd at least add something: mahalo, Make A Wish!

The crackling of my various bits aside, I'm sitting on a shaded lounge chair, a quietly humming Toddles next to me, and looking at this:

Oh, my. The saffron finches are chattering, something is crooning in the palm tree near us, and on the horizon, the volcanoes and cinder cones are beautiful in distant shades of deepening blue.

And, lest I become too um, mellow, a small feathered being is informing me, in no uncertain terms, that I am far too close to his nest. Which might just be my cue to pry myself up and go make dinner.

Yep. Any minute now.

*mahalo = thank you.

Monday, August 02, 2010

Arrival (a Wish - part 2)

Another airplane - but then it landed, fussed in the usual airplane fashion before opening a door. Humid air swept in, oddly character-rich with humus, maybe? and salt. We had arrived at Kona.

Kona's airport is an outdoors affair, with little roofed walkways. We meandered towards the baggage claim, where a lovely lady with an armful of flora - and a clipboard - met us.

Oh, said the Eldest as he bent his head for the lei she offered. The more cautious Toddles fingered his, declining to wear it.. It is soft, he informed me. And lovely, I agreed. Flowers draped around our necks, we took lungfuls of air, scented with sea and green. We waited, sitting on small puddles of green grasslike matted stuff, while birds swooped around us, competing for seeds, perhaps? They were utterly different from any in Boston, and therefore, wonderful.

We gathered up bags, a rental car and headed off. Around us, Hawai'i unfolded, a stark landscape of lava in patchworked stretches of black, brown and even rusty red. A few twisting, low trees grew on the lava, alongside tufts of African fountain grass, a plant whose presence speaks much to Hawai'ian ecological challenges, as we'd learn. In places, the lava looked like thick crusts, cracked and sometimes fallen, revealing surprisingly deep holes. Elsewhere, it was jumbled and lumpy, but always a tribute to the volcano's implacable presence. Even the graffiti by the highway seemed to be a metaphor of the landscape, words spelled out in white coral on the dark lava rock. This is an island of the volcano, I thought, brutal and strong.

When we arrived at our rented condo, the kids ran outside as quickly as they'd run in - laughing, they rolled on the grass outside, gathering armfuls of fallen, scent-rich white flowers, and waxy long, green leaves. A golf course unrolled outside of our back door, crisply manicured and lovely, but with tufts of the inevitable fountain grass insinuating itself throughout the landscaping. Drying it up, almost, with poufs in a flammable shade of straw - and inevitably echoing the starkness that lies a mere birdie away. At night and in the early morning, we'd hear the sprinklers going, reminding me of the Negev. If they turn the water off, what will happen?

Unpacking my armfuls of avocadoes, pineapples, mangoes and greenery, I sniffed at human hubris. Bah - insisting on making so thinly veneered a paradise where none is meant to be. Bunch'a idjits wasting water, and who's buying it, anyway? Not us, that's for sure. The Man and the Eldest talked geology, volcanoes, and fingered bits of porous rock. The Toddles lined up his rocks, murmuring about colors and the size of the air bubbles. Stark and brutal, we reminded ourselves.

But then, we had not yet met the overlapping, teeming life at the volcano's

Sunday, August 01, 2010

a chariot - and a glow - await (a Wish - part 1)

There comes a moment when any experienced belly-acher recognizes that it is time to shut the hell up. Mine came at 4.20 am, after 47 hours of packing, staring at the itinerary, repacking, checking the various elevations of our activities, weather reports and oh yes, repacking. Pausing, then flinging
my hands up, tossing things at bags. Tetrising food into the cooler, too tired by then to remember that crucial note I had meant to write down, but, oh never mind because -

Is it time? Do we leave now? Are they here? a burble of boys tumbled in to our room, alarmingly bright-eyed. Bouncing, even.

Almost, I told them, and woke up their father.

It was full dark outside when we closed the door behind us. The street was quiet, the lamps glowing, and there was a long white limousine. The door was held open by a smiling gentleman, who also insisted on carrying our bags. Inside, a bar curved along one side, holding crystal glassware - and spring water. Are you ready? he asked, and as he started the engine, tiny lights began to twinkle from the ceiling.

Were we ready? Sitting in that improbable car, I felt adrift from reality. Anything could happen now, it seemed, and perhaps that was the point.

Driving through a silent, sleeping city, the Eldest looked out the windows, at the shining lights of the ceiling, and leaned towards me.

Mum, he whispered, oh Mum, my Wish is coming true.

I looked at his face, and threw away any squirms or wriggles I might have. Dug out the gigantic blue pins. Attached them to the boys' bags. We were a Wish family, the buttons announced. Something special was happening here, said the buttons, and we wore that specialness on our faces, and on our bags in a language that anyone could read.

The boys bounced through the airport, wrapped in a fog of their pleasure. People looked quickly, almost wincingly at their buttons, I thought, but some smiled and met our eyes. Wrapped in their glow, the boys didn't notice. When the plane took off, the Eldest's eyes were alight. It is happening, he breathed. My Wish!

It was a glow hard to sustain over the next 15 hours, but a quiet word with an airline attendant, and we relit the kid.

We are beginning our final descent, said the captain, and told us the local time and other bits of useful information. And I know you will join me in wishing the best of luck to one of our passengers....seated in this row, the Eldest is on his way to Hawaii, thanks to the Make A Wish foundation. His Wish is to climb a volcano and save some endangered species, and we wish him the best of luck.

There was silence for a moment. Then, applause. The Eldest's face shifted from startled to thrilled, and he waved at the cheering people around him. And graciously accepted the invitation to the flight deck, where he and the Toddles asked enough questions about the workings of the wings and navigation system to give the captain pause. He recovered swiftly, and offered thoughtful, crisp answers - but the boys could barely hear him over their determination to push every button and knob within reach. Not, thankfully, including the parking brakes. The Man and I fielded eager hands, redirected eyes towards the answers being given, and used the butterfly net to collect and direct the boys towards thank-you and our next flight.

That's quite a pair you have there, the captain told me. Something special? Behind him, an airline attendant raised her eyebrows and looked sympathetic. He grinned. Must keep you busy, eh?

Oh, yes, I nodded. And zipped off, following the Eldest and his glow.

Sunday, July 25, 2010

note to the abandoned (a Wish and a sidestep)

Okay, so it's slightly evil to do this while building narrative momentum - I did, after all, just say the words "Eldest" and Wish" in the same sentence - but the Eldest's Wish needs to wait while I settle something.

There are two misconceptions that you might have at this moment:
1. that the Eldest is terminally ill
2. that this is the most extraordinary gift that we could possibly be given, and that bubbling clouds of delight are whisking us far, far up beyond the mundane.

Well, 1. most certainly, he is NOT - and we're grateful for that. The Make-A-Wish foundation grants Wishes to children who are terminally ill, as well as to children with certain life-threatening conditions. The Eldest was such a child some years ago, but he is nothing of the sort now. And 2., well, look at the superlatives. Consider the tone that goes with them. Nod slowly as you realize that, in fact, this Wish makes me deeply uncomfortable.

There is something both humbling and deeply invasive about having a child with a chronic illness, and watching healthcare professionals gather, ready to offer you their time and help. The family home shifts towards being a place of socially constructed pretenses of privacy, whose social patterns are known all too well to those who support it. So, fine. There are other people involved. It was the loss of independence was harder to adjust to, and the ongoing sense of social obligation.

It's not like I can go to an infusion nurse's home and pop an IV into her kid, or cook her dinner. (Although I did try to feed them at every opportunity, and they were very tolerant of my efforts. Oddly, the nurses had always "just eaten something, oh, not fifteen minutes before I arrived." Um, right.) I know that they get paid for their work, and that it is work, and not a personal favor. But their job is inside the family sphere and part of something so very intimate and central to the heart of me - of us - to the point where I can't always treat them as professionals. We force, ask, push, hope them into becoming people, and then relax a bit.

You can have a social exchange, or build a relationship of mutual caring with people. Use it to discharge debt to the point necessary. You can't do either, really, with a professional maintaining an appropriate emotional distance.

And a Wish is a gift bigger than anything we've seen yet, and given by people that don't have a relationship with either the Eldest or me. Yes, there's someone being paid somewhere, but we see the volunteers, the people giving of their time and representing those who gave of their wallet. It's the waving of a wand, held by people we don't know and who are careful to stay remote, and who will happily vanish, post-wave.

And it's just too damned big.

I just can't get comfortable with the idea. After all, look at my kid - he's the kid who throws rocks into the river, irritating painters who've driven wayyyy up to a scenic view.
He's the clown that mugs for the camera with his robotic Lego-thing.
And he's the quiet kid, relaxing post-swim with a book while the light falls just so.
He just doesn't need this. His life is full, rich with pleasures and replete with met needs. It's not uncomplicated, I'll grant you - but he doesn't need a magic wand. Nor can does he need a reward for the twisted, edged complexities of his early years - the kid doesn't remember them, and the Man and I flinch at the idea of a door prize.

Congratulations, your kid got knocked around, so he gets this.
Congratulations, you were battered while your kid was sick, so he gets this.

It's unnerving to have the societal powers-that-be offer this as a palliative, whether to their sense of justice or to my own. It's unsettling to have a wand waved to lift the Eldest out of his world, and into a fantastic place where Wishes are granted. Or, perhaps, to argue that he lives in this place, regardless of my stubborn hymns to ordinariness. And it seems ungrateful to be shifting in my seat when the fairy godmother(s) come to call. Or, hell, asking her to produce some ID.

But I am, regardless. I have a wonderful, vibrant son. He is enough, and beyond enough - and replete with our good fortune, the Man and I should gracefully decline the Wish.

But this is not our Wish - it's his. Which might just be why it is going to come true. And it might also be why at some point a mosaic of joy, gratitude and yes, tears, is going to sweep up behind me and smack me on the nose. Because maybe, at heart, my mutterings about not being deserving, not needing or wanting to ameliorate another's sense of guilt/need to act/memory - maybe? Maybe that's all just me, trying to insist that the past stay in the past.

And hoping that this Wish doesn't carry with it too great a burden of memory.