Breeding Imperfection

lumpy bumpies

2012-01-16T11:55:00.002-05:00

It came as no surprise to the Man, when I realized how much I love baking my own bread. You like making things, he pointed out. Yarn, flour, gardens, whatever. You like working with your hands. Which makes it particularly irksome to realize that my hands have been stepping out with some giant cell dudes. And lumpifying.

It's never occurred to me to think of my hands as being aesthetic. Unless it's my aesthetic, which turns firmly on the functional. And oh, dangit - the quirky. Which occasionally includes la lumpy.

Introducing, La Lump.

I bring this post-biopsy, and post-frozen scared someone find me a fucking hole to stick my head into, because the ostrich and sand dune combination is looking pretty damned good right now. Yes, it's benign. Giant cell tumor, but benign. It's also wrapped around and through my wrist, which isn't so benign, but it's a heck of a far shout from malignant. And it's like hemophilia, in that I keep waiting for someone to say, ha ha, just kidding - there's really nothing going on here, but they don't.

Which makes it all the more symmetrical, perhaps, that La Lump has sparked the hemophilia question. Stoked it, really, into a fierce light. And to clarify? not the Eldest's hemophilia. Mine.

So, one day, La Lump, the Eldest and I go to the grocery store. I grab a basket, and we pick up some cherry tomatoes, dill, a bag of tortilla chips, a smallish bottle of olive oil and some fish. Not very heavy, even with the Eldest dropping his jacket on top. Both hands on the basket, I stroll with the Eldest, enjoying chattering with the kid. La Lump hissed at us both. Bitch.

At our front door, I fumbled my keys. Your hand looks funny, Mum, the kid told me. Not La Lump funny - this we'd gotten used to. La Poof funny. La Bleed funny.

The details don't really matter after that, except to note that we were walking in with the last minute groceries for dinner with a dear friend, his tiny lovely baby, and grandparents. And that the Man had to do nearly all of the cooking himself, with me supervising. It's hard to get more heroic than putting up with my ideas of supervision. And the guests, sweet and funny and absolutely wonderful sports, helping with the salad, the lentils, the calm return of the undercooked fish to the oven, and of course, the baby.

And ice. Ice, ice, ice, days of ice. Don't touch the arm, don't lower it past heart-height, don't oh don't jar it even if you are small and loving and just want your mama to feel better, because holy shit that hurts. Days of sitting and breathing inside the cool dark of my skull, exhaling tension, sitting on the floor and waiting for that moment of peace to come. Sitting with the pain, accepting a newly visceral understanding of how much a joint bleed can hurt. And how little I understand my own bleeding.

It was two days before the Hemophilia Treatment Center's NP marched me over to the fridge, and told me to use some DDAVP. Now. And reassessed (with my honest help) her opinion of my reliability as a person with a bleeding disorder. You have to understand it in order to manage it, and I don't get this hemo-girl thing.

Thought I did. Don't. Or, not enough.

Let's start at the basics:
A genetic carrier (or just carrier), is a person or other organism that has inherited a genetic trait or mutation, but who does not display that trait or show symptoms of the disease. They are, however, able to pass the gene onto their offspring, who may then express the gene. Wikipedia then goes on to offer Queen Victoria's daughters as the classic examples for carriers of a gene. But it looks like a revision is in order for this wiki.

Coagulation specialists already knew that looking at a carrier's specific mutation could help them predict the severity of the condition for a future (or in utero) child with the gene. But what about the carriers themselves? Dr. Marion Koerper, when I asked, explained that the severity of symptoms is not consistent between mother and daughter. You could check every carrier's factor 8 levels, but, Koerper warns, you'd have to check them at their lowest: the day after the woman's period ends. And, it seems, you must check.

According to a study published in Haemophilia (March 2011), a carrier can have 40-80% factor 8 levels (fVIII) and still be at a higher risk for bleeding than someone with the same level of fVIII - who doesn't have the hemophilia A mutation. Danielle Nance discussed the study with HemAware. That result wasn’t something we expected, Nance told HemAware. We always knew that if a woman’s factor VIII level was below 30% or 35%, she had an increased chance of bleeding. Now it looks like even if the factor level is in the normal range, a woman could have an increased risk of bleeding if she has a severe mutation. The researchers found a rough correlation between the genotype and the woman's bleeding pattern, sparking a lovely controversy: do you test the woman for her child's sake? Or, for her own? Do you test the child for the woman she will be?

I wonder what you think.

More immediate is the challenge for the hemophilia centers. A rose is a rose is a rose, except when the insurance companies deny coverage for testing and care for a carrier. As dictated by language alone, symptomatic or otherwise, a carrier can only be getting unnecessary care. Koerper is very clear about this. We have to be very careful about our terms, she told a roomful of women recently. By definition, a carrier doesn't have symptoms. And it doesn't matter if you call someone a 'symptomatic carrier' - if you say 'carrier,' then that woman isn't getting treated. And we all watched her think about flinging up her hands.

I understand learning curves. And I understand catalysts. This one, happily, will soon be leaving me. La Lump has met La Surgeon, and he is planning to spend some time peeling her off of the various necessary bits of my wrist and arm. We've discussed our mutual agreement that it would be better to risk recurrence than to oh, nick an artery or damage a tendon. But he is very very good at his art, and I have hopes that this will be good-bye for the lumpy bumpies, and La's sniggering, sneering shove at hemophilia. Pushing it center stage, where it should not be. And sparking a wonderful, honest conversation with the Eldest about pain - that much friggin' pain - that isn't politely confined to a predictable event, like oh, childbirth.

Still, I did win the kiss me, I'm a mutant t-shirt, and perhaps earned it better than I'd realized. Hemophilia can go back to lurking, but now that it's taken my hands and held them - and me - in place, I owe it a clear, careful look. And yes, some respect. So, I made an appointment.

Tell me, I said to the hemophilia NP, pointing at a dark purple bruise. Don't know where it came from, but I've had this for almost a week. She nodded, and bent her head to look. It's firm, the skin arcing gently over the pooled blood. A dull, ignorable ache under the skin. Tell me if this happens to other people.

bananagrammatics

2011-12-13T11:59:00.000-05:00

a glimpse into the Eldest's autumn reading list, courtesy of the wonderful Evan, at the main branch of the Cambridge Public Library. I note, gratefully, that he didn't include anything about earthworms, or the build-your-own spaceship books.

But then again, the game's not over yet.

oh, those crazy kids

2011-11-02T10:23:00.001-04:00

No, not mine - the ones at Columbia. They built this crazy slinky meets seesaw, with a dash of park bench and super duper kid pirate cave. I very very rarely regret leaving NYC, but if the boys and girls at Columbia are letting people come and play with this one - well. I might just consider a faint wistfulness.

Mostly, though, I want one of those for my living room.

sitting next to me, nursing his third bleed of the month, the Eldest nods a decisive approval. Oh, yah.

no, I am not here

2011-10-31T23:19:00.000-04:00

So, if I did a "no, really, I'm still alive, see?" post then I'd feel all kinds of obliged to actually catch up on things that I didn't write about. The hell with that, I have dishes to wash. Instead, let's just jump in.

oh. yes, I probably should have mentioned something about the muddy puddle. if its any comfort, the Giggles had already dipped an investigative sneaker in, considered the result, and then tromped firmly on through. (No, really. Go check the playground on the kid's school - you can't miss it.)

Meander done. Next?

Right. Next is the bit where I get all fired up over the prescription drug shortages. Or maybe the enthusiastic gray market that is making hay from the shortages. But it's happened before (wait, that makes it okay?) so there's no shock here. Just tired familiarity.

When the Eldest was born, there was a shortage of recombinant factor VIII. (Translation: not-from-human clotting protein needed for hemophilia A.) When a new baby popped up with hemophilia, we all went hunting in the hospital pharmacy for a recombinant brand that made doses in small enough sizes. If you found one, hooray! A new baby got a new era drug, and you stuck with that pharma company until the market (ptooie, ptooie) opened up and gave you options. Some day.

And yeah, there was a gray market. Biological injectibles were bought or stolen by goodness knows who, kept under goodness knows what conditions, and then sold at eeeyikes prices. Of course, if you don't keep a biological at the right temperature, it will lose potency - but hey. There's an excellent book about the pharma grey market by this clever lady, here. For those of you who cannot be bothered to amazon it, Katherine Egan's book is described - better yet, summarized - in an article found here.

Note the date. This is old, old news. Or is it? According to a sensibly written report for the HHS, it's an ongoing issue. Which is perhaps less exciting than the fresh, horrified headlines about shortages of life-saving cancer drugs - by contrast, we Imperfects are among the very few who care about the shortage of the faux old feet flavored drug (aka Amicar), our fellow bruisers who care about the shortages of desmopressin (used to treat vWD). And, were I to blithely go ahead and let an orthopedist remove large, inopportune chunks of my wrist, I'd certainly care a whole helluva lot as to whether the hospital was buying my diazepam from the back of some guy's truck. (See Egan to find out if I'm kidding about the truck.)

So, hooray for Obama's kick in the pants to oh, everybody and the FDA. A hearty waving o' the pom poms to the FBI for looking into the current gray market, and offering that information to the public. Good to know. And a heartfelt three cheers for Rep. Elijah Cummings, who is pushing the issue in Congress. Apparently, he is doing so after receiving a letter from the mother of a child affected by the shortages, thereby proving that he not only reads his mail (or hires staffers with a nose for the important issue), he also pays attention. And oh - don't overlook this, because it's got to cost him potential pharma campaign funds - acts.

Good for you, Rep. Cummings!

hungry thoughts

2011-08-09T16:33:00.000-04:00

Today is the 9th of Av, a day of fasting and mourning for the lost centers of Jewish holiness. There's a whole constellation of concepts that go with that, but I'm going to point you to Eicha and leave it there. I'm too hungry to do the subject justice. Instead, all I can think about (4.08 pm, fast ends and 8.56? 8.57 pm? so that's what, 4 hours and 49 minutes to go - unless it's 46 minutes and I should really look that up which means that if I can get through feeding the kids dinner then it ice cream a couple of hours later and damn, my stomach is gnawing on my collarbones) is food.

We've been eating peanut butter around here, every since the Eldest was veeerrrry carefully fed pb in a hospital setting, surrounded by a group of people who were only the teeniest bit disappointed when nothing happened. As it happens, when you don't grow up with peanut butter, it's a tough sell. Sticky on the roof of the mouth, a sort of strong taste that you've already been taught is dangerous, and now? now you should forget that and fall in love? Instantly? Um. Guesses as to how this goes?

It might help if one's mother lit up more at the idea of pb&j. But I'm frankly a little ooked by the idea, and me, I'm holding out for the barley allergy to go. I want my Vegemite. Peanut butter + toasted sesame oil, soy sauce, a leetle vinegar and a bunch of garlic, maybe some pepper and water and stir...now, you are talking. So, talk to me about peanut butter when the sesame allergy goes.

Clearly, now that we've kicked a couple of allergies, I'm turning into the demanding type. Either that, or peanut butter has simply never been all that central to my world. Until we discovered PB&J cookies. Gluten free, egg free, and nut free (if you can find a safely nut free peanut butter), these are delish. And pretty darned quick, too.

Our Imperfect thanks to rae1954 and eHow for the (slightly adapted) recipe:

PB& J cookies

1 cup peanut butter (smooth)
1 cup sugar
1 Tb soy flour (or other high protein flour)
2 Tb water, plus more as needed to get a workable consistency.
Jam of choice

Preheat oven to 350F. Dump all ingredients (except jam) in a mixing bowl. Mix, adding water until the result will form a ball when rolled between your palms. Cover a cookie sheet with baking parchment, or spray with cooking spray.

Drop balls of dough (roughly 1 coffee scoop, or 1/4th cup) onto cookies sheet. Use your thumb to make an indentation in each. Invite the kids to drip a wee bit of jam into each thumbprint, and take photos.

Bake 16-18 minutes, until slightly browned. Cool on cookie sheet for 5 minutes before transferring to a cooling rack. Consider the possibility that PB goes with a slightly caramelized J, and that other versions of this lovely combination are worth tolerating - conceptually, if not in practice. They are, after all, not that far from a fairly delicious truth.

strategic summer snarling

2011-08-08T16:05:00.000-04:00

My goal for this month is to wear a mildly humorous, distinctly wry face when asked, so, how's the summer going? Last month, I managed a less than slightly desperate look, and when asked, offered practical demonstrations. Or loan of small children. Over the course of the month, the Giggles learned what his older brother already knew: when the mama has that wild look in the maternal eye, it's a really bad time for small Lego to be underfoot. So tidy up. Tidy it all up.

It is actually possible that the best parenting that I did all month involved time-ins. The Eldest was fined with three days of time-in (a.k.a. helping the mama), and learned to stack dishwashers. His mama-placating strategies took a big jump forward when he shared notes with his fellow inmate, and learned that the Giggles had been instructed in the art of cleaning the dryer's lint filter.

Together, they made a potent team.

The lads still failed to understand the whole morning, get up and brush teeth and put on clothes business, but hey, they can splash in every single puddle in our perma-construction site of a block. Because they can do the laundry. And they can now eat their weight in fruit, if they like, with a solid 42% childsworth of cheese and corn thins. Because they can wash up.

Well, they can. And will, if there's sufficiently terrifying maternal incentive in front of them.

i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. starting right after dinner.

aim? ball seventeen?

2011-08-04T19:44:00.000-04:00

Note to self: throwing a ball at a small person's bat is a lot harder than it looks. But hey, it's a heckuva lot of fun to say, authoritatively, okay, kiddo. Now, you have to keep an eye on the ball...

Heh. As if I know anything about the subject.

Pax! Pax!

2011-07-19T17:00:00.000-04:00

enter, the peas.

Three types of them, to be precise - but the specifics of peadom were irrelevant next to the joy of the boy collecting stuff. Sigh.

No, wait - I lie. In truth, we love our jaunts out to the farm, especially this lovely local one. Getting ourselves out of the house takes a crack bunch of sheepdogs right now, and occasionally leaves me hoarse and gasping words that I really would rather the boys didn't learn. But then we're out, and a zip down the road from this quiet greenness, a wisely shaded picnic table, and this:

In the field, the boys stop grumping about having to brush their teeth, there is no Lego to divert them to absolutely essential something that must come before changing out of their jammies. And I try not to gape at the idea that all of this joyful, careful focus is happening over - peas.

Yep. Snap peas, sugar peas, snow peas - and now? our peas.

What on earth will I do with them all?

did someone say go?

2011-07-17T16:59:00.000-04:00

Somehow, speed and this oh my gawd, it be hot doesn't seem to go together in my eyes - but the boys seem to operate according to an entirely different set of specs. Which would explain, come to think of it, oh so much.

A couple of months ago, we were given a hand-me-down bike. Gig fell in love with it, mourned when it was too big, and reluctantly allowed the Eldest to sit on it. Briefly. When removed from the bike, the Eldest screeched bloody murder - the bike was too tall for him, also.

The Man shook his head. Maybe if we took it to a bike shop?

Upstairs, the boys squabbled over the blue bike - no, the purple! - the one with the bell! - but can't Mum move the bell? - oh, yeah, but I want the one without the training wheels - oh, me too! said his sibling, gloriously indifferent to his lack of two-wheeled experience. Me, too, he repeated. Firmly.

1.2 inches of seat adjustment later, and we had ourselves some speed. Irregular and slightly scraped at first, but then? Then we had this:

And, to be fair, they did slow down so that my poor wee camera could capture them.

********************************************

Feeding the speed demons requires an equally speedy dinner, because while they might be fast on the road, the lads flag quickly when its time to come inside. But this salmon and salad meal gets thrown together in about 20 minutes, with a little advance prep.

garlic, with a little yogurt & dill sauce:

adapted from (no joke) Garlic, Garlic, Garlic - credit for the adaptation goes to one of our favorite children's librarians.

1 1/2 cups plain yogurt

1/3 cup fresh lemon juice

2 fat cloves garlic, pressed or minced

freshly ground pepper

1 tsp dried oregano, or 1/2 tsp fresh

1 big handful chopped dill

optional: a sprinkle of mint

Mix thoroughly, and set aside. Covered, the sauce should keep in the refrigerator for a week.

Meanwhile....take a slab of salmon, drizzle with olive oil, salt, freshly ground black pepper. Drizzle a bit of maple syrup on top. Grill or broil until it flakes gently in the middle.

Into a bowl, toss a whatever is in the fridge salad. Yesterday, this salad looked like this:

1/2 of a small Napa cabbage, thinly sliced

a shred of a radiccio

a handful of lettuce from our garden

thin strips of apples

2 scallions, sliced

a big spoonful of green olives

1 underripe mango, sliced into strips

Toss in the bowl, along with a dressing. Yesterday, our dressing was: olive oil (drizzle on salad, toss until salad is coated), salt, pepper, garlic powder (toss again, until spices are distributed). A spritz or two of Bragg's (a recommendation from a wise friend, whose children eat kale - think of it, kale! - with Bragg's sprayed on top), a drizzle of honey (1 Tb?) and a tablespoon or so of vinegar.

Serve with a bowl of leftover rice, or some boiled potatoes - preferably the wonderfully lumpy ones that Gig picked out at the market, and then was only reluctantly persuaded to share. The slightly charred, caramelized flavors of the fish match up nicely with the slightly sweet salad. There might be more subtle ways to balance this gentle, summery sweetness, but I'm not a subtle person. I like the coolness and the garlicky bite of the yogurt sauce, and I know that tomorrow, it'll be lovely with just the boiled potatoes, a pickle or two, and a peach. The day after, I'll probably use the sauce as a salad dressing...but I'll wait a couple of days after that, before I use it as a dipping sauce for some pan-fried tilapia.

And then? peas.

best. QOL. evah.

2011-07-12T00:47:00.000-04:00

Nowadays, it seems as if children's mental health is climbing onto the medical radar, and spreading until it gunks up the wipers. As it should - too many kids, saith my not at all educated self, are left to struggle with depression and mental illness. People should find these kids and help them, and no, I'm not going to swear to add emphasis to the statement. They just should.

With that, of course, comes the QOL form - the quality of life form.

Is your child happy? sad? in trouble at school? do they talk about anxiety? do they say that they feel down? do you think that they are anxious? do you think that they are happy? sad? in trouble at school?

I have an amazing urge to write it depends all over these things, but I do appreciate their significance. Mental illness happens to all kids - the ones with the chronic diagnoses are simply best poised to get screened over and over. Which is perhaps unfair. Still, I do appreciate the pop of studies by people are realizing that hello? chronic illness is actually an additional thing to ask of a kid. And that kids' response to illness is unpredictable. QOL studies - and I'm too tired to go find you links, but look up QOL and pediatric cancer, resilience, etc on pubmed and read carefully. Especially, read the bit about how parents tend to rate their kids as unhappier than the kids say they are.

I love the bit where the researchers think carefully about how to prove that the kids aren't lying. Or so extraordinarily socially adept that they know to say that they're just fine, as the Eldest did, when asked by doctors doing their morning rounds.

How are you feeling this morning, kiddo?
The Eldest summoned a big smile and bright eyes. Oh, just fine.
Hey, said the doc du jour, that's great!
Yes, said the Eldest with a degree of satisfaction. So? Can I go home now?

Truly, the doctor should not have been surprised. Happily for him, he joined the rest of us in laughing our asses off while the Eldest looked on, somewhat hurt.

And thus, the QOL.

Which is how the Man and I found ourselves looking at the following question: Does your child get into more trouble at home than his sibling?

And our answer: You should meet the sibling.

2.25 miles plus what?

2011-07-06T01:23:00.001-04:00

The 4th of July is a big deal around here, so much so that the Man and the kids and I decided to celebrate by admiring roughly 2.25 miles of our municipal water supply. It's a nice trot around a pretty bit of water, on a very nice blacktop with lots of dogs to pet. Who would happily, btw, share your lunch with you.

It was the perfect day for a stroll around the water, with the sunshine and the 90 degree heat and the children bounding along. Also? The city had made the paths really pretty, with the occasional butterfly meadow.

The bees appreciated it too, although my look, kids! Do you see the two kinds of bees? Come closer - I'll show you which one is more likely to sting didn't go over well. Oddly. By contrast, our stop at the dogs-get-wet-here spot was epic, and genre alone should explain why I couldn't possibly give you any real sort of sketch as to why, or what happened, but there were wet dogs and sticks and small boys and dogs' people who showed the small boys how to throw the sticks. Also, that you should show the sticks to the dogs first. And that once you've shown the dog the stick, it's a good idea to throw it quickly - especially if the dogs (uniformly) outweigh you. As the Eldest ruefully observed.

It doesn't help that I'm short.

No, I thought. But it does help that you - both of you, actually - are literally willing to get up after you've been knocked down, and try again. Lucky for the kids, their parents are the same sort - although for the adults, it might be less pluck than bone-headed stubbornness.

That's poison ivy. See? Leaves of three, the newer, smaller ones are reddish. Don't touch it - it'll make you really, really itchy.

A couple of pairs of small boy eyes grow round, solemn . Oh.

That's poison ivy. See? There on the edge of the track? You were about to walk into it, and that's not going to be fun. Remember how itchy you were after we went to that park?

OH! No, I didn't like that. I'll stay away from the ivy.

Hey, honey? See the poison ivy right there? You were about to step into it. Remember how it's itchy?

Gosh, that poison ivy is just lining the entire path. Better walk in the middle, so that if you stray to one side, you'll still have time to move away again.

Um. Notice where you are? No? Okay, what do you see there?

Hey, look at that sign! It says that there's poison ivy here. Wonder why they didn't hang up more of those - oh, kid - you were about to walk right into the poison ivaaargh.

There is a special sort of hell that describes this, but all I can say is: 2.25 miles of track. 9 miles of poison ivy (it was on both sides of the track, we had two kids, so you do the math), and where in hell is the learning curve, huh? Right now, all I'm getting is Zeno's paradox.

The Giggles' ability to read the Poison Ivy Runs Rampant sign? Not as comforting as one might hope. Somewhat mocking, in a rather cosmic karma, laughing behind its hand sort of way. Or possibly just strolling right up and prodding me in the ribs. But, MO-OM, said a child, it would help if you REMINDED me. You know, sometimes I need a reminder. And sometimes, I need two or three or five reminders. I inhaled. Forgot to exhale. Focussed on figuring out the square root of the number that I was counting to.

You had 2.25 miles worth of reminders!

Oh. said the child. That's a lot of reminders. I see your point now. But, he went on thoughtfully, you know, they don't have poison ivy on the planet Emeraldia. Or, rather, they do, but nobody's getting itched by it. I should ask them why not and then sell the cure to everyone!

And just like that? We were half-way to the end of the curve.

Math sucks.

an unfolding deliciousness

2011-07-04T00:45:00.001-04:00

I found them, of course, right beforehand.

Tucked into a bin next to some sawdusty roots, a raggedy collection of twigs were sprouting in a somewhat forlorn corner of the fruit-and-veggie store. Shopping carts whisked past, heading for the more promising broccoli, leeks and (barely deserving the discount) seconds. On the other hand, how anyone missed the burst of color in the sawdust and twig corner? I can't imagine.

Lychees.

I don't know how you'd pronounce them - my ligh-cheeze has never been quite right, but who has time to compare notes on pronounciation when that is dancing a delicate, swooping samba on the tastebuds? Liquid, apple and a light sweetness, with a little pineapple? or quince, maybe? definitely a tang that's halfway between a really aromatic Meyer lemon and a regular lemon, and oh, too much of my childhood for me to really taste the thing.

I think.

Judging from the looks on the boys' faces when they carefully divide them up, though, I might not be so far off. The boys' precision is overlaid by a sense of ruthless logic: if I'm really, really fair, then I'll get as many lychees as the other guy. Unless mum's not watching, in which case..? um. Or not.

And for the Man, it's one more oddity in a pantheon of edible oddities that he's learned to enjoy. An unfolding of flavors in the mouth, a discovery of unexpected pleasures - yep. It's really rather the perfect metaphor for a rather extravagantly numbered anniversary. Even if I did have to work the image a bit too hard to make it fit, well, hell. There's a bag of lychees in my fridge. Get here before they're all gone, and I'll let you see for yourself.

Unless we eat them all, the Man and I, sitting at our table in that most private of restaurants, with the candlelight flickering. And the kids, hopefully cooperatively asleep, having eaten their own bag of edible yum earlier that night...

Wishing us another many, many lots of the lumpy bumpy delish, love. So glad to have you with me for the road thus far, and I promise to share very, very fairly the deliciousness that comes...

so, in case you missed it? summer

2011-07-03T21:34:00.000-04:00

of course, if you are at all unclear on the subject, you most definitely do not live at my house. Here, the mornings be loud and the afternoons be bitchy, and periodically the Eldest will wander over and explain that he is oh, so very tired. You know, he'll say confidingly, the Gigs* woke me up an hour - no, two hours - early this morning. Which is to say that, his brother woke up at his internally cuckoo-clocked hour of 6:something wee am, rather than letting the Eldest snooze until 7ish.

My parenting position on this sort of thing is, officially, that there are many reasons that it can suck to be the older child, and this might be one of them. Also, that the Eldest spent oh, five? years requiring us to make him the center of our attention - and gently accepting mid-field, slightly off-center. The morning adoration and play with me! It's a day! Let's play with something FUN! from his sibling is just deserts.

So, yes. Summer. It started gently, with the Eldest transforming into lo! a fourth grader. Don't ask me what it means, except that I'm pretty sure that there's a growth spurt in there somewhere. Eventually. Also? A sudden, horrified awareness that if someone makes trouble, the mature, sensible fourth grader might be part of a group held responsible. Hm.

Shortly his mother stopped smirking in corners where she thought he couldn't see, the smaller one dusted off his hands, was offered and solemnly wielded the rose-shaped light saber of the Padawan, graduating to apprentice Jediship. (or some such) And I'm going to hold the grin in my tone here, but you know that it was a soggy occasion.

The Preschool of Wonders was wise enough not to equip their graduates with lightsabers - they gave them kiddush cups, instead. Armed with a nice bit of Judaica, the kidlets trotted happily off after a slightly adapted "Tick, Tock" song, wondering why that last line had come with a sudden round of adult mucus. They were, after all, going to see everyone on Visit Days, right?

::sniff::

With that taken care of, it was time to - well, to anything. The boys began with aerodynamics,

paused for a bit of whoop!

and went on to figure out how they could conquer the world.

And if you hadn't noticed, I suspect that I haven't been blogging nearly enough. Trust me - they did.

* Gigs, along with Trig and Gigabyte are a variety of names that we use for the really no longer toddling Toddles. For obvious, Palinesque reasons, I'm going to eschew the lovely Trig. Let's see if Gigs works for us - and your opinion is most welcome. The name is, of course, short for the Giggles.

morning improbable

2011-06-07T00:47:00.000-04:00

go go go go shit stubbed -ow-fmfrikkintoe- um. Hi, honey.

The Toddles walked in slowly, meditatively. Also? pajamaedly.

Um, kid? It's morning. Time to get going for the day. I point at his pile of day clothes, sitting in the hallowed pile o' day clothes spot. He doesn't blink. Also? doesn't turn around.

Yes. I know. The kid flops down on the bed, his expression still serene, still relaxed. But I stopped the clock.

I blink. He clarifies, time is standing still now.

Something in my morning routine knife pleats, then crumbles. Side by side, we stare at a line of light, threatening to creep across the ceiling. I could get to like this, I say, sleepily.

We pause, sinking into the stillness and inertia.

Mom! Mom! We have to go in seventeen minutes! the Eldest shrieks, running into the room. I turn my head to look at his brother, who doesn't have the grace to look sheepish.

I forgot to tell you, he says, calmly, I started it up again.

okay, so your cell phone can pop corn. Anything else?

2011-06-01T22:35:00.001-04:00

But not so much tumors, says Tara Parker-Pope. Well, maybe gliomas - but they're rare. Um.

Still, your cellphone can make you pop a rash, thanks to the nickel content. (Click here for the article in CMAJ)

Indeed, says my jawline. We knew that.

Roughly 1 in 5 women are allergic to nickel, and a mere 3% men. The allergy has some deeply challenging and distressing effects, such as limiting the use of jewelry to the seriously expensive, low-nickel content stuff. Unless, of course, you have a loving and thoughtful spouse, who is willing to bring you joy and give love - to the budget - by hunting around for nickel-free, gold-free options.

I joke, of course, but you should have heard me swearing at my cell last summer. And itching.

For more on nickel-free cell phones (or mostly nickel-free), try this. And if you are wondering whether you are allergic, talk to your doc. Who might just do what mine did, oh, lo these decades ago, and tape an old nickel to your arm.

post-scoop, or bringing back the dairy at BCH

2011-05-27T20:53:00.001-04:00

Many thanks to those of you who emailed me with your thoughts - and wishes - regarding the Eldest's reintroduction to dairy. (cheese-cheese-cheesegimmecheese-ooh, ice creeeeeeeeeeeeeeamcheese) Yes, other tolerizing efforts are going on around the nation, and yes, right here in MA.

At Boston Children's Hospital, in fact. We were not part of this study, but you can read - or watch! more about the BCH clinical trial here, or watch Dr. Lynda Schneider explain it:

We're familiar with Dr. Schneider as the doc who didn't laugh during one of the Eldest's food challenges. The kid, tired of being asked to yank up his shirt every quarter-hour (to check for hives), decorated himself. In green marker. He put one dot over a middling high rib, another on the matching rib, a line downwards, and a flat, curving line just below the belly button. It looked roughly like this: :-) His nurse was nearly 8 months pregnant, and laughed herself silly. It was a whole lotta laughter - but Dr. Schneider, alas, didn't find it infectious. And yet, listening to her in this video, you can see that even if she doesn't get the Eldest's sense of humor, she does understand something about what food allergies can do to a family. Good for you, Dr. Schneider!

For more of this series, you can watch Robyn Nasuti demonstrate the impact of a food allergic kid (or two) on the family food budget. I was struck by Robyn Nasuti's willingness to cook multiple meals for her children. It's not an effort that I could sustain. The amount of time involved in preparing this individualized menu must be enormous, and how one maintains an identity outside of Allergy Mom - or a life outside of the kitchen? is beyond me. But different families make different choices, based on their different needs. Looking at the Nasutis' list of allergens, it's clear that their choices serve to keep their family going. And if three different dinners works to do that? well, then, three dinners it is.

In another clip, Ming Tsai, chef and father of an allergic child, talk about his efforts to educate others, and life with his allergic son. Tsai is wry, pragmatic, and I admire his ability to make things happen. The legislature that he helped craft - and see into law - offers a very basic education to folks working in restaurants. And, if you are wondering if that education is needed, I suggest watching the following clip about Brett's own efforts to educate his peers. The children's misunderstandings of food allergy - that the big 8 are "all of the allergies" are common. Adults share these misunderstandings, and frankly, adults worry me more than the kids. Because, as we all learned from the parents of Edgewater, where the adults lead, kids follow.

Which makes us, some days, a living, mobile exhibit in the Things That Don't Happen museum. I told my wife that this allergy thing isn't really true, a lovely preschool dad - and educator - confided. Our son is lactose intolerant, but it's just not a big deal! So why are all of these people getting so upset about food allergies? He grinned and shrugged. I shrugged back, and arranged my face into something as far from wtf as possible.

Yeah, I nodded sagely. Never saw anything like this allergy stuff when I was a kid. Maybe someone had hayfever, but that was it. And now? I flung my hands up, EpiPens everywhere! We offered each other resigned, wry expressions. If I hadn't seen the kids have the anaphylactic reactions, I said ruefully, and paused. Shook my head. I'd never have believed it.

His head whipped around. Really? The anaphylaxis? I nodded, remembering.

Yeah. Never seen anything like it before it happened the first time, but it's pretty nasty. The kid starts to cough, vomit, then he's wheezing and his throat is closing. It's pretty bad. So, yeah - I understand why parents get scared. It's a nasty thing, and it's easy to overprotect because it's so scary.

He blinked. You know, he said slowly, you are totally ruining my world view.

I grinned. I've heard that before. But if it helps? Lactose intolerance isn't an allergy. It's a missing enzyme that the body needs to break down the dairy.

He flung up his hands, possibly in relief. Well! At least there's that. And trotted off to tell his wife.

do all the things??

2011-05-15T00:45:00.000-04:00

With thanks to Hyperbole and a Half, and if you are scratching your head right now, stop and go read this. No, really - I'll wait.

So, if I have a fault as a parent (what, me fault? cue the cackling children), it's my love of projects. Oh, I do love me some projects, possibly seventeen or so at a time. So we trip off happily to the yarn store, and find yarn to teach the child crochet. Or fabric, because we're going to teach the child sewing. And, in each case, we shall create marvels, and it shall be good.

Also? It will take so long to complete some of these marvels, whose marvellousness will expand and origami itself as the child gains competence and understanding of the technical skills needed for the project, that (deep inhale, cripes this sentence is running amok) the kid will lose interest. And I will end up pushing, because inevitably, that project was to be their grandmother's 60th birthday present, or a friend's birthday present two freakin' years ago or, or, or.

And then we both hate the project, snarl at it and each other, and stomp off. Until the next project shows up.

(sigh)

And then we'll do it all over again. Because for a brief, shining moment early in the whole project trajectory, the kid has an idea. The mama backs him up. There's a special trip to the store that sells the supplies, and we romp through it like selective magpies, falling in love with all of the shiny possibilities. We collect endless project idea cards and handouts, and gaze at them and a possible future of creative wonderfulness. And I take pictures like this one, which leave me damp of eye and proud.

That's my grandmother's sewing machine, schlepped to the country by my mother, and used (infamously) to make the Eldest's siddur cover. And that earnest face? Well, it don't help us kick the habit, is all I'm saying. In fact, it's rather irresistible...

Note for the perceptive:
The buddy-taping in the photo is more or less for the reason you think - at the time, the kid had a bleed in the joint of his middle finger. It was a beeyoutiful shade of reddish purple, and worthy of admiration at the dinner table. Which is, of course, where I noticed it and inquired as to cause, duration and all of those finicky details. My hand? asked the child, surprised. And looked. Oh! Wow! the Eldest exclaimed, and seemed honestly surprised. That hurts! Across the table from him, I nearly choked on my tea. And it really is purple!

Sometimes, the hard part about being a parent is the urge to howl with laughter - and not being able to do anything of the sort.

Note the second:
The kid is, of course, fine. And my diaphragm is still recovering.

a pause for memory

2011-05-14T23:34:00.000-04:00

It's no coincidence, I always think, that my grandmother's yahrzeit falls so near to Yom haShoah, the day of remembrance for the Holocaust. I should not have known her well - she lived impossibly far away for most of my childhood, and lived nearby only for a blinkingly short time. But in that blink? Well.

A teenaged trip to Poland, touring the concentration camps, because that's what you did with your gratingly idealist Jewish teen in the 80's, and for all I know, still do. The kids came home shocked, quieter, and many of us, angrier. Try gratingly idealist with an edge of historical angst? Yeah. Great. I came home stunned, and realizing for the first time that there were numbers large enough for me not to grasp, and that those were numbers of people.

I'd learned that, as it happens, in a warehouse of shoes.

Anger, I rather thought, was a reasonable response to the unimaginable. But my grandmother mourned such anger in her quiet, determined way, and had far more right to it than I. She wrote endless letters, trying to educate people about the Holocaust, teach a nuanced, thoughtful understanding of history. And she was not angry.

I missed that at first, awash in a collection of her oddities. She didn't bake cookies - she mashed bananas and sprinkled carob powder on them. She had a compost heap, and believed in rot. She ate this buggy, dirty lettuce, sold in coops (what the what the was a co-op? hell-o? seventies?) by people who didn't believe in deodorant. She treasured her friendship with a farmer person, who didn't believe in using modern fertiziliers because oh, maybe somehow they'd be bad for you. And oh yes, there were the herbal remedies. And her vegetarianism. That chamomile tea will lighten brown hair, turning it nearly blonde - and didn't I want to try that? And wierd quirks about plastic in the microwave. What was there to understand? The woman was sweet but high, high, high on the seriously odd scale.

If she had one saving grace, teen-me thought, it was that she made the absolute best sandwiches ever. Thick, crusty, never seen the inside of a supermarket bread. With seeds and things in it. Slabs of avocado. Crunchy bits of sprouts which were sneakily delicious despite being so - so - hippie. And oh! that dirty lettuce, washed and crisp and melting. On that foundation, she wreaked a range of marvels. And, being the food slut that I am, I fell in love.

Years later, I'd be a parent, making decisions about organic food and whether a bit of ginger might settle a young-un's tum. But back then, I was a fuzzy teenager, chewing on a revelation and learning that individuals count. That the specifics of circumstance can rule you, and that unless I knew those specifics, I could not judge. I set that thought next to the impossible warehouse of shoes, and watched it. Chewed. Tried to undercut it with her narrative of the Warsaw ghetto uprising, machine guns and the camps. Swallowed.

Considered.

The sandwich - and the idea - settled deep inside me, both setting standards for which I owe her.

Decades after her death, I found myself in a produce store, staring at a rather lumpy looking bit of citrus. And then frozen, inhaling the distinctive smell of a sour orange, and remembering sun-rich fruit, and a farmer casually picking something perfectly ripe. Think about patience, thoughtfulness and smile at the orange in a way that made an older man tilt his head and watch me. Grin a little, even.

She echoes, my grandmother does. And I miss her.

bloggish smirks - and a pause to be warned

2011-04-30T20:40:00.001-04:00

Somehow, in a fit of former grad-studentness, I became a MedPage reader. A not-quite daily medical/science news update reader. MedPage added blogs at some point - I noticed at a far later point - and read them oh, whenever there's nothing good on in the world of medicine. Which is not so very often, honestly.

But sometimes, I do. And then I wonder at the indignation of someone like this, writing about the horrors of preschool pizza. What is she worried about? It's pizza! Do you know how much lousy, crunchy clinical trial food my kid ate to get his pizza?

This is a line in the sand, drawn by someone who knows that something dreadful lurks in the dunes. Another blogger helpfully explained: it gets worse. Kids eat the most amazing crap in schools, breaded and served up with a side of bread. Or potatoes. No, really. See? Count the number of green things, the second blogger suggested.

Or go for the gusto, and count the ways that you can make a celiac twitch.

And that, I realized, is the missing link between an allergy-friendly school and a school that really cannot be bothered. Or won't. When the monolith of the school menu is standing there, all sorted out and scheduled and packed with the carbs, salt, oils and proteins that kids will eat - and oh, but finding that magical, what they will eat is not to be sneezed - or hived - at, then who wants Change? even Change for Good Reasons?

We know how to feed them. Sort of. Until the allergy kid comes along, leaving shredded cafeteria menus in their legislatively enhanced wake.

Um. Well. Okay, so maybe we still can feed 'em. But from the looks of this menu, we figured out how to feed our kids back in, oh, 1940? And haven't really thought about it since.

Or maybe this has nothing to do with the immunocentric universe, and is really about something far more basic. Like the possibility that taking candy bars out of the school vending machines? A faint, feeble start. Stop picking on Snickers - think about this: for a massive number of school children, this is the central nutritional pillar in their world. Which, to my untutored eye, explains that.

Which is so depressing that I'm going to shut up now, and soothe myself with some Buffalo Bleu chips.

Passed over. Next? (with menu)

2011-04-29T00:33:00.000-04:00

So, Pesach. was. awesome.

The Man worked insanely hard at work and at home, and began moving the laundry along and forgetting to press START. The kids learned that, temporarily (the adults told them, earnestly) the playroom was being remade into the Place to Store Jillions of Dishes. Also Pots. And they dealt with that, wisely taking over the long, open floor of the living/dining room.

You can wage some serious epic battles between droid-dominoes and Jedi-dominoes in that space. Also, a modified, refrigerator magnet form of Rogue. Maybe even teach it to some friends. Except when you are carefully checking the rice and beans - three times - for stray grains o' barley and such. (Also? finding them. Kosher for Pesach, my allergy mama ass.)

And I ran around, making lists, reworking last year's lists, realizing that the lists were multiple pages long, hyperventilating and explaining to paper bags that I just did not have the time to do all of this, and if i could please just get a wee bit more oxygen, I'm sure that I could do some prioritizing.

The kids brought home wonderful bits of art, a ceramic object designed to distribute grape juice to four cups, and the sweetest seder plate, made by a sweetly earnest small person.

Like that one.

And that one.

The Man and I raced around, trying to actually enjoy - and encourage? - the kids' enthusiasm without actually having to stand still long enough to do so. Until it was time to light a candle, get out a carefully cut paper feather, and unleash the kids with flashlights, to hunt for the chametz. Because we have some, you know - oats rock my world, even when they force me to clean it, too. The boys raced through the house, shrieking with glee. I got it! I found it! and hey! that's great - I didn't think of looking under there! and the adult how on earth did you GET under there? And (thoughtfully) how are you getting back out? and the inevitable, Noooooo! I was going to find that one! and, then the hiccupping, damp wail of bu-bu-but he found two-thirds, at least, and I wanted to find half. And now I caaaaaaaaaaaaaaaaan't! Followed by a quiet slipping out the door by one parent, three very subtle thuds and a thumbs up.

Equity more or less restored, we were on to the seders. And the fingerpuppets. The plagues, as brought to you by the dollar store (jumping plastic frogs, red paper confetti, etc), the four questions as brought to you by Vanna Toddles - complete with glamorous waving motions - and the best Red Sea enactment ev-ah. (Note: I love teenagers. They give a whole new height? depth? to the concept of parting the waters.)

We missed some of our dear and insufficiently near ones, welcomed friends, and discovered that the formula of two preschool (current and former) teachers, plus one librarian plus the rest of us = a bouncing, question-prodding, puppet-waving seder with a fair dose of speed and giggles. And oh yes, who bring friends with their own set of hand puppets. And kids who walk into the kitchen and say things like, hi! how can I help?

It was undeservedly good. And at the end of it, when the last guests had left and we were merely elbow-deep in dishes, the Eldest rounded up his brother and father, and the three of them stood in the kitchen and applauded.

I am so doing this again next year.
***********************************************

Pesach/Passover 2011 - as planned, and occasionally as delivered to the table.
note: we follow Sephardic rules for Pesach, and eat rice and beans.

1st seder
* carpas: parsley, tiny red an' yellow an' purple potatoes, broccoli, carrots, potato chips. Salt water.
(add in: chimichurri, guacamole or gremolata, grapes)
* charoset:

apples, raisins, lemon juice, cinnamon & sweet red wine. Add ginger juice to taste.
fresh cranberry-orange relish
orange confit, if I can find the time to make it. (I didn't.)

dinner:

green salad

sweet potato fries/rice

some sort of meat (!!!)

mint sauce

-----

lemon sorbet

blood orange sorbet

Tuesday: lunch

make your own sushi with lox, cukes, avo, scallion, mango, lettuce, sushi rice - and, regrettably, with some faux, Passover-friendly non-soy sauce. The sushi was a hit - the non soy sauce was not.

2nd seder

*carpas: see 1st seder. Add in: melon, strawberries, etc to sustain the smalls until dinner. Even though they were fed a pre-seder meal. Also? dips.

*charoset: see 1st seder. And don't slow down on the magid, because we're going to lose a third of the shorties by the end of dinner... But at least they'll last long enough for:

dinner:

green salad

Karina's crustless vegan pumpkin pie, heavily reworked into a sweet potato deliciousness.

maple syrup salmon

baked chickpea salad

-----------

orange sherbet (oh, Alton - you marvel!)

sorbet, sorbet and more sorbet.

Also? fruit. Apple crisp if I have time.

Wednesday:

leftovers. Also? dishwashing.

dinner: okay, here we might manage something like a shepherd's pie using the leftover meal/poultry from the 1st seder. Bulking that up with hot dogs. Unless, of course, there are mere shreds left over from the 1st seder, in which case it's a good thing that I bought those boneless chicken thighs.

Leftover rice, plus add some of the citrus surplus to sliced red onion, cracked green olives, a handful of red grapes and the leftover romaine leaves from the seder for a green salad. And oh, by now, those plantains should be beautifully black. Whip out the wok, honey, and get a-frying.

Thursday:

make your own cheese matza deliciousness. We supply the best GF oat matza that Lakewood can make, umpteen cheeses and heck, dips and veggies. Extra points for the unexpected and yummy.

dinner: um. Who can remember?

Friday:

dinner: rice, leftover salmon, salad. Dips. Sorbet! Wow, this meal thing practically runs itself, given enough momentum. How many times can I say 'leftovers' this week, and in how many different ways? Tonight's phrasing: wrap it, baby.

Shabbat:

breaded (oat matza meal!) chicken and hot dogs

Dougie's buffalo wings sauce

condiments & cranberry relish

salad with extra crunch, to balance the mush/squish of the really moist, super-marinated chicken.

rice with fennel & herbs

dinner: basil pesto pasta, salad, tuna. Pickles!

Sunday: dinner

leftover milchigs/dairy, reinvented in fill-your-own baked potatoes.

Yeah, kind of like that. (Note: the green stuff under the carefully mashed and re-filled potato is avocado. Also, an olive. History is politely mute as to whether the potato was consumed, but contemporary journals suggest that at least 2-3 purposeful bites were taken.)

Monday:

dinner: crepes! Time to go light and sweet, so whip up some cream (oy, me achin' arm), slice that dripping-sweet melon, sprinkle some of the last of the mint, chop up the sad strawberries and douse them in sugar and lemon juice, and heck, put some lemon juice into a tiny bowl, and some sugar into another. Crepes.

This is the bestest Pesach food ever, Mum. Why haven't you made this before?

I surveyed the sweet-fest in front of me, and considered.

Actually, I have. It's just been a while.
The Toddles looked up, chewed, swallowed, and put a slightly greasy hand on my shoulder. I love you, Mummy. But I like your food better.
I nodded. All things considered, I was fine with that.

Crepes provided breakfast and midnight snack for the next three days. and by the time we ate our way through another three or four meals, crepes were also providing school lunches. And it was time to dig out the kitchen, update the Pesach inventory and find just enough non-Passover dishes to be able to cook for shabbat.

Which, by tomorrow evening, we will have done. I think.

listening to science - messy and otherwise

2011-04-07T07:15:00.000-04:00

New York Hall of Science...meets parenting special needs. Either this blend of science and messy life-as-lived is characteristic of this institution, or I have much to learn about science.

On a rather unrelated note, I have continued the warping of my children. Today, the Eldest asked if we could listen to Radiolab, rather than just playing some music? Please? There was a longish pause, while the Toddles considered whether he was going to be offended. And wasn't.

Heh.

In fact, I lie: this is not an unrelated note - I hooked the kid on Radiolab with their story about a rescued lobster, waited a week, then gave him a bit of the Loneliness of the Goalkeeper show. That he stopped reading Fellowship of the Rings to listen? coincidence, he told me. And then got to hear him argue about how, just because I'd pulled up to the curb and turned off the car, doesn't mean - surely! that we had to stop listening to the Yellow Fluff/Scientific Discovery (or, how I came to love the fly that is eating my brain) show.

Radiolab, if we end up blasting Richard Holmes' Galois story while walking home, I won't blame you - I'll be laughing too hard.

probabilities and surprise

2011-04-05T07:13:00.000-04:00

Watch out, Mum - you want to stand back - there's a 50/50 chance that I'm going to throw up.
[pause]
Uh, oh - it just got worse. 45% that I won't throw up.

[meanwhile, in another room]

Oh, wow! look at that!

Yep, says the parent. That's one purple knuckle you've got there.

Kid, enraptured, oh - and I don't want to straighten it! See? (rotates hand back and forth, eyes wide with fascination) and it doesn't bend, either. It's - it's - the Eldest, struck by a new thought, looks up, it hurts!

*****************************
Tonight's score on the kid-o-meter: 50% chance of child self-awareness before incident. .0007% chance, going forwards. Degrees of accuracy? assuming a confidence interval of oh, not so very much, and correcting for variability in the data, um, it depends.

backpedalling and scornful hindsight

2011-04-04T00:13:00.000-04:00

In Florida, a school is backpedalling. Edgewater Elementary has reconsidered the 504 plan put in place to protect a first grade child with preanut allergy. This is hailed as a triumph by the protesters, one of whom said that the school is now trying to work with us. That's what we wanted all along. Experts have pointed out that some elements of the plan are unusual (and potentially unnecessary) and Gina Clowes twittered, accurately, that Allergy Moms should never cry wolf! We need to ask for what our children need to stay safe and included and not more. (3/28)

(deep breath)

Let's start here: sanity and a functional partnership between the food allergy (FA) parents, their medical team and a school is absolutely necessary. When a parent sits down to work out a 504 plan, they are the conduit between the doctor and the school. They relay what they understand of their child's medical needs - and many are the studies that show how flawed that understanding can be. To balance any unintentional bias or misunderstanding, the parent supplies paperwork, a food allergy action plan, contact information for the allergist. They talk about the child's history, what has happened and what it looks like. They learn a little about the school's perspective, how things work there (nurse? no nurse? where are the Epis kept? what happens in the lunch rooms? how often do you have food fights?) and tries, politely, to figure out how much the school understands about allergies.

Don't fool yourself into thinking that this is enough. The school comes with fears of litigation, regulations galore, staff who might be anxious or resistant or just insisting on a degree of precision in their instructions. The FA parents come with their understandings, their misunderstandings and a fearful, hopeful please, please do right by my kid! And everyone hopes that the diagnosing doctor has got it right. It's painful to read about the unevenness in the ways that allergies are diagnosed, categorized - and therefore, managed - and the education provided to patients' and their families. Best care practices? For folks who don't go to a select few clinics, best practices means whatever their allergist - or pediatrician - tells them.

And yet, Gina is right. Don't cry wolf. As the advocate mom, you absolutely, positively must have some authority. People need a reason to believe you when you say, this is what my child needs to be safe. To coexist in a world of her peers. Because - and I did ask - the allergist isn't going to be able to show up and say that for you. (Note the waiting lists for appointments and food challenges. That's why. Our hemophilia treatments center can send a nurse practitioner *and* a social worker, but hemophilia? rare. Allergies? really, really not.) So, parents? Don't screw it up.

Hello? Have we not read the articles about false positives on the allergy tests? Did we not read about how some egg allergic kids can tolerate eggs in this format, and others can handle their allergens in that? Um. So, if the doctors aren't able to keep up - and are making mistakes - and don't get me started on patient/family education, how is the parent supposed to avoid screwing up?

I'm going back to what I said earlier: if you weren't in the room for that 504 plan, you just don't know what happened. And, as Dr. Scott Sicherer pointed out, if you aren't the child's doctor, you just don't know what she needs. Maybe the school asked for the peanut sniffing dog, to help them make sure that they knew where those pesky peanuts were hiding. Maybe someone pointed out how oral kids are in the younger grades, and that they put things in their mouth. What if some peanut stuff got on a pencil - and the allergic kid picked it up? Fear of litigation, a desire for a margin of safety, an honest wish to do right - and yes, misinformation of the most well-meant kind - these are all reasons that a school plan might edge towards the conservative. Possibly tip over the edge, towards aggressive. Litigation is a silent demon in the room, as is the honest, compassionate worry about not doing right by a child. By one of your kids, a kid in your classroom. It's just so much easier to walk away - which is why we needed ADA and IDEA; sometimes you have to force the system to do the right thing, despite the risks. To learn how to do the right thing. Public schools have learned, but they are still - and rightfully - anxious.

I can live with the good reasons - the well meant ones. I want to wail about the lousy education that most of us get, and oh, I could tell you stories about positive allergy tests that were positive - maybe. Or positive until the kid's IgE dropped, maybe once the pollen season was over. Or positive only because we weren't yet working with the fancy shmancy allergy clinic that saved us, and the other allergy team just didn't know enough. And I want to take out a billboard and say: that kid can't trust her classmates, because their parents are teaching how to lash out in the name of your pseudo-rights. The kid's parents can't be effective advocates, because the big experts have gone on national TV to show how wrong they are. And that school has now taught the protesting, self-centered people that oh, a plan designed to keep a child safe? Negotiable.

Safety, accurately described and understood, is not negotiable. Clearly, that accuracy is just not possible here. The experts were right to say what they did, the school was right to rework the plan. The parents were right to ask for more information - but the poison is in their picket line. In keeping the non-allergic children home from school, as a form of protest. In putting those children on the picket line. Because ultimately? it takes more than a 504 to include a special needs kid, you need to have school, family and community working together. And after these events, I cannot see how this is a school community that will show the necessary compassion, or respect this issue in the future. And I cannot see how the FA parents were anything but set up.

And I worry deeply about that child. She won't just be different in a world of her peers, and she hasn't been allowed to be merely different in a world of different needs and different children. Instead, she'll be herself, complete with her medical needs - and those needs, or difference will be mocked, used against her - if not simply and dangerously dismissed by her classmates and their parents.

And in that, there is no safety at all.

**************************
For more on the story, see this thoughtful bit of reporting, which talks about the medical need and missed opportunities to teach compassion. Kudos to the NBC team for a balanced report - and hat tip to the Allergy Mom Supreme, Gina Clowes, for the link. For a (self-declared, though anonymous) parent's perspective, try this.

step away from the virus. Yes. Just like that.

2011-04-01T18:48:00.000-04:00

except that there's this rubber band thing, that snaps you right back in there. Twang! (that's gotta hurt)

Day three of the sickies, and the Man is now quietly and wisely replenishing my chocolate supply. Bless him. And I'm actually going through my email, in hopes that there really is life on the other end of my steadily elongating tunnel. (have spoon, will tunnel to freedom. or at least, fresh air.)

We've now watched all of the Pixar shorts that I could find - Geri's Game? love it! - played round after round of Uno, added pockets to the Toddles' Purim costume, napped and turned our sad, sandy front garden into a geometry project.

If each square on the graph paper = 4 inches, and we build a 10x40 raised bed here, a 36x40 raised bed there, and a 10x36 raised bed there, can the gigantic recycling toters that will SAVE OUR WORLD be able to get through to the sidewalk?

answer: um. eep.

We cut out a paper toter, generously sized, and maneuvered it through the garden. Worked out missing bits, like oh - the existing garden beds? the left side of the garden? (ahem) and made a list of measurements that someone should go and get.

What about triangular garden beds? asked the Eldest, who had designed some in class. I looked at him. Could work, I said. Can you work out the area for me? Let's see which gives us more planting space. The Eldest nodded - thought better of it - and beat a hasty retreat. I'm - um - going to go play Uno with the Toddles, he informed me, virtuously. And vanished.

Leaving me with bits of paper, and a vision of a world outside. Or what it could be, if I only had the time - and a whisper of spring.

smelling comfort

2011-03-30T21:00:00.001-04:00

Okay, so there's a virus going 'round. This is new? I have kids, they spend time with other, kid-shaped persons, therefore we live in a petrie dish. There is always, always something going around, solemnly heralded as 'a really nasty one.'

Because if your kid gets it, and the carpool crumbles and the work thing stops dead in its delicately, fragilely balanced tracks, well. It done stopped. And catching up is something that people do in lieu of sleep, insofar as I can tell.

So.

Last night, the short one came into bed with us. I was already tossing and turning a bit - had an odd sore throat, bit of a stuffy nose. So, the little fellow climbs in, rotates to a finely judged 45 degree angle, and this time I do not wait for the feet to hook themselves, delicately, around my throat. I get out, hoist my pillow, and go find the empty bed that the kid has left for me. Done.

Tonight, he returns. Chattier this time, wanting to tell me about how he can feel his tummy when he breathes, and he's not sure that is a good thing. Water? oh, yes please, he says, politely. Blow your nose? Oh, that helps! he says, and is delighted by the discovery.

Forget minutes later, he is drinking determinedly, trying to keep things going down - rather than up. But nope, up they come, while the Man and I are still coming to grips with the situation, and splash! go many unmentionable things across the floor. On the bed. On, of course, the child.

Bathe the child. Shoo the sib and his father down the hall. Strip the bed. Splash vinegar cleanser liberally. Mop. Remake the bed, tuck the little in, and breathe. But you know what? The place still smells like sick, now overlaid with a heavy aroma of vinegar.

Mop again. And again. Realize that vinegar now had an association of sick. Pause.

One splash of tea tree oil on a rag, and now the room smells like a warm garden, with an almond tree growing in it. Most of the almonds are still green and fuzzy, and a tiny lady with a narrow, unlovely face is calling me for some mashed bananas, warm and sprinkled with carob. Somehow, this flavor is exotic and delicious, and sitting in here kitchen, I am content.

My Babcia always smelled of tea tree oil, which she swore was antibacterial - good for cleaning, she told me. That she was proven right is almost incidental tonight, when the scent carries comfort as much as it does hygiene.

it's okay to be different when...

2011-03-30T02:27:00.000-04:00

A few weeks ago, I showed Beauty and the Beast to the boys. We're too lazy to have a TV - or rather, to police one, sneer at it, and usefully deconstruct it for the kidlets. (literally and otherwise) But once in a great while, we creep out of our lazy Luddite cave to try something like this. As predicted, the Toddles bolted for the futon, hid behind his father - and eventually tugged the Man up and away from the overwhelmingness.

Could we have a story, instead?

But the Eldest was enthralled. Wanted to talk about why the Beast was drawn that way, so that he's scarier looking there and why Gaston eats all of those eggs - is he serious? and just - stare. And stare, frowning slightly - then hugely relieved - then curled into me, waiting. Oh! he said, watching Gaston fall into the castle depths. I wasn't expecting that. And grinned.

The next morning, when the Toddles crept out of hiding, the Eldest was still locked onto the movie. And, apparently, so was his brother. Forget the Beatles, forget the Black Eyed Peas - and even They Might Be Giants. No Little Richard or Benny Goodman - we've even sworn off Trout Fishing in America for now (not for long, kids - please? not for long?), while the Beauty and the Beast album is on endless loop. Play the Beauty and the Beast music! the back seat insists. Go get the mob song - it's missing from the iPod!

And, don't sing along, Mum - you are getting between me and the words.
Right. Sorry, kid. (hrrumph)

Eventually, the cross-eyed stares melted into something else. By the nth repetition of the mob song, the shorter one was looking thoughtful.

Why are they afraid of things they don't understand? the Toddles asked, and ruthlessly, waited for my reply. I tried to explain about how things in the dark are scarier than in the daytime, things you don't know can be scarier than things you do know - or can figure out - and he weighed my reply carefully. That makes sense, he conceded.

Actually, I'm afraid of Gaston, he confided. The Beast has scary drawing, but Gaston really *is* scary.

I nodded. Deep, soul-certain self-centeredness is absolutely scary. I told the kid so, and he looked sad. Yes, he said. That's why we learn about derech eretz, right?

The next day, the Eldest passed by the mob song, choosing instead Belle's theme song. He listened to it once, twice, brushing off my rather paltry 'different but special' routine. No, Mum, he said, suddenly. Listen to it. They [the townspeople] call her odd, and strange, and say that she doesn't fit in. But it's not until Gaston says that he wants to marry her that they say that she's different but special. And that's only because they like Gaston, see?

I did see. Difference is only special if someone is willing to value it - or you.

We don't like what we don't understand, eh? I suggested. In the back seat, a kid nodded. So, perspective matters? or understanding?

Both, he told me. Firmly. He had reason to know.

toxic information: warning, may not be extractable from brain

2011-03-28T22:27:00.001-04:00

Some days, it's just not worth it. You can do everything right - get an allergist to work with you, talk to your kid's school about a 504 plan, have them talk to your kid's doctors, and even buy a cute backpack for your kid to take to school.

Oh, and offer to pick up treats for a school party, because hey, your child might have allergies, but kids should get to celebrate, right? And when you can set it up so that everyone celebrates together, with allergy-friendly yumminess, well. You rock, mama.

It's just too bad that someone forgot to explain this to the other parents.

While I'm torn between an urge to march on down there and start lecturing - and an urge to screech - the truth is that I get it. Let's start with transparency: for the people outside of a process, especially a bureaucratic one, it's really really easy for the process to seem biased, sloppy or just plain wrong. Is the child really that allergic? I wasn't there in the 504 meeting, but a doctor was involved. Was the child correctly diagnosed? Not being an allergist, I'm really in no position to say. Are all of these measures necessary? Oh, goodness knows, but again: not an allergist. Still, in our experience, a small portion of the measures taken to protect our children come from anxiety, or a need for certainty and an extra margin of safeguards. A large percentage comes from medical need, as described to the parents. And there, folks, lies the grey area. Doctors hate questions like, 'is this safe?' because the wrong answer can leave them open to lawsuits. Parents hate undue risk because the wrong choice can mean any number of scary things. So. Schools take on liability, parents have taken on a whopping dose of fear - which means that the doctor's role here should be all the more reassuring, as s/he can provide perspective.

Nonetheless, in this poll, 71% of respondents were certain: the school was wrong. And trying to spring the unfairness on the parents. Why are we being kept in the DARK? read one protester's sign.

It makes me crazy to think about how tiny the opportunity is for lighting that darkness. Once folks apply sharpie to oaktag, the opportunity for reasonableness, or even for education is essentially over. When the school's spokeswoman talked about the 504 plan, the legal requirements and process that the school must undertake to accommodate a child, I don't think people were listening. "Rights" ring more purely than legislation. No wonder that Wrightslaw has such an intense section on advocacy, and how to do it. I've read it, practiced it - and still, my success as an advocate has always depended on who is listening. People who are open to information, flexible and willing to be partners? Love you all. People who have already decided what is true and what is needed? A trainwreck, aimed right at the kid.

"You can't take peanut butter and jelly, or any other right away from my child," a parent screeched. And her message echoes through the school hallways. In a less controversial class, classmates are protesting the limits set for a second peanut allergic child. "They say, put me in another class," said the little boy. "So that they can eat peanut butter."

His face is bewildered, his mother nearly incoherent. Facing them are passionate, appalled parents, explaining that they don't want to be unfair - but that a child so allergic as to require accommodations affecting the class? Should just stay home.

It's unutterably sad. When did rights mean get out of my way, I want to live my life the way I want? When did this narrow indignation usurp generosity of spirit, or a sense of flexibility, possibility - or heck, kindness? If we could only back up the tape in Florida, I'd sit down with those parents, and say, hey. Let's try this: take a kid who has been shut up at home. A kid who has been inexpressibly lonely, and who would love to leave their bubble - but is probably scared. And let's say this to that kid:

And that's it. Instead of no, you say yes. You say, we can instead of mine, or I won't. Maybe, wisely, the school says it first, and helps you figure out how. And then? Together, you take the kid who was shut out, whose school told him to go away, and then you open the door. Come on in, you say. Because it really is that easy.* And then, you show him that you get it.

Maybe you are in preschool, and all you know about allergies is that they make you sick (see the rash?) and that sometimes bees are involved. Oh, and thermometers. That's plenty for a little kid, who doesn't really need the science - they just need the general concept, plus help in being a good friend.

Welcome to lunch, the little kids said, in their own, pre-literate ways. Please don't be that sad, sick kid. Be this kid, instead!

(for a four year old, that's one seriously happy face. Plus kipa, fyi) Be this kid! Be laughing! Or, says another child, be this kid!

Hair, curling everywhere, arms as wide as the world, and a smile so wide that it's taking over the face - and needs an extra set of eyes to twinkle alongside it.

Welcome to lunch. We're so glad that you are here! they said, and the Toddles sat, proudly, at his special, decorated table. His table was pulled up against the other kids' table, and he sat so carefully. Shining with pleasure. Learning how to be a child - how to be That OMG Allergic child - living in a world without bubbles.

And laughing.
****************************
You can read the school's puzzled response in HuffPo (hint: ADA? not so familiar), an opinion piece (also, not so much with the ADA), this pithy response or this one. Or you could cut to the chase, and go straight to this call for everybody to just stop, and take a deep breath.

But I would rather that you thought about this: when people aren't educated about food allergies, this is one thing that can happen. Death threats were made, and the child's parents chose not to keep her in the school. That's one outcome. And this, sadly, is another. An educated peer - an aware adult - someone could have asked the question, is this safe for you? And we'd have one teenager, sans coma.

* and if you are having trouble, there are wonderful resources out there, like this one: http://www.school-lunch-ideas.com/
**but you can laugh about it. Like in this cartoon.

say ahhhhh

2011-03-15T07:42:00.001-04:00

and hold very, very still while the nice lady with the long stick with the cotton bitty thing on it kickstarts your gag reflex. Nice try! Okay, so from the top: aaaaaahhhhhhh?

Um, said the Eldest, that's enough for now. But thanks.

The Toddles, by contrast, beamed. You want the cells in my neck that the virus got into, so that you can figure out exactly what virus it is! I know! (Note: the kid's favorite book is Cell Wars, because knowledge is power in my house, people. He's been carrying it in his backpack for months now, though, which I personally think is taking the matter a bit too far. But clearly, the kid's been waiting for his cue.)

The Eldest looked over. Your body already knows what type of virus it is. She doesn't, is all.

The Toddles refused to be unimpressed. AAAAAAAAAAHHHHHHHHHHHHHHHcough

strep A, people. Time to play our pediatrician's favorite game: Which Antibiotic? Because the Eldest has met them all, and oh, his immune system knows what type they are, too. Sigh.
***************************

The game winner was, btw, a drug that required the Eldest to take six times as many doses of medicine as his brother. And each dose was three times the size of his brother's, to add insult to injury. None of you understand what it's like, he wailed - right up until I ended up on the same antibiotic, same regimen.

Good work, Mum! he applauded tonight. Good job killing off those bacteria.
I bowed, extravagantly. I do, after all, take my laurels where I can find them...

consider the happy sleepy juice

2011-03-15T00:48:00.000-04:00

which nobody would ever let me take home. Just a wee dram of barbituates, darlin', to settle yerself after dinner? No?

dang.

The Man and I are sitting here, thinking about our upcoming parent-teacher conferences. No, dreading them. Considering whether we're going to accept the Man's ability to discover an essential meeting - at work - and admire his ability to be crucial, elsewhere. Because the Eldest has, over the past few years, refined and expounded upon his understanding of a world that just does not quite apply to him.

Like, oh, the classroom.

Forget buckets, the kid says, who the hell are all of you, and why are your faces between me and my book? Shove off.

And, being the Eldest, he's probably offering you a winsome grin, to soothe the shove. But still. The kid has talked his way through class, called out - or been unaware that there's this shoulder joint thing, and you rotate, so! and the elbow - yes, so - and the hand? maybe? Or not. (oh, well, says the Eldest, and tries the grin again.) He's walked out of the classroom, certain that he can simply avoid a lesson, should he so choose. Or, that - they don't need me in there - he can interpret his presence as optional. And offered your astonished, sputtering self some yarn, rich with his time and genuine liking for you, o teacher. (hopeful grin.)

Oh, it's going to be a fun, fun parent-teacher conference. And, in case you were wondering: the teachers are crackerjack, the school is supportive and the kid is miserable. When he's willing to admit it, that is. Which means that the Man and I are wavering between saying useful things like, wha'? and ohdeargah, and looking for a scapegoat.

Enter, the scapegoat.

Consider this study in the journal Anesthesiology, this news article, and this panel's thoughts regarding anesthesia in young children. No causal link has been shown - and that's crucial to remember when you are reading the next bit - but the study found that children with 2+ exposures to anesthesia, before the age of 4 yrs, were 59% more likely to have learning disabilities than children without 2 exposures. Kids with three or more exposures to anesthesia? 2.6 times as likely to have a learning disability.

There's lots of unanswered questions, like the role of stress from the procedure, the specific condition requiring an anesthetized procedure, etc. But animal studies confirm that anesthesia has an effect on neurodevelopment.

So, go on - ask me. How many times was the Eldest sedated before age 4? And if I bring that up at the PT conference, will it do us any bloody good whatsoever?

Answer: no, given that bloody good is herein defined as that which gets the kid out of this hole, and helps him stop banging his head on reality. But hey, nice to have a scapegoat.

this week's lesson

2011-03-13T01:43:00.000-05:00

sometimes, being reasonable just gives the other guy more space in which to yell.

sighhhhh

MA: bullying & derech eretz

2011-03-11T00:41:00.000-05:00

Driving to preschool, listening to WBUR's Morning Edition. Marty Walz is being indignant about the failure of Massachusetts schools to comply with the new anti-bullying laws. And the Toddles is rapt.

Do you know what she's talking about?
he blinks. No. But she's not happy with the schools.
Right. She wants them to work on stopping bullying, which is when you make someone feel bad about who they are.

We work through some examples of targets - a Muslim girl in a headscarf, a Jewish boy with a kipa, a kid with food allergies, or when i went to school, a kid with glasses was picked on for having to wear them. The Toddles shook his head. Maybe this is why all of the Jewish kids should go to school together, because then they will all be the same?
I grinned. And are they the same, at your school?
He paused. Shook his head. Looked worried.

Yesterday, Y made me feel bad because of an accident that I did. Is he against the law?

That's a kid getting mad - and there's a difference between being mean to someone, over and over and over, getting other kids to be mean to them, too - and a kid getting upset. Kids get upset! It happens. The difference is the culture of the school, like Marty said. Your school thinks a lot about derech eretz, so even if a kid gets angry once in a while, the teachers are helping them learn how to be good, caring people.

The kid thinks this over.

Then it's good that you changed the school, he says, decisively.

Absently, weaving through traffic, I realize that something didn't quite parse. Wha?

My first preschool didn't show much derech eretz. So it's good that you changed to this one.

pre-meeting shivers

2011-03-08T09:57:00.002-05:00

Okay, so I think I've been doing this advocacy thing for a little while now. The nice thing about it is that I get to have the same meeting, over and over. Which is also the less-nice thing, because some days I do rather think that hello, world? time to get it already. Hemophilia means X, allergies mean Y (except when they mean Y squared) and don't confuse them with asthma, which is, well, something else. Sheesh, people.

On the other hand, when I'm working my way through my third virus in three weeks, routine is good.

blah, blah, blah, did I mention that I hate talking to groups? look, cute picture of the kid, timed to buy me some breathing room, and yes, everything that I say pretty much translates to please, please, please help me make this work. Or heck, help me understand how to help YOU make this work. And did I mention please? I bring photos, I tell stories, I bring props - oh yes, even the muddy soccer ball - and do everything short of wearing sequins.

please?

I try too hard, I know. And I over-prepare. Oh, dear gollies, I do. I talk out loud, practicing possible directions that the conversation could take, because oh, I am not a negotiator. I'm a burbler, an earnest leaner-forwarder, and a gaping, gasping person hunting for rabbits in my bag of negotiating tricks. But I try anyway. And I get better at the meeting with each rep.(hello? naive much? a tetchy bit of my brain will shrill. Didja forget getting kicked to the curb?)

Which is why tomorrow has me twitching. Medical needs I get - being earnest and a good team player helps there. Having the other teammates be serious mensches also helps. And oh, we sailed right through the meeting about the Toddles' allergies. (more about that some other time) But tomorrow? Tomorrow we talk about the g-word.

gifted

I hate that word. I'm almost nodding along with Malcolm Gladwell on this one: gifted? really? As in past tense, as if that's the entire, smug story? As if being smart is a prize you win, a thing of blind luck, undeserved and shining. Bullshit. The reality that I see isn't a gift, it's a painful irregularity.

In general, I think that kids are lumpy. They grow, they sprout, they soar, they forget to take in their breakfast dishes. Take a kid who has sprouted so dramatically in one area, and he's even more uneven. Jaggedly so, because he knows - the Toddles can see where his skills are mismatched, and he tells us so. Sadly, the adults aren't so clear of eye, and we've fixed our expectations based on the best that we see - which we're defining, foolishly, by accomplishment, and assuming is representative. And we push the kid to live up to that standard, waiting for him to finally get with the program, but he can't - he's too busy getting his nose smushed into our frustration. If you can do X, why can't you put your shoes on the right feet?

And it's a funny thing about kids, but it's true: they don't want to be the bad kid. Not so fond of being the kid in trouble. Develops perfectionista habits to avoid his weak spots, glares at adults trying to lure him into the possibility of doing something that he considers to be appallingly sub-par.

Sub his par, that is. Or maybe mine. Both?

gifted? ha. gobsmacked is more like it. Codswalloped, because different is hard. Offered the Holland=difference narrative, Rob Rummel-Hudson explains: hard. Hard, especially when you are supposed to be gloriously cruising, offering a target for others - and yourself. (The nice thing about being gobsmacked is that you might be able to design a really inventive catapult for smacking yourself down from that pedestal.) At least I got to float in a relieved cloud of thank gah it's not aspergers or oh I don't know what and now he can save da world! for all of a week, before the kid came home and wept. N says he's not my friend anymore, because I'm smart and he's dumb. N was, of course, the first friend that the kid had made at that preschool, an older kid, wise in the ways of Bakugon.

But everyone is good at different things, said the Eldest, trying to comfort a soggy Toddles.

Measure the kids, and you are defining inequalities. Creating them, even, according to Rosenthal and Jacobson's work. (see here for more) Design a system to give them what they need, and you find gifts sprouting everywhere. Because, after all, how exactly do you define a gift?

I define it by me, said the Eldest. I am a gift.

And he's right. Ah, says my internal cynic. But without the label, you won't be able to fund your utopia. And she's right, too. So, then, the meeting.

So, do you want to kick us off by talking about why we are here?

(no.)
And I don't know what I'll say. But I know what I'd like to say: meet my zebra. He's a funky, intuitive leaping kid - and yes you have that other word but I hate it and can we maybe use a label that won't have me spitting cat pee and sand cocktails? Zebra, zebra, zebra. With pink butterfly boots. Quirky, funky, definitely unexpected, stripily delightful zebras. Who might just arrive holding their own, lumpily gouache yardsticks. If any.***

And I don't know what we do about that. But I'm pretty sure that 'happy' should be in there, somewhere.

And then I'll do the awkward silence thing, because hey, you know what? I'm just waiting for the part that gets scary. I was hissed at by a mom at a kindergarten event at one school, and glared at by others, so yeah, my working assumption is that people hate the mom-of-gifted-kid. Her ego is taking up more than it's share of oxygen, and you just know that she's got Quadratic Equations For All bumpersticker. That she is certain that her child is better than yours, and she's got the testing to prove it. So this meeting won't be about advocacy, it's going to be struggling to persuade people that I'm there to work with them. That I'm really not there to demand that we all admire my kid's marvellousness, while handing over the keys to the academic candy store.

This isn't going to be advocacy. It'll be apologies, self-abasement, hopeful questions about what they already do, what they already know. And then, maybe some advocacy. Gently done, because I won't have any street cred here. Because, come on? What kid can do exponents at this age - really? I've just got to be making this stuff up. I am mom, therefore he is brilliant, right? In fact, yes; in a recent babycenter poll, 71% of the parents who responded said that their kids are gifted. (but not lumpy?)

Oh, crap. Past tense, gift. A kid who has gifts, stars shining down upon him, providence in a pocket. So to be effective, I have to show him to be flawed, lumpy, uneven, fragile? And that somehow, that his fragility is greater than another child's, because he's - oh. a zebra. Ha. Or not.

You've done this before, right? I'll say. Help me understand what works in the classroom and what doesn't. Tell me what to advocate for, I'll be saying. Because even after weeks of visiting schools and interviewing directors of admissions and reading and reading and yeah. That. I don't know.

Oh, and -

please

***Got hoofbeats? say the ER docs, look for horses.

perception and timing

2011-03-05T22:16:00.001-05:00

One night, told to clean up the - ergh, fkmebloodyLego - bits and pieces in the hallway, he wandered around, decoratively, and then came into the kitchen to be told off. Looked at the mama, considered the angle and degree of froth, and told her, I don't think you are really this angry with me. You are frustrated with me, but you are really upset at Daddy, who didn't tell you when he's coming home. I froze. Yes. But do you understand why I'm not happy about the tiny Lego on the floor? That it hurt when I stepped on it? The kid gazed benevolently at me, and wandered off.

I know that you want me to, drifted back into the kitchen. But I just - can't. There's too much for me to be able to start on that.

What? Oh.

Wisely, this was the moment that the Eldest chose to give the mama a hug.

hot. me. cold. oh.

2011-03-02T21:56:00.001-05:00

Somehow, I thought I was being efficiently grumpy about the last virus. You know, the Virus That Ate Vacation Week, while I worked on sitting upright, and the boys constructed new and exciting Lego machines that decapitate and/or catapult things. Except when the Toddles took a break to contemplate poison Rice Krispie treats. (I thought he was thinking about the egg in many rice crispie treat recipes, but no. There was something about ice, possibly dirty ice contaminated with bacteria, and then also the poison, but I'm unclear. Hopefully the virus took notes)

The Virus That Ate Vacation Week got extra, super duper points for showing up right on the heels of the Virus That Bulldozed The Mamas, which romped through the school, knocking over mamas left and right. Oddly, the children were (mostly) immune. But hey, points for the bulldozer virus: I spent the week before vacation slightly dazed, muttering things like I can't be sick now - the children are coming! the children are coming! must. accomplish. things. ergh.

Somewhere in the middle of this, the Toddles visited the Eldest's elementary school. There was tea, there were other parents, glaring at the Toddles, who was essentially running his own Sumoku game while I worked on sitting in the chair (in. chair. sit. hot. me?) and we all waited for the screenings to start.

(playtime! said the nice people, and the parents stretched their mouths in a smile-ish way)

Hey, I didn't teach him multiples of whatever number that was. Didn't y'all notice the kid correcting me on my fours? No? Does it help that he pulled the game out and decided to bring it - but I suggested that we bring a nice book instead? No. Right, then. You know, if you hold the glare for a few minutes, I'm going to have some really entertaining chills during the head of the school's fireside chat thing, and possibly even say any number of not-quite coherent things. None of which I'll remember later. You wouldn't want to clobber the viral mess o' mom in the parking lot, right?

(hot. me. cold!) (oh, crap.)

Tomorrow, of course, is the big meeting with the school, to talk about the Toddles' educational needs. And don't ask me what they are - I don't really know. But we've got a lovely, crackerjack learning specialist coming along, who played games with the Toddles for hours and hours. Mostly, I have to sit there. In the chair. Me and the Virus That Was Just Plain Repetitive.

You look tired, said a lovely rabbinic person. I nodded, hugged her (oh, cripes) and then went home to spend a night shivering. (hot. cold. me. hot. waves. thermostat?)

dark spaces and quilter's flannel

2011-02-25T09:55:00.000-05:00

So, I have this Google Reader thing, and it's about as effective as my inbox: you have 334 posts to read, it intones. Plus lots of Baby Blues cartoons. But nobody's listening, see, because I might have posts to read, but I don't have time - I'm too busy glaring at the 1352 emails in my inbox. (Although I make an exception for BB, because, you know.)

But I do miss my favorite blogs, like this (on bedrest) blog, the Toddles' and my new favorite this one (and had I known that she was a mere brisk walk away, well!), the blogger who SHOULD get a satellite for A's birthday (IMHO) and oh, oh, oh these ones that feed the heart and tum- the please don't be defunct this one, and that one - the one I just found, the two that break my heart, the queen of the allergy lunchbox, the lady who produced the maker of an absolutely superb box, the ones walking in our shoes, and oh, more, many of which are languishing on LiveJournal. I'd go on, for fear of missing any particularly beloved blog, but you'll notice by now that this is really an apologia to the inhabitants of my Reader list, and I'm starting to feel like a variant on Dickens: guilt paid for by the word.

Enough. The point is, I let my Reader moulder, collect curiously shaped dust bunnies, which then debate the benefits of libertarian politics. Meanwhile, I wrestle with my inbox, let the Man lecture me on the proper way to write emails (efficiently, apparently), and mutter. But tonight, the kids finally asleep after an overdose on Disney, the Man and I were talking about a dear, if neglected friend. Which lead me to this post.

Okay, so first of all, cripes. I had that virus, and I'm assuming that the rest of the Imperfects were at least introduced to it, given the horking up of stuff that I've done over the past three weeks. I'm so sorry to hear that R had it - G? ST? YS? and all of the other alphabeticals. And you know, that thing gets points for combining the timing with the nasties. Because pilgrimages suck.

Oh, sometimes they really, really don't. But they do. And yes, I've been holding out on you, because our last visit managed to do both.

I can't begin to explain what dairy means to the Eldest, or to us as a family. Aside, as the Man points out, from a $30 rise in our weekly food costs. (Can't explain it, but can quantify it? Bah.) The Eldest's kaput!ted dairy allergy means something for what we put in our mouths, yes, but an easing of a fraction or two in my now-famous, unknottable shoulder muscles. (Forget Rafael Nadal - you should string a racket with those suckers) The two work together, in a wonderful positive feedback cycle of the kid can -> look! this used not to be okay, but now it is -> less worry, more breathe -> I don't gotta persuade nobody of nothin' here -> ahhh, the kid can.

Now, try the other version.

No, don't. It sucks great green goblins. And the thing about a pilgrimage is that you don't always know which one you get. Even if you had a great year, a bad year, maybe you read the signs wrong? maybe the labs will show, oh, something else? The Eldest's heme pharmacokinetics this year showed that no, he isn't working as well with his clotting meds as he has in the past, and we went to the annual heme visit (at, yes, a still-funded HTC) waiting to discuss The Rise of the Inhibitor, or the Great Statistical Insignificance.

(Don't ask me which one it was, I still don't know. The medicos don't, either, but they made up for it by noticing something completely different to horrify and entertain us all, as I'll tell you some other time.)

This year, we got both. The Great Dairy Escape, and the great green gobs of screeching heebie jeebies. Or possibly, screeching me(s). Hi, is this Miz Imperfect? I'm calling with the Toddles' lab results - do you have a minute? I did. I was also in the office of a really lovely director of admissions for a local lovely school. And suddenly, awash in numbers. So, according to this, the Toddles' RAST tests are double - or more than double - the ones from 2009. She walked me through the relevant results, and I plopped into a conveniently placed chair. Oh. The phone was sympathetically silent. Yes. It's fairly concerning, and we were wondering if there's anything that's changed? a new product that you might have questions about, a new food? ohgodohgodohgodohgodohgod

deep breath. Come on, woman - say it - well, the only real change that I can think of is that for the past few months, the Toddles has been eating lunch with his friends. He stays for lunch. At preschool.

And Miriam was right. At moments like that, I know that the dark spaces have been there all along, discreet little hatches, bulkheads that open and yawn which is unfair because, simultaneously the room is getting smaller and the damned bulkheads are eating all of the space - but that's a major milestone for him. And I don't want to take it away, unless we absolutely must.

Silence roars from the other end of the phone. Then, no. I agree. Let's not touch that until we have to. For now, why don't you look at the foods he's eating, see if you can identify any risks that might be of concern, and let's talk about them?

I nod, idiotic with relief. Oh. Um, yes. I'll do that. Flip the phone closed (did I say goodbye?) and blink, looking up at my now-worried audience. Who doesn't quite sigh, doesn't quite wince, but lets me scrabble myself together and think.

Because, truly? for us, the dark spaces aren't really quite medical. They're the places where our ability to live a life - a valued, rich and happy-in-our-way life - drops away. I'll tell you some other time about reassessing whether the Toddles can eat lunch at school, with his class, and the new mold allergy and angst-r-us. But at the end of the post, I am glad that there's this post.

So, let me sidestep the angst and my psyche's bulkheads to say, hey, ladies! I'm writing this post while curled up under a quilt. Don't know if you made it, but someone did, and gave it to HitWGC, and they sent us home with it. Now, it's the quilt that I put over the Eldest last weekend, when he had a bleed in his ankle. And that the Toddles snuggles under, for a sleepy waking-up ritual, and that I curl up with for my daily cuppa.

Dark spaces and bits of soft, flannel comfort. Yeah, it can work. Especially if that director of admissions is a very, very level-headed and sensible person.

(looks up. essays smile. tries again. sighhhhhhh)

we have secretly replaced your child with...

2011-02-23T13:05:00.020-05:00

Some days, I'm herding cats. Cranky, laughing, irreverent cats. Some days, I'm herding barbarians, shouting some fairly well honed observations about my personal habits and character. Mostly, though, my efforts at herding are observed, mildly, by youngsters who are fairly certain that none of this has anything to do with them.

When you are finished with breakfast, please clear your bowl.

Have you finished breakfast? Great. Please put your bowl in the sink.

Hey, kid - don't forget your bowl! It goes in the sink when you are done.

Pooh! say the cats, and stalk off. But their mother is less feline and more bulldoggerly, and lo! the inevitable frogmarch back to the table, the nice little demonstration as to what happens to oatmeal when it is left to ripen into a cement. clunk. The cats stare, awed. Oh, they say. And walk off, thoughtfully leaving their bowls behind.

Get me? Now, add in the usual litany from mothers-of-boys: toilet seats, dried pee on the floor, tiny Legos underfoot (curse you, tiny Lego!), the wadded, soft mass of former Pokemon cards in the dryer, the ensuing horror at discovering said former - and essential to life - Pokemon cards, used tissue decorating habits, the domestication of the chewing mouth, and any variety of entertainingly flying objects. Oh, and landing ones, too.

Etcetera. Except, yesterday.

Yesterday, having discovered that the grandparents were going to be visiting for an extra morning, friends offered to let me drop off the boys, each for a playdate at different ends of town. (Lessee. From Playdate House A to Playdate House B is 12 minutes. If I drop off at A, and then book it to B, can I return to meeting place C within 30 minutes? Factoring in the speed of light, and the probability of traffic cops in Town X at that time of the morning - no. Oh.) I slung the Toddles at one family, the Eldest at the next, and ran off to meet the grandparents. A wonderful 40 minutes later, the grandparents drove off - and I was calculating again.

Back to playdate A, where a lovely human being fed lunch to the Toddles and his mama. One of our favorite lunches, actually: rice, black beans, sour cream, shredded cheese and (for the mamas) hot sauce. Yay! said the Toddles. Rice and beans! Ignoring his disdain of this very meal when found in his lunch box, the kid proceeded to eat two helpings. Company adds an essential spice, you know.

Um, said the Toddles, eyeing the serving bowl. Is there more beans and rice?
The other mama thought it over. There is more rice, but that's the last of the black beans. She cast an experienced eye around the table. But I'm not going to want any more, and neither is your friend.
I shook my head. I'm also done, I told the kid.
So, said our hostess, you can go ahead and help yourself.
Thank you for the information, he replied. And filled his plate.

We watched him add the toppings, listened to him chatter. I hadn't considered that, he said at one point. That is useful to know, he said at another. The structure of his language was unreal, and the topics did not include anything exploding, Jedi or clones. I hadn't herded this kid - had I? Had he been reading How To Be A Guest under the covers at night? Or this, in the bathroom? (no, wait. he's still preliterate.)

(I think)
(also, David Lowry probably wouldn't approve of toilet media)

I stared, he chewed. Swallowed. Where should I put my plate? he asked. I started choking, but the other mum took it in stride. You can leave your plate there, but your spoon goes into the sink. He nodded, and trotted off - WITH THE SPOON.

Who the hell is this kid, anyway? Twelve minutes later, he'd persuaded his friend to join him in a pillow fight, and the two of them trashed the kid's bedroom - and then broke house law, by carrying the battle into the parents' bedroom.

Okay, so that kid? him, I recognize. And in case I had any doubts, there was the oatmeal this morning, quietly hardening in the bowl, on the tablecloth, on the floor...whew.

visuals count!

2011-02-22T18:23:00.001-05:00

She lives somewhere around here, and I want to find her. Sara Hendren, a local artist and mother of two, has been quietly upgrading handicapped stickers. And now, thanks to the Boston Globe, not so quietly. The current symbol for handicapped access bears no resemblance to my college professor, pulling on his leather gloves before rolling down the ramp. The guy moved. The current image, though, is appallingly passive.

So, woot! for Sara Hendren and her sticker campaign. Want to help her? You can get stickers here, while they last. Just include your mailing address, and she'll send 5 to you, free! For the Imperfects, she's offering us the perfect follow-up to a conversation that the Eldest was roped into, oh, last winter.

MOOOOOM, we're late! Why are you driving past those spots - we're ALways LATE and you never get a spot and those are empty and WHY? Things degenerated a little at that point, and there was a certain amount of shrieking. I'm not too proud to admit that some of the shrieking was mine. But, mid-screech, I did note the opening I'd been given.

Later that night, I slid into the Eldest's room. What does 'handicapped' mean?

The kid glared. He did a lot of glaring that winter, so it just washed over me. I smiled, angelically, having discovered that this defused the glare - or possibly distilled it to a cranky but functional eye-roll.
It means you can't park there. He paused, mid-roll, and added, and that people can't walk.

If I told you that I leaned back, casually, at this point, you should assume that I was not grinning. But I might've looked like a happy geeking mama, who has spotted the metaphorical podium.

Insert the usual spiel about cap-in-hand, disabled people begging, etc. It's dead wrong, as I later discovered, but hey, made a great entry point into the discussion. The kid looked thoughtful. Frowned.

Okay, so what's a better way to say 'handicapped?'

The Eldest played along, only rolling his eyes the barest minimum of times needed to indicate his extreme level of patience.

can't walk

got hurt

born that way

can't catch it

has a challenge

can't do some things?

can't do some things easily

has medical stuff

disabled

We stared at the last word. Disabled, I said, grimly, and remembered the last time I'd used that word, and the stiff, defensive faces of the people who didn't - quite - hear it. Yeah, said the Eldest. So what? Well, you and I and the IEP know that the Eldest should know exactly what. But lucky kid, he doesn't. So, I diagrammed it for him.

DIS = CAN'T
ABLE = DO THINGS, INDEPENDENT
CAN'T + DO = HANDICAPPED

Remember "medical?"
The Eldest blinked. Yeah.
Dude, some people think that's YOU.
The Eldest bristled. What? That's absurd! I just have to take care of things, and be prepared - and yeah, i can't head the ball in soccer, but I can play - and you know, I make a great goalie and - the kid's eyerolling vanished in a flare of indignation, and bam! game on, mama.

Hey, I'm not arguing. I waved my hands as evidence of good will, good-guy status, and general on-your-sideness. That list has an awful lot of 'no,' or 'can't' hiding in it. So, what is a better way of saying this?

Right. The kid squared his shoulders, and went so far as to lean forward.

Details
has to be prepared
limits (but I can still play! the Eldest protested. Hm, I said. True.)
complicated
might take longer
go a different way
different
uses tools (doesn't everybody? the Eldest asked, and I grinned)
has fine print on the contract

Are we done? we thought it over. Almost:

quirky

The Eldest nodded. That one is right. It has less - can't - in it. It has fun.
I gave up, and grinned. Kid, it has YOU in it.

the cross-examination

2011-02-18T00:21:00.000-05:00

Describe your child, his/her personality, strengths, challenges, hobbies, traits and characteristics.

[what? did the kid need a resume, too?]

Dear people with the power to admit my child to your wonderful school: he is perfect.

[strangled yeeping sounds. scrabble. ahem.]

Dear admissions demigods, please wait while we select just the right spin for your answer. Your application is valued by us, and we appreciate your patience. A properly honed and polished response will be with you shortly. Thank you.

[wild hooting and chortles.]

My child - [no, wait, that sounds like only one of the two of us is invested in this school. FIND ALL: my REPLACE ALL: our.]

Our child is a bundle of joy and curiosity. He can solve complex mathematical challenges, unlock elaborately sealed containers or cabinets, julienne zucchini with the knife he's not supposed to be able to reach - [er. Not helping?]

Our child is curious, creative and innovative in his pursuit of a goal. [oh, good grief.]

He can do anything, as long as he's tall enough to reach the buttons. He can remember everything he's ever heard, except the inconvenient bits, like "it's time to go." And he could probably save the world, so long as he gets the job wrapped up by nap time. [whew.]

Explain why you think that our school is right for your child.
[um.]

Because otherwise, we wouldn't write a check for the privilege of applying? [gah! No! check the snark at the door, people!]

He's currently undergoing extensive retrofitting in order to ensure compatibility. Child 3.1 will be available shortly, and coming (we hope) to a classroom near you!
[or not.]

inhale. exhale.

Oh, dear gah. The Toddles is going to kindergarten. But where? And how?

an app and a thump!

2011-02-15T21:45:00.001-05:00

Oh, dear galoshes, I want that app. Bump! goes the Imperfectmobile. Ow, wails a child, unless they go for the it spIIIIlllled variant, or the elegantly simple MOOOOOOOmmmm!

Oh, no. With this app, every time I hit a pothole, we Imperfects - and our hapless carpoolians - will cheer. Gotcha! we will shout, and now, minions: fix! This is going to beat the heck out of the virtual paint-ball cannon that we've installed on the roof of our car, for use on egregious drivers, or possibly just to amuse ourselves during traffic. (Note: the paint is always translucent, and beads up instantly on windshields, thereby avoiding a driving hazard. Mostly.)

Except, of course, if we do get the app, then I might feel obliged to use it on the two craters within a few blocks of our home - oh, and that gigantic crevasse a few minutes farther out - and - oh. Um. Bad for the rims, anyone?

Still, this has been the most absurd winter for having things dumped on our heads. (And yes, that is a photo of someone plowing their parking lot. ) Which makes me wonder: maybe the newer, resulting battle against the pits opening up under our feet is - um - providing a sort of balance?

Or not.

Hurrah for civic duty. Maybe next year, I'll start mine earlier in the winter. Before the cracks begin their mysterious tectonic migrations.

(hat tip to the Precise One for information about the app)

okay, we got scooped

2011-02-15T01:01:00.001-05:00

Well, sort of.

For those of you who read the New Yorker, there's an article in this week's magazine by the thoughtful and wise Jerome Groopman. "The Peanut Puzzle" is a calmly written alternative to the shrieking headlines offering fear, or skepticism. And wry apology.

In case anyone is wondering, the baked milk study mentioned in the article is yes, the one that the Eldest just finished. Oh - did I mention that he finished it? He did. Two tries at the 6 month version of the protocol, a possible false positive at a food challenge (turns out the ewwww, of a coated throat from full-fat dairy? not easily distinguished from an ewwww of the stomach urp, plus general ickies for a kid expecting anaphylaxis to start. Any time now. Now? Now? Maybe now?).

Then done. Then not done - hahahaha - because you have to avoid all dairy for a month, just in case the allergy comes back.

What happens if it comes back? asked the Eldest. A borough away, the mama nodded. The kid's skin tests were still positive, dammit. So, what happens?

then you'll be the first, said the allergist, and the Man says that she offered a wry smile. And you know what? For once, the kid was not unique. But he also couldn't believe it. Still, he was cool. He knew the score - go, test, schlep home, eat more stuff.

bah, said the Eldest. Done this before.

And oh, he was cool. He was sly, working his moment, enjoying Diego's fries (made in a special fry-pan! special oil! and how on earth does he make them so good? The nurse shrugged. The kid ate his sixty-first, and grinned.)

Ooo, said the Eldest. A foooooooood chALLenge. Oh, that's scary.

He tossed back a slug of chocolate milk, then another, another, and oh - a bunch more. Easy peasy lemon squeezy, he informed us. And mugged, to prove it.

That's it, said the same, wry, lovely allergist. You are done! Thank you for helping us learn about what we can do to help other children like you, with their allergies.

The kid swept a grand bow. The allergist cocked an eyebrow, appreciated the gesture, and left.

You're done, I told him. He paused.

No - really?

I nodded. He shrugged. I put a hand on his shoulder. No, really. Go ask her.

The Eldest caught up with Dr. Wry-and-Gracious by the elevators. I watched as he talked to her. She looked puzzled, but replied. He looked at her, searching her face. And then, turned and walked away.

He doesn't really believe that it's over, I explained. Watch. It's about to hit him.

Two-thirds of the way down the hall, the kid stopped. Tilted his head, then froze. Now, I told her. And we watched the kid gallop down the hall, laughing.

a pattern's tale

2011-02-07T06:00:00.025-05:00

So, I might have mentioned that I have this kid, and he's oh, himself. Except when he's in training to be the class clown, and then he's a caricature of That Kid. But mostly, he's himself. See?

Hm. Maybe if you got closer. Try this:

Better? Okay, then. Let's take it from the top: I have this kid. And he is...himself.

Hm. Still not right. How about if we back up narratively?

Every year, 'round about the winter holidays, I frog-march the boys over to the idea of their teachers. And saying 'thank-you.' Happily, the kids have needed little explanation as to why the first should go with the second, although the degree and quality of the thanks has needed some guidance. And, the 'say a really nice thank-you, because your teacher works her educator's tush off extra hard for you' is not a line that I can use. It may be true, but that's not a weight the kid can carry. Which, as I say to the teachers each year, is why I intend to smile very very quietly, when my kids complain to me about their children. And carefully not say anything at all.

But back to the photos. Right, so there's this kid. Or possibly, kids. And each year, they say thanks. In our house, we do it with our time and hands, and sometimes, with our oven. Last year, the boys made sparklies, and a dry mix for By the Bay's fabulous cholent. Another year, they made a still-talked about ooh, yum granola bar, which the Toddles delivered in what was an act of ruthless appreciation (on my part, perhaps, more than on his). This year? This year, we went for fuzzy.

After watching me curl up with a creation of soft yumminess by the Space Cadet, the boys began to show glimmers of interest in the bags that I (occasionally - only very occasionally! honest!) bring into the house. I let them choose the yarn for their next kipa, and then, I brought them to the yarn store. For the Toddles, it was heaven: he could touch anything (gently). He could take anything off the shelf (one at a time). And everyone in the store wanted to hear what he thought. (no, really. everyone.) The Eldest came to the store with more skepticism, and was seduced by the yarn - and oh, Mummy the colors! and why is this one softer than the other one? and why does the yarn change colors like that - how do they make it change - and why is this one twirled around itself? and then it's thicker here, and stringy like that - there?

Oh, said the Eldest. Yes, I would like to pick out a skein. For me? For a kipa? We spent over an hour at the yarn store, that day, and he finally chose a dark navy, generously flecked with orange, red, green and yellow. It made a lovely, stretchy kipa, with a curving trim of red sari silk yarn, and both of us were surprisingly accepting when his father accidentally felted it in the dryer. After all, we knew where it came from.

So, the fuzzies. And so, the boys. I'll do a row if you do a row, I promised them, and the Toddles leaped right in. He chose a ball of yarn, and happily finger-stitched a row of chain stitches. Chose a second ball, did five finger-stitches, wandered off, and refused to be lured back. Ever.

The Eldest watched this burst of enthusiasm with a degree of fairly accurate skepticism. I dangled the offer. Any yarn you like, love. And watched him think it over. Remember. Crumble. And grin.

He started with a chain stitch, done with his fingers. It was loose, then too tight, and I hovered - then got smart, and shut up. You don't have to stitch in each spot unless you want to, a wise friend reminded me. And I didn't. Without my dangling over him, the kid looped, pulled, and let the yarn teach him how it worked. His stitches grew tighter - too tight - and he asked for a crochet hook. Then a smaller one. Then, a different stitch.

And so it went. His row, my row, his row, my row. We told stories of the teachers, as he looped yarn into their gift. She's really funny, but sometimes? sometimes she puts her head like this, and then you know that she's thinking about whether she's mad. He paused. I grinned. What do you do then? I asked. The kid wound some more yarn around his hand, and looked up. I keep going, he said. Which is probably how I get into trouble.

I nodded.

A skein for each teacher - and sometimes, a skein and a stripe. It took hours. And hours. A lot of it was rich with a quiet mellowness, and with stories. Some of it wasn't, like the day when I sent him - spitting mad - to his room. He went, still hissing, then came down the hall to mine. Curled up on the bed, and watched me crochet. May I? Just a few stitches? I passed the yarn over, and let the rhythms of his stitches sink into his bones. It makes quiet in my head, he told me. And smiled. Thanks, Mummy.

And then there were the days of the bitching and moaning. NOW??? But I'm in the middle of - but I'm about to - but I really want to - and, of course, I can't do twenty stitches! It takes FORE-EV-AH! And then, inevitably, there was this:

I'm done? Oh my gosh that was the last stitch - right, Mum? - thatwasitthatwasitthatwasitIDIDIT!

And he began to dance. The next day, I took photos, wrapped and wrote out washing instructions, while the kid made cards: thank you for being my teacher.

The tough-as-nails teacher looked up from her card - at me. Thanks, Mom! she said. I laughed. Oh, no, I said. I didn't do it. He did. And I pointed. She looked. Really? you did this? she asked, and the Eldest nodded, earnestly. You knitted me - this? He shook his head. No, he explained, I crocheted it. And he began to point, to show her stitches - and she began to understand. Really? another teacher said, carefully quiet. She pulled photos from her envelope, and saw the Eldest, wielding his hook - she looked up, over the edge of the photos, and saw the Eldest, explaining his stitches to his still-fearsome teacher. Oh, she said. And laughed. Oh, oh, oh.

The tough-as-nails teacher melted into a puddle, and the others laughed from sheer pleasure. My scarf is prettier than yours, you know, said one, later that day. And I can't prove it, but I'm positive that she grinned. The other one probably tossed her head. No way, she retorted. Mine is. And wore it again the next day, just to prove the point.

As for me? Well, you know how I love those visual metaphors. The first, raggedly steps, the rebellions, the learning and the carelessness. The enthusiasm of the too-tight stitches, and the fat reliable stitches of the learned skill. But hey, the learning curve in yarn is pretty damned nice - and fuzzy - but it was beaten all hollow by the things I didn't catch on film. Like his teachers' faces, when they saw in their gifts the hours of patient work. Like the kid's face, when he was hugged, melted upon and given the gift of giving something that was joyfully received.

wanted: Tufte, or possibly a skilled semaphore operator

2011-01-27T18:32:00.002-05:00

I plonked my hands on my hips, and glared. The Man, on the other end of the glare, was infuriatingly stolid.

Fine. I flung my hands up, and stomped for emphasis. Be like that. Although, for the record, "I turned out just fine" is what you said about formula, also. He winced slightly, remembering the MIL's lecture about his early babyhood and what, exactly, he'd been tippling at the time.

Actually, he said, there is something that we do agree upon. Reached over, grabbed a pen and a pad of sticky notes.

Many sticky notes later, we were still quibbling over the details, but we had this:

Assume a graph.

One axis is P = a child's potential. Keeping in mind that a good chunk of this is bunk, because potential shifts, depending on any number of things, including that nasty 'use it or lose it' thing. Add in circumstance, opportunities available, etc, and you may feel yourself perfectly free to sneer at the axis in question.

The other axis is A = the child's achievement. The kid's five. I'd settle for consistent bottom-wiping on that axis, said one of us, maintaining deniability. Er, yes, said the other. Good point. So, unless you think that achievement is something that can be pinned to a clear and appropriate standard, feel free to wave off that axis, too. Or, if you are Malcolm Gladwell, fling up your hands and consider stalking out of the room.

But, for the sake of argument, let's consider this: assuming that not all gifted kids are created equal. And that some of those kids will soar, no matter what. For them, P = A, and we all want to know how their parents did it. Or, possibly, how it was done despite, even irrespective to their parents. (I'm not just using Malcolm as a prop here, he really does have some fascinating thoughts on the subject.) See their happy, rising bubble? That's them.

Let's say that some kids aren't gifted. Blithely ignoring the question of the specifics of their education, the problems with how we identify giftedness, or any of the other things that make me inSANE where the concept of giftedness is concerned. Right. For these kids, ignoring a host of issues and a recent, smack-you-in-the-face documentary, let's have their P = A, although without the happy rising bit. See the square where the two axes meet? That's them. We've circled them for emphasis, and possibly in rebellion against the over-simplistic divide between the two groups.

At this point, I'm worked up into a seriously pissy maternal bundle, but our sticky's not done. Going back to the idea that not all gifted kids are equal - nor are they homogeneous - and for the sake of making a semi-clear point, ignoring the fact that we didn't extend this reasonable consideration to the non-gifted kids. The sticky be small, people. For this third group, the P is way ahead of their A, which means that in the classroom, these kids are likely to be one heck of a PIA. Or quietly miserable.

I wonder if those are the kids who drop out, one of us said, morose in the aftermath of an overdose on nastily personal statistics.

That's what I'm worried about. That he'll be in that group. At which point, his P slides back to smack him in the A.

The Man folded his arms and considered. Okay, he said. I understand that.

We contemplated the sticky note, letting silence replace the discussion about why, how, and what the hell are we supposed to do now. So, if I show people the sticky, will that avoid all of these awful -

No. But at least you'll be able to explain what you are worried about.

So, there you go.

I want my script back

2011-01-18T15:33:00.001-05:00

Okay, so this is how it is supposed to go:
[scene]
Congratulations, your child is gifted. You can stop worrying about how much you suck at saving for college, he's going to go anywhere he wants, on a full scholarship, partly because he's spent his summers doing some really astonishing and groundbreaking biochemical research or maybe something involving quantum physics, which you don't understand because you are just his mom - but that's okay.

Oh, he's also going to be wonderfully happy, because he's going to have a rich intellectual life, energized by the pleasures of research and discovery. And yes, there will be grandchildren.
[end scene]

Except, this is how it really does go:
[scene 1]
Gifted? What about his brother? Are you saying that the Eldest isn't gifted?
[incoherent, defensive end to scene]

[scene 2]
Gifted? who isn't?
[silence, end of scene]

[scene 3]
Gifted? I see. So what kind of learning environment are you looking for?
um. I don't know. In your experience, what works?
Depends on the child.
[insert garbled explanation from the parent, shuffling of paperwork by expert hands, lapsing into silence by parent]
Well, there's a gifted school that we usually refer children like this to.
[flabbergasted end to scene. repeat with each school visited.]

[scene 4]
Gifted? Are you saying that you want the school to take resources away from struggling kids for a gifted program?
um, no. Kids should get the help they need.
Differentiated instruction already has the teachers working with different kids, at different levels. I think you are making a fuss over nothing. And is it really necessary? Lots of gifted kids turn out just fine.
[abashed end to scene]

[scene 5]
Gifted? Really. And you are asking schools to do what?
Well, see, the expert said -
My kid is gifted, and I'm not asking the school to do that. What makes your child so special?
[abrupt silence. merciful end to scene]

And here is the short guide to the gifted conversation. Insert silent, notetaking mama with appropriate facial expressions as needed.

[scene]
Well, so your child is gifted. Do you know what that means? No? We-ell, school is going to be a bit of a challenge. There's only one gifted school in your area, and it's oh, an hour away. You'll take him there, right? No? Well, then, most of his real learning will probably happen outside of school for a while. Most schools don't have gifted programs until the 6th grade, and right now, most of those are on the budgetary chopping block. So, even if he's willing to sit politely and be quietly bored - because, you know, boys are good at that - then he's likely still SOL, which means that you are going to have to keep a careful eye on behavior issues that arise. Setting aside, of course, that a good early education experience is pretty important, let's just assume that he's going to be fine, no matter what.** Work habits aren't really important, because, you know, he's so smart - and he's going to be really popular because he'll know the answers to all the questions. Oh yes, all. Because he's gifted, so by definition, he's going to be gifted at everything.

Except sports. There's a rule about that somewhere.

And that 18-25% drop out rate for these kids? Don't worry about it. You can afford to pay for extracurriculars, right? Good. Resources for parents are online, and you should know that it's a really bad idea to talk about this to anyone in person, and most parents-of-gifteds will refuse to admit to anything of the sort if you ask them, in person. Talk about it with others, and you will be seen as elitist, bragging, a pain in the academic arse, and so on. Also, you'll have a sudden urge to sew suede patches onto perfectly whole sleeves, and start smudging your home with certain aromatic pipe tobaccos. Either that, or you will begin to explore marketing options for your child's artwork or other salable skills - he what? no, the arrangement of Star Wars scenes does *not* count.

Harrumph.
[end scene in a whiff of disapproving silence]

or, if you prefer the condensed version:

[scene]
Your kid is gifted. He - and you - are screwed.
[end scene]

Offended yet? I am.
Coming next: a conversation with graphs

**"The observations reported by Barbarin and Crawford (2006) are entirely consistent with numerous research studies that have shown the quality of the teacher-child relationship to be a major contributor to school success in the early childhood years (Birch & Ladd, 1998; Hamre & Pianta, 2001; Howes et al., 2008). Howes and colleagues (2008) found that the best predictor of gains in academic outcomes for preschoolers was high quality instruction and close teacher-child relationships. Hamre and Pianta (2001) found that children's relationships with their kindergarten teachers predicted academic and behavioral outcomes through eighth grade. Combining scores on conflict and dependency scales into a variable they called relational negativity, they found that, "Particularly for boys, kindergarten teachers' perceptions of conflict and overdependency were significantly correlated with academic outcomes throughout elementary and middle school" (p. 634). " more can be found here.

choosing an opinion

2011-01-17T00:39:00.004-05:00

Some days, I think that everybody is testing their kid for this or that. Other days, I think that this must be impossible - if it takes 24 months to get an appointment for developmental testing at the local children's hospital, then how? where? are these tests being done?

I'm not sure if we can get to you before next fall, said the nice lady from the public schools. We've got quite a wait list.
It's going to take a while to set up the appointments, said the friendly person from the pediatrician's chosen psych department. Do you need to see a psychiatrist, or a social worker? A developmental pediatrician?

I had no idea. Who should we see? Who could look at the Toddles, and see through the carapace, and past any filters created by our fears? We were, after all, filling out the questionnaires - and I knew well how easy it is to talk our way into a diagnosis. At chez Imperfect, if we're not being pushed off-base by some parenting worry, some medical concern or other, would we know what to do with ourselves? Hemophilia, allergies, immunology, dermatology, rheumatology, neurology - by now, I think we're beyond worried, we've paddled around in skepticism, and now? Now, I fear, we might be in a rut. Diagnose our kid with something new? Sighhhh. Lacking the expertise to argue against it, all too vulnerable to our own worries, all we could do is stack the deck in the favor of clear-sightedness.

Test him? Fine. But not once - twice. That spring and summer, we talked to two thoughtful, careful women, one recommended by the Eldest's heme team, another by our pediatrician. Realizing their doubled role, the two talked to each other.

And they tested the kid.

It was three days of stomach twisting. The Toddles refused to enter any offices, so the testing happened in waiting rooms, on the floor. And I sat behind the child, silent and oh, scared shitless. Filling my hands with yarn, because, hey, it was something to do.

And stared.

I've only seen this once before, the developmental neuropsych told me, but he's beyond even that. I watched the Toddles, and found nothing to say. I don't think there's a school in the area that can handle him, the neuropsych said, gently. I'll give you the name of an educational specialist, and maybe she can help.

Behind us, the Toddles was playing with three, four digit numbers. Flying airplanes. Whisking through school competency tests for 14 year olds. Giggling. Was this hiding in the carapace? Did it have a name?

Gifted, the neuropsych told me. Do IQ numbers mean anything to you? [name of tests] scores?
I shook my head. Breathed a bit. Not autistic? Not - I rattled off the litany of our fears.
No. But, she said, you might think - and began explaining how this or that behavior looked like this or that psychiatric/developmental condition, but - but I was gone.

Not autistic. Nor normal. Going to be okay? The two developmental medical folks thought so, but offered qualifications. Footnotes. Gentle explanations of what their expertise did and did not cover. But didn't my expertise cover the kid? And what about -

I whipped out my phone.

Um, yeah. the teacher replied. We knew that.
Oh, I said. I didn't.

The kid curled into me. Let's go home, he breathed, and sank into his carapace. I carried him to the car, red curls tickling my chin, his legs wrapped around my hips. Can it be quiet now? he asked, and lost in my own thoughts, I agreed.

What lens do I need, to see him clearly? What lens had I wearing?

testing an outcome, finding the kid

2011-01-16T00:39:00.002-05:00

Fine, then. We'll test him.
firm, parental nods all 'round. Then, a pause.
What kind of testing are we supposed to do?
Um. I dunno. Maybe the pediatrician knows? The school?

And then, there I was. Holding a list of bullet points that the Toddle's teacher had given me, the pediatrician on speed dial, and the local public school's phone number written carefully, clearly in my calendar. And I couldn't dial the bloody phone.

Three days later, I still couldn't dial the bloody phone.

It had been one hell of a year - and more - since the Toddles' preschool disaster. With QG to keep us sane, he'd been happy at home, loving his playdates, and generally growing into a snuggly, independent little terror. He missed his classmates, sure, but found joys aplenty in the world we were creating with him. And, after visiting preschool after preschool, I had finally found two that felt they were up to the Toddles' challenge: an anaphylactic wheat allergy, plus rye, barley, spelt, egg and more! Enough to warrant a raid on the art supplies, enough to require some very, very careful thought about snack time, school events, and oh yes, coexistence with a parent who thinks she's an advocate. All things that the Toddles' first preschool didn't seem to want.

One offered us a spot on their waiting list. The other asked me to drop by and talk. And then there I was, talking, and the boss lady telling the preschool director, oh, yes. You can do this. And then there I was again, talking, and the teachers were nodding. Sure, we can do that. One of them, delighted, clapping, Oh! I'm going to get to have the giggle boy in my class! And she did.

Thank you for bringing our boy, they said. And hugged me.

I spent months staring, wandering around and trying to grasp this. The school provides all snacks for the children, and with the arrival of the Toddles and a few other allergic kidlets, decided to avoid all of the relevant allergens. They checked their art supplies. They were polite about my first efforts at lighter, sweeter faux-challah, and offered generous quantities of honey to the dubious children. When I set the fire alarm off while baking for the Toddles' birthday celebration, they told me their own embarrassing mom-stories, and took photos of the kids with the fire truck. And wrote it up in the newsletter, as part of the birthday fun. And hung a big sign on the doors: WARNING! ALLERGIC CHILDREN. DO NOT BRING FOOD INTO THIS AREA. Atmosphere wasn't a problem here: one of the teachers made the sign with collage. Lovely, creative, and very, very clear.

It was unreal, wonderful, humbling. There was so much oxygen, I was gasping. But the Toddles saw none of this. When am I leaving preschool? he asked, but didn't believe the answer. He pulled in, curling tight and then tighter inside himself, avoiding eye contact, sound, touch, as if he could create a perfect, protective carapace. Huddle inside. His balancing touch-and-suck had become a place to vanish, and its gravitational pull was immense. Time to get dressed? He'd have to pull himself out of the carapace twice: once to take his jammies off, and once to put the day's clothes on. Going somewhere? He'd need to pull himself out to get his jacket one, again to get into the car, and yet again, agonizingly, to get out of the car.

It's like you are inside of a box, and can't hear me, I told him. He nodded. This did not trouble him - the carapace was good. I need that, sometimes, he explained. I nodded. But sometimes, love, you get stuck in there. He thought this over.

I think we need some balance in this one.

But balance had been trumped by a need. Snuggled into his carapace, the Toddles didn't mind that he was alone, riding 'round and 'round on the playground. He was untroubled, if a bit wistful, by his lack of friends. Friends vanish, he knew. This was safer. And, in his safety, he pulled in the tendrils of connection, avoiding eye contact, hiding from hands, hugs, hesitating once, twice, fifteen times before trusting the adults around him. He was safe.

Except, of course, he wasn't. Humming quietly, wrapped in his carapace, he couldn't hear me tell him not to run into the street - with a car coming. I heard your sounds, but not the words, he said. Or just stared, bemused and puzzled by my gasping horror. He grabbed at knife blades, broken glass, rolled on challah-crumbed floors, and from deep in the carapace, he stared, bewildered, when I gritted my teeth and explained. Why. That. Was. Not. Good.

But this was a parenting problem, and not a developmental one. I was sure. I had experience with this dance between parenting, the kid and the yardstick of the normal. I knew. I was also a mess. And holding a phone.

Maybe it's wiring. Neurology.
Maybe it isn't.
Maybe, I admitted to the other parental pair of worried eyes, maybe it's me.

We watched the Toddles lining up number flashcards in some mysterious order. And again. And again.

Maybe it's not.

And I made the call.

ahem

2011-01-02T03:39:00.000-05:00

[standing at the sink, toothbrush in hand]

Eldest: ...and then, there was the time that I almost broke my ankle.
Mama: [mid-scrub, the Toddles trying to wiggle away from the shampooing hands] mm, hm. [blinks] wha- ankle?
Eldest: [nods] yes. I was climbing on the car - not our car, J's car.
[in the tub, the Toddles sits still, listening. A slow grin creeps onto his face.]
Mama: you - you were? [clears throat] That's really not a good idea. You can damage the car that way.
Eldest: Yes, I know. And I caught my ankle in an open window.... [tilts head, looks thoughtful] This was back in first grade, you know. And kids that young don't always make the best decisions.

[pause]

Eldest: Why are you laughing? What's so funny?

a tangle of threads (and clearing a clog)

2011-01-01T23:35:00.001-05:00

I think 2011 slipped in when I blinked - or possibly while I was lighting shabbat candles. Nonetheless, hiya! Time to flip that page in the calendar, eh?

I'm not calendrically aligned enough to have new year's resolutions, nor do I really have the will to rehash that goes with a year-in-review post. Still, I do have the collected points of determination, or fed-upness that compose my Change This, Dammit list. That list sort of blurs into my Things I Want To Do Daily list. Which combined, look something like this:

do less
sleep more
prioritizing is great, but first? learn how to estimate how LONG it will take me to do things. Remember that in so many things, I work slowly.
play with my sons. More.
learn to love Lego. (see above)
eat chocolate every day. (can I use chocolate as a bribe for getting up in the morning?)
make food that I want to eat
budget!!!!
remember that a tired child is tired. And can't do better, even if he tries. Remember that the same is true of me.
have dedicated home maintenance and writing days in each week - and be stubborn about them.
have dedicated time with my friends - and be stubborn about that, too.
get hugged. A lot.
start washing dishes with The Man. Talk about inconsequentialities. (is baseball an inconsequentiality?) Hell, talk about anything. Have I mentioned that the guy is wonderful and funny and generally fabulous?
go on dates (note: find a babysitter?)
learn how to listen to podcasts.
every single day:

make something
write something
fix something

be loving and loved.

I've been working on my make/write/fix challenge for a little while now, and I'm loving it. But I have to admit that I've been making and fixing far, far more than I've been writing. To my chagrin, I seem to lack a crucial degree of recklessness, or possibly a degree of ruthlessness needed to write some stories down. Or, to put those particular posts up on the blog. And, that not doing the writing and putting up can clog up the rest of the works, so that I can't push past the things I'm not-saying, or not-writing, and silence ensues.

I am not good at silence.

So, I'm going to inaugurate 2011 with the first of the clogged posts. I suspect that the blog's current quiet state will serve me well here - this is going to lead to a subject that seems, oddly, to piss people off. Which makes the following all the more appropriate.
******************************************
March, 2010

Peace, this month, is two hours of sitting on a nicely lichened rock by a lake, a glow of sunshine, and a suspicious mother duck herding her wee bits of fluff away from the two chatting persons.

I did go home and need to scrub bits of me, having noted all of that lovely, flourishing poison ivy - and later, admired the odd, itchy pattern on one leg. But all is well now, and the 80's style shocking pink arms (and nose) have faded to a merely retro hot pink shade. And, well, I may or may not have spent the past 40 minutes looking up bug bites, thanks to a casual hey, did you get bit? from the Man, glancing at the back of my neck. Solid, big swelling. Hot. Ow. (note to self: not brown recluse spider. Also not tick. Whew.)

With the Toddles leashed to the toilet by some really appalling GI virus, I've got a whole lot of indoors ahead of me. So I'm storing up that sunshine, the warmth of the rock and the patterns of the lichen. And the wry grin in her voice, as she narrated the odd rock and shoal of her days. Followed by a quiet thoughtfulness as I told her: the preschool wants us to get the Toddles evaluated. We had a meeting yesterday, and I've started making calls.

I tell this story badly, choosing details that can only prove how wrong we all are (your child sits on the toilet for 45 minutes? mine has sat there for an hour - and he's just fine) and how flawed our idea of 'normal,' or 'age appropriate' must be. We must need reassurance that the Toddles is fine. Or perhaps we need perspective on his age - or refocusing on his strengths, and the things that make our boy that wonderful twirl of light and joy. Or maybe we just need a nice barbituate and a glass of wine, hm?

I never thought that he was autistic, our pediatrician said. I nodded - but knew from her response that I'd told the story badly, said the wrong things, my chosen details pointing in the wrong direction. Oh, I don't think he is, either, I said.

Kids are just like that, said a lovely person. They grow out of these things. I shrugged, resisting the urge to degenerate into a defensive whine.

Oh - but my son/daughter/goldfish is just like that, said another, worriedly. I watched that parent reassessing their child/parakeet/magazine rack, looking for the cracks that suddenly might be there - particularly now that she's heard me worry that 'normal' has sidled away, excluding the Toddles. The gulping lump of sadness in my throat is sidelined, and you know what? I'm slightly irked by being upstaged. I'm going to focus on that, rather than on the familiar, edged fear and sadness that come from watching your child for fragile, ruthless flaws.

I can't tell the story well, and I'm not going to try to do it here. It's all tangled up, each thread complexly looped and knotted somewhere on that complex spectrum** of kid. I can't imagine picking the right threads, can't figure out where I'd need to start, but I also can't stop trying. And being told not to worry, to read a book, to get perspective, to get a life, a hobby, some sleep, or to learn how to parent without slapping diagnoses on everything. Or heck, just learn how to parent. Wouldn't he be easier to manage, if I were only better at my job? Which may be fair, and I hope that you'll excuse me if I start throwing things. While shrieking.

Don't you think that I've already asked those questions? Don't you think that those questions have weighed in my reasoning, etching their bitter shapes on my answers? The translation to 'but he's so normal' might just be, 'don't diagnose him for your convenience,' or 'don't label him for your failures.' I know that. It might even be true.

Mine is the sweet kid, who loves to be carried - but doesn't want to hug you. Not yet. Maybe not ever. He's a crackling bundle of energy, but doesn't want to leave the house - even to go to the park. He's the friendly kid, who helps you find a chair at circle time, but he doesn't know how to say hello, and definitely doesn't know how to join a game. Or what to do, if invited, but if you could read the script that he's worked out for this interaction, then maybe it'll all be okay.

He's the caring kid, who asks me if I need a hug on the tough days, but is shocked by your tears when he kicks over your sandcastle, draws slashing lines across your carefully lettered homework. He's still waiting for me to explain why it's not okay to bite, or scratch when angry, or that a pinch isn't just a different kind of handhold.

True, he's the silent kid at music time, but he knows all of the words to the songs, and sings them to himself when we're alone in the car. The bloodmobile is a silly idea, he says, criticizing the lyrics. It's confusing! You have blood and it moves through you, but it's not a bloodmobile. But his favorite books are the simpler board and picture books, more rhythm than language, more picture than narrative. And many days, he asks me to shut the music off, because it's too much sound. Unless, of course, you let him listen to the same song over and over and over.

He's the kid who makes the same, simple, two-dimensional shapes with Lego - until he's built one, and then he adorns it elaborately. He's a lover of complex kinetic puzzles like this one, plotting complex, counter-intuitive routes to his goal - and also can't figure out which article of clothing to put on first in the morning. Or what to put on his toothbrush first, the paste or water. But he'll light up with pleasure if you show him.

He's the oh-so verbal kid, eloquent and fascinating, but his words can spill out, shocking him. I'll hiss at an insult, then realize that he's near tears. I said the wrong words, he wails, and his distress is so sudden and raw that I pull him into my lap. Slowly, he tells me what he meant to say, or what tangled around his words, and I thank my lucky stars for my insightful, communicative son. But that flow of thought and language vanishes three, four times daily, when he shuts down so absolutely that he cannot speak. Doesn't know that you've spoken, even if you stand in front of him.

You can try talking to him, maybe say his name, or even put a hand on his shoulder, but his eyes are wide and distant, and they don't really see you. He's somewhere else, his mouth sucking and his skin focussed on the specific touch of a specific, worn fabric, brushed just so over his cheek.

When the Eldest does that, feeling for the rub of my skin over bone, he's balancing himself. But he's there. I can crack a joke, catch his eye, lift a wry eyebrow, and he'll respond. The Toddles goes deeper, maybe, to balance himself. My boys are points on a spectrum, but I couldn't tell you where the center lies. Not sure it matters.

I'm not afraid of your child, someone told me, gently. He looked me in the eye. But my tongue tangled, remembering the OT, the Eldest's rebellion, and my belief in that damned bucket. And the Toddles' face, earnest, bewildered, intent, gleeful, or lost in a need for balance.

I am, I wanted to say, but it wasn't true - was too melodramatic to be true. Besides, fear is just one thread in this story, and couldn't possibly be the right one to choose.

** often, when people talk about a "spectrum" in relation to children, they are, of course, talking about the autism spectrum. I think people should talk more about autism, but I wince at the casual use of "on the spectrum" for autism-specific descriptions. Autism has a spectrum, hemophilia has a spectrum, metabolisms have a spectrum, temperaments....etc. So, when I say, "spectrum of kid," I mean exactly that.

and the weather outside is - well, you know.

2010-12-27T17:38:00.001-05:00

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 sheet...it 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.

frost and a photographer

2010-12-19T21:24:00.002-05:00

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.

okay, someone explain this to me?

2010-12-16T22:41:00.001-05:00

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.

a few loops of yarn - and new FA guidelines!

2010-12-15T23:27:00.000-05:00

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...

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

2010-12-14T00:27:00.001-05:00

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
----------------------

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?
-b
------------------------
just one more thing? Come on, you know you can.
-b
-----------------------
NO.
-----------------------
[points]
-----------------------
[looks]

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.
-b
-----------------------
[points]
-----------------------
[looks]

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.
-b
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.

[sniff]

Oh, yes.

[sniff]

Hm.

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

[sniff]

yes.

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?
-body
-------------------------------
body,
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.
-brain
----------------------------
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.
-brain

a marathon in an alcove

2010-12-13T21:03:00.000-05:00

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

2010-12-12T16:35:00.000-05:00

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

2010-11-28T13:25:00.005-05:00

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.

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

2010-08-06T14:00:00.003-04:00

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.

Yes.

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.

elimination and observation

2010-08-04T19:47:00.000-04:00

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)

2010-08-04T00:34:00.004-04:00

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.

intermission (a Wish - part 3)

2010-08-03T17:29:00.001-04:00

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.

Arrival (a Wish - part 2)

2010-08-02T06:14:00.003-04:00

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
rim.

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

2010-08-01T06:24:00.009-04:00

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.

note to the abandoned (a Wish and a sidestep)

2010-07-25T20:43:00.006-04:00

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.

note to the abandoned (part three): coalescing Wishes

2010-07-21T00:59:00.008-04:00

If I were you, reading this, I would now want to know two things: what did the kid Wish for, and why? And if you let me push the bounds of reader response theory that far, then I know some people who want to talk to you, but as for me? I'll just say, good questions, and thank you so much for politely playing along.

What did he Wish for? Well, for one thing, it wasn't Disney.

Disney is, I am told, the Wish most wished, although I do rather think that Erik Martin may inspire a new standard of Wish - and should. Still, Disney (ahem) somehow (insert innocently wide eyes - um, wider - okay, could we stop giggling? Flings up hands, stomps off) eluded the Eldest, who pursued a Wish that began years ago.

I'd like to go and swim at the Great Barrier Reef, he told us, and the adults stopped being polite to each other, and whipped heads around. Listened to the five-year old kid talking about reefs and fish and fragile ecosystems. It's beautiful. I want to go there before it's gone.

There was a long, painful pause. It's too far away, a volunteer told me, and couldn't quite meet the kid's eyes. We can't send you that far. We talked quietly a bit, and I realized that they really couldn't, even if the Man and I managed to get ourselves out to the Reef itself. Sighed. Turned back to the kid.

Do you have another Wish?

He floundered a bit, suggesting a bike? With two wheels?
Love, I'll find a nice used one for you, just down the block - is there something really special that you might like to see, or, do - something that Daddy and I might not be able to do for you? another Wish?
It turns out that it's hard to come up with a Wish. A wish? Sure, no problem - wish for Pokemon cards, a book, a break from your annoying little brother. But a Wish is bigger, and supposed to be out of reach, hovering on the edge of impossible. Thus Erik Martin, who surely knows that sometimes human effort and the delight of play is a thing to be loved, when reality just does not have what you truly want. He did not, after all, ask to have a cure for cancer - these kids are sufficiently wise. Even when a magic wand is on offer.

The Eldest thought. Can I have an apple?

The volunteers considered this. It's unusual to have a request for a computer for a child this age, they said, slowly.

Now? Because I'm hungry. And while the adults looked confused, then bemused, he fetched. Bit. And chewed.

I swear, that was not me giggling behind the ottoman.

Over the next few years, something began to coalesce, then evolve - and occasionally, subduct. My sons became enamored of rocks, partly as solid and splendidly dirty objects to shove into one's pockets, and partly as bearers of potential treasure. Diamonds, see? Look! And I think that's silver. Oh - and that one over there, do you see it? Look!

Rocks clunk around in my washing machine, line up on the windowsills and are given to me as small, medium and alarmingly large, inarguably precious gifts. It was inevitable, then, that the Man would jump into minerology and geology, inescapable that our Father's Day gift would be a book of elements. Complete with excellent photos of rocks.

I want to climb a mountain, he told us. The adults considered the six-year-old. Which mountain? they asked, and he shrugged.

The mountain is in Hawaii, he told me. I blinked at the seven-year-old. It is? Mountain? Oh, I said, remembering. That mountain. But the Foundation blinked harder. But why must the mountain be in Hawaii? they asked, reasonably. And I didn't know.

I want to climb a volcano and find some igneous rocks, the Eldest told us, gently touching a precious stone or two. And find some endangered species. Listening, memory struck me, and I nodded. Hawaii has some of those, I told him. The most in the world.

The Eldest threw his shoulders back, and lifted his chin. Then we must go there, and save some, he told me. I applauded, and wished the magic wand wielders the very, very best of luck.

Because this kid is unlikely to accept costumes.

a note to the abandoned (part 1)

2010-07-20T23:48:00.005-04:00

shhhhh. Keep it down - nobody knows I'm here. They all think I'm off advocating for something, somewhere.

Dear blog,

did you miss me? I've missed you. There's so much that I've wanted to tell you about the past year, and it slid right by. I read something months ago about how the primary cause of blog abandonment was lack of time, and I smirked. Swore that an added hour of driving in my day was going to do no such thing. Nope.

It did, rather, didn't it? My poor blog, home to fragments of posts, whose missing bits are doing their best to tunnel their way out. If they switched to pickaxes, or a nice adze and dropped the electrons, I think they'd have more luck - and you, more posts. But I know that you won't mind a months-long blitz post on one, slim subject. Anthropomorphism is nice that way.

(Because I said so, that's why. And don't you wave Pirandello at me, hey?)

Now, where was I before the coloratura started up?

Right. There.

At some point in the past year, the Eldest turned 8. I find this thought somewhat hard to grasp, but he really is eight, and often, lately, shows a startling, lovely maturity. But on the day that he turned eight, he celebrated by swinging on the towel bar one too many times.

Creeeeaaaaunch, went the towel bar and the drywall in a lovely, delicate harmony.

Oooooooowwwwaaaaaaaiiiiiih! wailed the Eldest, dumped ceremoniously on his birthday ass.

Ahem, said the mama, and underlined the point. With a moderately straight face.

One might have thought that the Eldest's verve would be dampened by this, or that his newly eight-year-old sense of competency might have been shaken. Fifteen minutes later, one might have found that theory put to the test.

Oooops, said the Toddles, cheerfully. And bent over the clogged toilet bowl, the better to admire its contents. The Eldest joined him, and they considered specifics. Mooooo-om? called the Eldest, and explained the situation. The mama blinked, groaned and wrapped her fingers around a mug. Dropped the spatula into it. Just wait a minute, she told him, and reached to turn off the flame under her pot. I'll be right there.

The Eldest ran upstairs as the mama muttered to herself about small boys who will insist on using two and three tissues per wipe. Don't worry, Mum -I've taken care of it! floated back down the stairs. She blinked, and lifted her face in sudden alarm. Oh - honey - no! Wait for me, I'm on my way....

There was a pause.

There was an ominous sploooooooosh. And another, followed by a shpwhooooooor-splat-whshhhhhrrrr of overflow.

There were small boy voices, panicking. And there was much cleaning of floors and children.

After such a beginning, one might think that the Eldest's newly eight-year-old sense of competency might have been shaken. Oh, but wait - I already said that. And it wasn't the first time, was it? Yes, well, take that as a harbinger of things to come.

Oh, blog, this was the year of the jokester, in which the Eldest edged, then barged, then attempted to annex the wrong side of the line between funny and hurtful comments. He simply didn't see the line, sometimes, or the line paled in comparison to his comrades' snickers, or the line, he argued, was in the wrong place. If I don't mean to hurt someone's feelings, then why are they choosing to be hurt by X? he'd argue, and I was fairly certain that reader response lit theory wasn't going to clarify the situation.

(But Mr. Fish, my son shouldn't be kicked out of the room - there really IS a text in this class. I know, because he told me so himself.)

Meetings with teachers, talking about his disruptive behavior. Puzzling together over the patterns of his behavior, trying to stitch together a plan. Or at least a shared wry affection for the wee beastie. Watching sudden explosions at home, losing patience - and then, at last, preemptively losing patience. And hating myself for it.

And then the asthma diagnosis, which cravenly, I hope will explain far more than it should, and extract my lovely boy from the frustrating/lovely/infuriating/marvellous/aaaaaaugh that he is. Which it won't, of course.

And, and, and. It's been a very full chunk of year thus far, but alas, neither the Eldest nor I appear to be excessively daunted. Although my sense of competency has a few new dings and scrapes, I'll admit, and the kids have possibly maybe perhaps learned a few new words, which might oh concieveably be related to the Man's introduction of a cuss jar. Um. Still, he is marching onwards, a by-turns thoughtful, loving child with earnest eyes, and an uproariously charging rhino. Who giggles. I know that you boys will learn that you are living in a world with other people, and that you need to be mindful of the ways that your actions can affect those others, I sighed recently. You have the capacity to learn this, and to grow into wonderful mensches. I just wish you'd do it a little faster. There was silence from the back seat that morning. Yep, said the Eldest, thoughtfully. It's like that.

I sat there, torn between laughter, appreciation, and flinging my hands up. But then again, I'd spent much of the past seven months that way. And the kid was right, as it happens. Eight, as I'm learning, comes with a startling ability to phrase thoughts just so, splintered by a sweet worry that silences him, in case he might speak awry.

This past week, I've been inclined to think that he might worry less about saying the wrong thing, as we scurry around, preparing to pack goodness knows what in our bags, so as to go off and do something, somewhere. Because years ago, someone decided to point a magic wand our way. And shortly before his eight birthday, the Eldest finally found the right words to invoke it. And lo, he has made a Wish.

temporarily backing off on Holland

2010-07-08T22:21:00.004-04:00

I have often been tempted to buy a t-shirt that says fuck Holland. I hate that essay, as much as I might love those who've sent it to me. Jill Cornfield's response leaves me thoughtful, but without feeling as though the cheerful, adaptive temperament of the newly Hollanded has been given a swift, vicious kick in the ass. Although I'll admit that Cathy Marciniak comes damned close.

Thus the t-shirt. I'd get a stack, hand them out to friends, and we'd horrify the playground public, preferably while our kids do deeply Wrong Parenting things like climbing trees, or playing Redcoats vs. Colonial Militia.

bang! bang!

(pause, filled by nearby gasping about violence in play/kids running with big sticks)

hold on - I have to reload. I don't have a repeating rifle, you know.

(considering pause)

Oh, dang. My finger slipped on the trigger. Guess we have to have a running battle now...good thing my mom brought the really BIG medical kit today. (smirk)

It occurs to me that if I were in Holland, I'd be on vacation. And then - wait for it - I could go home. At home, presumably I would understand the language, the culture, and I wouldn't need to have meetings in which I explained us to others, or others explained us to me. At home, we'd be the norm, and an unthinking norm at that. No, wait - we are the norm at home. And there is no Holland, for us to either visit or leave.

More to the point, I reserve the right to bitch - not that our situation is remotely dire, nor is it tragic. But hey, bitchiness is all about the right to bear emotional arms, in case a target presents itself. I'm subtly modeling this with our virtual paintball cannon, mounted on the top of our little car, which the children use to express our, um, displeasure at the idiot who slammed on her brakes in the middle of a three lane merge on Rt 95 today. Twice.

Sploosh! yelled the Toddles. I got her with bright yellow.

Hmmm, said the Eldest. I wonder if we could use a robotic device to fill her car with bubbles? Maybe by drilling a small hole into the roof of her car, after sploooshing her with bubble stuff - and oh - programming a robot to blow air into bubble liquid?

Sometimes, you just have to do it.

So, fuck Holland. I can see it now, in a nice thick cotton, non-blinding white with a slim, but discreetly rounded lower-case font. Dark green, I think, with an ironic, minimalist tulip somewhere.

But given the timing, I think I won't. Not until after the Spain-Netherlands match, anyway.

my imaginary cards can beat your imaginary cards

2010-06-29T23:56:00.003-04:00

Okay, so let's take the sibling rivalry thing for granted - and don't tell me if your kids don't have that going on, because I really just don't want to know.

(Note: saying my kids never fight is up there in the Things Most Likely to Get You Flattened on the Playground list. It trails oh, my baby slept through the night from day one! but not by much. Capisce?)

So, we have sibs. We have arguments. We have me, periodically debating the usefulness of work it out for yourselves (translation: Eldest, you have to work this out, because your little brother is too young to be reasonable at this moment/on this issue, and I'm not getting involved) and if you started it, then I think it was fair that he walloped you (translation: violence breeds violence, and you guys are clearly going to have to learn that the hard way) with a chaser of he might've hit you first, but that was not okay behavior. And the new twist, I don't care if you hit him in an uber-dramatic way that you use when you play pretend war. If he doesn't realize that you are playing/you hit him hard enough, then it's not a game.

Etcetera.

To some degree, the fighting is wonderfully predictable: every day, between 5-6 pm, the boys decide to play a card game. They end up arguing over the rules (have you considered going over the rules before you start?) or over the general unfairness of Milady Luck, the game, the other kid's ability to draw a higher card, Pluto's demotion, and so on. Bitter voices rise, and someone flings cards with dramatic flair, someone else huffs off with admirable style.

A couple of months ago, I began playing Go Fish with the Toddles. By that point, he was persuaded that No Good could come of anything involving a deck of cards, but we turned Go Fish into a game of elaborate suggestions regarding the potential piscine population of lakes from Oregon to the Carolinas. Not to mention the occasional muddy puddle. The giggles eventually netted the Eldest, who began to play. And voila! I congratulated myself, the boys were playing games of manners and ritualized, cheerful jokes. I had rescued cards.

This is, of course, the turning point in the story - just as I'm feeling rather glossy and satisfied as a parent. Ready? Bladders empty? Okay, then.

Yesterday, driving home from various activities, both boys in tow, I heard one ask another for a dodo.

Do you have any dodos?

Why yes, I do! I have seven.

Oh, good - there are eight dodos in a kodak.*

(pause)

Do you have any orange dump trucks?

Oh, no - I only have drawbridges.

Oh, but I fished my wish! Great. Mom? Mom? Do you have any orange dump trucks? We're playing imaginary Go Fish.

And then we were off and running. We fished for drawbridges, cassowaries, extraordinarily long words by absolutely fictitious people (like supercalifragilisticexpialidocious), molybdenum and something igneous, but I couldn't tell you exactly what. Oh, and any number of bodily functions.

I was managing a tricky merge when, HEY! Give me back my cards!

Oh. Sorry. Here you go.

The Eldest exploded. Those are NOT my cards. Give me back my cards, you dimwit! MOM - make him give me back my cards!

I blinked.

He has your cards?

YES, I was told, emphatically. And he says that he gave them back, but these are NOT MY CARDS. My cards are much BETTER.

I couldn't eyeball the kid, to see if there was a twitch in his expression - but it didn't sound as if there was. Sorry, said the Toddles, still trying to play along. Here, these ones are yours.

There was a brief thoughtful moment in the back, and then an irate thwack, followed by an equal thwock. And to my astonishment, the Eldest began to wail.

He - he - MOM! he peeked! At my CARDS!

At which point, I did the sensible, loving thing, and laughed my ass off.

* kodak = set

practicing mooches

2010-06-25T19:13:00.008-04:00

It's Friday afternoon, and I'm flinging food into pots. The boys, who earlier explained that they wereNOTtiredNOnottiredNOPE are asleep. And then asleep some more. Ultimately, the Eldest will sleep for roughly four hours, but the Toddles, our current nap champion, comes wandering down the stairs. Plops himself into a gigantic armchair and props his feet up on the ottoman.

He sits there, eyes nearly closed, a cloud of tousled red curls, pink cheeks and a few, faint freckles. I sit down on the ottoman. Hello, I say. He cracks an eyelid. Hello.

The eyelid drops back down as the kitchen begins offering up a fabulous caramelized onion smell. I kiss his cheek and head for the stovetop.

Hello, he murmurs, and I grin. Kiss him on the other cheek. He smiles, his eyes still closed, and it is then that the Kissing Monster pounces.

I'm so sorry, I said, but I've just got to mooch** you. He holds out an arm, so that I can kiss the inside of his elbow, and it's like we've dropped a pair of years, skipping back to the uber-cuddly days when he rode on my back, wrapped up like a toddler-taco.

But then he pauses, tilts his head and looks at me critically. Um. I say, what's up?

He's quiet, thinking about it. Then, I know that you haven't had much practice, Mum, but your mooches aren't very good.

(ouchouchouchouchouchouchfuckitouch)

I should note here that there's a lot of history to this moment, history that if I'm ever brave enough to hit 'publish' on a certain post, would become clear. But it might help to know that once, we were the house of Muchas Smoochas, the hunting grounds of the dread Kissing Monster. We still are, but less so - partly for age-appropriate reasons, and partly for oh, complicated ones. So take my word for it: ouch.

Okay, I say, maybe I need practice. Any advice?

Hm, says the Toddles, taking his role as advisor very seriously. Well, a good mooch is a kiss that has a tiny bit of love in it. He pauses, and thinks, while I try not to ask whether mine had love in it. And it has a sound.

I try again, this time with sound.

That could work, he tells me, thoughtfully.

***mooch = smooch = kiss

Did I say whooooosh?

2010-06-24T11:16:00.005-04:00

Right, then: whoosh.

So, two days ago the kid had a bronchospasm, an experience that I suspect he would neither recommend nor plan on repeating. Me, I'd just as soon not be a spectator for that again, neither - damned scary stuff. Can we all curl up in a ball and wait for the adrenaline to drop? Or did I say whoosh?

Yeah, might've done.

Last night, another tight chest, the kid pulling, shoving at the air. He didn't need Tuesday to leave him beautifully primed to panic, wanted to refuse to panic (I don't want to be afraid, he'd told me), and tried hard not to be. Muscle by muscle, relaxing when the inhaler worked. But he kept his arms spread that night, my son who likes to sleep curving, tucked into the nook of a body, a mass of pillows. Even while sleeping, something in him asked for that extra spread and arch of the chest, allowing a little extra air into squeezed bronchi.

It was quiet then in the house, with the kids' (congested) snores a low, gentle sound that wove itself into the quiet, comfortably co-existing. At odd moments, adrenaline would wash through me, and I'd force myself to walk slowly, like a relaxed, thoughtful person, rather than oh, me. Poke my head into the kids' room, lie down with the Eldest, feeling the rise and fall of his chest, the slack in his muscles - and relax myself.

Whoooosh, goes the air in his/my lungs, blowing the clouds of adrenaline away.

It's been an awful lot of medicine lately, between the peanut challenge, the asthma, yesterday's trip to the ER, and I don't have to tot up emotional accounts to know; fear, adrenaline, determination, grit, anxiety, trust, love, patience and adaptation all cost something.

It was a late night again last night. Took a while for me to burrow in to a timeless quiet moment, pause, and then haul myself out into the unchanged present. Downtime is a break, but not a transformative one. Can't fix, can go on, and can - no, will - indulge in the cook's version of buying some happy: today, the Eldest is food-challenging zucchini. More tension, more face-to-face with risk, more, more, more.

So I made dips. As if they'd cushion the food challenge, maybe by giving the kid choices, when he's hungry and ruled by protocol. Maybe by offering a grin when we open the box of dips, something extravagant that says love. And yes, admittedly, speaking to a moment when there is the energy/time/luxury to be able to make such extravagance - that wishfulness cost something, too. But possibly, possibly it was worthwhile.....

We settled in, eyeing the wee quarter of a slice. The kid was a touch skeptical, considering his empty belly and the portion. Dip? I suggested. He scoffed. Dip what? But we flipped open the box, admiring the guacamole, the basil-artichoke pesto, the ketchup and (tamari) soy sauce.

Yum, he told me, and chewed.

Behind him, a determined kiwi kicked a ball. Whooooooosh...

************

Please note: the kid had more success than the kiwis. While New Zealand bid a dignified farewell to the World Cup, to borrow a phrase, the kid kicked zucchini butt.

pain and anticlimactic aftermath

2010-06-22T20:36:00.006-04:00

The Toddles paused, throwing a sneaky grin over his shoulder. Maybe I'll use this bathroom. Or maybe this one? Oh, or maybe this one...
I declined to roll my eyes.
Or maybe this one? I think....hm....I think I'll use this one. Or maybe, hm, well.
Outside, the Eldest pounded on the door. Now! He roared. My jaw set, and I yanked the door open.

Some feet away, the kid was curving, half-folded around a fist pressed to his chest. It hurts, he spat. It hurts a lot. He dropped his hat, shoving the other balled hand into the planes of his torso. Sank to the ground, eerily quiet.

I consigned the Toddles and his toiletry to an impromptu exercise in causality, and dropped my bags in the doorway. The Eldest looked at me, perfectly white. Will power hauled air into his chest, stubbornness shoved it back out. It hurts, he murmured, his voice blurring - but the edge of anger was bright. Sharp.

Two puffs of albuterol under the fascinated gaze of the site manager, and the kid had only one fist to his chest, twisting his shirt, kneading the fabric and skin, muscle. He was sitting on the edge of his chair, unable yet to relax, but the haze of pain, fear maybe had faded, and now he could see me. He remembered to be angry, and, This is not good, he snarled. The medicine isn't working.

But twenty minutes later, he was less pale and the anger was fading to a nicely edged bitchiness. Can you walk to the car? I asked. He thought it over, and stood up. The lady-in-charge person tried to insert herself into the situation. Gosh, Mom, she said, do you have enough bags? I swung our various bags up onto my shoulder, her voice fading behind the Elddst, walking carefully, and the Toddles holding my hand. We walked, the Toddles bouncing, managing to drop his ball, scoop it up, wave his glove around, rinse and repeat. We drove off, the Toddles chattering, the Eldest quiet. Go straight 0.6 miles, the map suggested, then right, 2 miles, then - the Eldest blinked.

It still hurts, he said thoughtfully. I wish I didn't have to breathe.

I drove the car.

Oh, he said, surprised. Oh. Paused. Mum, I need a doctor.

I drove the car some more. In the back, the Eldest alternated between quiet and surprised, scared outbursts. I listened to him hauling in air, shoving out air, all of us waiting for the inhaler to take effect. Slowly, the kid's tone shifted towards a brittle cheerfulness.

You sound better, I suggested. I could feel his nod between my shoulder blades.

I refuse to be scared, he informed me. It's like what Dumbledore says, if you don't name it, you will fear it. I don't want to be afraid, so I'm doing this.
I am but a Muggle, I admitted, and could not possibly argue with the great Dumbledore.

Also, I was lost. Map?

Seven minutes later, the kid was bouncing, words pouring from his mouth, interrupting himself as he whisked us through triage. Comfortably wiggling on a chair, two chairs, my foot, he was humming to himself as he redesigned the Wong-Baker scale. This is what I mean when I say that I feel like a 3, he explained to the triage nurse. She nodded solemnly, rolling an amused eye in my direction. One more puff from that inhaler, I mused, and we'd be scraping him off the ceiling. She grinned, and followed the kid down the hall, offering suggestions as to where he might want to go.

A young doctor peeled the curtains open to our cubicle, and the kid pounced. Do you have a sense of humor? The doctor blinked. Um, sometimes I do, he admitted. The Eldest nodded, satisfied. Good. We will get along.

While the Eldest poured a stream of medical history, what he ate for dinner, his theories about the relationship between asthma and allergy, bounce wiggle and zing onto the poor man's head, I settled into a chair. It was going to be a long, dull night, I knew.

The kid, sizzling with albuterol, began to giggle. Hm. Long, maybe - but dull? Maybe not.

clinging invaders

2010-06-20T19:26:00.004-04:00

Driving home from the great Father's Day round-up (six fathers appreciated, no waiting!), we drove through the NY/CT corridor. It's usually a lovely drive, with banks of trees lining the road, green or red-and-gold-and-orange or starkly, elegantly bare. Today, the green nearly glowed, a wall of vibrancy that, as I admired it, slowly admitted to being a mass of vine.

The trees were enrobed in the stuff, and the odd bare branch attesting to the cost. So much for enjoying the scenery - this is frankly depressing.

The vine, by the way, is kudzu, and it's the best example of an invasive species going, called by this website, the plant that ate the south. Coming soon to a northern scene near you....

N.B. Wondering what's being done about the stuff? Take a look at this, from the Army Corps of Engineers. They estimate roughly ten years of intensive effort ought to bring the kudzu under control. Bloody unlikely to happen, outside of military bases, I suspect. Sigh.

ready, set - heyyyy!

2010-06-14T13:52:00.006-04:00

With 1.5 days to go until the end of school, the Eldest pulled a stomach ache last night. By the 2 am run to the toilet (visit #5), I was persuaded. And the kid's home today, happily crashing the Toddles' special mama-time day. The Toddles had asked to go visit a yarn store, for yarn that I can play with. And make things with. But it has to be in our budget! (grin from the mama) Oh, and can we go to Starbucks?

Except, of course, that when you have a kid with the trots, not so much with the outings, right? Right. Not that he's had any trotting today.

By 10.45 am, the Eldest had played 'horsie' with the Toddles, helped him spread a few bins of teeny toys across the floor (and down the stairs, o joy), managed to require an icepack, and was asking about lunch. Having eaten, mind you, breakfast *and* a snack.

Um.

Feeling a strong urge to indulge in a round of the it's not faiiiiiiiir! wail, I've hidden myself upstairs to do something very mature: ogling chocolate. And just when I've discovered that the glorious, lovely Alpha Confectioners do not ship to the US, and I've managed to deal with/ignore (thereby allowing the sibs to build relationship problem solving skills, dont'cha know - it's what all the cool? sane? mamas are doing. no, really.) the umpteenth sib crisis, and I'm about to consign my two to offspring perdition, they go and do something like this:

Okay, says the Eldest, checking a book. We're going to need a potato, two metal forks and two plastic forks.

(I choose not to ask why. It feels safer.)

I'm ready! says the Toddles. I have a big pad of paper and a pencil! I'm ready! What do I write again?

The Eldest looks at me, fractionally hoping that I'll rescue him from dictating to his brother. I grin back, ruthlessly. He pauses, sets his shoulders, and turns to his brother, who is now bouncing alarmingly with a freshly sharpened pencil. (eeeeep?)

Okay, the Eldest begins. First, you write 'potato.' Then, 'two metal forks.' Then, 'two plastic forks.' Got that?

The Toddles looks game, but how does the potato word start? His brother explains.

One careful 'p' later, the Toddles grins proudly, and the Eldest applauds. But do you want to write the rest? asks the little. You're better at it - you've got more practice.

Oh, no, says the Eldest, earnestly. You are a great writer! You can do it - it's just going to be slow, because you are a new writer. But I'm very excited for you to do this writing.

Chocolate urge vanished, I trotted off for a nice, triumphant cackle. We might've been catapulted early into summer, but this? this I might be able to handle. Of course, it would help if my stomach stopped heaving about like that....

urgh.

let's take this allergy thing from the top

2010-06-08T18:33:00.008-04:00

There's been a ton of press lately on the great allergy hoax. Or possibly, the great allergy inflation. And I don't think they mean angioedema - they mean a swelling of numbers. 1% of allergic Americans? 10%? 30% or more? Bah, I say. And bah, again.

If there were better tests and more clinical evidence for interpreting those tests, and if those tests were conducted and interpreted by specialists, we'd have lower percentages of allergic Americans. A better sense of the realities of food allergy, and a healthier respect for the needs of the allergic person. And, with all due respect, a pediatrician is not an allergist, and should not be dipping toes into (what the Boston Globe calls) the "Byzantine and endlessly frustrating" mess that is food allergy. Even when the allergy is clear, I'd still schlep my kids to an allergist for confirmation. And evaluation, in case there's something we missed, or misunderstood. But I'd schlep 'em with my pedi's script for EpiPens, filled and tucked into my bag.

And then watch the specialists thread their way through that mess, and hope like heck they can figure whateveritis out. After 6+ years of watching allergists think, scratch their heads and admit ignorance, yeah, I can see that it's hard. They just don't know, oh, nearly enough. And I adore each one who admits it. And appreciate the dickens out of each allergist who tried.

Oh, I am so very very much looking forward to talking to allergists armed with better data - the gap between our hotshot allergy team at Big Famous Clinic and that at the local children's hospital is, well, noticeable. And I'm really, really looking forward to the next generation of tests, like the one being produced by Christopher Love and Dale Umetsu: instead of measuring antibodies to the allergen, this test looks for cytokines, a protein released by white blood cells in response to an allergen.

Our situation, however, is pretty simple: by and large, we've watched our boys react to their allergens. Dairy? watched the hives, heard the throat thicken and swell, the voice roughen, the coughing start. Sesame? watched the coughing, the vomiting, the hives, the unrecognizably swelling face, and the hoarsened, struggling breathing. Zucchini? I kid you not, on a brand new gas grill, we watched the - well, see above. And none of those come close to the time that he turned blue, then grey from an antibiotic. And so on. But I'd never consider him typical.

What percentage of Americans have food allergies? As opposed to stress, stomach aches, IBS, FPIES or EE? I have no idea. I just know someone who does.

Folks, allow me to introduce you to an allergic kid:
But hey, just because I spun you a harsh little tale up there, don't let me sit on that and pretend that it's the full truth of our reality. Byzantine, remember? We've been slogging away, watching the kid's dairy allergy decline to be tolerized, heads down, feet plodding. But the BFA docs had been considering our test results, and matched them with an array of arcane, Imperfect data, and had a thought: our particular Byzantine maze might have taken a twist or two, and we hadn't noticed. You don't, really, unless the avoidance protocol slips.

Which is how, in the middle of a big hoo-ha* about the great Food Allergy Hoax, there we were.

Um, said the Eldest, nibbling around the edges of a cracker. I'm not actually eating peanut butter yet, am I?

I peered at the teeny smear of stuff in the center of the cracker. Nope.

He blinked.

Oh, what the heck, he said, and bit down.

Nurses hovering, the kid next to him panicking, he did it again. And again - seven times in all. He grinned and bravadoed his way through, pausing together with the panicked seat-mate, to listen to a wailing, sobbing child. I won't, she cried, I don't want to. Don't make me.

The Eldest looked at me soberly. She's not having an easy time of it, is she? I nodded. The allergist looked at us sympathetically. 30-50% of the children fail their food challenges, she said. Some days, they all pass. Some days, none of them. It can be hard to watch. The Eldest's eyes widened, and he dipped his head, understanding. It was, indeed, hard to watch.

Carefully not watching, he took another bite. Shoved the fear aside, and swallowed.

That night, he fell apart, and was still a mass of boy-fragments, come morning. But when the sky failed to fall, he allowed himself to reassemble into a mere variant of his former self.

Does it go in the fridge? the Man asked. I shrugged. Dunno. What does the label say?

Cautiously, we put it in the pantry. Stood back, and admired the view. I can't believe it, the Man grinned. Shhhhh, I told the Man, you'll scare it.

***************************************************

* see here for a variety of hoo-has. I've chosen from the more sensible, avoiding the shrilly triumphant ones with the torches and buckets of pitch.

NYTimes meets NIH/NIAID (National Institute of Allergy and Infectious Diseases), re: allergy hoo-ha. Please note that the article indicates that food allergic reactions are carried out by IgE, or immunoglobulin (antibody) E. IgG, however, is also associated with an immune response to an allergen, as is noted by Victor Sierpina in the following:
hoo-ha a la team of experts
a polite hoo-ha of a review, from ScienceDaily
a local boy makes good hoo-ha, a la Globe
and a rather pithy hoo-ha from the UK, via India

Disappointed by the lack of shrieking, triumphant parents of peanut butter eaters? Try the comments section. And don't forget to bring your own torch, or at least a bag of feathers. A rail, maybe?

It's a confusing mess, and makes me oddly glad that my kids staked their claims to their allergies with hives, GI pain, diarrhea, and the odd closing throat. We've still got grey, foggy areas in our allergy profile, but that makes sense - like the science, the kid is also a slippery target. Grows, changes, quirks, repeats process.

So you won't find me waving torches in the comments sections - I'm too busy making peanut butter pasta to get involved. And shaking slightly, because it was hard to watch.

things my kids make me watch

2010-06-06T18:37:00.009-04:00

Did I mention pink? Um. Well, pink is the color at Chez Imperfect, running a mere half-step (okay, half-box step) ahead of a bunch of librarians, who wear any color but.

I have just spent way too much time watching this on YouTube with my kids, and when I offered the children a bit of funky, Boolean-worthy spoofiness, they riposted by making me watch it with them. Seven times on Wednesday, six times since.

Note: when it comes to entertaining a kid during an asthma attack, librarians beat Jay Sean, hands (er, gloves?) down. But it is a little hard to groove along when a kid's gasping next to you. Ten minutes later, happily, he was no longer gasping and was arguing with me about whether he could choose a YouTube clip about Dennis Rodman, by himself.

Um, no. Why? Because the clips are about Dennis RODMAN, that's why. don't ask me to explain don't ask me to explain don't ask me to explain - cripes - well - um.

(breathe. Cue up standard talk about misusing medication and alcohol. Deliver. Watch child's eyes widen, face grow thoughtful for what is hopefully a crucial millisecond of thought before the eyes glaze over. Cast about for something to steer the kid back to the original topic.)

Look! David Beckham!! with an inhaler! Oh - but he's hiding from the reporters in that car, doesn't want to talk about it - no, asthma isn't something to keep secret - um - what about that Kurt Grote? He's cool, going to be a pediatrician and all. Or some of those other folk with asthma, like - like - oh, Woodrow Wilson? Martin van Buren? Pliny the Elder? and - and - Alice Cooper! See? See? Um. Okay. How about a really, really fast Olympic runner?

(pause)

Do you want me to explain about Boolean limits?

Oddly enough, even my best puppydog eyes didn't get me a nod on that. But my time will come - o, it will come. The kid stopped gasping, we watched the librarians a few more times, and rocked the house ever so slightly. More, once the albuterol kicked in.

Thanks to a slightly frantic flinging of information, both the Toddles and the Eldest can now tell you all about the high percentage of Olympic athletes with asthma. They've watched the inimitable Beckham bend it, and can I see someone from the Olympics talking about their asthma? On YouTube? I'm still looking...but in the meantime, hey, Sarah Wachter? A request from the Imperfects: iTunes! please!

No, really - think about it. My kids want to listen over and over and over and over and over to a song about librarians. Help me quirk their little brains, 'k? Please?

*******
For this post, I used a list of famous folks with asthma, which can be found here. Use this information carefully, please - it may make your children roll their eyes at you. Possibly shortly before starting to imitate a bunch of librarians.