love, food and files

rebel66, thanks for your comment: I hadn't realized that Sarah's article was out. Hat tip!

It was a treat to see Breeding Imperfection featured in the magazine, and odd to see my voice - and paranoia about privacy - in print. (pause. sigh. return to keyboard.) You can see Sarah's list of blogs to follow here, and hello, Imperfect blog! I'm tickled that she put it on the list, but I note that modestly, she didn't include her own. So, allow me to inform you: Sarah's blog can - and should - be found here.

So, to anyone who trailed over from Barnard, welcome.

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I have an irk where St Valentine's Day is concerned, and it's probably an unfair one. I know, I know, it's a pin in the calendar, a reminder to be loving and that love will follow, and yes, that sometimes a flower or a yummy help show that you care.

Sure.

But I married the chocolate allergy guy, and with the boys' allergies? it's a savoury edible love for us, and we'll try to overlook the whole Saint bit on the Valentine's Day. (um) Cobble something together? The more traditional and chocolate-enabled might want to peek at this post, by the inestimable Shauna. She includes a range of suggestions for recipe tweaks, including one that's both gluten free *and* vegan.

Good for her.

[sidebar: If you are hunting down the same path, I should tell you that I had a lovely chat with the folks at Walden Farm. They have a chocolate dip that was labelled as gluten free, dairy free, and generally looked perfect for the Toddles' preschool. Laughing at my own paranoia, I called the company anyway. Oh, said an infuriatingly calm woman. But there's egg white in the dip. We changed the label to include it. I checked my label, read off the UPC code, and noted a general, freakin' scary lack of egg white on the ingredients list. Caveat allergic emptor, people.

end sidebar.]

Admittedly, I voted for skipping the cobble-and-overlook this year. Bah, humbug to cupids with sagging diapers. Phooey, piffle and scoff.

Had we been bold enough to venture out, we might have tried a newish, nearly vegan local spot, the Red Lentil. I'd gone there with friends, shortly after they'd opened. It's a small, snug place - except for one chilly table by the door. But we found a spot near the kitchen, and admired the lavishly delicious, vegan/vegetarian/gluten-free range of foods, then applauded the dueling, invented-on-the-spot desserts that were offered to an allergic friend. The waiter lingered, explaining the provenance of the avocado dessert that he'd made, while the chef smiled, then vanished. His dairy-free, eggless panna cotta needed no interpretations. Except, perhaps, to explain how he'd made it.

(coconut? possibly Hawaiian?)

((parens of explanation: I may have Hawaii on the brain. This is entirely the Eldest's fault, as I'll explain in a future post.))

Or we could have laughed at the constructed couples-only romance of St. V's, and taken the boys with us to celebrate Starbucks' new pilot program: Lucy's cookies! Peanut, tree nut, egg and dairy-free, the cookies are also gluten-free (but contain a small amount of oats). Phooey on red roses and black dresses, let's go with the ripped jeans and a burbling group of loved ones. At a cafe. The mermaid coffeehouses might be oh, yawn for you, but consider: what can my children ingest at a cafe? A box of 100% juice, sitting at a diaper-wiped table? We can make merry with that, adding something munchable from my ginormous mom-bag, but it's giddily fun to be able to spend money on a snack.

I called the S'bx people to tell them so, startling the woman who answered the phone. Oh! I thought you were calling with a complaint. Hardly. And while I might quibble over the cost (three cookies? $1.75?), I think they've firmly claimed their niche market. Last time, I bought two extra packages - on principle.

But no, we chose to skip St. Val's altogether. Instead, we celebrated with the Eldest's first sleepover. Sitting in the study, waiting to be called by a sobbing, sleepless child, the Man and I filed old papers, talking until the wee a.m.s. I fell asleep, caught between two thoughts:

2004 sucked, people.

That was the year that the Eldest coded in the ER, turning blue, then horribly grey from a massive allergic reaction to an antibiotic sent directly into his heart.* That was the year of multiple surgeries, scrambling to learn to use the kid's veins and a bargain that was truly born of desperation. We put a needle in the kid's hand, in exchange for a needle in our own. A crazy deal, paired with an unthinkable decision to try for another pregnancy. A roiling, razored, loving year.

Of all the years, it was that year that passed through my hands on this night.

But as the phone sat silent, as the Man and I talked and wished and grinned at each other, as the sun rose on a sleeping Imperfect bed - sans Eldest, plus slightly confused Toddles - I had a second thought.

It is laughable to even type it - ridiculously obvious - but in case you didn't know that I know, this is not 2004. And with the Toddles curled, fiercely independent-needy in our bed, it's not a classic Feb 14th, either. But I'll absolutely take it, any day, as a celebration of our love.

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*via port-a-cath. For those of you familiar with ports, I should note that this could have been avoidable, had a number of pieces fallen politely into place. It happens to be that the broad spectrum antibiotic that we were using - had used regularly - belongs to the cephalosporin family. And that the Eldest, scion of a family of enthusiastic penicillin allergies, was at risk for developing an allergy to it. Had we not pumped the stuff directly into his heart, had the Eldest not had so enthusiastic an immune system, had we not been exactly where we needed to be - in the ER - well. It would have been different.

And I'm still a fan of ports, if only because the icy, razoring fear of that night is separate from (balanced by?) the crucial, steady work that the port allowed; the eighteen months of teaching the Eldest's stubborn body to accept his clotting proteins. Tolerizing him incompletely, but sufficiently to allow him to play. To leave us overnight, and sleep on top bunks, shriek with laughter and tell the grownfolk to get out of the boy-room.

exaggeration, reconsideration

But Mo-om, he's done [heinous thing] twelve times!

(pause)

Well, maybe that's an exaggeration. It's been more like three times.

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I'm starting to get the unnerving feeling that the nexus of my parenting is shifting, and that the important stuff is about to be what I don't say, rather than what I do say. This worries me. Babyhood required a serious flow of words from me, an articulate-inarticulate conversation between me and the little. And hey, I'm a former grad student. My preferred setting is to LECTURE. And my boys were both a wonderful audience as I poured language on their heads.

(sometimes)

Toddlerhood was more of a call-and-response sort of thing, shifting slowly towards a more variegated range of chatter, meditative conversation, functional talk (do this, where does that go?) and quiet. The school-aged pattern, however, changes at the shift of the wind. It has invisible, wind-driven boundaries and an occasionally fierce (and infinitely vulnerable) guardian.

I don't want to talk about it.

Can we just listen to music now?

I think I'd like to just go and read.

and,

HEY!!! You poopface, mudblood - don't do that/leave that alone/that's mine/get out of here, rages the elder sib at the younger.

But it all translates to: I need to sit in my own head. Sort things out, rebalance the weight that's shifted or been added during the day. So, could you please leave me the hell alone until I'm done?

And before I slink off, feeling useless and quietly proud of his independence, he offers me something to let me know that I don't need to offer him a resonant, superego silence: the kid's on the job.

It was just three [heinous] times.

playing if x, then y...eventually

Fear not, Persephone: managing a food challenge is unbe-freakin-lievably slow. To prove it, I offer a conversation from November, 2009. Although honestly, all I need do is to point to the achingly slow process leading up to the maybe-it-will, maybe-it-won't work challenge.

Food allergies may be a frustratingly shifting target, but they can also be an achingly immovable one. The challenge is merely exemplary of this:

We've frozen the list, the woman at the local kid hospital told me.

Frozen? whazzat?

The backlog on the food challenges is so big, that we're not making appointments for new ones.

I nod. It takes an allergist per two kids doing challenges - and anyone who has tried booking an appointment for a regular clinic visit, knows them allergists are not exactly thick on the ground, or flush with spare time. The clinic must also supply a nurse, who will do the crucial work of making the challenge happen - and the dietician, who makes the specially measured and prepared food for the challenge. Periodically, this person is also the dietician who runs to the kosher butcher, to buy the kosher ground beef for a food challenge, and then calls you to make sure that she can use the same pans that she had bought especially for another kosher beef challenge (but they had a different symbol, she says and you nod, recognizing when you are out-frummed), and not used since. Plus a comfy room in a relaxed environment. Because if it was an un-comfy room, in a tense environment, a wise child might consider their surroundings, consider the appalling thing that they were being asked to do (go on, honey - I know I said this food would hurt you, but eat it anyway) and complain of feeling funny, an upset tummy, or some other, vaguely described symptom that would lead to getting the hockey puck out of there.

Kids are smart. But having had a taste of what allergy-less (allergy-free? bah, humbug) life might be, I'm impatient and, yes, greedy: I've had enough of slow, enough of being patient, and I. want. that. challenge. (stomps foot)

I change tactics, chatting for a bit about the logistics of the challenge, how wonderful it is that they offer such a facility, and is so and so still around? they have such a smooth, gentle touch with an IV...and did whatsername have her baby? I do want to know, but I am also ruthlessly manipulative here. But the alternative is to do the food challenge in a tiny closet of a room, with a freaking kid and a tense, too-busy staff. Oh yes, and months from now. Lose all 'round, I figure, and happily chatter about staff that I truly like, and memories that glow in my hands. Through the phone, I can hear the woman smile, appreciating that I'm not going to rain fire on her head for a situation that she did not create.

So could we stand on the end of the line? I don't mind waiting...

She offers us June, and we chat briefly about waiting lists. I wince. But I'm practical: the Geniuses in the other state, the other hospital, are having similar problems. And I won't risk a false negative - that can take a year or more to undo. So. Let's play "If X, then Y," shall we?

IF the bloodwork comes back with a low score for peanuts, for the Eldest, we have a food challenge. IF the bloodwork comes back with a low score for peanuts for the Toddles, we have two. Because a passed challenge means putting the food into the diet, and for some unavoidable logistical reasons, that means having it in the house. So, IF we have two and IF both boys pass their challenge, THEN we may have peanuts in the house. In the Imperfect house, allergy central, capital of the Land of Unlikely Allergic, tip of the arrow of Immunology Runs Amok Here.

On the other hand, having seen an anaphylactic reaction to zucchini, who am I to scorn? A passed food challenge to pumpkin, and a reaction to (oh, my that IS rare, said the junior Genius) pumpkin seeds - well, why should statistics and probabilities apply? Who better than us to be allergic to all of that, but not peanuts?

Improbable. Which is why I can brush it aside, more casual than skeptical. No, not skeptical - skeptical has an edge. And I have no edges here, I am all grace and calm. (Um, says a friend, who knew better. You sound like hell. And kindly let me splutter, then wail.) And so I say, airily, bah! Maybe we will have an IF. Maybe we'll have a THEN. And a something ever after to follow, but the IFs, the THENs, the inevitable, underlining maybes all dance on the edge of something, teetering between hope and skepticism. Grace declines to teeter, I'm guessing. Which is why grace is calm.

So, bah! Enough of possibilities and improbabilities: I have a birthday party to prepare. Starting with materials on this, because the Eldest, you know, has had a birthday. And he has a passion for a subject or three. And oddly enough, two of those has focussed on Hawaii.

But more on the birthday - and the passion(s) - later. For now: bah! And fear not, Persephone, we're not going anywhere. Quickly, anyway.