it's okay to be different when...

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.

okay, someone explain this to me?

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

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

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

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

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

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

Inquiring minds would really rather like to know...

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

a marathon in an alcove

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

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

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

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

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

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

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

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

plundering buckets

Of course, there's a story - but most of it is in the letter I carefully didn't write, so I think you're probably up to speed. Fill in my face, trying for calm, reminding myself that if I listen, he will talk, and if I shriek, he'll stop.

(Listen, woman, listen. Oh. And try not to laugh out loud, 'k? Because damn, when my kid decides to get himself tossed out of class, he does some very fine work.)

So, I listened. And I asked him about the teacher's response, looking to see if she gave him warnings (she did), used teamwork to help him change course (yep), and how quickly her head started revolving on her shoulders (inexplicably: didn't). Oh, and how much of each happened before the kid ended up a. in a quiet corner before being b. tossed out and c. talking to the head of the lower school.

Who, to her credit, responded by beginning a revamp of the class that the kid despises. Which I find kind of staggering, and more evidence that the kid is luckier than he knows: I was all in favor of a revamp of the kid. Possibly involving a welder, definitely with some wicked wrench work. Because here's the thing: insofar as I can see, every kid has a quota of Crap You Can Pull, which is dipped out of their Effort You Can Require of the School bucket. And I'm worried about his.

This isn't a question of being a class PIA, it's a question of needs. And this isn't just a question of going to a private (read: teeny religious) school rather than a public one, it's a practical matter. If you have a kid in your class who needs, needs, needs and then some, at some point when you look at that kid, you are going to feel pre-steamrollered. Teachers can give, and the good ones give a hell of a lot. But kids need to give back, too, refilling the bucket - or things can get strained. And strained means that there's less resources left, should you need more, simply because you are dealing with human beings. A long list of needs means that there's less left for that individual to give, because again, you are dealing with human beings.

As I might possibly have cause to know, human beings get tired. Possibly, if you are a mama, that's when you hear that vicious little snap! and begin roaring with all the love that you can muster in the midst of end-of-ropeness. There's a reason why the Short Bus parents talk so much about being tired. But I think about managing 24 kids, their needs and habits and personalities....and shudder. Because to each of their parents, every one of the 24 isn't kid, but rather Kid. And we expect the teachers to think so, too. At the Eldest's little school, we are certain that the teacher must think so. Thus: tired.

We've worked hard to expand the Eldest's EYCRS limits, mostly by being nice people and the best teammates we know how. And we try to refill that bucket by telling his teachers how much we appreciate them, and yes, I'll admit it, by making our by-now famous cookies. (At the Big Meeting before school started, the head of the lower school asked me for the recipe...having been given a tin of these the previous winter. Who knew?) I communicate whatever I can, as best I can, and do a careful if slightly desperate dance between working on the Eldest's interests and maintaining relationships. I actually like the people I'm working with, but it adds an odd flavor to really need them to like me back. In a public school, maybe I could afford to be more of a bitch, or maybe to do less baking. Have fewer meetings.

Maybe not. Because at the end of the day, there's still that bucket, limited in size by the humans toting it around.

So, here's the deal: the Eldest uses EYCRS resources by needing a little extra watchfulness, for his hemophilia. He uses a lot more for his food allergies, which slide themselves into class trips, the Head of the School's beloved squash project, Thanksgiving celebrations, and oh, just about anything Israeli/Jewish and involving food. (Ah, tahini. We meet again.) And he requires more because he tends to feel awkward in social settings, and his response to this is clowning around. Which is lovely in a classroom, dontcha think?

(more on the social thing in another post, but the short version is, unexpectedly: shy)

And oh yes, he uses more EYCRS because he's smart. Not the next Einstein, no, but can do sixth grade math smart (if I explain - okay, look up online - words like "mass," and "factors" to him). It sucks right now that the math problems that he's getting are chock-full of vocabulary that he doesn't understand, or skills that he doesn't have - like drawing a family tree - and so he gets stumped. And frustrated, knowing that part of the problem is something he could do, if he could only reach it. Does his brain fire like that in other areas? I'm not sure. But the kid drew Moh's scale of hardness for me the other day, explained it, and I thought that was pretty flaming awesome.

But hey, I'm his mom.

He's got buds in this wierd, fiery learning thing - a classroom of them, all delighted to learn and alarmingly good at it, in their various ways - and they egg each other on. The school, we're told, is both stunned and tickled. And they're throwing resources at the kids, but still, there am I, asking them to adjust to my kid's quirky levels (because there's never just one level for a kid, they vary by subject, y'know? untidy, that), and drawing on the EYCRS. Because heaven help us all if he gets bored. Trust me on this one.

So when it comes down to it, kiddo me love, you've got too much going on to be pulling more out of the bucket. It's unfair, but that's just how it goes. Can you talk to us, work with us rather than getting wired up and achieving new heights of grinning, PIA kid-ness? We-ell, maybe. The Eldest is blessed with two teachers of an admirable degree of probity and sense of humor, one of whom is openly fond of him. And who tossed him out into the hall. I asked him, she said on Friday, if he could work with me, so that he could make a good choice. I explained that he was not making good choices, she said, and sighed. I dropped my head into my hands. Not again.

I know the answer to the teacher's question: I'm sorry, the Eldest told me recently, but I really just can't. I looked at his earnest face, had seen his efforts to work with me on a calming technique, and I knew he was telling the truth. And it hurt to watch him run out into the hall, jumping and twisting so that his body bounced off the wall, mid-air, land and run on.

He can't help it. We've done testing (more on that later, too), and we know that sometimes, he really can't. Still, the kiddo wants to please the adults, he wants to do right, but it feels good to be ramped up, he told me. And he can't - yet - ramp down without my help, and he certainly doesn't understand why he has to. And I know absolutely and with a fierce pleasure, that the bucket doesn't mean crap-all to him.

And honestly, it shouldn't.

school prep & advocacy couture

shhhh - I'm not here.

I'm actually at a cafe, in the Cone of Silence, working. Except when I stop, and do paperwork for the boys. IHPs, allergy action plans, emailing (not begging. certainly not begging) for meetings with admin, teachers, People With Power, and occasionally, ogling lunchboxes.

(I don't have a proper, official lunchbox - is that a good enough excuse? mneh. Maybe not. Admission: I carry my lunches and snacks in a former wet diaper bag....works great for holding liquids.)

We're assembling lists of potential lunches for the Eldest's classmates, lists of snacks, medical kits, and researching our heinies off. Occasionally, we test out dairy-free, egg-free (etc) and gluten-free challah recipes, for the Toddles' preschool. Many thanks to a certain river, who offered a number of excellent suggestions, not to mention a really, really patient rabbit, who let the boys love her to the point of rabbit-terror. And possibly six or seventeen steps beyond.

And then there's the editing, due this past Monday. And the column, due alarmingly soon. Ack. And the garden bed that is, somehow, not quite built. Four of the boards were, oh, imperfectly cut by the friendly Home Despot guys. They gave me a free measuring tape, to my astonishment, but then cut the boards too long.

Which will teach me to use my brand-new measuring tape next time. Smiling the apologetic, harmless/semi-hapless female smile as I do it, because somehow, that seems to suit what the Despot lumber guys expect of me. (The folks in the garden section, however, use a very different paradigm. Hm.)

Paradigms are exactly the major topic of discussion around here, as the Man participates in school prep for the first time. We're talking about what the teachers want to see, what builds confidence, and the many, many ways that we think we could screw up. Honestly, I can't quite shake the certainty that we will - that I will. Because, of course, we're trailing the albatross of last year's preschool behind us.

Okay, mostly behind me.

It's funny how one trip to the Despot can get a mama thinking. The moment I stepped into the construction materials section, I realized that I was carrying the solitary pair of ovaries - and was treated accordingly. Kindly, and with a degree of amusement, and I happily played the role I was assigned. And then went home, thinking. Oh, yes, I'm focussing furiously on looking ahead - no pillars of salt here, thank you. But I can't help shuffling through the flip-deck of paradigms for school prep season: the alarmingly competent mom, the earnest mom, the wry mom, the medico-mom, and oh, I hope not, the martyr mom. I'll shuffle through many of these as I write and talk over the next few weeks. And occasionally, I'll flip off the albatross, dipping into silliness (and rabbits) to leaven the paperwork, the editing and the column.

Which means that I'm punchy and flibberty enough to be considering couture:

which of these (this, that or the other) should I choose for that first meeting with the teachers? for the Eldest's school? for the Toddles? Something that inspires a comfortable relationship, fitting with a sense of relaxed, engaged teamwork, but that says just enough about authority for the teachers to listen when I tell them something beyond their philosophy, o Horatio.

Help! my wardrobe genius moved to Philly, and the Eldest isn't playing style guru this month. What would you wear?

hat tip for finding the funny shirts....thanks!

a day in text: done

And here we go. With apologies to Anon., here's the trial (or a similar one) on clinicaltrials.gov. 

And this how it goes:

1. child tests positive on bloodwork for dairy allergy, below a certain level

2. 7-10 days off antihistamines, without enough allergic symptoms to skew the study (from environmental, etc causes) 

3. Take a deep breath.

Day One: 

• begin with scratch testing to heated and unheated milk
  
• 4 servings of a muffin (contains dairy), wait 15 minutes between servings, check for symptoms
  
• 2 hours of observation
  
• 4 servings of pizza (cheese topping - it's Amy's Kitchen pizza!!), wait 15 minutes between servings, check for symptoms 
  
• 2-3 hours of observation
  

Day Two:

• 5 servings of rice pudding (whole milk, milk powder), wait 15 minutes between servings, check for symptoms
  
• 2 hours of observation
  
• ??? servings of boiled milk
  
• 2-3 hours of observation
  

exhale. hard.

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

Lacking facebook or twitter, I'll update this post regularly (see title). And my apologies to any visual types: the lens on my camera is being stubborn, possibly because I dropped it on Friday. So much for the brooding photo of my cell phone, light playing over it - just use your imaginations, okay?

Trust me. It's brooding. And the light and shadow are playing.

4.something am: I'm dreaming that I live in a tiny spaceship, and that I've just discovered that the air is slowly leaking out. I make an emergency landing, but find myself chased by a man with a narrow face, greying hair and terrible eyes. He roars, food! food! and somehow is surrounded by a cadre of identical, horrible men. Food! Food! They shout, reaching for me, and I run. The ground is sandy underfoot, and I scrabble

and wake up, annoyed at my subconscious for its unsubtlety.

6.50 am: the Eldest is dressed, and patting my shoulder. I open my eyes, smile at him, and invite him in. He curls up under the sheet with me, my arm around him, his fingers kneading the skin over my knuckles. He grins at me briefly, his eyebrows arching like his grandmother’s, before settling back into comfort-mode.

I can hear the quiet sucking sound of his thumb in his mouth. Not holding that line today.

7.12 am: the Man and the Eldest slip out the door. Only one parent can go with the Eldest today, and he’s chosen his father. Yesterday, I was jealous. Right now, I’m still half-asleep, and I hug the kid goodbye, before going upstairs to curl up with his brother.

7.59 am: We are here. Where’s the coffee?

The Man will be sending me text messages throughout the day, and this is the first. I can imagine it: the two of them walking into the building, the Eldest holding his dad's hand, thumb firmly in his mouth. The Man, moving briskly, pleased to be on time and the Eldest clinging a bit, but ready to be delighted by this new space.

8.26 am: Weighing in!

I’m grinning now – this is old hat, and I wonder if the Eldest is asking to see his weight translated into kilos, his height into centimeters. He likes the different measurements, I know.

8.40 am: The room is good. It has a tray for pokemon and they are bringing in a DVD player.

The Toddles and I nod approval. Space for cards means also space for paper and pencils, and later, the jar of many-sided dice that I tossed into the bag. Work space is good. DVDs are good, the Toddles informs me. Can we watch one?

9.11 am: the Man calls. The clinic wants to take photos of the Eldest’s eczema. Are we okay with that? We discuss privacy issues a bit, and he says goodbye. I'm a little giddy with relief: this is the first little hurdle passed, since the clinic can't use kids whose eczema is flaring too much, or who show other signs of allergic reaction, which might muddy the data. The Eldest has had to be off his daily antihistamines for the past 7-10 days. Naturally, he's been scratching. Naturally, I worried that this would disqualify him. This is exciting, I thought. It's almost fun! I decide to laugh at myself for being so wound up in this trial, and to loosen up.

I round up the Toddles and introduce him to the unexpected lack of diaper situation, and we begin negotiations.

9.14 am: The Eldest instructs his father to tell us that, The skin pricks really hurt and I want to scratch. But, adds the Man, he’s not scratching….

We cheer, and the Toddles asks where the skin prickles are. I type this in dutifully, thinking about the ways we’re linking our family today. Tell him, the Toddles says, that I dripped applesauce on my pants and that I’m wearing pull-ups!

9.25 am: I think we left the prickles in the fridge J, says the Man. The Toddles and I grin at each other. They’re on his right forearm, the Man clarifies. Ah, says the Toddles. Can I have a pickle? We are, after all, in the land of Guss. Why not?

9.32 am: finished skin test, the Man writes. Boiled milk smudge a smidge smaller than unboiled. Both pretty small….

I can feel hope pressing into my chest, and I know the Man is trying not to let the possibilities pull his muscles taut, to stay relaxed for the kid. Look! says the Toddles, I have a jaywalking hockey stick!

He does, too.

10.42 am: Unable to place IV so far, the Man writes. Calling in IV team…

I'm hauling in extra air, inflating my chest to roar when I sit on myself, fighting an urge to stomp downtown and ask why on earth, are they having trouble placing an IV on a kid with fantastic veins? I could put that IV in. Who is screwing up?

I am, of course, much less angry about the kid getting stuck than I am worried. I’m tallying the kid’s stresses, and worry that this will tip his scales badly. If he’s scared or upset, I know, any mild allergic symptoms will loom larger. And then what? And then, I tell myself, I shut up. Because I know full well that I'm letting every wee scrap of information magnify itself, simply because I'm not there. I have no context.

Proportion. I need proportion. I close my eyes, feeling my breath fill me and nearly fall asleep.

11.24 am: The Man calls, with the Eldest on speakerphone. The Eldest is in tears. I don't want them to make my body lose the dairy allergy. I don't want to! Oh. So much for proportion. I curl up on the couch, and tell the Eldest the story of his inhibitors. Nobody can make your body do anything it doesn't want to do, I told him, ruefully. If they could, I'd have talked your body out of that sesame allergy, ages ago... The Eldest is quiet, and then wails again. I wonder if the Man sees what I see: that of the three of us, the Eldest is the only one admitting the sharpness and insidiousness of his fears.

This is his body, as he knows it. And it has defined his world - our world - as we know it. How much change are we prepared for? How little? We can embrace what comes, but the waiting cuts deep.

11.30 am: The Man calls back, having tried a phone-free therapeutic cuddle. My client wishes to offer a compromise, he suggests. He'll eat this bit of muffin, watch STOMP on the DVD player, and have some lunch. And then we'll see. Ah. Trigger identified: this was the Rubicon moment, from the kid's perspective, the moment of launch. I laugh, and agree that perhaps this is a good idea, and warn the kidlet not to enjoy the dairy deliciousness too much. I am, after all, his mother, and I have standards. It's an old joke, and it works well here, letting the Eldest rebel against his stern, anti-fun mom.

Deliciousness, I point out, comes really close to having fun. And there had better not be any of that in the lunch they're bringing! The Man grins into the phone, knowing full well that I'd discussed french fries with the staff, and the Eldest laughs, reminding me. French fries? I shriek in my best Evil Queen voice. FRENCH fries???!!

11.36 am: More muffins eaten (2nd of 4 doses). DVD on. Kid relaxed and healthy.

Inhale, exhale. Time to think about my own lunch, I suppose. And the Toddles', who is at the swimming pool with the Grandmere. I head off to the kitchen, ready to recapture some of the day's ordinariness.

12 pm: Third dose eaten.

I drop my knife, dump the tomatoes into the bowl (sunflower sprouts, olives, lettuce, basil, scallions - must add avocado, and peaches?) and proceed to text furiously, telling the Eldest that I'm proud of him for doing the hard thing, for trying, and telling the Man to be my proxy: hug the kid, high five him, and let him curl up in the lee of a parental lap, knowing himself to be brave, and feeling himself to be safe.

12.15pm: muffin finished

I dance around the room, grabbing the Toddles and Grandmere as they walk in the door. We're so close now, so close to being able to have a tolerizing regimen. Two hours to wait, but the next 30 minutes will tell. The Eldest has done the hard part, and now he can relax with the DVD player and wait. For french fries, he reminds me, and I grin.

Finish the muffin (a.k.a., Round One) without incident, and you can try tolerizing the kid, even if he doesn't make it through Round Two (pizza). Ambivalent about the pizza over here, the Man tells me. But looking forward to the fries...

1.45 pm: I'm clearly not good at waiting. The Man's not answering his phone, so I find an excuse to text them. What kind of data, I wrote, do you think the scientists are collecting today? There was a surprisingly short pause. Blood data, the Eldest wrote. Successful eating data. Dinosaur data. I checked 'maintain sense of humor' off the Eldest's status list, and mentally hugged my Man. Wonderful dad, he. Feelings data? I asked. Exactly right! they said. Nose data?

Suddenly, I remembered that I've been punchy on adrenaline for most of the day, and felt my muscles tingle. Nose data? I wrote, aiming for casual. Is the nose data-worthy? The Eldest barely blinked. Daddy's nose is more data worthy than mine, he wrote.

I grinned, he sent happy electrons, and next to me, the Toddles decided that the world was too interesting to waste on a nap.

2.10pm: The Toddles was falling asleep, but buzz! went the phone. Pizza: "great, awesome, no other words that can explain it," said the message. Dad suggested 'fastrudizzliastic." I bounced out of bed, and went to find the Grandmere. Could she settle the Toddles down, while I wiggle a bit? I promised to eat lunch, and we had a deal.

2.24 pm: second dose, consumed!

My world is shifting around me. The kid is not supposed to be able to do this. He's not supposed to be able to touch the stuff. We've been told, over and over. Is the pizza still yummy? I asked. The Man nodded, electronically. Fuck me, I blurted, astonished. Hit send. Blushed. Maybe later? he suggested, and I laughed. This changes - oh, so much, you know, I wrote. And didn't need the Man to reply. He knew.

2.54 pm: working on dose number three!

But now I'm diverted, focusing on the Toddles, who has suddenly decided to drop his anti-toilet platform, and consider the possibilities of toilet use. Tell them that I'm wearing pull-ups! he instructs me, and then settles himself on the toilet, where he'll be silent, focussed (and effective). I do, but the Man cannot pause to consider this, because the kid's on TV! He's what - wait - what? The hospital has a call-in show for the kids there, at 3pm. He's on TV. Okay, I think, that's it. I slap the ground, and it's solid, cool tile. I look up - yes, up is up, down is down, cardinal directions: check. So what the? He just explained that TV only has three colors, the Man informs me. Red, blue and green.

Just then, the Toddles explains that he's finished his poop, hops down and begins cleaning himself up with a surprising degree of competence. My eyes narrow, suspiciously. We have moved beyond the unlikely, folks. Beyond improbable.

3.18 pm: pizza done. 2 hours of observation to go. Oh, and the kid volunteered the color thing on his own.

And the Toddles is dry, having used the toilet again. His idea, his execution. I'm borne along on the current of this day, my feet trailing behind me somewhere. So I ask, is the pizza finger-lickin' good? The Man's electrons are severe: he has a fork.

of course he does. Bring it home when you come, honey, and stick it in me: I'm done.

using the plural

My sympathies are with Persephone, as I start digging through snack options for the boys' schools. It's a maze of information, misinformation and irritating details.

And yes, I did say boys, as in plural: the Toddles has a preschool for next year.

After last year's disaster, I researched my maternal ass off, looking at just about every Jewish preschool in the area, and any number that I would have sworn were too far away. Many treated me graciously, many emailed or called me sadly, days after my visit, to admit that they couldn't handle the Toddles' allergies. Too much risk, or too much liability, or we're just not set up for it. And occasionally, ah, and we wish that we could....

I was grateful for every school that turned me down. How else? I'd rather a school say no, realistically, than to casually, or even idealistically take on my child - and not be able to manage him. And I said as much to each school I visited, candid about why we were there, and how I'd contributed to our departure from his previous school.

In the end, two schools remained. One wait-listed us, while the other invited me to meetings, built files and began working with me even as I waffled, wondering if the first school would open up a spot... In the end, I was won over by a lady with an armful of detailed, careful notes, an organized file and a memory for detail. She understood my situation to a degree that is rare, outside of parents doing the constant micro-adjustment dance for their own, complex child.

Oh, but it is a small school. Tiny. Maybe 25 children, in three rooms. All of the rooms flow into each other, and the open doors between the classrooms are a key element to the curriculum. So, said the director calmly, fearlessly, we'll have the entire school become Toddle-friendly. 

I gasped. I gaped. I stared at her, searching her face for any sign that she was slagging me. But she wasn't, which is how it comes to be that the Toddles will be going to her school. Her pluralistic preschool, run by a right wing Jewish organization. But who cares who funds the place, when it's run by someone who understands, and isn't afraid to adapt. 

So, the boys' schools. Plural. And lists of snacks, phone calls to companies, website searches, and ugh, oy, freakin' bloody inconsistent labelling. But enough of that. Try, instead, this:

And, lest you think that the Eldest is the only one who can nerve himself to stick a needle in his arm, I should note here: he's not. With a box of my very own factor in the fridge, I had to admit to the pharmacist that yes, my infusion plan included waiting for the seven year old to come home from school. 

um.

So, the Eldest and I did it together. But no, he did not hold my hand. After all, it's just not a big deal....and he kindly explained why. And, two days later, he demonstrated.

See?
(like hell. I was scared poopless.)

one reason to wish our TV worked...

..curiosity.

Hat tip to the Nome, for pointing out that USA Network's new show, Royal Pains, is starting with an, um, ooze. Yep: hemophilia.

Here's a short review done by someone who seems to know his tellyvision, and another done by someone whom, I suspect, knows his factor level. Shockingly, the show doesn't improve by having a bleeder on it.

And happily, curiosity isn't enough to impel us to shell out for a tv and the cable company's goodwill.

an Imperfect stimulus package

Note: the theme for this post can be found here

Um. Yes. But some weeks that's easier than others, hmmm? This week, my house is festooned with laundry. Laundry is not really compatible with enjoyment in my book, unless it's clean and en route to drawers. Right now, it's clean, dripping and doing nasty things to the wood trim on the stairs. Oh, and did I mention that it's everyfreakingwhere?

Tablecloths dangle down the stairs, towels are drying into something stiff and regrettable, socks are hanging from slightly open drawers, and the Eldest's undies are best left undiscussed. Still, this is all in service of a good cause: in the midst of a recession, the Man and I are making a sincere effort to support Mike the Service Man. This month, Mike has been a mechanic (I'm sorry, ma'am, but your car won't pass inspection), an oven repairman (you are smelling gas when you turn on your oven?), a washer/dryer repairman (oh, wow. your motor blower is completely burned out), and finally, a pair of rheumatologists. Clearly, we Imperfects are doing our best for the economy, by pumping astonishing amounts of cash into the hands of the nice folks who are trying to help us.

- thanks, guys -

Hooray for the Mike who replaced the tires on our car, especially the three with balding treads and cuts. The fourth was a bonus - just like the unbroken passenger side mirror. The spark plugs were rather more necessary, but I can't speak for the quetzl. Or the mrgfnlap. Driving in snow and slush has been rather easier since Mike set to work - must be the new mrgfnlap that did the trick.

Hooray for the Mike who replaced the igniter in our oven, and let the nasally functional Imperfects relax. And look! The oven can reach 350F in under 25 minutes now, thereby enabling QG's birthday muffins.

We're reserving judgement on the Mike who came out and oohed and clucked over our poor dryer. He's still ordering the part. Um. I'll get back to you, says Mike. Grkltfp, say I.

And oh, so nice to be done with the Mikes from the rheumatology department, who patted and flexed the Eldest this morning, trying to solve a mystery. The delights of these Mikes were rather mixed, alas, as was their success. But hey, it's all part of stimulating something. My temper, perhaps? My not so latent ability to worry? Whichever it was, mission accomplished.

I would, however, have preferred less mystery and less Mike. Ah, well.
******************

The story of the rheumatologists (hastily explaining here, before some local readers head over to beat my head in for amusing myself/being cryptic) is the story of a two year-long mystery.

Last autumn, the Eldest started school and promptly began to have a number of hand bleeds. Except that they didn't quite look like hand bleeds, because his hand would swell up oh so fast (poof! ten minutes, and there was Michelin man hand). There was no serious pain, no bruising* and the swelling would go down in a couple of hours. So, said the Man, was this a bleed?

We argued about it throughout the autumn (treat as if it is a bleed, said the hematologists - but-but-but insurance! irresponsible use of resources! spluttered the Man), and into the winter. At our annual visit to the hemophilia clinic, the hematologist frowned. No, he said. It doesn't sound like a bleed. The Man looked smug, and I sat up straight. Fine, then. So what is it? The hematologist shrugged. Not a bleed, he repeated. Maybe it's an allergy thing?

Five months later, the allergist listened carefully. Could be caused by allergy, he said, but given the circumstances, it sounds unlikely. But ask the NY team.

Three weeks ago, the New York hotshot allergist tilted her head to one side. Hmm, she said. You should treat it as if it is an allergic reaction, but out of curiosity - is there any angioedema in your family? I frowned, half-relieved that she was taking this seriously, and half-disliking her line of thought. No. No angioedema that we know of.

One batch of bloodwork later, we were on our way to this year's annual hemophilia clinic visit. The hematologist looked at the lab results, and repeated them, ordering a full panel of not my specialty tests. They came back, predictably, funky in entirely different ways. Not my specialty, sighed the hematologists. Not my specialty, pointed out the allergist. But treat it as if it were.

I went off to find my favorite head-banging spot, and indulged in some therapy. Ow. And sat down to think.

As far as I could tell, we had a number of challenges here. First, was perspective. It's tricky to turn off the medical mama eye, and to decide when you have a normal level of weird, and when you have a worry-worthy level of weird. And, once you realize that your kid is medically cracked, the naivete that might stop you from looking for more cracks vanishes. What else is lurking, asks the newly-realistic mama. What else is coming? It's a tense way to parent, waiting for the next diagnosis, even looking forward to the next diagnosis - after all, the diagnosis is the sigh of relief that follows a freakin scary unknown patch. Pessimism or realism? Medical microscope or reality? I tossed the Eldest into the car and drove while his hand ballooned. Oh, boy, said the pediatrician. That is odd. (perspective: check.)

Next, was information. If a hand swells, does that mean we could see a foot swell? A leg? A neck? Without an understanding of the process and it's implications, we couldn't judge this. Nor could we direct ourselves to the appropriate specialist, while our own dithered. (information: blank)

I'll admit that a third challenge was sheer irritation. I dislike being shuffled from pillar to post. I especially dislike people not taking responsibility. And I distinctly dislike not having a plan in place to respond, should that swelling do something exciting like push the Eldest's airways closed. Yeh, definitely not so much liking that one. And, I admitted to myself that, post-pre-school imbroglio, I was also a little touchy about people not taking me seriously about my boys. (irritation: working on it)

Enter one of my favorite ob/gyns, and her immunology textbook. She produced definitions, prodded a friend for a quick fly-by opinion, and then for a reference. Enter a Mike the younger, a thoughtful fellow, gentle with the Eldest and carefully listening to me. I slapped on my best non-crazy mom face, did my best to ignore the hot chocolate drying on my pants (oooh, itchy), and worked to be precise about something that echoed in my head as what the hell? Mike the younger listened carefully, explained the possibilities he was considering, and why. He grinned at the Eldest's jokes, quirked a pleasant eyebrow at me, and went to find his boss.

Mike the elder walked in, smiled - and whipped a couple of chocolate pops out of his pocket. He held them out to the boys, who stared at him. Want some dum-dums? he asked. The Toddles looked at me. That's so sweet of you! Do you mind if I look at the ingredients? I offered an apologetic smile. The boys have a lot of allergies. The pops disappeared back into his pocket. Oh, said Mike the elder. Allergies I don't know. Kashrut, though, I do.

Yes. He did. I could tell by the sudden stiffness of his shoulders. (note to self: don't make the doc cranky)

Mike the elder quizzed the younger, correcting and interrupting him as he saw fit. In the face of this certain superiority, I found myself wanting to argue, but I could see the barest outlines of the elder's analysis. He dismissed this bit of information, focused on that - it was hardly pleasant for Mike the younger, but it was unarguably educational. As the Mikes had their pedagogical moment, the Eldest and the Toddles discovered the snack in my bag. Quietly, they began to bicker.

As Mike the younger's skin was thickened by his mentor's methods, my boys ratcheted up the bicker. Cooperatively, the Eldest hopped up on the exam table, ignoring my peacemaking while stretching for a Mike. A Mike pronounced something about the Eldest's heart rate, while the Toddles did an end run around my hands and the see, honey? won't this be fun/yummy/keeping out of trouble-worth? The Mikes frowned over the Eldest's hyperflexible joints, informing me that these were not a wonderful thing in a child with hemophilia.

Oh, I said, thinking this over. I have hyperflexible shoulders, or so my yoga instructors used to say. He must have got it from me.
Mike the elder frowned at me, unamused. Yes. But you don't have hemophilia.
I spent a completely unnecessary fourteen seconds explaining that yes, in fact I do. And then spent nine horrified seconds watching Mike the elder frown at me. (Ohno the doc thinks I'm an idiot what will he do he won't take me seriously he won't treat the Eldest must fix he's mad ohnono)
Oh, I tripped over myself. But that would be different for severe hemophilia. Mike the eldest forebore to glare. Right, I babbled. More significant for a severe.

(sigh)

In the corner, the Eldest grabbed a cracker from the Toddles' hands, leaving the Toddles planning his vengeance.

Mike the elder chose a diagnosis that Mike the younger had marked as unlikely. He explained other diagnoses as improbable, whisking through a quick explanation of inflammation without wondering if I understood words like osmosis and idiopathic, but certain that I wouldn't understand plasma, or vascular pressure. (score: 7.2) Mike t.e. won points for his certainty, and for choosing the diagnosis least likely to involve life-threatening outcomes. He did not, alas, persuade me of his diagnosis' accuracy.

Mid-lecture, the Toddles made his move, swooping past adults to belly up to his brother. I want some crackers, the Toddles shouted. Give me some! (I said something ignorable) The Eldest, coming late to his share, stared his sibling down. They are MINE, said he. (I caught the Eldest's eye, and said something similarly ignorable) The Toddles inhaled deeply, and Mike the elder leaned over. Grabbing the package, he looked the Eldest in the eyeball. I am trying to talk to your mother, he said, and I can't do that while you are being loud. Give. Him. Some. Crackers.

The Eldest growled, and did.

Driving home, I reminded myself that a good clinician is not, alas, always equipped with good people skills. But it does not help persuade a mama as to the clinician's diagnostic skill. Although it does warm a sneaky cockle of me heart to see the Eldest, his hands firmly on the bag of crackers, pulling back as the Mike tried to yank it away....

**************************************
* some bleeds are deep enough in the muscle or joint that you won't see redness or bruising for a long time. Sometimes, you might not see bruising at all, but you can see swelling, the child will show pain, and you can feel heat. Days, even a week or so later, the old blood rises to the surface, making patterns of blue, purple, browns and yellows. But that takes a while. It's unnerving to treat a bleed that you can't quite see with your eyes, and we're urged to treat quickly. Faster treated, faster healed, saith the hematologists - and indeed, it's true. The odd downside is that if you treat that quickly, you're much less likely to see any bruising later on, leaving the Man irked: he likes his empirical evidence. Me, I can deal.

letting him choose

(for this carnival, if somewhat belatedly. Sorry, folks!)

When the Eldest was just a lump in my tum, happily kicking my bladder, the Man and I discovered his lullabye. By Trout Fishing in America, it was an old song sung sweetly - and we fell in love.

Close your eyes and listen to my song
Lullabye, sleep the whole night long
The cricket's serenade echoes softly through the night
The clouds are on the lake and the moon is shining bright.
Don't worry, I'll be beside you should you call -
just go to sleep now, close your eyes.

We sang this song to each other, to my tummy, and when the Eldest was born (okay, extracted), I listened to the Man singing this to our tiny baby, while the docs sewed me up. Eight days later, we sang it to the Eldest while he got his first IV, his first transfusion, and his first emergency CT scan. I'll be beside you should you call, we sang, and we were.

One diagnosis later, we went home, and watched our cozy nest fill up with clotting meds and needles. On the table, the sharps container glowed.

Dragons in the sky, flying with their golden treasure
If you catch their eye, wishes granted more than you can measure

But could this kid fly? What kind of treasures could he have? Now, we laugh at the very question, but at the time, we couldn't imagine. So we settled for the end of the verse:

I'll be beside you should you fall,
just go to sleep now, close your eyes.

And we were. With cushions and knee pads and foam, in a caricature of the anxious parent. In fact, learning to let the Eldest fall was one of our greatest challenge as new - and newly diagnosed - parents. Letting him fall came to mean trust and knowledge for us: we had to know that he could fall without long-term harm, and we had to trust the three of us to figure out how to handle the aftermath. But we kept our promise: if he fell, we would be there for him. If he needed us.

We learned our lesson well, I think (I flatter myself), but the Eldest is still learning his. On the occasions when he remembers to be afraid, he's extremely good at it. Play soccer? no problem. Climb on the playground structures? sure. But something new comes with a high barrier: I don't know it, so I am reserving the right to be afraid of it, the Eldest tells us. Left to his own devices, half of the old question lingered: would this kid fly - or would he tie himself to the ground? The treasures, it turns out, were part of the answer.

This summer's adventures in circuses - and specifically, flying - was a much debated challenge to the Eldest's self-made boundaries. The Man was uncertain, I was uncertain, but we could both see the opportunity shining in front of the kid. On the days when the Eldest bounced home from circus camp, the Man glowed. I flew! The Eldest would tell us, and spout details about the trapeze. On the mornings when the Eldest huddled, refusing to go to camp, the Man glowered at me. By the time we were done, I felt like I was the one hooked into the trapeze safety lines, and being hauled up and down.

When camp ended, the Eldest turned to me and said, wistfully, Couldn't we have another class? I stared for a bit, and then sat down and turned to a friend. Moral support and friendship would help here, I thought - but she was ahead of me. Swiftly, she put together a group of three of the Eldest's classmates: the four of them would have a lesson together. Chattering, joking and irritating each other by turns, they did.

That day, the Eldest swung happily on the small trapeze (a mere 7 or so feet off the ground). I watched his body direct the swing, moving confidently and comfortably at that height. Well, now, I thought. That's new. The Eldest dropped down, unhooked his harness and stopped cold. He stared at the ladder going up, up to the big trapeze (goodness knows how high, but the net was above arm's length). He walked over to me, his face calm.

I'm going to try the ladder, he told me. I hugged him.

And he did. Up and up he climbed, making it about three-quarters of the way up. I could hardly watch him, afraid that he'd stop, be scared and the fear would overwhelm his courage. He stopped most of the way up, stared at the top and went back down. Holy crap, I thought. Now that's beyond new.

He came back to me, and I hugged him again. I'm so proud of you! I whispered. That was not easy, to try that. He pulled back a little. I'm going to get comfortable on the ladder first, he told me, and then I'll try standing on the board. And THEN, I'm going to try that trapeze. I let go of the kid before I started dripping on him, and wished him luck.

That day, he made it most of the way up, stopping four rungs from the top. A staffer leaned alarmingly far to high-five him, and he came down glowing. Slightly hoarse, I drove him home. We were nearly home when he spoke up. Can I do that again? I blinked and grabbed for my best poker face. Let me see what I can do.

On the last day, the Eldest made it up the ladder. He touched the board and thought it over. I think that's enough, he said. I tried not to crack his ribs. Well done, love, I told him.

On our way home, the Eldest politely listened to me enthuse. You have power in your body, I told him, and the Eldest nodded. You can use that power to kick a soccer ball, or to climb a ladder or even to use a needle. The Eldest made an I'm-listening noise. But when you are scared, it's easy to forget that you have power, isn't it? All you can think, or feel or see is scared. The Eldest's face lit up. Yes! That's exactly it!

Today, kid, I went on, I watched you push past being scared and remember your power. You had it on the little trapeze, and you had it when you chose to try the ladder. That's very hard to do, and I'm proud of you.

Quiet now, I listened to the Eldest thinking. He didn't fall, and he didn't fly either. But he did let himself reach for the sky.

It was more than enough.
*************************************************

tired of trapezes? No worries. For a change of pace, try getting your ears pinned back over here. So, are you pro-choice, pro-life, or pro-birth? Julia did a beautiful job on an often bitter topic - but what else is new?

the one in the back is mine

Day Five:

it was the day of the big show, and the day that the Eldest woke up to find his cousins in the house. I'm not going to camp, you know, he said conversationally. Ah. Come sit down with me, I invited. As we sat, I explained that he was part of a team that was putting on this show, and that we'd all zip out to watch him - and his team - put it on. He thought this over.

You'll all come and see me? I nodded. Cousins too? I grinned, and hugged him. Cousins too, I promised. And the Eldest went to camp.

Come the appointed hour, cousins, sibling and one excited-nervous-excited mama were in the auditorium. Oh, oh, oh, what we saw. We saw

• girls spinning in great hoops
• tumbling
• girls swinging themselves up and round and down and round with long silks
• boys and girls doing magic tricks
• acrobatics on a trapeze
• a disappearing act
• an Indiana Jones bit
• clowns and balloons
• silks draped from the ceiling, and people twining themselves through

.......but we didn't see the Eldest.

Eventually, it came time for a clownish boxing match. Out trooped the clowns, out trooped the kids in their costumes. And out came the Eldest, wearing his regular clothes. He stood there, a little kid poised awkwardly but happily on the stage, with a huge sign: CHEER. He waited for his moment, and held up the sign. CHEER.
And we did.

When his counsellor, dressed in a silly clown costume (but no scary painted face) ran out on stage, the Eldest bravely chased him around a bit with a big foam mallet. And then wandered around, looking lost. The audience waited patiently, while the Eldest found his bearings. Which was good: he had one, last job to do.

It was the juggling act, his father's hobby and the Eldest's favorite. But he'd felt no need to actually learn any control over the balls, nor to practice any specific moves. Instead, the kid liked to throw the ball. High. And then catch it. Mostly.

So, out walked the Eldest onto the empty stage, holding his ball. At center stage he paused, grinned and yelled, ball! and threw it. Up, up, up. And tried to catch it. A horde of kids with juggling paraphernalia come pouring out, and filled the stage in front of the kid throwing and catching his single ball. They perform, and then line up for a bow. In the back, the Eldest was still throwing and catching his ball, oblivious.

Eventually, he realized that he should join the group, and shyly tried to find a spot to stand. He found one, was edged out by a more enthusiastic kid, looked for another spot, gave up and went back to throwing. Bow, go the group of kids. Hooray! shouted the adults. Ball, whispered the Eldest to himself, and tried to catch it. Watching my non-theatrical son find pleasure on the stage, I laughed and smiled until it hurt. (Oh, little love.)

The show over, we all hustled outside, to cheer for the kids trying to swing - and get caught - on the big trapeze. (remember the net?) The Eldest watched, awed, as his friend swung and was caught, a rare success among the courageous. Safety harness on, the Eldest had other plans.

He found his favored circus staff, and she hooked him up to the little swing. I looked up at the Eldest, dangling from that thing, and considered how I would really rather not get on it, myself. But there he was, trying to swing his body back and forth. Going down, said Renata, and let him down. Whoops! Going up! she said, and yanked him up. The Eldest, a firm believer in ample advance warning was somehow grinning as she hauled him up and down, comfortable with having her manage his safety. He was relaxing, I thought, into his body and what it could do. He was, I hoped, thinking less about what he couldn't do - or about what might happen if he did.

Look! said Renata, laughing, he trusts me now! I looked. I saw the Eldest laughing, Renata's understanding of all that he let go in order to laugh, and I smiled so hard my eyes watered.

If that's the kid's boundary, then he crossed it this week. And I can smile - and get damp - over that. Bravo, Eldest. Bravo, dear one.

the boy who flew. Sort of. A little bit.

When you first see it, the whole thing looks like some giant playground structure, with a net.


A net? you wonder to yourself. But then you get closer, and you realize: that ladder goes all the freakin' way up. Up. And more up. Holy crap: it's time for camp.




This time, I have really gone just too far, I told the SIL. This cannot be right. How on earth did we talk the hematologists into this? She grins at me, and tells me that the hematologists and I are both just doing our jobs. They defend their boundaries, and I push them.

And yet. It is, after all, circus camp. With trapezes. That was one hell of a push.

Day One:
I'm just not sure that this is going to work. I have spent the previous week talking to the wall, the air (okay, myself) and the hematologists. I have not spent the previous week looking over the camp itself, training the staff and discussing this with the on-site nurse. Can we do all of this on the first day of camp? Effectively? For something that's frankly a little bit of a crazy idea? The night before, I have wierd stress dreams about flying and trying to find nets to land on.

But we go, and I talk hemophilia and allergies with a very nervous looking blond guy with muscles, and an extremely calm woman (also with muscles, I note, and consider a gym membership for the nth time. Nah). I hope the calm woman will be assigned to the Eldest's group. She is not.

As I am leaving, the Eldest and the blond guy climb onto a folding table and sit companiably, watching the kids do tricks. They look comfortable - until the table collapses under them, dumping them both on their butts on the floor. Bag on my shoulder, I wait - this is a field test for my newly trained deputy, and I want to see how Mister Nervous handles it. There's a long pause, then I guess that's why they call them folding tables, the blond guy says, ruefully. The Eldest gives him a well, duh look. I grin and walk out the door. As twitchy-nervous as the staffer looks, he's obviously got a handle on how to manage an incident. Fine.

Later, the Eldest looks at the trapeze and refuses to go near it - as predicted. He learns about diablos and juggling, and consents to swing on the smaller trapeze (7-8 feet off the ground). He swings for perhaps 5 seconds. Tomorrow, I'm going to try that again! he tells us.

That night, he has a nosebleed. Same side of the nose as before, and the Man panics. I am asleep, and wake up just long enough to delegate panicking to my beloved spouse. More stress dreams: now I am hunting for pharmacies.

Day Two:
I stop off at camp to dose the kid with Amicar, and find him swinging his legs in the JCC pool. You should really teach me to swim, Mum, he says sternly. I agree, and again reconsider our lack of membership at someplace like this. I go home and look at the pricetag on membership and remember why we don't do that. Yeeouch.

I pick the kid up from school, and he regales me with tales of hats, lost underwear and a faux boxing match. Ah. So, kid, what about flying? You were going to try it again today, right? He looks at me, defensively. I forgot.

Oh.

Am I going to spend time being preemptively sad that the Eldest might just miss this opportunity? Hell, it's his opportunity to miss, and mine to provide it for him. Silly woman. But going to be a little sad anyway, for my poor scared Eldest and the silly adults (me included) who taught him his fears. Some of them, anyway.

okay, most of them.

Day Three:
I drive out to camp, sitting on myself. I will keep my mouth shut, I will keep my mouth shut, I will keep my mouth shut. We wend our way from the parking lot to the trapeze setup. Have a wonderful day, hon, I tell him. And don't - have - fun! It's the ritual goodbye for my kids, and the standing joke: moms are in charge of squelching all fun and joy. The Eldest hugged me back, and ran off to join his friend.


By noon, the Toddles and I were back with the Eldest's next dose of Amicar. Words leaked past my mouth, so, did you fly today? The kid looked at me, his eyes shining. THREE times! on the little swing! That night, he positively glowed during dinner. I went on the little swing FOUR times, Dad, he told the Man. I only stopped because the counsellor made me.


(This I knew - the counsellor, noting the Eldest's glow, apologized to me. He had to supervise other children when the Eldest was ready to fly a fifth time on the little trapeze, and felt terrible about letting the kid - literally - down.)


Tomorrow, he vowed, I'm going again. And this time on the big swing, too.


That night, he has another nosebleed. I consider it a cosmic sign of balance, or possibly a reminder: he can fly, but he's still bound.


Day Four:
I'm not going to camp, he told me. Stop driving me to camp. I quit camp. Why are you still driving me to camp? Hands firmly on the steering wheel, I nodded. That's fine, I told him. But you have to tell the counsellors in person that you are quitting. And you need to give me a good reason for why you want to quit. The Eldest argued the entire way there, and stomped over to the trapeze set. Nobody was there.


They were all inside, rehearsing for tomorrow's big show. The juggling act, the acrobatic act (I want to climb that rope in the show! he told me. It's just like that one on the playground), the clowning and the magic act. Hey, kid, one of the counsellors called, do you want to climb inside the box? The Eldest shook his head, vehemently - and settled down to watch. Fascinated, he said, I think I like watching them better than I like doing these things. And so he watched. After a while, he waved distractedly as I left, and then looked up calmly when I returned, Amicar in hand.


How's it going? I asked. He nodded thoughtfully. It's okay, he said. I don't want to do things, but I do have a couple of jobs. A counsellor drew me aside to apologize: the kid just wasn't going to be the star of the show. It's okay, I told him. All I want is for him to have a chance to try. Quietly, I was a little bit, secretly sorry not to have the Disney-esque spectacle ending, with the challenged hero rising triumphant.


But hey, this is real life, right? Not a movie. And so, that night: you know that I'm quitting camp now. I am NOT going back tomorrow.


sigh.

coming soon......Day Five: the boy, the stage and the swing

noted in passing

Tomorrow, we're going back to the local organic farm to pick blueberries and dig up earthworms (as above). But tonight, it's late on Thursday night (aka pre-shabbat prep night) and I have a large list of urgent things to do, so naturally I'll babble to you all a bit.

It's been a full week, and I've spent a lot of it roaring at the children. And then feeling awful about it (this tends to help with the roaring - guilt as curative) and then feeling like I'd betrayed the point of last weekend, which was obviously meant to fix me so that I am, however briefly, a more mellow and loving person.

whoopsie.

Instead, this was the week of stumbles and bumbles and impressively loud grumbles. I used words like unfair a lot, and a vague not nice - both of which I interpret as I can't really figure out why I'm draggin here, but I am NOT happy and somehow NOT kicking into the higher mama gear necessary to deal. Suck it up, shorties. This, as you can imagine, is seriously inspirational stuff, which is why I blog about it.

In short, this has been a fairly typical Imperfect week, with some added baggage. (see guilt, above):

* I created myself a nifty email addy, all anonymous and suchlike

* I signed my real name to a couple of emails from my nifty addy. erm. This is extremely uncool, the Man points out, in terms of the whole blogging deal (negotiated way back when), in which I promised not to endanger my future chances of getting insured by using real names. Argh. The Man is now politely ticked off (he does this extremely well) and I feel like a ripe idiot

* I sold an essay. To someone with an actual printer.

* I watched a book contract start to go down in flames. Mayday, mayday.

* I made food

* I was to rushed to actually slow down and taste it. Which is a real shame, because I made things like basil-artichoke pesto (see below), which is amazing. Hat tip to The Allergic Kid for the recipe, now happily adapted.

* the Toddles got hives - for no apparent reason

* I celebrated how calm I was about the hives by yelling at the kids for something completely unrelated. See how good?

* I invited a bunch of people to come and visit

* I realized that September is coming, complete with school training sessions and deadlines and freaked out...and then decided I was freaking out over the people coming to visit. See how more good?

* I ate peaches, warm from a tree. They taste so good that I deliver some to a friend who is currently a bit short on both sunshine and trees. Well, maybe not the sunshine.

* I started reading Barbara Kingsolver, who is currently trying to persuade me to only eat my peaches warm from a tree. I decide to resent Barbara, and eat several plums cold from the fridge. They do not taste nearly as good, and Barbara snickers.

* I volunteered to be an editor at Bridges, a really excellent new website that looks to become a resource for people working through a wide, wide range of challenges. I've been reading things that are (gasp) unrelated to my children, food allergies or hemophilia. While eating chilly grapes. (Take that, Barbs!)

* I failed once again to understand why Blogger occasionally double-spaces my posts. Anyone? Any ideas? I do not, apparently, speak Blogger help well enough to get this sorted out.

* I had coffee with someone who really could not have been my friend, who chewed me out spectacularly, told me that she thought I was a terrible parent, and now seems rather nice. My thanks to a certain librarian, who helped me with some necessary translation.

* and more, but who has the time to type this stuff up? or read it, for that matter. I'm off to bed to catch some shut-eye before the morning coffee and earthworms. So, I shall leave you with a recipe, a couple of things to think over, and a shabbat shalom.

May your week draw gracefully to a close, and conclude with family, good food and a much needed nap.

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Basil-Artichoke Pesto (or That Which is the Best-o, saith the Toddles)
serves many, or makes enough to generously coat 1.5 bags of spaghetti

1 large bunch basil, well washed and thoroughly dried
1 can artichoke hearts
juice of 1/2 lemon (optional: toss in the zest)
2 cloves garlic
1/4 tsp salt
1/4 tsp coarsely ground black pepper
1/3 c sunflower seeds
1/4 c olive oil

In food processor, blend garlic and salt. Add artichokes, basil, sunflower seeds and blend a bit more. Toss in remaining ingredients. Consider that, were your food processor less than 12 years old, you are probably going to be able to get away with chucking everything in at once. But what would be the fun in that?

Taste, and adjust seasonings. Toss with hot pasta, or use as a sandwich spread. When saved for the next day, avoid oxidization by gently pressing a bit of plastic wrap right onto the surface of the pesto.
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a couple of things to consider:

The FDA is taking comments on those pesky allergen advisory labels. May have peanuts seems clear, but how does it compare to made in a facility that processes peanuts? Or made on shared equipment with peanuts? Or good manufacturing standards used in a plant that also processes peanuts? Argh? Feel free to weigh in here - and hat tip to the Allergic Kid.

seen this? It's a great little video on von Willebrand's Disease - an astonishingly common bleeding disorder that affects 1-2% of the population.

An enjoyable discussion about pareve vs dairy-free over here: these guys definitely don't live in Allergy World. But it's interesting stuff, nonetheless.

returning to the real world

We spent a weekend blissfully in the bubble of caring that is the HitWGC . Mothers and fathers of children with cancer, blood disorders, immune disorders - we spoke each other's language, and we cuddled under handknitted blankets to talk.

And talk. And talk. And pass the tissues. (but no KoolAid) And hug each other! Imagine: a nice Jewish girl from New York hugging people. In my neighborhood, you didn't even make eye contact. And yet.

I don't think I had realized how much I needed this past weekend until it was offered to me - the photo of me and the Man, taken upon our arrival, shows me looking suspicious and wary. I don't like weekends that are designed to make me cry, and pity raises my hackles. And yet.

By the end of the weekend, the Man and I had relaxed back into each other, laughed a lot, hugged a lot, and considered some rather clever suggestions from friends. (thanks, Julia! And b'sha'a tova, indeed it was...) The photo of me, taken Saturday night, shows me wearing a gigantic blonde foam wig, and mugging for the camera. At the time, I was two Coronas into the night and had just done my very best electric slide, which should tell you something.

This haven is a precious gift to us, and I feel so silly that it is offered. No, this isn't an opportunity for you all to tell me that we've earned it: there's specifics here. The HitWGC is available to us for hemophilia. But think about the list: kids with CANCER, kids with immune deficiency, kids with sickle cell and any number of things that are much scarier and painful and immediately life-threatening than hemophilia. Get up, brush teeth, do factor - as Rix once described hemo-life to me. Think something is brewing? Give more factor. Truly, our adventures from the past month aside (and I insist on this 'aside' bit, because you'll note that hemo stuff has been mostly blah on the blog lately, aside from the Nose Saga), hemophilia is managed care and low-level stress. Totally manageable. For us, anyway.

Food allergies, on the other hand, are high stress and a bitch to manage. But that's not what got us a ticket to HitWGC. I'm waiting for them to realize that hemophilia is a cakewalk, by comparison, the Man whispered, and kick us out. I nodded. Me, too.

Sitting in a circle, I heard a mom admit to struggling with bonding with her medically fragile child. She told us how she pushes the child away, afraid to really connect with the kid. My mouth opened, and I heard myself say, sometimes, I imagine that he's died. My mouth went on. I imagine what could have happened, and how, and I imagine someone telling me that he's dead. I sat there, opening and closing my mouth like a fish. Someone handed me the tissues, and I realized that I was crying. Dammit, I might have thought, I do NOT cry. But I had cracked myself wide open, and I was breathing, and felt safe. So I cried.

It's true, I do imagine the boys dying. Some days, I need to - I need to walk through the fear and face it. But whenever I push myself through the scenario, it's not the clotting that kills them - it's the allergies.

Allergies make my boys fragile in ways that hemophilia does not. But how to explain this to the other parents - the cancer parents who are afraid to buy diapers in bulk? When pressed, I just said that I was the parent of a child with hemophilia, who also had - along with his brother - an immunological funky that made things complicated.

Some people get what it means to have a peanut allergy - this crowd probably would - but peanut allergies are such a hot button issue that I didn't really want to risk it. And I didn't want to explain how it works, walking them through an immune system that strips your pantry bare, rips up carpet and slashes the PDR's antibiotics list. My kids have allergies like they're grabbing candy off the shelves at the grocery store. Except that they're probably allergic to the candy.

Dairy and eggs fired the warning shots, and we were off and running. A peanut allergy (legumes) invited the body to test out allergic reactions to lima beans, peas, kidney beans, pinto beans, chickpeas and lentils. A wheat allergy lead to allergic reactions to rye, oat, barley and spelt. One tree nut allergy begets another, as is often the case, but it then expanded to sesame and poppy seeds. One antibiotic reaction lead to another, and lead to the Eldest coding. Days later, the infectous diseases docs were begging us to sign the child up for surgery - it was the best chance of protecting him against an infection that they wouldn't have the drugs to cure. Hemophilia, meet allergies. Allergies, please procede to kick a little hematological ass, hmm?

When the Eldest developed immunological knock-outs for his clotting meds, it was wholly appropriate. His immune system is turbo-charged, the docs said, marvelling. And it kept charging onwards, setting a pattern that the Toddles perfected. Egg, kiwi, trees, squashes, drugs, animals, go go go go. And on. And on. Immunological funky, in retrospect, seems rather lighthearted as descriptions go. Out of fucking control seems more apt.

On the other hand, I was in the HitWGC bubble. So, I didn't have to offer more than funky to explain Chez Imperfection. Though my ticket in had the wrong name on it, we were definitely in the right place. I was sitting next to mothers who knew what it was like to love a child that is at risk, to hate Johnson & Johnson ads, who understood the sense of isolation that can arise, and the joy that crashes down when someone refuses to step back from you. They understood what it was like to have your world turned upside down, and to discover that your new career was as MD-mama, or in my case, Martha-MD-mama. And be pissed about it.

And they understood well the glory and cockiness that comes with discovering that you kind of like knowing that you can kick a little medical ass. Whoot whoot, y'all.

So, there we were. The Man and I dropped our emotional protections and let go. We talked to others, we talked to each other - such rawness should have left me like emotional roadkill, but I came home feeling at peace.

It's okay by me if my psyche sometimes needs to shove my nose in what I'm most afraid of. I don't have the naivete - or the arrogance - that would tell me that children don't die. They do. I know exactly how big a child's coffin is, and how long it takes to shovel it in. So, I'll face up to that once in a while. And when I'm done, I'll take a deep breath and step away. Knowing me, I'll probably crack some sort of slightly inappropriate joke.

It's humbling to admit that my balance depends on me doing this. I'd like to think that I have more grace or more stability than the woman who needs to look through that particular window. But I seem to need the honesty that comes with that look at the rawest truths of my fears, and questioning them. Am I truly afraid of this risk, in particular? Or am I just having a scared-mama moment?

Balance in a shifting world depends on understanding your footing. And if the HitWGC folks offer to hold my hand while I peek under my feet, well, I'll take the help and be grateful for it. And then I'll go home to sandy, muddy children who greet me calmly. I've come back, I told the Toddles. Yes, he agreed. And I saw a waterfall.

I hugged him. I didn't, I admitted. Want to tell me about it? He did, and I felt the ground underneath me steadying, layering on texture and strength. Yes. When the Eldest wandered over, I was ready.

So, I said to him, how do you feel about tightropes? juggling? trapezes? Fascinated, the Eldest's eyes rounded, and then his shoulders pulled in. I don't want to be high up, he whispered. I don't want to fall. I hugged him. You don't have to, if you don't want to. And they will have a harness to keep you safe. But if you want to try it, there's a circus camp in town, I told him, and you would make a great clown...

..and maybe get some practice with balance of his own.

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One of the highlights of the weekend was the comfort food: grilled cheese sandwiches and tomato soup, coffee AND hot cocoa AND danishes AND fruit AND gummy worms. Ice cream was served at every meal, excepting breakfast, with all of the toppings I could imagine. Tough times require loving food, say the HitWGC people, and I'd agree.

Here is one of our Imperfect comfort foods, newly reinvented as gluten-free, dairy and egg free:

Corn Fritters o' Love
serves 3-4

1 c. chickpea flour
1/3-1/2 c. flaxmeal, added until batter is appropriately thick and sticky (this one is trial and error, people. Sorry. But think of pancake batter: too thin vs. a thick cake batter)
1 pinch baking soda
1/2 tsp salt
1 pinch cayenne
corn kernels cut from 2 ears of corn (or an equivalent amount of canned corn)
1/4 c. diced red onion or scallion
1/2 c. water

optional but really recommended: 2 Tb chopped parsley, 1/2 tsp cumin seeds

Stir all ingredients together. Drop soup spoonfuls into hot vegetable oil, very very carefully. Fry on medium or medium-low (depending on the size of your burner), roughly 3 minutes per side.

Drain on paper towels.