hidden in the silence

(talk, talk, talk, chatter grownup chatter, talk, talk asthma chest wall x-ray? data points blah yadda yadda talk)

The Eldest sat, silent. Smiled briefly and embarrassedly at me, signed for me to talk.

(talk, talk, talk, yadda grownups talking hey, kid, do you want to add anything blah blah talk)

The room fell silent. We all waited, the chatter done - and the kid still sat, silent. Shook his head. No, he wasn't going to try the inhaler.

And then we were still. Nothing happens without the Eldest's agreement - nothing. His silence wrapped around him, his back curving gently while his face was calm. Certain.

No.

I looked at him, but the doc spoke first. Quietly, almost delicately, what are you worried about? And wise, he waited for an answer.

1, 2, 3, 4, 5, 6, 7, 8, 9, 10 - at 16, the Eldest spoke. I'm not worried about anything.

I am, I said. I don't want to do the wrong thing, and I'm using my worry to help me figure out what the right thing is. Worrying is smart - it means that you are thinking about the risks and the good stuff that can come with any decision.

The Eldest didn't look at me, and looked instead at the doc. Turned away from my flood of words to the still-quiet Dr. Allergy, and considered. Then spoke. He told us about what the tightness in his chest felt like, how he'd run and run and run, which would help. But then it would come back, maybe a little better? than before the running? It happened fairly often, he said.

Still quiet, Dr. Allergy nodded.

The Eldest glanced at me, but I pretended to be busy writing something, afraid to stop this flow of words. He kept talking. The doc stayed quiet, but began to smile, proud of the kid, delighted for the kid.

Do you know what adrenaline is? the doc asked, eventually. The Eldest shook his head. Adrenaline is what's in your EpiPens, Dr. Allergy explained. And it's something that we use, sometimes, to help kids with asthma. By running, you were getting your body to release exactly what would help you feel better.

The Eldest thought this over, considering pride. Feeling out a sense of empowerment, testing it to see if power could be his in that moment of breathlessness and denial. He smiled hesitantly. Dr. Allergy smiled back. Good work, kiddo, he said.

Sadness and pride fissured through my core, my head down. This was their moment, the Eldest and his doctor, and I tucked myself into a corner. Grieved for the burden he'd carried, glowed for the kid and the team we'd assembled. And waited.

The Eldest looked Dr. Allergy in the eye, and nodded agreement. He'd try the inhaler.

After a tight-strung pause, the grownups went back to their chatter, but now? now we talked with him.

This is what your body can do. This is how we can help.

two days later...

HOW COULD YOU have SENT me into that room FULL OF POLLEN?

the kid had passed scream, and was settling confidently into screech.

are you trying to KILL me? You KNOW that I'm AL-LER-GIC! to that stuff!

The next day, he'd go outside to ride his bike, and come home with hives crawling up the backs of his hands. But he wasn't waiting for the hives to fracture into slivers of scared, paradigm-rebuilding boy. I rolled my shoulders, and tried to mentally adjust his volume.

Nothing doing.

He curled up on the futon, and started crying. I curled in with him, shoving aside the half hour of poisonously nasty kid, layering on the insults with admirable skill. Wrapped an arm around him, and pulled him in close. Squished him a little, while he considered melting - and did.

Boneless in my arms, he let the comfort seep in. I did too, remembering the Toddles' fear of feathers, and the way that the 'dangerous' and 'annoying' allergy categories can bleed together, when you are small. It's a tough line to draw, and a tougher one to install deep below the thinking part of yourself, somewhere in what we might call blind faith. The annoying allergies have to be dismissable for the boys to function. If they aren't, the kids carry fear with them through their day. Will I stop breathing now? they'd wonder. What about now? Is that scratchy throat a sign that it's coming - the big scary allergy thing is going to happen - now? You can't swing a bat if you are waiting for the sky to fall. Can't thread your way through the social labyrinths if the Minotaur is about to pounce.

You know what, kid? I think we need to rethink what we mean by 'annoying.' Because this is really kind of beyond annoying - definitely deep into the seriously irritating.

It was a feeble attempt, but I stopped, waiting for him to choose. He held himself absolutely still, standing in the middle of his fears, the paralysis of his awareness of risk. Outside of that web, he saw me standing with a stray snail's shell in my pocket, lifting leaves to peek underneath, finding rocks to climb over and the ponds where we've hunted for frogs and freshwater snails. Rotting logs, rich with bugs - and the occasional snacking bird. More importantly, he saw his friends weaving through a muddle of playgrounds, basketball hoops, burbling over and around each other, grubby and loud with boyness. He looked. We looked back, waiting, knowing the difference between suspense and a quiet - pause -

He tilted his head. Really, REALLY irritating, Mom.

welcoming (back) normalcy

I'm so tired that the world is blurring in front of my eyes. But we're home.

Everybody overreacted in creating today - almost. The ORL (ear, nose and throat) people could have done this procedure in the office, and without general anasthesia. Almost. The pre-op people could have avoided hauling us in for hours, just in case we needed a bed. Almost. The hematologists could have followed standard procedure on this. Almost.

But let's start with the Eldest. I spent an absurd amount of time choosing his clothes last night, looking for the outfit that would say 'take extra good care of me, I'm a wonderful kid.' Are you surprised that I couldn't find that outfit? I settled on a t-shirt from Mary Jr and the Toddles' favorite kipa. On the way to the hospital, we listened to a CD from the Nome and told stories about when Saba and Savta had their noses cauterized, and generally did our best to surround the child with signs of love and family. Over and over, I missed the bright mischief of the Toddles, happily spending a standard Thursday with Mary Jr's predecessor. But the Eldest bloomed under our focussed attention. Deep in a game of Cover Your Tracks (thanks to his grandma and grandpa), he was laughing and groaning and just plain happy.

Truly, the child had a splendid day. Yes, he spent it in the hospital, preparing for - and then recovering from - a procedure and anasthesia, but he was praised, petted and juggled for (yay for the Big Apple circus clowns, who stopped into the pre-op unit!), and told many very very bad jokes. By me, of course. He showed the anasthesiologist where to put his IV, and tried to persuade her to let him keep an IV kit. To practice at home, he explained. He pushed his own meds through the line, and quizzed the clowns on their magic tricks. And then he fell asleep.

The Eldest woke up from anasthesia smelling funky, with bad breath and sweaty hair sticking straight up - except where it was glued to his ear. He then proceeded to down two gigantic apple juices, watch a ball game and ask if he could keep his hospital jammies. He did.


On his way out of the post-anasthesia unit, the Eldest stopped. Excuse me, he said to the nurse, but do you think we could do the other side now? She looked puzzled. You are done, honey, she told him. You can go home now! You did a great job. But the Eldest was determined. Please, he said, couldn't we do the other side of the nose today? I'm having so much fun, and I don't want to go home!

We all grinned at the kid with his too-big yellow hospital socks (my flippers!), wearing his slicker over his johnny and hospital pants. Talk about adaptation, people. Talk about finding the joys in the situation, and holding on. Go, Eldest, go.

But first, go home. Where, by the way, the Eldest recruited the Toddles, and the two of them anesthetized and then cauterized the nasal passages of all available adults. Including Auntie A, who stopped by for a visit. Over shabbat, I shall put her and magid into the same room and interrogate them: are they taking shifts? Their timing is uncanny.

So, what's all the fuss about? Turns out that the Eldest had an exposed vein running the width and height of his nostril. That exposed vein (think an 'L' shape) split from top to bottom. The ORL doc applied some precise chemicals to the spot, and voila! with some luck, that will do the trick. I had initially resented having to dose the kid for an in-office procedure that failed to come off, and THEN spend the day having meetings so that we could come back the following day, and dose him again for the real deal. But.

Given the aggressive dosing and redosing, the Eldest ended up with well over 100% clotting medicine pushed into him at the time of the procedure. Which is good, because 1.5 hours later, he had well under half that. So, he had a half-life (used half of the drug available to him) in about 90 minutes. Not 6-8 hours: ninety minutes. This may explain some things, like why the bleeding failed to stop earlier in the cycle, when it was far less persistent and the tissues less damaged. And why increasing the factor was not as effective as it should have been.

In other words, Lois, you might almost be right. The Eldest lives in an immunological state of hyperactivity, as our allergists will (ruefully) tell us. He typically has had an unmeasurable level of antibodies to his clotting medication, which increase the speed at which his clotting levels drop. In January, we got the first normal test results that we'd had in years, and we celebrated. Don't read too much into one test result, my dad warned me tonight - and he's right. But the test result that we may have over-read is probably the one in January, the result that promised greater stability in managing the Eldest's bleeding.

Normalcy, a la Eldest, is more likely the rather hyperactive immunological response that has him burning through his clotting meds. Which is irritating but familiar - we know how that reality works, and it's not too bad. It's one more dose of clotting factor when he has a bleed, and a bit more aggression at the early hours of a bleed. I'll take it over true inhibitors (antibodies) any day. Still, we sat in the helpfully reserved bed for a while, as hematology grappled with this a bit.
So much for normal - welcome back, normal.
**************************
P.S. I walked out of the ORL office yesterday with a deep appreciation for the varieties of human idiocy. The ORL folks have, for years, collected the odder items they've plucked out of throats, ears and noses. I was quietly glad to see that, once again, the Eldest has managed to acquire a doctor (or doctors) with a sense of the absurd. Nothing is impossible - just go see the display.

ripples underfoot

I opened the door to our apartment today, and paused to check for floor under my feet. Yep, still there. And yet, today I found myself feeling uncertain, and looking at my world and seeing it unexpectedly altered.

I took the Eldest to his camp this morning, and watched him trot off. 'Bye, hon, I said, and he grinned at me before vanishing. See you later, I said to the grand duchess. You know how to reach me if something happens. She looked up, briefly startled. I smiled. But nothing will, I said, and vanished myself.

Walking out with me, another mother - a friend - sighed. You're so brave, she said. How can you be so calm? I blinked. Was I missing something? Was there a reason not to be calm? A bit worried, I walked to my car, rummaging through my various views of the camp and personnel, trying to find something to worry about.

I drove off, papers and photos in hand, ready to do my Eldest 101 presentation to the next summer program that we'd chosen, a local organic farm. I'd had a wonderful talk and emails with the director, and happily anticipated that the Eldest would spend hours there digging and learning, and come home caked with filth. Perfection. All we had to do was to sort out the various safety measures: educating the staff, setting up the various medical whatnots, and working out a plan of action, in case of emergency.

I drove up, admired the plants for sale, and found the director. Okay, folks, he called. It's time for The Meeting! He gathered up a sheaf of paper and waved me to a conference room. Having caught the capital letters, I was turning them over in my head. That's odd, I thought, and watched the stiff body language of the people coming into the room. Oh, dear.

I pulled out photos of the Eldest, trying to break the ice by showing them the child behind the diagnoses, but I just can't look at those, said the director, thumbing through the Eldest's medical documents. Realizing that the diagnoses were looming larger than the child himself, I tidied the photos away, and settled into my chair. Okay, I said. What shall we talk about?

I spent the next couple of hours listening to their concerns, noting the legal language that silently admitted to the depth of their anxieties, and trying to look as sensible and calm as possible. Kids get scraped up here, they told me earnestly. They get poison ivy and ticks and cut themselves, they begged. I nodded calmly and waited for the punch line. Finally, I'm just not sure he'll be safe, the director told me. If he were my kid, I wouldn't send him here, he said, tapping the Eldest's IHP (Individual Health Plan). Ah.

I'd heard that line before, from the Eldest's preschool when I asked about the possibility of enrolling the Toddles. I believed it then, but this was different. I started talking. I explained about prophylaxis, and how it provides a preventative cushion. I explained that boys being boys, and how we couldn't and wouldn't stop the Eldest from being normal. Instead, I said, we work within a framework of safety: acceptable risks plus medical backup, plus emergency plans (rarely used). And I promised them, over and over, that scrapes would be just fine. Every kid gets scraped up, even mine.

The director looked thoughtful, and the assistant director looked pragmatic. Okay, she said, so the allergies aren't so different from any other child with allergies. There's more of them, but it's the same procedure. And the bleeding means that we carry an icepack for him and call you if he gets hurt. Essentially, she had it. I passed her a handout describing minor, moderate and major bleeds, and showed her the different responses for each. She nodded, and we all looked at the brooding camp director. I can sign a waiver, if you like, I offered. Saying that if you follow normal safety protocols plus follow the IHP, I won't hold you liable. I watched his shoulders relax. Okay, he said slowly. C'mon. I'll take you on a tour of the farm. And off we went.

Over the course of the walk, I was shown exposed sticks and unsanded plywood, and promised that I was untroubled by them. he could scrape himself, I was warned. And so he might! But it won't hurt him - a scratch isn't going to do much damage, I laughed. And if it does, he'll tell you. The director looked over at me, thinking hard. I grinned. I know, I admitted, the kid is six and I'm telling you to trust him. But he knows his body better than we do...and so the walk went. All in all, the farm was beautiful: lush green stuff growing in tidy strips, a pond rich with water lilies, laughing field crews and well cared-for machinery. I liked what I saw, and I found myself liking the director. His fears were, I thought, pretty healthy. All we had to do now was see if he could settle down.

I worked to balance smiles with pragmatism and honesty during that walk, and finally looked the director in the eye. I wouldn't choose to send my child into something that I thought was too dangerous for him, I said. The director thought this over. I can see that you want him to be normal, he said. I respect that. And I think I believe you.

So. I drove home, feeling like I'd seen my life from a different angle, suddenly presented from a perspective about three feet from where I sit. Is the ground under my feet? I think so. But then again, I suppose that I'm never wholly settled. Tonight, in the tub, the Eldest complained when I washed his hair. My head hurts, he said, pointing to the spot where he'd whacked his skull. Oh, I said, and felt a ripple under my toes.

making it better (with breaded fish and chicken nuggets)

We have a rule in our house: whether you are directly or indirectly responsible for another family member's discomfort, you have to make it better. (Note the 'indirectly' bit - this is my out for determining clear guilt. Neat, no?) With the Toddles currently deep into the strike-and-run phase (clarification: only where his brother and I are concerned, oddly), we're doing a lot of this.

On Friday, the Eldest and the Toddles were doing a highly modified sort of tango. With one, larger sib steering the other, banged elbows and bits were bound to happen. Still, I had one pot bubbling and three loaves of bread coming out of the oven, so I figured it was their lookout. Five bouncy, happy minutes into the dance, there was wailing.

[one sibling holding an ear and wailing incoherently]
Eldest: I didn't do it!
mama: Doesn't matter if you did - you two were playing a game and now he's hurt. So, you help make it better.
Eldest, assessing his chances of a quick getaway to Rio: Oh. [to sib] I'm sorry. How can I help make you feel better?
Toddles, snuffling: You can make me un-sad.
Eldest thinks briefly, then picks up one Toddle foot. Kisses it.
Eldest: Did that help? [kisses the other foot] How about that?

By then, both kids were grinning, and I left them to it.
******************
Making it better is the current Imperfect family theme. The faucet breaks? We make it better. The oven breaks? Mama is ruthlessly polite at people until it is better. The mattresses are teeming with dust mites? We'll make it better. Your eyes are itchy and infected? We'll make it better - if you hold still long enough.

So, let's see how we're doing.
lice: done. There's a Miltonesque hell for lice, although I feel badly about slapping Milton with this. Maybe a limerickish hell? But then, that's rude to the Irish. Anyway, they're toasting over there. (And no, Jews don't quite believe in that sort of hell, but I'm absolutely willing to make an exception for lice.)
conjunctivitis: banished (although I do worry every time I rub an eye). The Eldest and I are now experts in the squirting of goop into eye. Huzzah.
nasty cold: gone. Took hacking cough with it. Am now able to actually laugh at jokes without clutching chest and wheezing. Took 11 days to recover.
faucet: replaced and repaired. Only took 16 days.
oven: door replaced, oven available for use. Took 10 days.
dust mites: attacked and permanently on-going. To date, we have made lists, three-stage plans, discovered the lack of wood under the carpets, quailed, panicked, had grandmaternal riding to the rescue, replaced the mattresses (11.6 years old), covered all mattresses, boxsprings, pillows, washed innumerable blankets and sheets, reduced clutter, vaccumed more than should be legally allowed, washed drapes/stuffed animals/throw pillows in extra, extra hot water. Took 15 days. Identified couch as instant snot-maker, washed throw pillows and cover to seat cushions, watched in horror as orange crumbly stuff poured out of seat cushion covers, Toddles immediately rubbed snot into his eye. Called disposal company and held memorial service for couch.
The Eldest responded by having his long-standing, itchy, revoltingly bloody and scabby, alligatorish eczema nearly disappear. Certainly, he is not scratching in his sleep any more, nor is he waking himself up when he draws blood. The Toddles, not to be left out, riposted by eliminating his perennially stuffy nose. Satisfied by the maternal applause, he graciously provided an encore, and slept through the night.

pause.

He slept through the night. The whole night.

To clarify: neither child sleeps through the night. The Eldest wakes up at least once, and the Toddles wakes up 3+ times per night. Sleep training is useless, I was informed by the illustrious Elizabeth Pantley, when a child is ill. If the boys have been having allergic reactions to their beds (beds!), well, that would explain our various (and half-hearted) failures. Well, well, well. The Man and I are walking around in a kind of awe.

Irked by our state of affairs, the universe riposted by having me lose something I've had and loved for years. I growled, and plowed forward. Weakly, the universe tried again - but when the back of my ancient desk chair fell off, well, what's a mama to do but laugh? The universe can do as it wishes - we are deep in the ramifications of better, such as we have not seen in lo these many nights...
****************************
Save Daddy Firsts; A Breaded Fish/Chicken

we made the fish variant on the day that things indeed did start to get better. This was a very fast and delicious fish, which satisfied all of my cravings for something quick and breaded. It disappeared so fast that I was forced to sternly require my children (and myself) to save the Man firsts. Although I was inclined to think that, as he was late for dinner, perhaps he'd foregone his seconds? He didn't think so.

• fillets of tilapia or another mild fish like flounder (I used fresh - if you use frozen, fully thaw and then pat the fish dry)
• chickpea flour
• salt, pepper to taste
• various chopped herbs (I used rosemary and thyme) OR spices (garlic, paprika and chili powder are nice together) OR both! Have fun.
• olive oil or vegetable oil for frying

Mix herbs, salt, pepper and chickpea flour together. Dredge fish in the flour mixture, coating well.

In the pan (I used a nonstick pan, and therefore needed about 2 Tb oil per batch), heat oil. Lay fish in the pan, taking care not to overlap pieces. Fry fish until browning, then flip. Fish should take about 5 minutes on the first side, and about 4 minutes on the second, but this time is highly dependant on the size of your flame.

Eat!
Chicken version:
this is essentially the same recipe, except that you slice boneless chicken breasts into strips or nuggets, and will need more oil and a higher sided pan (the oil foams a bit). The cooking time will take a bit longer as well, as the chicken is usually thicker than the fish.

Dredge the chicken in the flour/spice/herb? mixture, and heat oil in a wok or other high-sided pan. Slide floured chicken into hot oil. Be careful! Allow to brown on each side, then remove and let drain on a paper towel-covered plate.

Suggested accompaniment: we had plain rice, a dish of green beans and a bright, lovely salad, for which I tried soaking thinly sliced lemons in water and kosher salt. (Note: as suggested by the Boston Globe.) Ten minutes of soaking later, the lemon slices were mild and edible. Tossed with redleaf lettuce, watercress, radicchio, red onion and olive oil, they made a wonderful, colorful salad.

Got leftover spiced flour? Try adding baking powder, some flaxmeal and rice/soy milk. Stir together into a rather thick batter and drop a quarter cupfuls (or less) into the frying oil to make pancakes. I sprinkled ground cumin and ground coriander into my pancakes, and called them felafel. Hmmm. Add some fresh parsley and it could almost be so!

crawling creature, shuddering mama

Things are crawling at my house.


Yep, the reason that the Eldest's hair is standing on end (not to mention mine) is that he thoughtfully brought home lice. Lots and lots of lice. His father, veteran of many a buggy menagerie, kissed his loving wife and went off to get his head shaved. Meanwhile, a horrified mama tried to get the Eldest to stop scratching long enough to get shampooed and combed. Hours later, she was still combing and he was still scratching. When asked by his exasperated mama why, oh WHY didn't he mention it if his head was itchy, he simply said, but Mum, I'm always itchy.


Which, alas, is true.

On the other hand, as we learned at Whatsisname's clinic, there may be a simple reason for that itchiness: things that crawl. In this case, dust mites. Both boys are, apparently, quite allergic to dust mites - allergic to an extent that startled our famous doctorish person, and offered us a key that may unravel a couple of puzzles:

* the Toddles' reaction to fish has been...runny nose, allergy shiners, eczema.

* the Eldest's endless eczema is caused by...??? Hm.

* the Toddles' reaction to soy has been...runny nose, allergy shiners, eczema.

* the Toddles reaction to other people's homes, some group gatherings (but not all) has been...runny nose, allergy shiners, eczema. Oh, and have I mentioned that eczema is hell on sleep? Yep.

Which leads us to wonder. If we can control the dust mites, will the Toddles be able to eat trout and tuna? soy? Will the Eldest stop his endless scratching? Will both boys sleep at night? The allergist had a range of suggestions for us, from foods we could challenge (oats!! poppy! green peas, lima beans) to foods we should skin test (tree nuts - the Toddles, lentil, mango, zucchini, pumpkin) and if negative, challenge. It's quite a list of possibilities, and we're freely committing the sin of hope.

But not in front of the children.

In the meantime, it turns out that the initial cleaning for dust mites is remarkably similar to lice, and the washing machine hums (and occasionally whines) endlessly. Much, I must admit, like our buzzing parental brains.

Oh my, oh my.

and the trees went down..

When three hickory trees fall in the middle of a town, does anyone picket?

Apparently, they do - electronically, that is. Recently, I wrote this about a town's decision to allow a family to remove three hickory trees. The topic has now been rechewed by Slate.com's own Emily Bazelton, here. Emily is, as you can tell from the picture, distressed because her son's chosen snack was denied twice, for potential nut/peanut content. Once is an accident, twice is kinda careless, no?

Following her editor's instruction to be controversial, Emily has sparked the 'is my kid more important than you kid' debate, using her undernourished child as the vehicle, while handily tossing out the old 'overprotective parent' line, to undercut the credentials of the allergy mom or dad. Or the school board, who presumably made the rules that she finds so onerous. Oh, Em. How unoriginal of you.

Yes, your child is less important than mine. Is that what you wanted to hear? Yes, I am a mean mama, over protecting my kid and unnecessarily restricting his diet - and your kid's diet, all in one swell foop. Better now?

Oh, and by the bye, Emily, you forgot one crucial thing: allergies are not static. With each exposure, a child's allergy can ramp up, until even a hitherto mild allergy can become a life-threatening one. So what risk, exactly, would you be willing to take if you were in my shoes?

In my not so humble opinion, Emily has succeeded. She's provoking, all right. And yes, she raises a real problem. But more than that, she proves that among the virtues she's teaching her child, mindfulness and respect for the needs of others is not so much a focus. Read the damned labels, Emily. Teach your kid to be a mensch.

Trust me, that lesson has much more value than 'but I wanna eat that for snack!' As any allergy parent knows, sometimes food has less value than a human being.

******************
Dinner tonight: nothing! It's the ninth of Av, a fast day. The boys, however, feasted on leftovers.
******************
For the curious, yes, I did respond to Emily's article on slate.com's message board, aptly named The Fray. I'll give you a hint: I posted on August 3rd, at about 7 pm...and those of you who know the Eldest's other diagnosis will easily identify me.