Thursday, February 01, 2007

standing still

In case anyone is wondering, the By George bread works amazingly well as a bready tart crust for our Heavenly Onions, Oh! onion tart (much rewritten from a NY Times recipe). Increase the sugar to 1/3rd, decrease the yeast to 2 tsp, and only let it have the in-oven rise, then shape it gently against the sides and bottom of a greased springform pan. Bake the crust in the oven at 400, for 20 minutes.

Meanwhile, saute four sliced onions in olive oil until browning. Add about a half cup to a cup of soy/dairy milk, and 2 tsp fresh thyme, salt and pepper. Pour onions into the baked crust. Bake again, until warmed through (10? 15 minutes?).

But this is entirely besides the point.

Sigh. Right now, my life exhausts me. And where *is* that cabana boy with that backrub?

The days slide up and down the emotional scale, from 'just cleaning it up, Mum' where I glow at the Eldest's sense of responsibility to the horror when I see that he is, in fact, cleaning up a shattered glass bowl. Maybe too much sense of responsibility, eh?

Mostly, however, it feels like we're standing still.

After years of caution, we retested the Eldest for his milder allergens: beef, lentils, chickpeas, green peas - with some other legumes tossed in for good measure. He obligingly raised hives to all of his known allergens, but declined to react to the other legumes. The tech doing the skin testing was content. I was irked beyond measure. All of that care, all of that energy and time and still, still? he's allergic?

Apparently, when I said (over and over and over and over) that I wasn't letting myself be hopeful, I lied.

After over two years of training, we're still calling in the home care nurses to help with clotting factor infusions. They come, reassure us that our kid has tough veins, that the veins disappear with cold, flatten with viruses, become unusable under bruises - it really doesn't matter *how* true this all may be, the bottom line is that it's been over two years, and we're still calling the nurses for help. And staying home for hours, waiting for them, rearranging our schedules and awarenesses around the idea of hemophilia. Bah, humbug.

We're standing, frozen, waiting for the pluralist school to make a choice. But they sent a letter warning us and other prospective families that they had so many children that a lottery system was going to be used. Damnit. I was counting on merit. After all, the kid oozes merit, he's a walking object lesson in community building, he's a frigging heroic sweetie who also happens to be a smart, interesting person.

We needed that merit. Especially since we're obviously no good at luck. One in ten thousand? bang, that's us. One in thirty thousand? We can do that for ya. Eight out of a hundred? Yup, we're there. Twice. This past spring, three families entered a lottery that would send two families to a hemophilia conference. We, of course, were one of the three - and we lost. Yup, not so good on the lucky thing. Depending, of course, on how you define 'luck'...

And don't even begin to ask me to describe the battle royal that has begun over back-up schools. Suffice to say that I'm filling out a lot of forms, for a lot of schools. Once we know what the true options are, rather than the preferences, we'll figure this out.

While the question of luck is debated at home, in the hemophilia clinic, we're arguing over what constitutes normalcy. What is normal for a kid like the Eldest? Is our goal to protect him against joint and head bleeds? Against muscle bleeds? Should we write off a certain number of bleeds as part of the development of this child, and if so, when do we cross the line from normal breakthrough bleeding into bleeding that requires action? Eventually, the dust will settle there, too. Preferably with a prophylactic treatment regimen that satisfies me (note: 'me,' not the doctors who might be watching the price tag, not the insurance company which is busy recoiling in horror at our current costs. Screw 'em - I want my kid to be able to fall down. A lot.)

And in the library, we debate the question of what is safe for a child with allergies to the most common ingredients in American food: corn and wheat.

Today, the Toddles zipped over and grabbed a pretzel stick that another child had left lying around. He looked at it admiringly, and stuck it in his mouth just as I launched myself at him. (The upside to watching bits of the Super Bowl - it was a good tackle.) He's sleeping peacefully now, full to the gills with Benadryl, but do we go back to the library? Do we ask to have snacks banned? Do I watch him like a hawk and hope that I'm able to catch him next time?

This is the kind of allergy moment that stops you in your tracks. On the way home, I found myself breathing and mentally counting the breaths. Wshoo (one), whooof (two), wshooo (three)....I am calm, I am relaxed, I am zen....

the hell with zen. I want chocolate.

Again, this is all besides the point - as far as the boys are concerned. The Toddles is more interested in his new favorite word, 'buck-cue.' Which, of course, means 'buckle.'

He's pretty good at this one: the buckles on his high chair, his car seat, even the clips on his mittens - yes, these are all buckles. But when he pointed at the childgate and explained that it, too, was a buckkoo, I had to pause. Because he is kind of right.

The Eldest, on the other hand, is loving the Magic Tree House books (volume 14 was cracked tonight) and music. I watched him tonight, dancing to 'In the Mood.' he was loving the jazz, swinging his arms and grinning with joy.

And that is the point.

For those of you who don't like to stand still, I found this over email: Baby Busts a Move


dykewife said...

i'll keep thinking good thoughts and sending them your way. your life is certainly filled with interesting challenges. yeah, and i did think that i preferred it be you who had them than me. i'm nasty that way.

as to the library, perhaps wait a bit with the little one until he doesn't stick any and all food into his mouth. or you could do a quick walk through while holding him to see if there's anything untoward on the floor and then let him loose on the world.

mother in israel said...

Tough decisions. I think a school lottery is a copout; they must be really afraid of the fallout.

joy said...

"I Have A Move and I Have Come to Bust It" indeed. Hilarious article, thank you. I want them to do that here!

Otherwise, I got nuthin' but love and chocolates for you.

S. said...

Thanks for the comment on my blog. We had a positive celiac screen last year, and from my limited research I can only imagine how difficult it is to deal with a wheat and corn allergy.

My dd loves magic tree house, too...I am partial to Junie B. Jones right now.

Good luck with the school situation...its always something with kids!

mama o' the matrices said...

what recommendations came with the positive screen? Did you need to remove all gluten?

curious over here.

And yes, it *is* always something!