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.

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

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.

shhhh - experiments in progress

If you are around this weekend, don't bother stopping by - we're out of town.

Okay, so the kids are going to be home, but the Man and I will be a whole two hours away. All weekend. Yes, we just got home from the hospital, and yes, everybody's still recovering from the four weeks of nosebleeds that sent us there, and yet. We're leaving the kids, and bugging out. All the way to Connecticut. Got to be done.

(okay, can I say now that I'm scared a little spitless?)

We've never left the kids before. On our tenth anniversary, the Man and I barely considered the idea of a solo vacation before booking a cabin that could sleep four. (barely) How could we leave them? Leaving a child with a bleeding disorder (nevermind allergies, that's another post) means you need to train the person who looks after them, teach them when to worry, when to take the first measures, when to call in the cavalry. That caregiver has to have nerves of steel, and an impeccable poker face. They need to be able to ask the kid why he's limping, without giving away anything roiling on the inside. It takes real courage to accept that an emergency is happening in front of you, and *you* are the one who has to deal with it - denial is not an option.

So, nerves of steel. And a handy person with a needle wouldn't hurt, either, since that's how the Eldest gets his clotting meds - but hey, we're spoiled. There's a home care nursing service around here, so needles are optional. But training? can't get around it.

Training, alas, means translating. It means walking a person through the broad strokes of the disorder (moderate vs minor vs go to the ER now bleeding), which is easy. It also means walking a person through the labrythine processes of my brain. Less easy.

worry here, watch there, keep an eye on that - the kid tends to fib here because he hates to stop playing. This type of bleed tends to stop and start, don't let it slip past you, and there's that knee that - and remember these three volumes of his medical history. Can't assume the docs will remember the specifics, especially the Eldest's funky immunology...and have you engraved my cell number on the inside of your skull yet? You will.

Training is really code for translation. Welcome to our reality, says the training. I'm now going to be irrepressible calm and pragmatic as I walk you through it, and I'll make jokes to show you just how manageable this all can be. Ha ha ha. Well yes, I'm glossing slightly to stave off the chance that you'll scoot out the door. Pardon me while I flash all of my coffee-stained teeth. Yes, I think that's a smile. It's not? Dang. Translation is hard. And time consuming.

My parents live three hours away. The Man's parents live 5+ hours away. Initially, this was kind of isolating for us - the boys' various diagnoses mean that we live a life foreign to the rest of my family. The geographic distance between us keeps that foreignness alive: my father cannot imagine a world in which he would stick a needle into his grandson. I can imagine a world in which my husband and I poke our firstborn with many, many needles. While, mind you, the kid grins at us. Takes some explaining to make people understand that. Takes some showing, also, to persuade folks that this grinning kid isn't actually martyred - he's just living a different kind of normal. And let me tell you, all of that showing and explaining and translating gets wearing.

But time passes. We visit, they visit, and over time the translation has become less needed. Some people got it faster than others, some are still scratching their heads a bit. But we're getting there. So, I took a chance: months ago, I called my parents.

We'd like to go to a conference in August, I told them. Can you babysit?
Yes, of course, said my slightly offended parents. We have been waiting for you to ask.

Um.

I hauled them in for a weekend, and grilled them. What would you do here? When would you go to the ER? Call for an infusion? I kept a suspicious eye on my skeptical father, always ready to tell me I'm being neurotic. Which I often am. But this weekend, I told him firmly, he has to adopt my neuroses. My kid, my rules, I told him. Meekly, he nodded.

Will my parents be sufficiently paranoid? Will they be sufficiently calm? Will they toe the line of safety vs acceptable risk that the Man and I have slowly, painstakingly marked out for our family? Will the Toddles escape and manage to finally set the house on fire? And did I mention that we live in a floodplain? Yep, I'm nervous. I'm really, really nervous.

But I'm going to pack anyway.