Saturday, August 30, 2008

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.


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.


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

Monday, August 25, 2008

of shared badnesses

I've handed in my last draft (for now), and it's in the hands of the scary, scary anonymous reviewer people. So, I'm bloghopping to distract myself.

I found this kind note at DovBear, and this fascinating one at Juggling Frogs. The question of good or bad mothering is pretty near and dear, as you can imagine, mostly because when I want to wail about being an awful mum, any number of people tell me this: well, but you have so much going on, it's so hard!

This may be true, but as Carolyn points out, the wail itself is important. And, inevitable. No matter how hard we supermommies work, badness is unavoidable. Mostly, of course, because good mommydom is only partly based on our terms. My kids don't care how much I've got going on. To them, I'm operating on normal terms - we work hard to make their normal seem manageable and dull - so, say the children, why can't I get my ass in gear and oh, stop screeching? It might be hard, but they couldn't care less.

Kids are kind of ruthless that way, when you think about it. They need what they need (I'm thirsty, mum) - and they don't care if you've got the flu. You can browbeat them into accepting less (hold on a sec, kid, I'm busy), you can talk them into awareness of the other person (you look awful, Mum, can I help?), but none of this changes the basic need.

And when you have kids who need more, well that's just the deal, mom. So pony up. And so we do. But honestly, people, there are limits.

I appear to be a little tricky to talk to on the 'bad mommy' front. I tried to play the other day, and someone stopped me cold. What you do is heroic, she said, and I stared at her. She's no slouch herself as a medico-parent, and yet. Hunh? Why can't I be a bad mom, too? I took a shot: Whatever you think of what my kids demand of me, I claim the right to be as lousy as anyone else. Just the other day, I screeched bloody murder at the wee horrors for.... - and yet, end of conversation. New subject.

So, no bad mommy playtime for me. Partly because people like to pop me up on the Hero Mom pedestal (let me tell you, it's chilly up there and slightly two-dimensional), and partly because if my kids wailed over me not making it to their soccer game, I'd snort at them. It's a soccer game, I'm sorry I missed it, but there will be more. 'kay?

End up with a bleed or need me to yank soy out of the diet, and I'm there for you. Need a hug, and I'm happy to cuddle. Need any number of things that I can provide, and I will. But if you want something and it's just not going to happen, then I fully expect that we'll have a calm, caring conversation - and then you will deal, o child of mine. This isn't the smugness of a mum who has it all figured out, this is the can't be bothered-ness of a mum who knows she's only just got her nose about water. I get that, and so do my kids. Perspective is crucial. I bet Rix knows that.

Need vs want, I tell the kids. We can really want that which we don't need, and that's okay. Can't have the ice cream, can need a treat to replace it. Must trust me - and yourself - to do your best. Work with me, people.

(come to think of it, this ruthlessness may have something to do with the pedestal. Still. Brr.)

"It's just that complacency and smugness are incompatible with the authenticity and flexibility required for any important relationship," says Carolyn, and I wouldn't disagree. Thus the lack of parenting gurus in my life. Even Dr. Sears had to make it up at some point, so why not me? But I think that there's a certain degree of smugness in bad mommyhood - telling the bad mom story gives you an in to an intriguing social function: the anti-perfection patrol.

Martha bad, FlyLady good? Where do you draw the line on perfection? Individually, we can be amazingly harsh on ourselves, no matter how much we sneer at Martha. (and I'll admit here to having made one of her recipes for dinner. Yum) But watch how the discourse works in groups.

Try this. Note how the bad mom invites others to be bad, also? She creates a new normal, in which any number of relatively sane-sounding women are bad, too. It's okay to be imperfect, the women tell each other, and then reset their common denominator a few, socially sanctioned notches down from the pedestal. (again, I note: brr) This has the equivalent function of slugging back a nice cold beer - the women now relax and actually begin to talk to each other.

Bad mommying creates a connection, and sets a boundary in which more honest conversation is possible. It's a pretty good deal, when you think about it.

if you find yourself lacking in bad mommy inspiration - I, alas, am my own personal source - the parentblogger blog (say that three times fast? six times fast?) suggested this for bad mothering with trailer park style. Got to get me a copy...

The feast of comfort food continues over at Chez Imperfect, and I can feel my skirts tightening. Looks like with comfort, comes padding. Alas for the slimmer version of me, and oh, well. But mmmm. Good.

Today, we reinvented a dish of my childhood. My mum used to make this for me, I told the boys. They dumped crisp, fresh blueberries on top and chewed thoughtfully, considering the gustatory virtues of their mum's mum. Finally, the Eldest swallowed. And when is she going to come and visit? he asked, and filled his spoon. Oh, I said, working it through. So you like this dessert?

Mouth full, he nodded. Right. Gotcha, kid.

Childhood Chocolate Pudding
serves 4

1 cup gluten-free self raising flour mix (recipe from Living Without magazine, below
1/4 tsp salt
1/2 cup sugar
1 soup spoonful of cocoa/carob powder (for the Aussies and English, this is actually a dessert spoon)
2 Tb melted butter/margarine
1/2 cup soy milk/dairy milk

Mix ingredients together, and pour into a 8x8 pan. Heat oven to 375 F.

1 c brown sugar
2 soup spoonfuls (or dessert spoonfuls, for the Anglophilic) of cocoa or carob
1 and 1/2 c water

Heat and mix together until sugar has melted. Pour on top (no, really) of the batter.
Bake at 375F for approximately 45 minutes. Serve with a cold, crisp-flavored fruit, like blueberries or raspberries. Or, if you aren't dairy allergic (or vegan), serve with whipped cream.
GF self-raising flour, by Living Without magazine:
1 and 1/4 c sorghum flour
1 and 1/4 c rice flour
1/2 c tapioca flour
2 tsp xantham/guar gum
4 tsp baking powder
1/2 tsp salt

....and the Imperfectly virtuous, Martha-made-us-make-it dinner: leftover watercress, a handful of olives (although we like this also with pickles), a teaspoon of child-despised capers (see, they don't eat everything), a can of well-rinsed chickpeas, and a cookie sheet of wonderfully garlicky fresh croutons. Tossed with olive oil (4 Tb) and red wine vinegar (2 Tb). Ahh.

Oh, yes. The croutons: I cut shabbat bread/challah into bite sized chunks, tossed with about six smashed, peeled cloves of garlic, a 1/4 cup or so of olive oil, salt, coarse black pepper and 1 Tb cumin seeds. Then we baked the croutons at 425 for about 15 minutes, and finished them off with a minute or three under the broiler. Then I chased small bums out of my kitchen when they ate too many pre-dinner croutons.

bah. Eat the bad mommy's croutons, will they?

Thursday, August 21, 2008

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.


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.

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.

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.

Sunday, August 17, 2008

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.

Monday, August 11, 2008

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.


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.

Thursday, August 07, 2008

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.

Wednesday, August 06, 2008

taking a weekend off - and plunging into the week

Well, we had a true shabbat this past week, as the Eldest's nose really did take a day of rest. Heck, it took three days of rest. I was just starting to think we might be done with this nosebleed business, when I took the kid on a playdate. Naturally, he got whacked (by a foam bat) in the face. Naturally, the nose started bleeding again.

phooey. (Hey, joy - this is a moment for your internal toddler. Cue?)

On Monday, I called and sounded serious and worried at the newly returned hemophilia nurse practitioner. The NP agreed with my concern, and emailed her counterpart over at ORL (ear, nose and throat). The counterpart emailed everyone in ORL and within moments, two doctors had offered an emergency consult for 8 am this morning. Bring Amicar (secondary clotting medicine), they said. Have his factor levels high - we may just fix this in the office.

But no. We talked and debated (stop this cycle with mild methods? try and stop future cycles with aggressive methods)? and came to grips with the ORL team's absolute refusal to do the cautery in the office. No, they'll do it in the surgical suite, under general anasthesia. Sigh.

The Man looked at me. I'm just as happy not to do this, he said. A veteran of near-daily nosebleeds, I disagreed. If we can save him future such experiences, I said, I think we should. For all that it's in the OR, this is a truly minor procedure. I vote we do it. The ORL guy watched us, and waited. Finally, I just don't have the experience that you do on this subject, the Man told me and he turned to the ORL doc. Let's do it, he told the doc, and lo! wheels were set in motion.

I'm persuaded that the ORL nurse practitioner has a real future as a successful dogsbody in some military camp. Over the next hour or so, I watched her wheedle, persuade and generally sidestep anyone who should give her what she wanted, but wasn't inclined to do so immediately. We escaped briefly to take the Eldest to camp, before she called us back: the pre-op team wanted a pre-operative consult. We were in for tomorrow morning.

To gilg our lily, the Eldest managed to produce a couple of nosebleeds in the three hours it took to do the pre-op merrygoround. Bless magid, who turned up to supervise small hungry children - on zero notice! - and brought food with her. I could think of no better thank you than to feed her in return. It was a feast tonight, and now - sated - we rest. I'll pack a bag with things so fun that they are irresistably distracting to a child forbidden to eat - and tomorrow we go to the hospital to talk to the nice man with the white-hot poker (to paraphrase a nearly-funny comment).

Admittedly, I've been a little worried about the Eldest's state of mental being, but I've finally decided that the current irritability and tiredness is more physical (anemia) than psychological. True, the two feed on each other, but if we fix one, we give the other a chance to heal. I was still trying to persuade myself when I came across this image tonight, and I'm easing back on the concerned mama role. Here is the Eldest's self-portrait from the last time we spent the day in the hospital. Note the IV he's drawn on one arm, and the grin on the face.

Oh, yes. We should be just fine. But I reserve the right to worry - just a wee bit - until I see him, pokered up and sleepy.
The Night Before Pasta, or basil-artichoke pesto pasta
1 big bunch of basil, well washed and dried
4 cloves of garlic
1/3rd-1/2 cups olive oil
1/2 tsp salt
2 cans artichoke, drained
1/3rd cup sunflower seeds (or nuts!)
optional: lemon zest

Whirl garlic and zest (if using) in food processor. Add remaining ingredients, and whirl until well blended. Mix gently with freshly cooked pasta, and see if you can persuade your children to pick nasturtium flowers to set prettily on top. Mine needed little encouragement - it was rather more challenging to get them not to denude the plant entirely. (The Toddles is a touch unclear on what's an herb and what's a plain leaf)

Note: this makes a wonderfully creamy pesto, and I had some leftover for tomorrow! It'll make a great dip. But, try and balance your meal with something really light and clean, like mango-tomato salsa or a pineapple salsa.

Sunday, August 03, 2008

of gaps and grins

(wherein, if writer's hurdle extends to the blog, I shall roar)

On Friday, the Eldest changed tactics, and offered a different ENT challenge.

He's been wiggling this tooth for a while now, and we happily celebrated with him when it fell out. The added bonus of his timing (I was en route to a mammogram and was very willing to be distracted), plus the careful pleasure with which he tucked it into a pretty wooden box. The Eldest plans to keep all of his baby teeth in this box, and has chosen a safely high spot on a shelf for it. We're not a tooth fairy family, he informed me. Honestly, I didn't think we were.

Later that evening, he asked me why I was so excited about the tooth. I had to sit down to explain this one, but it came pretty easily. I know that you are getting bigger and can do more things, I said - Like five hundred and FIFTY piece puzzles! he interrupted - Yes, like those. And I know that as you grow, you move farther from being a baby towards being a small kid, then a bigger one, then a teenager, and eventually a grownup. The Eldest nodded seriously. But sometimes your body does something that reminds me that you have taken steps down that road, like this. Your baby teeth fell out, and an adult tooth will come. The Eldest offered me his newly gapping grin. It's like a reminder: you are getting bigger! And that's exciting to us.

The Eldest looked at me gently. Well, of course it's exciting, he said soothingly. And then he stuck his tongue in the gap and wiggled it.

There's a jelly-like clot sitting in that gap, but happily it's not oozing. Just sitting there. And thanks to the Eldest's latest round of nosebleeds, he's packed to the gills with ENT-friendly clotting power. The tooth has distracted him handily from the nosebleeds, although he's been showing a little bit of emotional strain - a little faster to flare, to snap and growl. Well, fair enough. Me, too.

But, since the first talk had gone so well, I thought I'd try another. After shabbat dinner, while the Man took the Toddles up to bed, the Eldest and I had a futon moment. So, I said, what d'you think about these bleeds? The Eldest stuck his tongue in his toothless spot and considered. What bleeds? I rolled my eyes at him. The nosebleeds!

Oh. Those.

We talked it through: the nosebleeds got factor, which should make a clot, right? But they also get Amicar, does he understand why? He does. So, why aren't they better? The Eldest thought this over. I don't know, he said, furrowing his brow. Why not?

Well, love, when you got that bleed in your calf, we gave you factor and ice. And we made you rest the leg, d'you remember? The Eldest nodded, remembering. We rest the leg because the healing is fragile, and takes a little time to get stronger, so that you can use the leg again safely. But can you rest a nose? The Eldest looked surprised. No, he exclaimed. You can't! I grinned at him. Nope. Can't put a nose up on a pillow, can't stop using it, can't really rest it. I mimed popping a nose off and putting it on a cushion. Ah, well, I said, shaking my head sadly. Guess that won't do.

The Eldest went off to brush his teeth, limp with laughter. You can't put it on a pillow, he told the Man, and burst into giggles. The Man, an old hand at recognizing my handiwork, patted the giggling child and steered him towards bed.

So. The old anticlimax holds steady, then, eh? Drama, resolution, laughter and off to the next patch of road. What's next? The Toddles had a suggestion:

I have a wiggily toof, too! shouted the Toddles, bouncing up to be admired. Oh, says the Eldest solemnly. Really? Let me see. One examination later, the Eldest looked up at me. Don't worry, Mum, he said, that tooth's got a ways to go. Ah.