Saturday, September 30, 2006

two grumpy stories

Clinic on Friday.

It may surprise some of you that I was content to sit for two hours, waiting until our beloved allergist. It's because I know him, I know how he spends much more time than he can afford with his patients and their families - and that's so very valuable to me, when he does it. And so I sat, and waited our turn.

When he came in , we reviewed the possibility of corn and spelt allergy in the babes, chatted briefly, then got sent off for a blood draw. I can't begin to tell you how frustrated I am with myself over what happened next, but perhaps telling the story will exorcise it a little.

The phlebotanist we got was young, smiled at the babes, then was all business. I sat with the babes in my lap, and as the phlebotanist was tying the tourniquet around the babes' arm, I realized that the binky (pacifier) was across the room, in my bag. 'Once you've picked your vein,' I said, 'I'll zip over and grab the baby's binky.' Surprised, he looked up at me. 'Oh, it's good if he cries. It's good for his lungs.'

'No,' I said tartly, 'It's good for you, making it easier to find a vein.'

Somehow, I expected that he'd stop, and let me up to get the binky. But instead he swabbed the babes' inner elbow, then reached for the needle. At this point, I could have told him to stop, I could have popped the tourniquet off, but instead I sat, slightly surprised, and trying to go with the flow.


The babes had watched all of this with interest, and continued to watch calmly as the needle slipped into his skin. But the phlebotanist hadn't got the spot on the first try, so he slid the needle back and forth a bit, looking for his vein. The babes considered this briefly and then his face crumpled, and he began to wail. Then tried to get free, rocking his shoulders, his hips against our steadying hands.

The phlebotanist got his vein, and blood filled the tubes. He removed tourniquet, needle, and held pressure on the poked spot briefly. 'There will be a bruise,' he warned me. 'The baby didn't hold still.'

I took a deep breath. 'You mean, there will be a bruise because you had to fish for the vein.' I was furious, and he had the good grace to look slightly abashed.

I still am angry. And I just don't know who to be angry at: myself, for not standing my ground, or the phlebotanists as a group, who over and over have focussed on their procedures, rather than on the long term impact of the experience. Will the babes get over it? Absolutely. He's a baby. But I've had enough bad experiences with the phlebotanists to know that they are similarly task-oriented with older children, as well.

They are the needle jockeys of the hospital. And I firmly believe that they are a psychological wrecking ball for the chronically ill child. Happily, I've exercised some of my spleen by writing a note to Patient Relations...

I go to a gym nearby that is just lovely. The facilities are nice, the shampoo and conditioner in the shower smell yummy and ooooh, the whirlpool. And it's all women members, and yes, there's a nursery.

For a number of months now, I've been trying to talk to them about allergies. They claim to be allergy-friendly, but this is a dangerous fallacy. Currently, only cereal is allowed in the nursery, but cereal could (and often does) contain: dairy, nuts, peanuts, wheat, soy and of course, corn. So how allergy friendly are they, really?

I sat down with the manager and explained: unless you ban all food, you will not be safe for all kids with allergies. if you choose to have food, then you need to have backups prepared: you need to teach the staff good cleansing techniques, have a plan in place if one child eats something that another is allergic to, and above all, you must have an EpiPen Jr for each allergic child, whether or not they have a history of anaphylaxis.

Because, I explained, a child who has hives one day might have anaphylaxis the next. Whatever risk the parent chooses to take, you can prepare for anything by requiring an Epi. And everybody can be trained in how and when to use it - in fact, I offered to train them myself.

This training session was put off once, twice, until finally I wrote to the COO, asking what was going on. I wrote twice, and got a response this past week, from a new manager at my gym. She said that they were looking into the legal ramifications of EpiPen use by the staff.

Friday, I staggered in from the allergy clinic to see a response from the new manager in my email. They'd decided not to teach the staff how to use EpiPens, she said, based on legal advice that pointed out that the staff might not know when to use the Epis. But, she said, they'd certainly page me if my child had a problem.

The number of things wrong with that whirled in my head. What if he did have anaphylaxis? There simply might not be time to identify the problem and page me, have me come down and use the Epi. What part of 'life-threatening' don't they understand?

I pointed out that this was not a workable option, and urged the manager to consider carefully exactly what measures they were willing to take for allergy kids. Will they teach the staff cleansing techniques? How to identify an allergic reaction? Will they continue to call themselves 'allergy-friendly?' Or should they not have food allergic kids at all?

I asked them to reimburse me for the wasted months when I couldn't use the gym and patiently waited for them to resolve this issue. Meanwhile, I suppose I shall have to get used to the idea of giving up my membership.

This is the first time that an institution has refused to make the simple accomodations necessary for my children's allergies. Socially, we've run into people of my parents' generation who have simply abandoned the idea of feeding my children, and I accept the social reality that this presents. But this comes as a bit of a shock, and worries me, as I prepare to talk to the directors of two possible K-8 schools for the Eldest.

What will they be prepared to do? What won't they be prepared to do? As private schools, the Jewish day schools are not bound by the ADA, I don't think (Americans with Disabilities Act), and so I do not think that they have to accomodate my son(s), legally speaking. But we shall see.

But oh, am I shaken.

Tuesday, September 26, 2006

cooking for the cook

I have two articles with their deadlines looming, one of which I'm frankly afraid to write. So-o, I thought I'd procrastinate. Hello, all! And welcome to a former lurker, Sandi Kahn Shelton, the author of one of my favorite parenting books...mentioned by me earlier, here. It gives me the delighted fizzies to be read by someone whose book I lend (sorry) to the ridiculously sleep deprived.

And on to the time-wasting.

First, an insurance update: hurrah for negotiation and the HR folks, we will have our clotting factor stay as is, under the part of our plan without a lifetime cap. Which means I can remain bitter about these ridiculously low caps on principle, rather than from a sort of personal fear as our costs creep closer and closer to the magic number from the '70s... This also means that our factor, ancillary supplies, home care nursing will all come from a source knowledgeable about our needs, complete with the ability to courier us extra clotting meds in case of emergency. Blessed be.

We're still going to be nicely screwed with the co-pays, but this ball game isn't over yet, and I have hopes of further negotiations..

On a related note, I just got this in from an old friend: Worth a peek, I think, though the idea of allergy-indentifying stickers makes me laugh. If I used those, I think the kid would have what, five? four? square inches of skin free? Oy.

I do appreciate the idea of clearly labeled lunchbags (although you could just use a Sharpie) with matching EpiPen bags, water bottles, etc...the set would be striking and would certainly keep people aware, once they knew what they were looking at.

But the poster just bothers me. I recently heard a story from a woman online about her nephew, who is anaphylactic to peanuts. His school was actively uncooperative in regards to his needs (ADA? What ADA?), but did post posters with his photo and 'Have You Seen This Child' in the cafeteria, along with his allergy. The child was called Peanut Boy by his peers, and mocked nastily.

We now return to an old rant: a disability is only such if the individual accepts it as being so. But the weight of the community can force disorder into disability, even as the support of the community can rescue you from it. Yes, children can be cruel. But I strongly suspect that the children in this case were picking up on the reluctance and probable resentment from the adults around them. It's an old argument on the allergy boards, as to whether schools should be forced into accomodating our children. Legally, they have to. Practically speaking, I think that if an insitution and its individuals don't see the worth in my child irrespective of his issues, and don't embrace him for being valuable in and of himself, well, the hell with them. If you don't adapt from appreciation of the child's value, then you'll drag your feet somewhere, somehow, and the risk as to the outcome is too great to take.

this isn't about job satisfaction, it's about a child's life. As I said to the Eldest's teachers on Monday, until he has children of his own, he will not understand just how much we do, how far we accomodate him. And in doing so, we give him the gift of a childhood and the ability to live (and thrive!) in his own version of normal. The foundation he lays with these years in an accomodating school will shape his approach to the K-8 school, to high school, his attitude will shape others'...and on and on.

Oddly enough, the hemophilia online groups don't worry so much about using the d-word. Perhaps this is because allergy carries a faster, more immediate risk and consequence, perhaps this is because hemophilia is more manageable in a school setting, thanks to prophylaxis. For the next twelve hours, my child will do his best to imitate your version of a normal child...

Whee, but I'm feeling militant tonight! Perhaps that's because I've been reading about mothers who are terrified of labeling their children as disabled, maybe it's my research into intracranial bleeding and CT scans, or that I'm reviewing poems written about men with hemophilia during the HIV/AIDs crisis. Fun stuff, all of that.

Let's try a different tactic: the babes said his first word! And I am one proud mama, because that word was 'book.' Okay, so when he said it, it was more 'buk' than 'book,' but he was holding up a book at the time, and proceeded to point to more books and say his word over the course of the day.

I was so delighted that I took him to the library. And then forgot to feed him lunch, but that's another story, involving Sprint and my ancient, nearly broken cell phone. Okay, and my own tendency to forget lunch.

Meanwhile, the Eldest has moved into a disturbing tendency towards frustrated anger. And oh yes, hitting. Slapping, really, but all the same it's painful to watch. He's a child whose ability to cope, to hold himself together is extraordinary, and while his temper is a hot one, to see him completely collapse into rage is, well, saddening. I wish I could help him, I wish I could find a magic cure for him. Harsh discipline sent him into a spiral of anger and rebellion that went on and on, bringing out the worst in both of us. Ignoring it is unthinkable. The best I can do is recite my little line about not hitting, how it hurts body and feelings, etc, send him for some quiet time with a book and try to love and understand.

Because what's sending him over the edge, insofar as I can tell, is...breakfast.

Previously, before the babes' allergies surfaced (shall we call that b.a.?), the Eldest ate oatmeal for breakfast, he had a range of cereals, and okay so he had them with soy milk, but it was good in his eyes. Now, p.a., these breakfast foods have been banned, as the Eldest is simply not reliable about clearing his breakfast dishes. Though, mind you, he'll competently carry his lunch and dinner dishes from the table to the kitchen, pausing to scrape off his food en route.

Why is this meal different from all other meals? Oh, who knows (irritated shrug). But the upshot is that this was the daily scenario:
scene one: Parent comes downstairs, sets up the Eldest with breakfast and a DVD. Disappears back upstairs to try and shower while keeping the babes out of the toilet bowl.
scene two: The Eldest finishes his breakfast, then moves to the futon, where he curls up for the remainder of the DVD.
scene three: Parent #1 or #2 comes downstairs with babes, having already irritatedly cleaned small toiletty hands, and puts babes on the floor. Babes considers briefly, then wisely heads for the family room at top speed, knowing that edible treasures are there for the taking. Parent slowly, numbly follows.
scene four: Parent reaches family room, finding babes wrist deep in bowl of oatmeal. Parent grabs babes and runs for the sink, while screeching at Eldest something incoherent about responsibility.
scene five: silently, parent beats up self for letting the Eldest be in a situation where he should be held responsible. Mental lecture about having too high a standard, demanding too much.
scene six: repeat all above.

Our solution to this has been to try and have only breakfast foods that are friendly to everybody. This seems to mean either the inedible buckwheat flakes, bland rice cereal (yup, they make it for non-babies. but why?) or puffed rice. The Eldest has expressed deep disdain for puffed rice, explaining that it's only crunchy on top once you add the milk. True, that. Ugh.

So, we tried corn cakes. Nice, thin corn cakes with jam or Tofutti cheese or soynut butter. And now, of course, the babes is allergic to corn. (thwack, thwack head against desk) We tried shifting to rice cakes, but the challenge of finding a rice cake uncontaminated by sesame has thus far overthrown me. In a moment of inspired idiocy, I did find a rice cake without sesame, that had millet, flax and....spelt. Three days after its introduction into our home, the babes was up all night scratching.

Too tired and too stumped to find an alternative, the Eldest is eating his corn cakes, the babes is eating his rice cakes...and I'm gritting my teeth. Hollered at for not managing his breakfast, disturbed by not being the center of attention, and continually surprised by having to share his toys, the Eldest is upset. Frustrated. And offering up symbolic swipes at me - mostly me - to indicate that he's at his breaking point.

Ah, but I'm sorry, love.
Cooking for the cook: yesterday, a friend came over and our children played together. She's a lovely cook and a delightful person, who was so excited to be fed! She left, vowing that she'll come back and cook in my house for me. I can hardly wait.

here's what we had:

Short-Cut Indian Tomato Soup (wildly adapted from Indian Flavors, by Marut Sikka, pg 62)
28 oz can diced tomatoes, plus 4-6 fresh, quartered
3 Tb olive oil
2 tsp cumin seeds
4 green cardamom pods
1 stick cinnamon
2 bay leaves
salt, black pepper to taste
1.5 tsp ginger, roughly chopped
10 cloves garlic, smashed

Heat oil, adding all the spices excepting salt and pepper. Saute until the mustard seeds pop. Add tomatoes and salt. Stir.

Add water, then bring mixture to a boil. Reduce heat, cover, simmer for 30 minutes. Remove from heat and puree. Add black pepper and serve.

Optional: add fresh cilantro
Quickest Method: use pureed tomato, simmer for 5-10 minutes and invite the kids to play 'Spot That Spice.' It'll be less flavorful, but very very quick.
Oven-Roasted Salmon Look-Alike
sweet potatoes
olive oil
fresh sage
salt (sea salt is good here)
fresh black pepper
steelhead trout (cheaper than salmon, a bit fattier but less fishy tasting)

Cut up sweet potatoes, carrots into chunks. Toss in a bowl with perhaps 1 Tb olive oil, sea salt and pepper. Dump into a casserole dish. Roast at 450 for 45-50 minutes, or until browning.

Place fish on top, sprinkle with olive oil (lightly), salt, pepper and chopped sage. Broil for 10-11 minutes.

Serve! The sweet potatoes should be meltingly soft and sweet, while the fish is pleasingly crisp on the outside, soft inside. Feed this to my children and see the babes look horrified, while the Eldest insists that this is the best meal he's ever had. (To my delight, he has one of those regularly. The joys of feeding a budding foodie...)

Sunday, September 24, 2006

As the new year swings into action...

My new resolution: sleep more. Teach the babes to sleep more. Haul the man into bed before midnight to, yes, sleep more.

Many good things come from sleep, including the ability to read the sleep book, whereby we will teach the babes to sleep...and round and round we go.

I have a rumbling of thoughts about knowing one's child and distance and the role of schools, but first I wanted to direct you all to this: on Jewish debt . Yes, she's literally talking about Jews in financial debt, and not some homily on the glory of Jewishness. As I pore through the various pamphlets from the local religious schools, we are also worrying about paying our ever escalating medical costs. The two topics make for a dangerous intersection, as you can imagine.

In brief, then, here is the problem of Jews and debt. My quick disclaimer is that I'm talking about Orthodox jews, that being the sort I know - I make no claims or comparisons otherwise. Right, then. First, kosher meat costs more than non-kosher meat. Same for cheeses, wine, some prepared goods (freezer section-type stuff), restaurants. We send our kids to religious (private) schools, where they do a double curriculum in secular and religious studies. We hope that this prepares them to balance a life rich with religious investment as well as a fulfilling job, secular or otherwise.

The partner and I are lucky: some communities, the women wear expensive suits and hats to sabbath services. Some communities, the families spend thousands on a bris, a simchat bat (girl's baby naming) or bar/bat mitzva. We don't live in that kind of community, and economic cojones aren't necessary to prove that you're a good sort. Combine that with the partner man having a good job, that fascinates him while paying well, and we're okay.

But I look at these school tuitions, and setting all else aside, I'm shocked. I see prices of $12,500, of $14,00 and $16,500 a year. How old do these schools think we are, we parents? How wealthy? Looking around at my friends, I see them calm, relaxed. Why? Inevitably, the grandparents are paying most or all of the tuition, allowing their children to focus on things like paying the mortgage, or just paying the bills.

It bothers me that this situation is being perpetuated. I understand that the rising cost of constructing a good institution has forced schools into this position, and yes, of course I'd choose a good school over a lesser one, given the choice! But there's two problems that I see here: first, applying to the grandparents means asking them to agree with my choice of a school for my children, and to (literally) support it.

What if they disagree?

Second, while part of me insists that something so crucial will happen, if only we want it enough, I know the numbers. At the end of the day, priorities just don't change the income stream enough for miracles to happen.

These schools are drawing on a population that cares enough about religious affiliation and identity to pay the extra money for kosher food, and to buy the home within walking distance of a synagogue. These are families who are already spending more than other families, so why hit them with these astronomical bills for tuition? Wherefor this assumption that these families, of all families, have disposible income?

Because the very idea just makes me laugh. And angry. And sad. I have too many friends who are planning on sending their children to public school because they can't afford the bills, and don't qualify for tuition assistance. We started saving last year, to avoid being in this group - but I know that all we've done is possibly delayed the moment of financial truth. These schools are beginning to make the education they offer a matter of class and opportunity, and while that might be what prep school is about, but it isn't what a religious institution is meant to do.

Thursday, September 21, 2006

all sorts of shapes and sizes

I am hanging up on the ever-patient magid to write this, a recipe. But first, a pair of stories:

We are driving in the car, listening to Joseph and the Amazing Technicolor Dreamcoat. This is a favorite in our house, and we even have a video tape of the production, with Donny Osmond as Joseph. The Eldest loves it, loves watching the story explode into light and color and music. Thus, the CD playing in my car.

Suddenly, This is the part where they start taking off his clothes, I am informed. Wha? I say, cleverly.
This is the part where they take off his clothes so that he can go to jail, the Eldest explains.
Not all of his clothes, I protestweakly, not really sure why I'm protesting at all. He has the wrapping skirt thing that he wears in jail.
Yes, all of his clothes, the Eldest informs me, sternly. And (giggles) he has nai-nais!

Nai-nai is our family code for breasts, a quasi-discreet choice for those of us who choose to nurse our children longer than society really wants to think about. Of course, how discreet the code can be, when combined with a toddler determinedly lifting one's shirt...well, that's a post for another day.

I consider Donny Osmond. Do you mean nipples, perhaps? I ask the Eldest.
Nope. He has nai-nais like you! They come out of his chest, and the Eldest makes curving, cupping motions to show me. To my delight, the Eldest seems to be wholly aware of the gender-bending he's describing. It occurs to me that he could, if he chose, characterize this as male, but that he's tickled by the idea of it being transgressively female. He loves the idea of rules being bent - and this is no different.
Yes, yes he does, I agree. But no milk...
The Eldest, giggling till, stops and looks at me, surprised and disappointed in the Joseph who can't make milk.

Years ago, when I was a new mother, I spent a lot of time in toy stores, trying to buy the perfect toy, the toy that would make all things right, make all of us happy. It was a difficult time, when we were new to the Eldest's pair of diagnoses, and I was grasping at anything to tell me how to parent, show me how to bring happiness back to our lives, to keep it there.

I do not miss those days.

One day, I was in a store looking at a shape sorter. I must have this, I thought. How else will my baby learn to sort shapes? And then, deep in my cloud of mindless commercialism, I paused. This? This is the crucial and must-not-miss thing that will teach my kid this lesson? What the hell happened to me? And I walked away.

Four years later, I was standing in Babies R Us, trying to figure out what to do with some store credit. I bought diapers, wipes, a set of binkies (pacifiers) and finally, found myself staring at the same shape sorter. Unlike the rest of the toys, this had no batteries, didn't promise to increase the babes' IQ and oh, what the hell. Kismet?

To my delight, he had no interest in it for months. Instead the Eldest used it, lining up the shapes, sorting them by colors, by shapes, doing disappearing tricks so that three by three by three became two by two by two, then one... It's magic! he proclaimed. Eventually, the babes rescued the toy, and learned the joys of taking in and putting back. Each time, though, by yanking off the sorting top to get easy access.

I sat down with him. Together, we pushed circles through the holes in the lid, then squares and finally stars. Each time, he yanked off the cover to see the block, lying in the container. Insert, check, insert, check. Finally, I turned it over to him. He picked up a circle, pushed it in. Then he picked up a triangle, tried to fit it in, failed and considered the matter. He looked at the cover and yanked it off. See? Easier this way. I grinned and let him be.

Here is the cake I made for the babes' birthday dinner. It was splendid, and I'll be making it again tonight, for Rosh Hashana.

Many-Bowled Cranberry Cake (Four, to be Precise)
serves 6-8
2 oz soft butter/margarine
1/2 c. sugar
1 Tb grated/zested orange peel
10 oz cranberries, fresh or frozen. Chopped is nice.
2 Tb orange juice concentrate
2 Tb water
beat butter and sugar together, mix in orange peel. Spread mixture over the bottom of a greased cake pan (not springform - this will leak). Sprinkle cranberries on top. Mix juice and water, then pour over cranberries.

1 c. gluten free baking flour blend (your choice)
1 tsp egg replacer
1/2 tsp baking powder
1/4 tsp xanthan gum
1/8 tsp salt
1 stick unsalted butter/margarine
1/2 c sugar
2 eggs, or 2 Tb ground flaxseed, plus 1/2 c water, boiled in microwave and let cool
1/2 tsp vanilla

Preheat oven to 350 degrees.
Mix flour blend, egg replacer, baking pwder, xanthan gum and salt. In a separate bowl, cream butter and sugar. Add eggs to butter-sugar mix, mix until smooth. Add vanilla, then slowly add dry ingredients (be prepared - the flour will puff up and make a bit of a mess unless you add it slowly).
Spread batter over cranberries.
Bake for 25 minutes, checking with a toothpick. (My cranberries were still slightly frozen when I popped the cake in, mine took about 40 minutes to bake.) Let cake sit for 5 minutes before turning it out onto a serving plate.

Recipe from Living Without, fall 2006 issue. This recipe is or is potentially: dairy-free, egg-free, gluten-free, nut-free, etc. And yet, somehow it is delicious!

Wednesday, September 20, 2006

new year, new plan?

As Rosh Hashana approaches, the newness is wearing off things.

The Eldest is now happily ensconced in his new classroom, and he has had the first bleed for which I was called...and the first bleed for which I was (appropriately) not called. All is right in his world, especially as there is a woodworking corner in the classroom! As far as I can tell, he spends most of his time there, working on a mysterious project that he tells me is a ship. Apparently, it involves a lot of hammering.

The babes is getting to know Mary Poppins Jr., who is splendid, and far better at her job than I deserve. Did I hope for someone who will love my child? Yes. Did I expect someone who will celebrate him? No, nor did I hope for all of that energy, that delight, that willingness to get dirty with him, and yes - to bake for him. For Mary Jr. is also a baker, working at one of the crunchy granola stores. She makes beautiful bread (I've seen it), and cupcakes with icing that looks like frogs. Yowza.

She promised to show me the frog trick...

And I had my big presentation to the I.V. nurses association, complete with my very first experience with PowerPoint. Somehow, nothing went wrong, and yes, I made them laugh, and yes, they cried (I still don't know why they do that, but the last time I talked to a group of nurses they also cried. Ya got me.). But most importantly, there were a couple of points during the talk when they went dead silent, focussed absolutely on what I was saying. Now that was high praise.

And the man is getting through the annual tough work-patch, and is motoring through well. He keeps getting swamped in work and calling to say, desperately, 'I just don't know when I can get home.' And coming home by 7pm. Sweets, it's just too easy to support you...or seem to, anyway.

But, as I said, it's a new year coming, and a new plan - health care, that is. This time, the company singled out hemophilia as a driving cause in the rising healthcare costs for the company. Um, yup - that'd be our fault, because I seriously doubt there's anyone else with this in your huge, ginormous company. Sorry, all.

As expected, the huge ginormous company is trying to cut costs - by making us switch our provider of the ridiculously expensive clotting stuff from a hemophilia-specializing homecare company to GIANT pharmaceutical supply company. BTW, GIANT p.s.c. charges 50% more than tiny hemophilia-specializing company, and very well may charge for the ancillary medical supplies that we get comped by the tiny hemophilia-specializing folks. WTF?

The answer is that our company probably made a deal with the GIANT p.s.c., whereby they switch everybody over, save money overall, even if we expensive folks cost more, individually. This is a classic move, increasingly common among companies trying to manage costs with expensive folks like us hiding in the crowd. Which is fine by me, except: a. our factor may now start counting against a lifetime cap (see me on caps here) of a piddling million or so dollars (at 2,000.00 a week, that's nothing, not to mention that the doses rise as the kid grows). and b. with this change came lots of 'we're not calling them co-pays' co-pays with no maxiumum out-of-pocket costs on $100 a pop for ER visits. And c. we could end up trying to get factor, ancillary supplies, home care nursing from people who just wanted to fill a 'script. Oy. I do hear tales of factor improperly stored, poorly shipped, and will I lose my beloved 24 hour emergency courier service? Yes, I am that organized, so yes, i could manage without, but I like to prepare in advance under the pretense that I'm not actually that organized. That way, I actually am...following me here?

This is going to suck. It will suck eggs. nasty, allergenic eggs...sigh. It will trash our budget just as we start moving into the slightly improbable situation of paying for two kids to have childcare/tuition. Sigh some more, gustily. I can mentally review a long, long list of things this is going to affect, and I like none of them.

What irks me most of all is that even the HR people, who supposedly negotiated this plan, don't know the details. We stand or fall based on the details of it, and nobody can give us solid information. We get a nugget of information, rejoice or shriek over it, then discover that it is incomplete, incorrect, is retracted, and ride the emotional rollercoasted all over again. Year after year, I've watched us try to find more and more money to pay our insurance costs. The partner man feels that it's just what comes with having our kids. He's a good guy, a sweet guy. Love that man. But a leetle too turn the other cheek, I think. Me, I feel like there's something a little wrong here, something a little personally offensive. Me, I'm thinking of breaking out the shotgun and politely leaning it against a wall while I have earnest, in person discussions with folks about all of this.

What, that? Oh - I use that as a plant holder. Now, let's talk about ambulances: are they in-service or out-of-service?

But of course, I can't be sure where this will leave us. The ending to this year's drama may very well be a crowd pleaser, but at this time we can neither confirm nor deny the possibility...thank you for calling, we appreciate your business and will be with you as soon as possible...Blue mooooon, yoooouu saw me standing aloooonne, withouuutt a dreammm in my heaarrrrrrrt, without...blech.

If I don't post again before Rosh Hashana, for those of you who observe it, I hope it is an introspective and healing experience, that it prepares you for the coming year with strength and self-awareness.

G'mar chatima tova*, all.

* may you be sealed for a good fate/year to come.

Saturday, September 16, 2006

cocktails, however briefly

Tonight, I went to a party.

To understand the significance of this, you need to realize that I do not go to parties. In fact, I was renamed as the local Snuffalupagus because my tendency not to go to parties led me to become some semi-mythical creature, known to some, proven by few. As you can imagine, this tendency did not so very much change when I became a parent.

At various points in time, people who knew that my partner was one of a set would try and figure out who his other half was, with the result that he now has three or four faux-wives scattered around New England. He has, as he points out, options. As do I: I attended an infant/child CPR course with a friend, the partner already having taken the class. The friend was female, and the instructor drew certain conclusions. So, I like to tell the partner, I too have options.

But yes, a party. We parents of young children don't really go to parties, as if there's some unspoken social divide between the have-diapered and the have-not. Maybe we're just too tired to make good conversation, maybe we're too tired to have a drink and walk home safely. Either way, we don't tend to go. Walking in, however, I remembered immediately: there is a feel to a party, a code of behaviour that I only ever imperfectly learned, a manner of engagement with others that doesn't quite exist outside of the party - though traces of it pop up when flirting. (Flirting..I think I remember flirting. Possibly.) Watching the party, which I left just as it was roaring into life, I remembered the limited methodology that I'd worked out for managing these events, which I'm writing down so that I don't forget.

After all, it's likely to be another year or two before I actually go to another of these things...

Rule One: thou shalt not converse.
Party conversation is not deep, there's a shifting mass of people and you just don't have time for any kind of serious conversation. What drives me a little batty is the ease with which the currents of the party can sweep away a person just when you've gotten through half of the 'so, how's things' conversation. This Rule may be Excepted if you think you are going to get laid or have met someone with Potential.

Rule Two: thou shalt be witty.
If you are having a lousy week, joke about it. A good friend will see beneath the wit and make a mental note to Call You Later, or pull you aside for a quick debriefing. Otherwise, see Rule One for the conversational guides and limitations vis a vis serious conversation.

Rule Three: have a plan of attack
In this case, our hosts had arranged this for us, by having everyone come as their favorite cocktail. I met my very first Cuba Libre (coke and lime?), a splendidly Old Fashioned, an extremely Fuzzy Navel, and a Scotch chaser who was delightedly offering to do so.

Alas, I had no such imagination. Minutes before leaving, I sniffed my shirt, dug out a pair of clean pants, and ran off, before the partner could hand me one of two determinedly awake children. I arrived to discover that I was wearing brown pants and a cream shirt, and described myself as a cup of coffee to my hostess, and hoped nobody else would ask. Mostly, they did not.

Given this arrangement, introductions were easy. You wandered up to someone, tried to guess their costume, failed and then traded names. From there, it was simple to move on to the job, place of residence, Jewish geography sort of thing. Occasionally, however, this fell flat. I passed a guy wearing a light blue shirt and matching hat, stopped and asked. 'I'm a manhattan,' he told me. I stared. 'See?' he pointed out, 'Man, in a hat. Manhattan.' I thought of the city of my childhood, grey tall buildings, people rushing past. 'No Manhattan that I know,' I carefully did not say. And moved on.

Rule Four: Be with or be occupied.
If possible, come with someone. Coming with someone means that you avoid the cafeteria-no-place-to-sit social experience of adulthood, and you always have a social haven to tuck yourself into. If you come alone, then you need to be occupied, lest you fall into the category of Slightly Sad Person Sitting/Standing Alone. No fun at all, that. So, failing a companion, consider either a. something in your hand. When all else fails, sip or munch. Or b. walking somewhere, purposefully. I shall now proceed to walk over there, and talk to that person. Excuse me.

I found that my party walk was faintly jaunty, and I spent some time on the ride home idly trying to figure this out. Wherefor the jaunt? And why do I have nothing else to occupy my brain?

I concluded that it was the pants. Yes, the pants I had grabbed en route were, at one time, my 'I can't believe that I fit into these' pants, a fact that somehow balanced out the conjunctivitis that yes, has now spread to the second eye. Taking a moment to navel-gaze, allow me to explain that one of the secret reasons that I do not go to parties is that this means getting dressed. Yup, that harrowing chore in which I look in my closet and review the clothing that does not fit, the clothes that make me look like an overstuffed sausage, and finally must turn and look in the mirror. I am rarely satisfied with the results.

Typically, my mom-gear is loose, comfortable and has as many pockets as I can find, short of buying men's clothes or camping gear. This is very different to the Want To Look Nice clothing, which tends to try to fit some idealized version of a person who is not me, and inevitably ends up by making me look lumpy. However, I am currently attempting to persuade myself not to look in the mirror and imagine how I'd look if that curve were higher, lower, lesser... So tonight I flung something on, did a quick check for baby spit, and ran. Thus the minor triumph of the pants, thus the party.

So, then, some part of my brain must have recognized the significance of the pants, weighed it against the eyes, and jaunted from triumph. I respect that. In fact, I allowed myself to jaunt the rest of the way home. And now I'm wondering if the jaunt might not have added benefits, and if this means that I should wear these pants at my big presentation on Tuesday...

Thursday, September 14, 2006

a quickie (menu-style!)

Dinner tonight was an exemplary effort - I made something out of, well, pantry. Here it is, before I forget what I did - but first, an appetizer:

With the babes tentatively taking steps, new accomplishments are unfurling themselves, in truth being but modification on previously acquired skills. So his stair climbing + standing + shifting weight while upright = ability to climb on a little push along car. The Eldest at first greeted this with a certain territorialism, made the sharper by a general angst about being invaded.

Ten minutes and several 'let him have a turn, kid. How would you like it if a bigger kid grabbed something from you?s' later, the babes was climbing on and off the car quite competently, having figured out how unfold his leg once his bum hit the seat. And the Eldest seized an opportunity.

Would you like a ride? The babes beamed, and the Eldest pushed him slowly, gently around the room. The babes fell off at each turn, but determinedly climbed back on the car, grinning with delight. Sensing A Proud Mama Moment, I leaned back and let it wash over me.

Five minutes later: don't grab his legs - would you like it if I grabbed your body and held you still?

Main Course:
Lemon-Garlic Bok Choy:
fistful of cloves of garlic, smashed with the side of a knife.
drizzle (2 TB?) olive oil
kosher salt
black pepper
baby bok choy
lemon juice (2? Tb)

Pour oil into wok, heat. Saute garlic, then add bok choy. Let brown a bit, tossing in wok. Cover and turn off flame for 2-3 minutes. Bok choy will have gone from bright green to dark green at the leafy tips. Take off stovetop altogether, add salt, pepper and lemon juice. Toss.
Frizzled Broccoli and Tofu Pasta
2 crowns broccoli
fistful of smashed garlic cloves
1 inch ginger, sliced into matchsticks
vegetable oil
rice pasta (asian, not faux wheat pasta - also called rice threads), possibly also called bifun
1 block tofu, firm or extra firm
black pepper
soy sauce (I used tamari)
mirin (rice wine)
zest of one lemon, chopped a bit

Part One: Heat 1 Tb oil in a wok. Add garlic, ginger and saute briefly. Then add broccoli and saute perhaps 5 minutes. Broccoli should start to have dark patches showing. Add 1/4 cup mirin and cover, let steam itself to tenderness. While still bright green, remove from heat and dump in serving dish.

Part Two: in a bowl, cook the rice threads. This can often be done just by leaving them in very hot water for 15 minutes (the package I had said ten minutes - it was wrong).

Part Three: pour 1/4 c. oil into wok, heat. Cube tofu, pressing to squeeze out extra liquid. Add to wok, and fry until golden brown. Toss with rice threads and broccoli, adding salt, pepper and soy sauce to flavor. Add lemon zest and serve.

Sorry that I don't have more precise measurements! But it was all delicious, though I think the tofu-pasta could use a little something. If anybody makes it, let me know how it goes. And hurrah for the Eldest who finally, reluctantly tried a bok choy and looked astonished. Finally, he waved a fist in the air, thumb up. It's good, then, I asked. He nodded, emphatically...but declined to help himself to any more.

Step by step, we build a palate, no? Tomorrow, we test out figs. Also tonight, granola bars! More on that as we see how they store and hold up in backpacks.

Dessert: a bit of food for thought.
I read this, on Doulicia, and then fumbled an answer to this. Not depressing to my eye, but certainly a pause for respect and for thought.

I get told a lot that I'm this extraordinary person, that what I do is amazing, blahditty blah blah. Deep down, I know that what I do is based on two things: first, sheer stubbornness. This is my family and I will feed them, no matter what idiocies their immune systems throw at me. And from pride, this will be good food. Second, a very specific kind of naivete. Naturally, I shall explain..

Most new parents, high on pregnancy and the headiness of taking that plunge, don't think about the possibility that the child may have a medical oddity, that this fragile group of cells may not quite divide right, grow properly. They cling to the naivete that everybody is beautiful on their wedding day, that they will hold a tiny, perfect baby (somehow without the vaginal conehead - that never makes it into the fantasy), and they will glow with the joy of new parenthood.

They deliberately block out the reality behind the ultrasound, the bloodwork, the AFP. Me, I get that. Bodies work, don't work, almost work - I know that now, deep in my bones. But I draw the line at admitting to myself that children die.

Oh, I know that they do. A dear friend lost her first daughter to leukemia. I grew to know her while we were both in the hospital, I visited her, I was in and out with the Eldest while her daughter fought the leukemia. And I was there the day the doctors told her it was going to be terminal. I remember that small wooden box, with a pink blanket... and then I stop remembering and refuse to think about it. I tell stories about Isabella with her mother, but otherwise I stand firm. Where my family is concerned, whatever happens, we'll figure it out. It's an attitude that assumes that there will be an outcome to figure out, a consequence or fallout other than simply


This attitude has kept me calm and functional through too many real crises, and it's the same stubbornness that made me mutter, returning home from a certain tomato festival that, no, I was not giving birth that day. The fact that I didn't only serves to reinforce my certitude. Bad cosmic move, people.

Bumpy parental road, yes. A silent room where a child's voice is not - absolutely no. May I remain ignorant, surrounded by naive compatriots. And, refusing to think about my blank spot, may I continue to embrace the bumps in my parenting road because, at the end of the day, I have them.
Enjoy the meal, all. And a happy anniversary to the FIL and MIL! I hope that the offspring gift arrives in a timely fashion, to beautify your home and all it represents for two seasons, if not more...returning year after year.

Wednesday, September 13, 2006

egg, no egg, quasi-egg, egg in the eye?

I am experimenting with an egg substitute, called flax gel. The recipe is as follows:
1 Tb ground flaxmeal
1/4 cup water.
Stir, then put into the microwave until bubbling. Allow to cool.

The results really do make a gel-like substance, although I'd let it bubble a bit - don't just yank it out at the first sign of an eruption. Thus far, I have field tested this on cookies (slightly crumbly but good) and salmon croquettes (a valiant effort that eventually dissolved into salmon mousse). My thoughts are that this gel is certainly better and more comfortingly recognizable than Ener-G's Egg Replacer, which is an unsatisfying replacement, but functional. And while I'll happily bake with this stuff, I think I won't deep fry with it.

Once again, the children are forcing me to eat healthily, damn them. Hmm. Not too many gastronomic sins that I can commit while I'm still nursing the babes, I suppose. Although I could sneak out and get shitfaced. That'd take what, two? three drinks? Sounds like a short project with a long aftermath - hardly worth it.

Odd thought: I know that beer is off limits, but I wonder about whiskey?
In other news, the babes is finally, truly walking. This has been a process that I've watched, amusedly, since he was ten months of age, when he took a couple of steps, leaned over and fell on his face. Looking offended, he decided not to do it again. But over the past couple of months he's been competently walking while holding on to a lone adult finger. Finally, he's admitting his own competency and taking one, two even three steps at a time before thoughtfully dropping back to all fours.

Any day now, the delighted and adorable toddler waddle!

P.S. in case you are wondering, no, I'm not mad - I have conjunctivitis! I'm trying to think of this as a character building experience, in which I walk in the Mater's shoes. The Mater, for those who don't know, has one brown eye and one green. Her baby photos have those eyes thoughtfully tinted blue, by a photographer who felt that, all things considered, the situation was a bit indecisive.

But bicolored eyes is not quite the same as one normal brown eye and one furiously red eye. That's just bizarre. People stare on the street. People studiously look away. And damn, but it itches! And the friggin (mutter mutter mutter) ointment gums my lashes together and feels oooh so odd.

Character. Building character. A bit coals to Newcastle, but (focus woman, focus) building character. Hmm. Any more character and I might even start talking politics again. Or adamantly refuse to talk politics.

and now for something completely different: hate mail. Yup. Sent to my editor, two letters thus far and counting.. I almost feel flattered.

Monday, September 11, 2006

happy birthday, babes!

While others spend today remembering the towers of my childhood (yes, I'm a New Yorker), I'd like instead to be celebrating the life that emerged on this day. For today is our babes birthday, and he is one whole year old.

Looking at him, I see my nursling, whose earnest face is belied by his happily kicking feet as he latches on. The stubborn little body, walking comfortably holding on to one of my hands, but refusing to let go until he feels secure in this new mode of locomotion. The bursts of babble, dying down to murmurs or gurgles, a skill that pops up just when I begin to wonder if he has it at all. The independant spirit that lets him wander off, calmly, and play for five, ten, fifteen minutes before he turns to look for me. And oh, the allergies, which feel much like the babes did in utero, when he'd stretch while lying in my pelvis. Oh, no, I'd think, I can't - I don't do that - that's bone, ya silly weeble...and then the bone would somehow stretch with him, in an indescribable sensation. So too have we stretched, shaping ourselves around him even as we reshaped ourselves around the Eldest.

Welcome, baby love.
baby love, a year old today, up with the sun and ready to play

But as I have this opportunity, let me tell you also what I saw, a year ago today.

I should start by telling you that I had a c-section with the Eldest, and that the first obstetrician I saw gave me no more than a 10% chance of having a VBAC*. I was hoping to avoid another c-section, remembering how hard it was to recover from that first one. And I had a sneaking suspicion that mothers of two get even less downtime than mothers of one, albeit a rather complex one, making recovery time rather scarce. And so I went hunting.

I found the teacher of a VBAC class, an ob/gyn who was either crazy or wonderful and possibly secretly female, who pointed us to a doula who persuaded my partner that doulas are useful people at a labor and delivery. While assembling our team, I turned down offers from the hematologists to do risky tests on the baby, to do counseling that would guide me in my choices (carry or abort), and finally agreed to one thing: we'd find out the baby's sex. If a girl, then I wanted a birthing center with a minimum of people to bug me during labor and delivery. If a boy, then we'd treat him as if he did have hemophilia during labor and delivery...and I produced medical journal articles showing that the best way to manage a newborn with hemophilia is to deliver them vaginally, after a normal labor. heh.

(the VBAC class teacher, incidentally, found this amusing. You're going to have a medically indicated VBAC, she hooted. I nodded, smugly. I was certainly going to try...but we both knew I'd do so under a medical microscope, with everybody terrified that the baby would bleed internally from the labor, the delivery, that we'd sue... And we knew what that meant for my chances.)

9/11/2005. 5.45ish a.m., we walk into triage and are asked to wait. I'm having back labor, and can't get a respite between contractions. Desperate for a comfortable position, and to try and shift the baby away from my spine, I somehow end up on the floor, where an irate nurse asks what I'm doing, decorating her carpet. 'She's in labor,' the partner says, as if she was missing the point. Silently, I cheer.

In triage, I'm asked repeatedly if I want an epidural. Frankly, I wouldn't mind one, but I know that statistics argue that she who has an epidural is far more likely to have a c-section, and it's frankly pissing me off to repeat myself to this junior varsity person. I like her even less when she tells me I'm only 2 cm dilated. However, she tells me grudgingly, this is my second baby, so we can stay. Hooray for the unpredictability of second babies, I think, and stagger out of triage, where I find our doula waiting.

Somehow, the doula and the partner shed most of the medical paraphernalia and hangers-on, to get us to our room. There, one irritating check-up later, I'm left alone with my chosen pair. Blessedly alone...but the back labor won't stop, and I can feel the pain engulfing me. It is bigger than I am, it is a wave and I cannot dive beneath it, I can't breathe, can't can't can't

a cool hand strokes my lower back, circling. Relax, a voice tells me. Go soft, let it happen.

I do not know why I listened. I even listened to my partner, knowing that he was afraid of seeing me in pain, afraid that his urge to protect would overwhelm his commitment to support, and me afraid that I'd laugh bitterly when he told me I could do this. Instead, I let go of thought and I did indeed go soft, I did relax, draping my arms and shoulders over a mattress, letting the pain ripple over me in a timeless moment. I heard voices telling me that I could do this, that this was good pain and I should let it come.

At one point, I ended up sitting on the floor, thinking rebelliously that yes, I probably could do this. But I really don't want to. And yet. But then I returned to my timeless moment, with its waves of pain - not riding them, not pushing them away, but letting them break over me, floating.

The shift changed, it grew light outside, and my waters had not broken. A nurse came in to introduce herself, but I could not look up. Something feels different, I said musingly. Something is - ah. And water ran out of me. I turned, wanting to share this with my partner, the doula, when I felt something else. I, I need to - and I flung myself at the nearest body. The doula looked at me, hanging on her shoulders and turned to the nurse. She's bearing down, she said urgently.

push push push push - no, you must stop pushing, I need you to be here like this, I need the baby's heartbeat - I growled viciously - push push must push.

Nurses scuttled around me, one trying to focus, to tame my need to push. Another trying to find the baby's heartbeat. She presses painfully hard into me with a monitor. The obstetrician (not mine, who cares push push push) comes into my field of vision. We can't find the baby's heartbeat. I cannot guarantee 100% that the baby is fine. The partner and I stare at him. I know ass-covering when I see it. Fine, we tell him. Let us know if you are actually worried. Push push push push.

The head is coming down, but it slips back when she stops pushing.
deep in my rhythm, I spare an irked moment to blame the idiot keeping me flat on my back.

Focus your energy here, can you feel this? (a wet heat - yes! push push) Push to this spot.


She's tiring.

I growl at this last and rise to the bait. This is mine push push I will do this push push mine push push push! Something burns, slips. I have the head. Next to me, my partner gasps. Shoulders, back, legs follow. The thrumming in my bones, the need to push having faded, I flail, becoming aware again. I see the nurses, I see the partner on the other side of the room by a bassinet. I look up to the doula.

There's a baby? the baby is here? The doula gives me a melting look, and simply tells me, yes.

And there he is. Red headed, dark eyed, nuzzling me, looking for the breast - ah, got it. Red?

The rest blurred, as the ob had to remove the placenta, stuck to my old c-section scar. I didn't begrudge it, and woke up to a room with a nurse, sitting calmly next to me. As it turns out, this was the nurse who walked in just as my waters broke. I never got the chance to introduce myself, she laughed. I grinned. Me, neither.

I lay there, trading parenting stories with her until the phone rang. It was the partner, and oh yes the baby can clot. 89% factor VIII levels. I lay there and cried. That's good news? the nurse asked anxiously. Oh yes, I told her, still crying. But I wasn't quite sure.

The next day, my ob walked in the door. He chatted, reviewed the labor and delivery. Before leaving, he looked at me. I wasn't sure if you could do it, he told me, honestly. Usually, I know if my VBAC patients are going to make it or not. But you - he shrugged. I remembered the tidal wave and shrieking crash of my first labor and delivery, considered the viciousness and odd peace of the second. I wouldn't have laid odds on me, either.

And here he is. Unexpectedly redheaded, the product of an entry both brutal and empowering. His arrival, his self all warned me not to make assumptions. But of course I did anyway.

How not? He offered enormous temptation to assume we could guess, or even just knew was the patterning. Both of my boys were born at the same time, the first in the p.m. and the second in the a.m. That time is, as it happens, the same as my birthdate. These are my sons, I think, and am seduced by this into believing that I know them, I can predict them. Hah. More fool me.

Happy birthday, little boy. My gift to you is that I promise to try, even when the weight of parenting feels impossibly heavy. I promise to remember that I am learning as I go, and you are one of my teachers. Even if you are occasionally a teacher marinating in his own diaper.
*VBAC: vaginal birth after cesarean

Saturday, September 09, 2006

bad beta, bad!

A quick warning to my readers, especially those who write blogs themselves: having switched to Blogger Beta, I now can have those neat little indexing tags, but cannot post on non-beta blogs. A rather significant omission/oversight on my part, not to mention Blogger's!

My apologies to you all...

Thursday, September 07, 2006

Mary? is that you, dear?

Hold your breath for me, cross your toes, toss salt over your shoulders, keep on wearin' those lucky boxers because I might, might, might just have a nanny.

No, I won't extol her virtues. Last time I did that anywhere semi-public, hordes of people from Harvard, MIT and Brandeis tried to steal her. (No, not exaggerating. More fool me.) But I will say that she has a sister with anaphylactic dairy allergy and can keep her head in a crisis. Oh, and she seems to love my children, thus I may just be inclined to adore her.

The belief in dirty children and neglected televisions might just be a bonus.

There is, of course, one complication. (Only one? Astonishing, no? Especially given my track record.) One of the two days that suit both our schedules is....Friday.

Yes, Friday, day of harried labor for those of us anticipating a religiously-sponsored day of rest. Friday is the day on which we scuttle around, cooking everything that we'll eat until after dark, Saturday night. And with the ritual sabbath meals, that's a whole lot of eating. The NY Times once compared the Christmas dinner to the Sabbath meal, and noted virtuously that the Jews appear to eat healthier than the Christians. Reading this, the Jewish community held their collective sides as they roared with laughter. Them's statistics for ya: Christmas comes once a year, but we sabbath-observers tend to have two NYTimes-style sabbath meals per week.

So, no, I don't think we're going to be the slimmer crowd. And given that, how likely is it that I can swing a cooking-free Friday? But oh, for my Mary P., I just might try...

the list

In case anyone was wondering, corn tends lurk in the following:

commercial baked goods (cakes, breads, cookies, etc)
sauces (ex:tomato, barbecue)
fruit juice
soda (drat)
chocolate syrup and other syrups
candy - hard, soft, chocolate
pretzels, some chips
soaps, shampoos (including the babes' eczema soap - ha!)
peanut/nut butters (but not our locally made soynut butter, thank heavens)
tofutti ice cream, cream cheese
soy cheeses
soy yoghurts
soy ice creams

(depressing list courtesy of the mum to two corn-allergy girls)

More importantly, however, corn breads and muffins are easy to make without dairy, are forgiving if you skip the egg, and don't have the other, problematic grains. So, here is the dilemma:

do we eliminate corn from the house or not? We would not do so, if we could find a way to keep the babes from eating the stuff. However, given his Roomba-like tendencies, this would mean aggressive cleaning. Who has the time or the energy? Furthermore, he's muscling his way in towards eating table food, something I'd rather like to encourage...and he gets grumpy when you don't let him eat something he's set his heart on.

What can I say? My boys, they be usually hungry and pretty determined about their food... But don't go by me, ask Auntie A, whose astonished gaze watch my boys swallow platefuls of stuff, pouring it all into - well, where do they put it all?

Tonight, I will not resolve this. Nor, I suspect, will it be resolved tomorrow. The shabbat is coming, and this week I intend to wrap myself in the sabbath's rest and quiet and luxuriate in it - no tormented glances at my cookbooks or pantry allowed. Maybe some epiphany will emerge over the weekend. Maybe it'll be a culinary epiphany. Or maybe none of the above - instead, perhaps the babes will quietly, quietly prepare to turn one...

Wednesday, September 06, 2006

tale of two pediatricians

I have a job! I'll write for a bleeding disorder publication, and my boss is someone who really understands the concept of tikkun olam* - but I digress. The point is that I have a part-time job, my first assignment is due a.s.a.p., so naturally I'm celebrating with writer's block. And procrastination. Gee, feels like being back in college..

So hear ye, whilst I can still bear to waste time, the tale of two pediatricians. (And yes, I'm going to be paid by the word, but no, unlike Dickens I have an upper word limit. Lower, too.)

I come from a traditionally medical home, in which too many of the males in our family are doctors. This meant that we kids were never impressively sick enough to stay home from school, and I remember distinctly my father explaining away a broken bone as a 'bruise.' Nonetheless, we all survived, and robustly so, which taught me a certain amount of skepticism for the aggression with which American medicine is practiced, inconveniently combined with an automatic respect for the practitioner.

However, over the past couple of years I've been watching western, or allopathic medicine, and noticing where it's fallen short. Or where it's failed to customize itself fully to the needs of the individual. Especially where allergies are concerned. Here, allopathic medicine is, as my father says scornfully, more like "voodoo" than science. After consultation with our allergist who produced clinical evidence to urge us to do so, we'd decided to explore alternatives, and so here we are.

Two complementary medicine practitioners later, I'd been advised that the boys' immune systems were hyper-sensitive, and told repeatedly to avoid things that might irritate their immune systems, such as unnecessary chemicals (found in household cleansers, conventional produce) and to avoid immunizations. Oddly, I wasn't shocked by this. As a layperson, I have an oversimplified idea of the immune system. I'm aware that the immune system has a variety of parts, one of which created the antibodies to the Eldest's clotting protein, another of which creates the various antibodies to food and drugs. However, taking an ignorant step back, what I see is that these are parts of a pretty ticked off whole. Why prod the whole with a stick?

From this perspective, immunizations seem to be a real risk. When you add that we've steadily increased the number of immunizations and speed at which we give them (some given in the first 6 months of life aren't given in Europe until age 2 or older), and you correlate that with the rise in allergies, in autism, in other chronic conditions, there are some disturbing parallels, not all of which can be explained by better testing mechanisms. So what do we do? Pick the most useful sticks, the ones with the greatest protective power, and poke?

Homeopathic methods for immunizations are slower and gentler. Are they as effective, however? Honestly, I don't know. I could find out, though. And so, here we are, with the babes' first birthday mere hours away, a milestone that comes with any number of well-meant perforations of the leg...

homeopath vs allopath. Familiar vs. unfamiliar. What to choose? And why do I think I'm being honest by phrasing this as a question?

* tikkun olam: the idea that each of us has a responsibility to work within the world for healing, to create rather than destroy, to rebuild and restore that which is broken.

Tuesday, September 05, 2006

oh me, oh my

I know there was something else that I meant to write about, but today has driven it right out of my head. (Something about kitchens, no doubt.)

Did I say 'my head?' Who the hell cares about my head? Listen, o readers, as I sing the tale of the Eldest's head.

On Saturday, the father didst perforate his firstborn, searching for a new vein. The factor was given, the clotting commenced and lo, it was good.

On Sunday, the child scaled fantastic heights in search of some toy, quickly forgotten in the salmon-leap of a hardwood clock, which introduced itself, impolitely, to the side of a young skull. The clock, astonished at its own temerity, fell to the ground, where the force of its leap split it into three. The child, equally astonished, was soothed with icepacks and maternal knuckles.

On Monday, the family didst wander, arguing, in the wilds of Weston where, unbeknownst to them, part of a nature preserve had been sold off. They stumbled upon a deck chair and sprinkler system, forcing them to acknowledge the gross error of their guide, one Tougias by name. Having roundly disdained that Tougias, the family repaired to Lands End, where the Eldest proceeded to split open his temper, to match his scalp. An unknown voice issued forth from his mouth, and his mother didst wonder and worry.

On Tuesday, the Eldest didst explode once more, and his parents conferred regarding his explosions and the clock's leap. And so the family did consult with and voyage towards the halls of modern medicine...

There comes a time when you accept that your time is no longer your own. There may even come a time when you embrace the familial chaos that is truly in charge, and attempt to adapt to it, rather than the other way around. Most days are not like that - for me, anyway. But on days when you absolutely, positively must go to the ER, if only to find out if the person spewing fury is your child or someone alarmingly else, well, on those days the urge is to mutter things like 'screw it,' and then feel immensely relieved. For this one day, it doesn't matter if you do the dishes, make the phone calls, roar at unscrupulous medical billing idiots. All you have to do today is make sure that your kids are in as good shape or better at the end of the day as they were at the beginning. Fine - I can do that.

For kid with hemophilia, the big fear is a head bleed. Yes, bleeding into the joints will screw up their joints, and yes, muscle bleeds can do fun damage - but usually you can catch all of that quickly enough to heal it, and kids heal well, given the chance. But pressure on the brain? It's the hemo-mommy nightmare, beaten only by the reality of inhibitors, and kids for whom the clotting medicines don't work. Mine was one of those, but not anymore. We hope.

So when I saw behavioral changes, so dramatic and so coincidentally right after a nice healthy wallop to the head, I had to wonder. There were no other neurological signs of a head bleed (nausea, headache, change in appetite, difficulty with fine/gross motor skills), but there was this. Is this a problem for parents or medicine? We didn't know. But the pattern led us to call and ask the question, and the hematologists to call us in for a head CT scan.

Yes, CT scan, and oh yes we've had them before. Thirteen, to be precise. All done with child-level radiation (apparently that makes a difference) and done despite that these CTs only catch about 5% of microbleeds. But they'll show a big nasty bleed in a heartbeat, and the rest you treat for, just in case. And no, the kid doesn't glow in the dark. Wait - lemme check - um, no. Still not.

Typically, we'd sedated the Eldest for this sort of thing. The scanner is loud, the kid is gently held still and verbally instructed to be absolutely, completely still. Can't even suck his thumb for this, so most self-soothing methods are pretty useless. Add in the distress of whatever sent you to the ER, plus the displacement and shattering of routine thanks to being in the ER, and well, a CT could very well be the last straw. But now he's four and a crucial half, and I rather thought he could choose.

I laid it out for him, and he chose to stay awake. We talked about the scanner, what it looked like, what it would be like. The nurse helped, showing him how to lay flat on the gurney (we used the treatment room bed for rehearsal), turning down the lights and the nurse and I made the thumping, whirring noises of the scanner. The Eldest decided to pretend he was a spaceman-engineer, with "eight bags of air on my back!" Off to fix some poor space shuttle.

Out in the hall, the nurse looked at me searchingly. "D'you think he can do it?" I shrugged. "Worth a try," I said, noncommittally. "I think he just might," she mused. "He's something, that kid. Clearly you really talk to him, share thoughts with him." Loving hearing my kid praised, I resisted the urge to shuffle my feet and say 'aw, shucks, ma'm.' "Well," I said," I do tend to talk an awful lot..."

And off we went, accompanied by a radiology tech named Faith, who was absolutely willing to extend some to us. Once in the room, the Eldest looked uncertain. I offered to lie on the gurney first, and Faith obligingly moved me up, down, back and forth. I giggled, and invited the Eldest to join me. He, however, looked concerned and expressed a need for the bathroom. One pee-run later, we gave it another shot.

It was one of those experiences where I feel myself working at my best, and am crawlingly grateful for this small, determined, trusting little person with whom I've been partnered. He was scared, oh yes, I could see his face beginning to scrunch, as if he wanted to cry. I sat on the gurney facing him, my hands under his hands, and reminding him that my knuckles were there and ready to be rubbed for comfort (yes, comfort and no, I don't really understand why it works, either). And I told him a story.

We told the epic saga of the spaceman engineer, who had come to help a space shuttle with engine trouble. I timed the discussion of the engines to suit the roaring of the scanner, reshaping his fears into something fun, even silly (although laughing was verboten, alas). The space shuttle was trying to deliver a crucial load of feijoas to Neptune, where the people were sadly all out of feijoas, and were anxiously awaiting a delivery. Could the spaceman engineer fix the engine and get the shuttle on it's way? Apparently, he could. The Eldest listened to the story, and politely didn't comment on it's rather abrupt ending. But then again, neither of us wanted to hang around longer than necessary once the scan was done...

Oh, I was so proud. The technician was delighted, and Faith swooped up the Eldest for a gigantic hug, admiring and effusive. And oh, but I was grateful for the chance to reestablish that bond between us, the trust and partnership. In the mundanity of his life, that bond hasn't been needed, and it was sorely strained by the appearance of the babes. To have it back and shining is a thing we both needed.

And later, after a quick side trip and a polite request, I was also in possession of evidence that my child does indeed have a brain, even a working one - setting aside the evidence offered by his tendency towards mountain climbing...

oh, yes. And the scan was normal. Assuming it's correct (if it's wrong, well, the kid's floating in an internal sea of factor right now anyway), then that's the good news...the bad news is that we now need to do an exorcism.

Sunday, September 03, 2006

bon voyage, o auntie a!

two thoughts are chasing each other around in my head tonight, twining around each other until I can hardly separate them. But let me start happily, at least:

Tonight, we bid Auntie A good-bye. Initially named Almost-Auntie A, as she is as near to me as kin could be, by the end of the visit she was an outright Auntie, which tells you what a snobbish, exclusive bunch we are. After a week of aunite-dom, the Eldest informed her, solemnly, that he was 'really going to miss you a whole, big lot.' I am nearly certain that this isn't just because she produced a wonderful new book each day, and I'm hopeful that it isn't just because she was the alternate mother - the one who always had time to read a story, admire a line of marching trucks, or play the mysteriously named castle-ball.

She was right when she said that mothers are ridiculously easy to please - a week of unaccompanied showers and bathroom breaks has clearly done me some good. And given me the breathing space in which to see exactly where my discipline has turned into reflexive whip-cracking. I can see that now, and I am quiet enough in myself to try and do something about it. Thank you, dear A.

I'm delighted to say that we sent her off with a splendid dinner, wildly adapted from my new Indian cookery book. Here it is:

Nutmeg Potatoes (Aloo Jaiphalo), adapted from Indian Flavors by Marut Sikka, pg 22)
4 potatoes, unwashed but reasonably clean
4 Tb veg oil
1.5 tsp cumin seeds
1 in piece ginger root, chopped somewhat finely
.5 tsp coarse ground black pepper
.5 tsp nutmeg
.5 c water (or vegetable broth)
2-3 tsp lemon juice
2 Tb fresh cilantro (optional)

Cut the potatoes into thick rounds. Toss oil, cumin seeds, ginger into a deep frying pan, saute until seeds start making a popping sound. Add cilantro and potatoes, stir. Add salt, nutmeg, pepper, mix and then add water. Cover pan immediately and simmer on low heat for 20-25 minutes.
Add lemon juice, stirring gently. Serve warm.

Tofu and Tomato (adapted from Tamater Paneer Hyderabadi, Indian Tastes, pg 68)

1 block tofu, cut into squares (smaller than bite-size suited me)
handful dried gooseberries, soaked in boiling water (20 minutes? until soft), drained and cut up a bit (options: use dried cranberries instead)

Step One:
4 tsp veg oil
1.5 tsp cumin seeds
4 green cardamom pods
2 sticks cinnamon
onion, chopped
2 in piece ginger root, chopped
12 kaffir lime leaves
12 black peppercorns
2 tsp chili powder
2 c water
1.5 Tb cornflour
1 15-16 oz can diced tomatoes
1 dry pint cherry tomatoes, halved or quartered

Toss oil, cumin seeds, cardamom, cinnamon, onion, ginger into a pot, preferably nonstick. Saute until onion starts to brown. Add tomatoes, salt, lime leaves, peppercorns, chili powder. Stir. Add water, bring to a boil, the reduce heat. Stir in cornstarch, then let simmer for 20 minutes. Remove from heat, pour into a serving dish. Using the same pot, move to step two.

Step Two:
2 Tb veg oil
8 finely chopped garlic cloves
1 tsp black mustard seeds
.5 cup coconut milk (preferably the reduced-fat)

Saute garlic, mustard seeds in the oil until the seeds start popping. Add tomato sauce from step one, stir. Add cut up tofu, gooseberries and simmer briefly. Dump in coconut milk, bring to a boil and call it dinner.
This is food as I like to eat it. Rich with flavor, surprising, strong, delicate. Ah, happy happy me - and I have leftovers, if the partner man hasn't eaten it all while I type in my eyrie.

But I also have a thought, twisting and wriggling, no matter how hard I'm trying to ignore it: the babes, who plummeted off the weight charts a few months ago, has lifted himself to just under the 3rd percentile for weight. (Note: he began at the 50 %, and yes, I know that kids change their percentiles as they settle into their true niche. This is not, alas, that.) In the process, his eczema flared and the skin around his ears had begun to crack nastily. And he'd wake up, crying and scratching at his itchy face and ears, undoing what little good we'd managed in regards to sleep training.

A consultation with a homeopath and pediatrician later, I quietly began limiting the amount of corn and soy in his diet. Half a bag of Fritos, a miserable night and a horrific diaper rash the next day, and I removed corn almost entirely from his diet. One week later, I am sad to admit that the kid looks much better.

The ears are no longer cracked and oozing, he's not scraping desperately at his skin, and the eczema does not seem to be spreading. And I'm furious. How could we possibly manage without corn? Then again, we nearly did so tonight...but still.

I'm holding fire, but I can feel the irritation bubbling up, waiting for an excuse to turn into outrage. It is time to go back to the homeopath and to talk about NAET, a treatment option that she mentioned last time, and which our allergist did not pooh-pooh. Corn and eggs - that's what I'm wanting. With those, I could do so much...