comfort food

For whatever reason, there has been a barrage of people getting served from life's crap buffet. Clearly, the line monitors were taking a too-long coffee break, because hello? one at a time? All of which is why La Lump and I are making soup today. Thick, warming, meal-in-a-bowl soup.

This one, as a matter of fact. With Roman beans, as the Man has fallen in love with their meaty flavor - and the creaminess suits this dairy-free, quirky cousin of the classic potato-leek soup. Or, as my mum called it, vichyssoise.

I'll toss a salad into the bag for the various recipients, if I can. Parmesan crisps should be sent with the soup, if I'm doing it justice, but La Lump is whining about ACTually having to DO all THAT. Figures that I'd have a teenager growing in my wrist, complete with 'tude.

But that's okay. I have a date, and La Lump will get her fine self kicked to a biohazard waste disposal bin, after a brief layover with the cytology lab techs. Cue the evil laughter.

lumpy bumpies

It came as no surprise to the Man, when I realized how much I love baking my own bread. You like making things, he pointed out. Yarn, flour, gardens, whatever. You like working with your hands. Which makes it particularly irksome to realize that my hands have been stepping out with some giant cell dudes. And lumpifying. 

It's never occurred to me to think of my hands as being aesthetic. Unless it's my aesthetic, which turns firmly on the functional. And oh, dangit - the quirky. Which occasionally includes la lumpy. 

Introducing, La Lump.

I bring this post-biopsy, and post-frozen scared someone find me a fucking hole to stick my head into, because the ostrich and sand dune combination is looking pretty damned good right now. Yes, it's benign. Giant cell tumor, but benign. It's also wrapped around and through my wrist, which isn't so benign, but it's a heck of a far shout from malignant. And it's like hemophilia, in that I keep waiting for someone to say, ha ha, just kidding - there's really nothing going on here, but they don't.

Which makes it all the more symmetrical, perhaps, that La Lump has sparked the hemophilia question. Stoked it, really, into a fierce light. And to clarify? not the Eldest's hemophilia. Mine.

So, one day, La Lump, the Eldest and I go to the grocery store. I grab a basket, and we pick up some cherry tomatoes, dill, a bag of tortilla chips, a smallish bottle of olive oil and some fish. Not very heavy, even with the Eldest dropping his jacket on top. Both hands on the basket, I stroll with the Eldest, enjoying chattering with the kid. La Lump hissed at us both. Bitch.

At our front door, I fumbled my keys. Your hand looks funny, Mum, the kid told me. Not La Lump funny - this we'd gotten used to. La Poof funny. La Bleed funny.

The details don't really matter after that, except to note that we were walking in with the last minute groceries  for dinner with a dear friend, his tiny lovely baby, and grandparents. And that the Man had to do nearly all of the cooking himself, with me supervising. It's hard to get more heroic than putting up with my ideas of supervision. And the guests, sweet and funny and absolutely wonderful sports, helping with the salad, the lentils, the calm return of the undercooked fish to the oven, and of course, the baby.

And ice. Ice, ice, ice, days of ice. Don't touch the arm, don't lower it past heart-height, don't oh don't jar it even if you are small and loving and just want your mama to feel better, because holy shit that hurts.  Days of sitting and breathing inside the cool dark of my skull, exhaling tension, sitting on the floor and waiting for that moment of peace to come. Sitting with the pain, accepting a newly visceral understanding of how much a joint bleed can hurt. And how little I understand my own bleeding.

It was two days before the Hemophilia Treatment Center's NP marched me over to the fridge, and told me to use some DDAVP. Now. And reassessed (with my honest help) her opinion of my reliability as a person with a bleeding disorder. You have to understand it in order to manage it, and I don't get this hemo-girl thing.

Thought I did. Don't. Or, not enough.


Let's start at the basics:
 A genetic carrier (or just carrier), is a person or other organism that has inherited a genetic trait or mutation, but who does not display that trait or show symptoms of the disease. They are, however, able to pass the gene onto their offspring, who may then express the gene. Wikipedia then goes on to offer Queen Victoria's daughters as the classic examples for carriers of a gene. But it looks like a revision is in order for this wiki.


Coagulation specialists already knew that looking at a carrier's specific mutation could help them predict the severity of the condition for a future (or in utero) child with the gene. But what about the carriers themselves? Dr. Marion Koerper, when I asked, explained that the severity of symptoms is not consistent between mother and daughter. You could check every carrier's factor 8 levels, but, Koerper warns, you'd have to check them at their lowest: the day after the woman's period ends.  And, it seems, you must check.

According to a study published in Haemophilia (March 2011), a carrier can have 40-80%  factor 8 levels (fVIII) and still be at a higher risk for bleeding than someone with the same level of fVIII - who doesn't have the hemophilia A mutation. Danielle Nance discussed the study with HemAware.  That result wasn’t something we expected, Nance told HemAware. We always knew that if a woman’s factor VIII level was below 30% or 35%, she had an increased chance of bleeding. Now it looks like even if the factor level is in the normal range, a woman could have an increased risk of bleeding if she has a severe mutation. The researchers found a rough correlation between the genotype and the woman's bleeding pattern, sparking a lovely controversy: do you test the woman for her child's sake? Or, for her own? Do you test the child for the woman she will be? 


I wonder what you think.


More immediate is the challenge for the hemophilia centers. A rose is a rose is a rose, except when the insurance companies deny coverage for testing and care for a carrier. As dictated by language alone, symptomatic or otherwise, a carrier can only be getting unnecessary care.  Koerper is very clear about this. We have to be very careful about our terms, she told a roomful of women recently. By definition, a carrier doesn't have symptoms. And it doesn't matter if you call someone a 'symptomatic carrier'  - if you say 'carrier,' then that woman isn't getting treated. And we all watched her think about flinging up her hands.   

I understand learning curves. And I understand catalysts. This one, happily, will soon be leaving me. La Lump has met La Surgeon, and he is planning to spend some time peeling her off of the various necessary bits of my wrist and arm. We've discussed our mutual agreement that it would be better to risk recurrence than to oh, nick an artery or damage a tendon.  But he is very very good at his art, and I have hopes that this will be good-bye for the lumpy bumpies, and La's sniggering, sneering shove at hemophilia. Pushing it center stage, where it should not be. And sparking a wonderful, honest conversation with the Eldest about pain - that much friggin' pain - that isn't politely confined to a predictable event, like oh, childbirth.

Still, I did win the kiss me, I'm a mutant t-shirt, and perhaps earned it better than I'd realized. Hemophilia can go back to lurking, but now that it's taken my hands and held them - and me - in place, I owe it a clear, careful look. And yes, some respect. So, I made an appointment.

Tell me, I said to the hemophilia NP, pointing at a dark purple bruise. Don't know where it came from, but I've had this for almost a week.  She nodded, and bent her head to look. It's firm, the skin arcing gently over the pooled blood. A dull, ignorable ache under the skin. Tell me if this happens to other people. 

bananagrammatics

a glimpse into the Eldest's autumn reading list, courtesy of the wonderful Evan, at the main branch of the Cambridge Public Library. I note, gratefully, that he didn't include anything about earthworms, or the build-your-own spaceship books.

But then again, the game's not over yet.

oh, those crazy kids

No, not mine - the ones at Columbia. They built this crazy slinky meets seesaw, with a dash of park bench and super duper kid pirate cave. I very very rarely regret leaving NYC, but if the boys and girls at Columbia are letting people come and play with this one - well. I might just consider a faint wistfulness.


Mostly, though, I want one of those for my living room.

sitting next to me, nursing his third bleed of the month, the Eldest nods a decisive approval. Oh, yah.

no, I am *not* here

So, if I did a "no, really, I'm still alive, see?" post then I'd feel all kinds of obliged to actually catch up on things that I didn't write about. The hell with that, I have dishes to wash. Instead, let's just jump in.

oh. yes, I probably should have mentioned something about the muddy puddle. if its any comfort, the Giggles had already dipped an investigative sneaker in, considered the result, and then tromped firmly on through. (No, really. Go check the playground on the kid's school - you can't miss it.)

Meander done. Next?

Right. Next is the bit where I get all fired up over the prescription drug shortages. Or maybe the enthusiastic gray market that is making hay from the shortages. But it's happened before (wait, that makes it okay?) so there's no shock here. Just tired familiarity.

When the Eldest was born, there was a shortage of recombinant factor VIII. (Translation: not-from-human clotting protein needed for hemophilia A.) When a new baby popped up with hemophilia, we all went hunting in the hospital pharmacy for a recombinant brand that made doses in small enough sizes. If you found one, hooray! A new baby got a new era drug, and you stuck with that pharma company until the market (ptooie, ptooie) opened up and gave you options. Some day.

And yeah, there was a gray market. Biological injectibles were bought or stolen by goodness knows who, kept under goodness knows what conditions, and then sold at eeeyikes prices. Of course, if you don't keep a biological at the right temperature, it will lose potency - but hey. There's an excellent book about the pharma grey market by this clever lady, here. For those of you who cannot be bothered to amazon it, Katherine Egan's book is described - better yet, summarized - in an article found here.

Note the date. This is old, old news. Or is it? According to a sensibly written report for the HHS, it's an ongoing issue. Which is perhaps less exciting than the fresh, horrified headlines about shortages of life-saving cancer drugs - by contrast, we Imperfects are among the very few who care about the shortage of the faux old feet flavored drug (aka Amicar), our fellow bruisers who care about the shortages of desmopressin (used to treat vWD). And, were I to blithely go ahead and let an orthopedist remove large, inopportune chunks of my wrist, I'd certainly care a whole helluva lot as to whether the hospital was buying my diazepam from the back of some guy's truck.  (See Egan to find out if I'm kidding about the truck.)

So, hooray for Obama's kick in the pants to oh, everybody and the FDA. A hearty waving o' the pom poms to the FBI for looking into the current gray market, and offering that information to the public. Good to know.  And a heartfelt three cheers for Rep. Elijah Cummings, who is pushing the issue in Congress. Apparently, he is doing so after receiving a letter from the mother of a child affected by the shortages, thereby proving that he not only reads his mail (or hires staffers with a nose for the important issue), he also pays attention. And oh - don't overlook this, because it's got to cost him potential pharma campaign funds - acts.

Good for you, Rep. Cummings!  

hungry thoughts

Today is the 9th of Av, a day of fasting and mourning for the lost centers of Jewish holiness. There's a whole constellation of concepts that go with that, but I'm going to point you to Eicha and leave it there. I'm too hungry to do the subject justice. Instead, all I can think about (4.08 pm, fast ends and 8.56? 8.57 pm? so that's what, 4 hours and 49 minutes to go - unless it's 46 minutes and I should really look that up which means that if I can get through feeding the kids dinner then it ice cream a couple of hours later and damn, my stomach is gnawing on my  collarbones) is food.

We've been eating peanut butter around here, every since the Eldest was veeerrrry carefully fed pb in a hospital setting, surrounded by a group of people who were only the teeniest bit disappointed when nothing happened. As it happens, when you don't grow up with peanut butter, it's a tough sell. Sticky on the roof of the mouth, a sort of strong taste that you've already been taught is dangerous, and now? now you should forget that and fall in love? Instantly? Um. Guesses as to how this goes?

It might help if one's mother lit up more at the idea of pb&j. But I'm frankly a little ooked by the idea, and me, I'm holding out for the barley allergy to go. I want my Vegemite. Peanut butter + toasted sesame oil, soy sauce, a leetle vinegar and a bunch of garlic, maybe some pepper and water and stir...now, you are talking. So, talk to me about peanut butter when the sesame allergy goes.

Clearly, now that we've kicked a couple of allergies, I'm turning into the demanding type. Either that, or peanut butter has simply never been all that central to my world. Until we discovered PB&J cookies. Gluten free, egg free, and nut free (if you can find a safely nut free peanut butter), these are delish. And pretty darned quick, too.

Our Imperfect thanks to rae1954 and eHow for the (slightly adapted) recipe:

PB& J cookies

1 cup peanut butter (smooth)
1 cup sugar
1 Tb soy flour (or other high protein flour)
2 Tb water, plus more as needed to get a workable consistency.
Jam of choice

Preheat oven to 350F. Dump all ingredients (except jam) in a mixing bowl. Mix, adding water until the result will form a ball when rolled between your palms. Cover a cookie sheet with baking parchment, or spray with cooking spray.

Drop balls of dough (roughly 1 coffee scoop, or 1/4th cup) onto cookies sheet. Use your thumb to make an indentation in each. Invite the kids to drip a wee bit of jam into each thumbprint, and take photos.

Bake 16-18 minutes, until slightly browned. Cool on cookie sheet for 5 minutes before transferring to a cooling rack. Consider the possibility that PB goes with a slightly caramelized J, and that other versions of this lovely combination are worth tolerating - conceptually, if not in practice. They are, after all, not that far from a fairly delicious truth.

strategic summer snarling

My goal for this month is to wear a mildly humorous, distinctly wry face when asked, so, how's the summer going? Last month, I managed a less than slightly desperate look, and when asked, offered practical demonstrations. Or loan of small children. Over the course of the month, the Giggles learned what his older brother already knew: when the mama has that wild look in the maternal eye, it's a really bad time for small Lego to be underfoot. So tidy up. Tidy it all up.

It is actually possible that the best parenting that I did all month involved time-ins. The Eldest was fined with three days of time-in (a.k.a. helping the mama), and learned to stack dishwashers. His mama-placating strategies took a big jump forward when he shared notes with his fellow inmate, and learned that the Giggles had been instructed in the art of cleaning the dryer's lint filter.

Together, they made a potent team. 

The lads still failed to understand the whole morning, get up and brush teeth and put on clothes business, but hey, they can splash in every single puddle in our perma-construction site of a block. Because they can do the laundry. And they can now eat their weight in fruit, if they like, with a solid 42% childsworth of cheese and corn thins. Because they can wash up.

Well, they can. And will, if there's sufficiently terrifying maternal incentive in front of them. 

i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. i will use my powers for good. starting right after dinner.

aim? ball seventeen?

Note to self: throwing a ball at a small person's bat is a lot harder than it looks. But hey, it's a heckuva lot of fun to say, authoritatively, okay, kiddo. Now, you have to keep an eye on the ball...


Heh. As if I know anything about the subject.

Pax! Pax!

enter, the peas.

 Three types of them, to be precise - but the specifics of peadom were irrelevant next to the joy of the boy collecting stuff. Sigh.

No, wait - I lie. In truth, we love our jaunts out to the farm, especially this lovely local one. Getting ourselves out of the house takes a crack bunch of sheepdogs right now, and occasionally leaves me hoarse and gasping words that I really would rather the boys didn't learn. But then we're out, and a zip down the road from this quiet greenness, a wisely shaded picnic table, and this:

 In the field, the boys stop grumping about having to brush their teeth, there is no Lego to divert them to absolutely essential something that must come before changing out of their jammies. And I try not to gape at the idea that all of this joyful, careful focus is happening over - peas.

Yep. Snap peas, sugar peas, snow peas - and now? our peas.

What on earth will I do with them all?

did someone say go?

Somehow, speed and this oh my gawd, it be hot doesn't seem to go together in my eyes - but the boys seem to operate according to an entirely different set of specs. Which would explain, come to think of it, oh so much.

A couple of months ago, we were given a hand-me-down bike. Gig fell in love with it, mourned when it was too big, and reluctantly allowed the Eldest to sit on it. Briefly. When removed from the bike, the Eldest screeched bloody murder - the bike was too tall for him, also.

The Man shook his head. Maybe if we took it to a bike shop? 


Upstairs, the boys squabbled over the blue bike - no, the purple! - the one with the bell! - but can't Mum move the bell? - oh, yeah, but I want the one without the training wheels - oh, me too! said his sibling, gloriously indifferent to his lack of two-wheeled experience. Me, too, he repeated. Firmly.

1.2 inches of seat adjustment later, and we had ourselves some speed. Irregular and slightly scraped at first, but then? Then we had this:

And, to be fair, they did slow down so that my poor wee camera could capture them.

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

Feeding the speed demons requires an equally speedy dinner, because while they might be fast on the road, the lads flag quickly when its time to come inside. But this salmon and salad meal gets thrown together in about 20 minutes, with a little advance prep.

garlic, with a little yogurt & dill sauce:

adapted from (no joke) Garlic, Garlic, Garlic - credit for the adaptation goes to one of our favorite children's librarians. 

1 1/2 cups plain yogurt

1/3 cup fresh lemon juice

2 fat cloves garlic, pressed or minced

freshly ground pepper

1 tsp dried oregano, or 1/2 tsp fresh

1 big handful chopped dill

optional: a sprinkle of mint

Mix thoroughly, and set aside. Covered, the sauce should keep in the refrigerator for a week.

Meanwhile....take a slab of salmon, drizzle with olive oil, salt, freshly ground black pepper. Drizzle a bit of maple syrup on top. Grill or broil until it flakes gently in the middle.

Into a bowl, toss a whatever is in the fridge salad. Yesterday, this salad looked like this:

1/2 of a small Napa cabbage, thinly sliced

a shred of a radiccio

a handful of lettuce from our garden

thin strips of apples

2 scallions, sliced

a big spoonful of green olives

1 underripe mango, sliced into strips

Toss in the bowl, along with a dressing. Yesterday, our dressing was: olive oil (drizzle on salad, toss until salad is coated), salt, pepper, garlic powder (toss again, until spices are distributed). A spritz or two of Bragg's (a recommendation from a wise friend, whose children eat kale - think of it, kale! - with Bragg's sprayed on top), a drizzle of honey (1 Tb?) and a tablespoon or so of vinegar.

Serve with a bowl of leftover rice, or some boiled potatoes - preferably the wonderfully lumpy ones that Gig picked out at the market, and then was only reluctantly persuaded to share. The slightly charred, caramelized flavors of the fish match up nicely with the slightly sweet salad. There might be more subtle ways to balance this gentle, summery sweetness, but I'm not a subtle person. I like the coolness and the garlicky bite of the yogurt sauce, and I know that tomorrow, it'll be lovely with just the boiled potatoes, a pickle or two, and a peach. The day after, I'll probably use the sauce as a salad dressing...but I'll wait a couple of days after that, before I use it as a dipping sauce for some pan-fried tilapia. 

And then? peas.

best. QOL. evah.

Nowadays, it seems as if children's mental health is climbing onto the medical radar, and spreading until it gunks up the wipers. As it should - too many kids, saith my not at all educated self, are left to struggle with depression and mental illness. People should find these kids and help them, and no, I'm not going to swear to add emphasis to the statement. They just should.

With that, of course, comes the QOL form - the quality of life form.

Is your child happy? sad? in trouble at school? do they talk about anxiety? do they say that they feel down? do you think that they are anxious? do you think that they are happy? sad? in trouble at school? 

I have an amazing urge to write it depends all over these things, but I do appreciate their significance. Mental illness happens to all kids - the ones with the chronic diagnoses are simply best poised to get screened over and over. Which is perhaps unfair. Still, I do appreciate the pop of studies by people are realizing that hello? chronic illness is actually an additional thing to ask of a kid. And that kids' response to illness is unpredictable. QOL studies - and I'm too tired to go find you links, but look up QOL and pediatric cancer, resilience, etc on pubmed and read carefully. Especially, read the bit about how parents tend to rate their kids as unhappier than the kids say they are.

I love the bit where the researchers think carefully about how to prove that the kids aren't lying. Or so extraordinarily socially adept that they know to say that they're just fine, as the Eldest did, when asked by doctors doing their morning rounds.

How are you feeling this morning, kiddo?
The Eldest summoned a big smile and bright eyes. Oh, just fine.
Hey, said the doc du jour, that's great!
Yes, said the Eldest with a degree of satisfaction. So? Can I go home now?


Truly, the doctor should not have been surprised. Happily for him, he joined the rest of us in laughing our asses off while the Eldest looked on, somewhat hurt.

And thus, the QOL.

Which is how the Man and I found ourselves looking at the following question: Does your child get into more trouble at home than his sibling?


And our answer: You should meet the sibling.

2.25 miles plus what?

The 4th of July is a big deal around here, so much so that the Man and the kids and I decided to celebrate by admiring roughly 2.25 miles of our municipal water supply. It's a nice trot around a pretty bit of water, on a very nice blacktop with lots of dogs to pet. Who would happily, btw, share your lunch with you.

It was the perfect day for a stroll around the water, with the sunshine and the 90 degree heat and the children bounding along. Also? The city had made the paths really pretty, with the occasional butterfly meadow.

The bees appreciated it too, although my look, kids! Do you see the two kinds of bees? Come closer - I'll show you which one is more likely to sting didn't go over well. Oddly. By contrast, our stop at the dogs-get-wet-here spot was epic, and genre alone should explain why I couldn't possibly give you any real sort of sketch as to why, or what happened, but there were wet dogs and sticks and small boys and dogs' people who showed the small boys how to throw the sticks. Also, that you should show the sticks to the dogs first. And that once you've shown the dog the stick, it's a good idea to throw it quickly - especially if the dogs (uniformly) outweigh you. As the Eldest ruefully observed.

It doesn't help that I'm short.


No, I thought. But it does help that you - both of you, actually - are literally willing to get up after you've been knocked down, and try again. Lucky for the kids, their parents are the same sort - although for the adults, it might be less pluck than bone-headed stubbornness.

That's poison ivy. See? Leaves of three, the newer, smaller ones are reddish. Don't touch it  - it'll make you really, really itchy.


A couple of pairs of small boy eyes grow round, solemn . Oh. 


That's poison ivy. See? There on the edge of the track? You were about to walk into it, and that's not going to be fun. Remember how itchy you were after we went to that park? 


OH! No, I didn't like that. I'll stay away from the ivy.


Hey, honey? See the poison ivy right there? You were about to step into it. Remember how it's itchy?


Gosh, that poison ivy is just lining the entire path. Better walk in the middle, so that if you stray to one side, you'll still have time to move away again.


Um. Notice where you are? No? Okay, what do you see there?


Hey, look at that sign! It says that there's poison ivy here. Wonder why they didn't hang up more of those - oh, kid - you were about to walk right into the poison ivaaargh.


There is a special sort of hell that describes this, but all I can say is: 2.25 miles of track. 9 miles of poison ivy (it was on both sides of the track, we had two kids, so you do the math), and where in hell is the learning curve, huh? Right now, all I'm getting is Zeno's paradox.

The Giggles' ability to read the Poison Ivy Runs Rampant sign? Not as comforting as one might hope. Somewhat mocking, in a rather cosmic karma, laughing behind its hand sort of way. Or possibly just strolling right up and prodding me in the ribs. But, MO-OM, said a child, it would help if you REMINDED me. You know, sometimes I need a reminder. And sometimes, I need two or three or five reminders. I inhaled. Forgot to exhale. Focussed on figuring out the square root of the number that I was counting to.

You had 2.25 miles worth of reminders! 


Oh. said the child. That's a lot of reminders. I see your point now. But, he went on thoughtfully, you know, they don't have poison ivy on the planet Emeraldia. Or, rather, they do, but nobody's getting itched by it. I should ask them why not and then sell the cure to everyone!


And just like that? We were half-way to the end of the curve.

Math sucks.

an unfolding deliciousness

I found them, of course, right beforehand.

Tucked into a bin next to some sawdusty roots, a raggedy collection of twigs were sprouting in a somewhat forlorn corner of the fruit-and-veggie store. Shopping carts whisked past, heading for the more promising broccoli, leeks and (barely deserving the discount) seconds. On the other hand, how anyone missed the burst of color in the sawdust and twig corner? I can't imagine.

Lychees.

I don't know how you'd pronounce them - my ligh-cheeze has never been quite right, but who has time to compare notes on pronounciation when that is dancing a delicate, swooping samba on the tastebuds? Liquid, apple and a light sweetness, with a little pineapple? or quince, maybe? definitely a tang that's halfway between a really aromatic Meyer lemon and a regular lemon, and oh, too much of my childhood for me to really taste the thing.

I think.

Judging from the looks on the boys' faces when they carefully divide them up, though, I might not be so far off. The boys' precision is overlaid by a sense of ruthless logic: if I'm really, really fair, then I'll get as many lychees as the other guy.  Unless mum's not watching, in which case..? um. Or not.

And for the Man, it's one more oddity in a pantheon of edible oddities that he's learned to enjoy. An unfolding of flavors in the mouth, a discovery of unexpected pleasures - yep. It's really rather the perfect metaphor for a rather extravagantly numbered anniversary. Even if I did have to work the image a bit too hard to make it fit, well, hell. There's a bag of lychees in my fridge. Get here before they're all gone, and I'll let you see for yourself.

Unless we eat them all, the Man and I, sitting at our table in that most private of restaurants, with the candlelight flickering. And the kids, hopefully cooperatively asleep, having eaten their own bag of edible yum earlier that night...

Wishing us another many, many lots of the lumpy bumpy delish, love. So glad to have you with me for the road thus far, and I promise to share very, very fairly the deliciousness that comes...

so, in case you missed it? summer

of course, if you are at all unclear on the subject, you most definitely do not live at my house. Here, the mornings be loud and the afternoons be bitchy, and periodically the Eldest will wander over and explain that he is oh, so very tired. You know, he'll say confidingly, the Gigs* woke me up an hour - no, two hours - early this morning. Which is to say that, his brother woke up at his internally cuckoo-clocked hour of 6:something wee am, rather than letting the Eldest snooze until 7ish.

My parenting position on this sort of thing is, officially, that there are many reasons that it can suck to be the older child, and this might be one of them. Also, that the Eldest spent oh, five? years requiring us to make him the center of our attention - and gently accepting mid-field, slightly off-center. The morning adoration and play with me! It's a day! Let's play with something FUN! from his sibling is just deserts.



 So, yes. Summer. It started gently, with the Eldest transforming into lo! a fourth grader. Don't ask me what it means, except that I'm pretty sure that there's a growth spurt in there somewhere. Eventually. Also? A sudden, horrified awareness that if someone makes trouble, the mature, sensible fourth grader might be part of a group held responsible. Hm.

Shortly his mother stopped smirking in corners where she thought he couldn't see, the smaller one dusted off his hands, was offered and solemnly wielded the rose-shaped light saber of the Padawan, graduating to apprentice Jediship. (or some such) And I'm going to hold the grin in my tone here, but you know that it was a soggy occasion.

The Preschool of Wonders was wise enough not to equip their graduates with lightsabers - they gave them kiddush cups, instead. Armed with a nice bit of Judaica, the kidlets trotted happily off after a slightly adapted "Tick, Tock" song, wondering why that last line had come with a sudden round of adult mucus. They were, after all, going to see everyone on Visit Days, right?

::sniff::

With that taken care of, it was time to - well, to anything. The boys began with aerodynamics, 

 paused for a bit of whoop!

and went on to figure out how they could conquer the world.

And if you hadn't noticed, I suspect that I haven't been blogging nearly enough. Trust me - they did.


* Gigs, along with Trig and Gigabyte are a variety of names that we use for the really no longer toddling Toddles. For obvious, Palinesque reasons, I'm going to eschew the lovely Trig. Let's see if Gigs works for us - and your opinion is most welcome. The name is, of course, short for the Giggles.

morning improbable

go go go go shit stubbed -ow-fmfrikkintoe- um. Hi, honey.


The Toddles walked in slowly, meditatively. Also? pajamaedly.

Um, kid? It's morning. Time to get going for the day. I point at his pile of day clothes, sitting in the hallowed pile o' day clothes spot. He doesn't blink. Also? doesn't turn around.

Yes. I know. The kid flops down on the bed, his expression still serene, still relaxed. But I stopped the clock. 


I blink. He clarifies, time is standing still now.


Something in my morning routine knife pleats, then crumbles. Side by side, we stare at a line of light, threatening to creep across the ceiling. I could get to like this, I say, sleepily.


We pause, sinking into the stillness and inertia.

Mom! Mom! We have to go in seventeen minutes! the Eldest shrieks, running into the room. I turn my head to look at his brother, who doesn't have the grace to look sheepish.

I forgot to tell you, he says, calmly, I started it up again.

okay, so your cell phone can pop corn. Anything else?

But not so much tumors, says Tara Parker-Pope. Well, maybe gliomas - but they're rare. Um.

Still, your cellphone can make you pop a rash, thanks to the nickel content. (Click here for the article in CMAJ)

Indeed, says my jawline. We knew that.

Roughly 1 in 5 women are allergic to nickel, and a mere 3% men. The allergy has some deeply challenging and distressing effects, such as limiting the use of jewelry to the seriously expensive, low-nickel content stuff. Unless, of course, you have a loving and thoughtful spouse, who is willing to bring you joy and give love - to the budget - by hunting around for nickel-free, gold-free options.

I joke, of course, but you should have heard me swearing at my cell last summer. And itching.

For more on nickel-free cell phones (or mostly nickel-free), try this. And if you are wondering whether you are allergic, talk to your doc. Who might just do what mine did, oh, lo these decades ago, and tape an old nickel to your arm.

post-scoop, or bringing back the dairy at BCH

Many thanks to those of you who emailed me with your thoughts - and wishes - regarding the Eldest's reintroduction to dairy. (cheese-cheese-cheesegimmecheese-ooh, ice creeeeeeeeeeeeeeamcheese) Yes, other tolerizing efforts are going on around the nation, and yes, right here in MA.

At Boston Children's Hospital, in fact. We were not part of this study, but you can read - or watch! more about the BCH clinical trial here, or watch Dr. Lynda Schneider explain it:

We're familiar with Dr. Schneider as the doc who didn't laugh during one of the Eldest's food challenges. The kid, tired of being asked to yank up his shirt every quarter-hour (to check for hives), decorated himself. In green marker. He put one dot over a middling high rib, another on the matching rib, a line downwards, and a flat, curving line just below the belly button. It looked roughly like this:   :-) His nurse was nearly 8 months pregnant, and laughed herself silly. It was a whole lotta laughter - but Dr. Schneider, alas, didn't find it infectious. And yet, listening to her in this video, you can see that even if she doesn't get the Eldest's sense of humor, she does understand something about what food allergies can do to a family. Good for you, Dr. Schneider!

For more of this series, you can watch Robyn Nasuti demonstrate the impact of a food allergic kid (or two) on the family food budget.  I was struck by Robyn Nasuti's willingness to cook multiple meals for her children. It's not an effort that I could sustain. The amount of time involved in preparing this individualized menu must be enormous, and how one maintains an identity outside of Allergy Mom - or a life outside of the kitchen? is beyond me. But different families make different choices, based on their different needs. Looking at the Nasutis' list of allergens, it's clear that their choices serve to keep their family going. And if three different dinners works to do that? well, then, three dinners it is.

In another clip, Ming Tsai, chef and father of an allergic child, talk about his efforts to educate others, and life with his allergic son. Tsai is wry, pragmatic, and I admire his ability to make things happen. The legislature that he helped craft - and see into law - offers a very basic education to folks working in restaurants. And, if you are wondering if that education is needed, I suggest watching the following clip about Brett's own efforts to educate his peers. The children's misunderstandings of food allergy - that the big 8 are "all of the allergies"   are common. Adults share these misunderstandings, and frankly, adults worry me more than the kids. Because, as we all learned from the parents of Edgewater, where the adults lead, kids follow.

Which makes us, some days, a living, mobile exhibit in the Things That Don't Happen museum. I told my wife that this allergy thing isn't really true, a lovely preschool dad - and educator - confided. Our son is lactose intolerant, but it's just not a big deal! So why are all of these people getting so upset about food allergies? He grinned and shrugged. I shrugged back, and arranged my face into something as far from wtf as possible.

Yeah, I nodded sagely. Never saw anything like this allergy stuff when I was a kid. Maybe someone had hayfever, but that was it. And now? I flung my hands up, EpiPens everywhere! We offered each other resigned, wry expressions.  If I hadn't seen the kids have the anaphylactic reactions, I said ruefully, and paused. Shook my head. I'd never have believed it.  

His head whipped around. Really? The anaphylaxis? I nodded, remembering.

Yeah. Never seen anything like it before it happened the first time, but it's pretty nasty. The kid starts to cough, vomit, then he's wheezing and his throat is closing. It's pretty bad.  So, yeah - I understand why parents get scared. It's a nasty thing, and it's easy to overprotect because it's so scary.


He blinked. You know, he said slowly, you are totally ruining my world view. 


I grinned.  I've heard that before. But if it helps? Lactose intolerance isn't an allergy. It's a missing enzyme that the body needs to break down the dairy. 

He flung up his hands, possibly in relief. Well! At least there's that. And trotted off to tell his wife.

do all the things??

With thanks to Hyperbole and a Half, and if you are scratching your head right now, stop and go read this. No, really - I'll wait.

So, if I have a fault as a parent (what, me fault? cue the cackling children), it's my love of projects. Oh, I do love me some projects, possibly seventeen or so at a time. So we trip off happily to the yarn store, and find yarn to teach the child crochet. Or fabric, because we're going to teach the child sewing. And, in each case, we shall create marvels, and it shall be good.

Also? It will take so long to complete some of these marvels, whose marvellousness will expand and origami itself as the child gains competence and understanding of the technical skills needed for the project, that (deep inhale, cripes this sentence is running amok) the kid will lose interest. And I will end up pushing, because inevitably, that project was to be their grandmother's 60th birthday present, or a friend's birthday present two freakin' years ago or, or, or.

And then we both hate the project, snarl at it and each other, and stomp off. Until the next project shows up.

(sigh)

And then we'll do it all over again. Because for a brief, shining moment early in the whole project trajectory, the kid has an idea. The mama backs him up. There's a special trip to the store that sells the supplies, and we romp through it like selective magpies, falling in love with all of the shiny possibilities. We collect endless project idea cards and handouts, and gaze at them and a possible future of creative wonderfulness. And I take pictures like this one, which leave me damp of eye and proud.

That's my grandmother's sewing machine, schlepped to the country by my mother, and used (infamously) to make the Eldest's siddur cover.  And that earnest face? Well, it don't help us kick the habit, is all I'm saying. In fact, it's rather irresistible...

Note for the perceptive:
The buddy-taping in the photo is more or less for the reason you think - at the time, the kid had a bleed in the joint of his middle finger. It was a beeyoutiful shade of reddish purple, and worthy of admiration at the dinner table. Which is, of course, where I noticed it and inquired as to cause, duration and all of those finicky details. My hand? asked the child, surprised. And looked. Oh! Wow! the Eldest exclaimed, and seemed honestly surprised. That hurts!  Across the table from him, I nearly choked on my tea. And it really is purple!

Sometimes, the hard part about being a parent is the urge to howl with laughter - and not being able to do anything of the sort.

Note the second:
The kid is, of course, fine. And my diaphragm is still recovering.

a pause for memory

It's no coincidence, I always think, that my grandmother's yahrzeit falls so near to Yom haShoah, the day of remembrance for the Holocaust. I should not have known her well - she lived impossibly far away for most of my childhood, and lived nearby only for a blinkingly short time. But in that blink? Well.

A teenaged trip to Poland, touring the concentration camps, because that's what you did with your gratingly idealist Jewish teen in the 80's, and for all I know, still do. The kids came home shocked, quieter, and many of us, angrier. Try gratingly idealist with an edge of historical angst? Yeah. Great. I came home stunned, and realizing for the first time that there were numbers large enough for me not to grasp, and that those were numbers of people.

I'd learned that, as it happens, in a warehouse of shoes.

Anger, I rather thought, was a reasonable response to the unimaginable. But my grandmother mourned such anger in her quiet, determined way, and had far more right to it than I. She wrote endless letters, trying to educate people about the Holocaust, teach a nuanced, thoughtful understanding of history. And she was not angry.

I missed that at first, awash in a collection of her oddities. She didn't bake cookies - she mashed bananas and sprinkled carob powder on them. She had a compost heap, and believed in rot. She ate this buggy, dirty lettuce, sold in coops (what the what the was a co-op? hell-o? seventies?) by people who didn't believe in deodorant. She treasured her friendship with a farmer person, who didn't believe in using modern fertiziliers because oh, maybe somehow they'd be bad for you. And oh yes, there were the herbal remedies. And her vegetarianism.  That chamomile tea will lighten brown hair, turning it nearly blonde - and didn't I want to try that? And wierd quirks about plastic in the microwave. What was there to understand? The woman was sweet but high, high, high on the seriously odd scale.

If she had one saving grace, teen-me thought, it was that she made the absolute best sandwiches ever. Thick, crusty, never seen the inside of a supermarket bread. With seeds and things in it. Slabs of avocado. Crunchy bits of sprouts which were sneakily delicious despite being so - so - hippie. And oh! that dirty lettuce, washed and crisp and melting. On that foundation, she wreaked a range of marvels. And, being the food slut that I am, I fell in love.

Years later, I'd be a parent, making decisions about organic food and whether a bit of ginger might settle a young-un's tum. But back then, I was a fuzzy teenager, chewing on a revelation and learning that individuals count. That the specifics of circumstance can rule you, and that unless I knew those specifics, I could not judge. I set that thought next to the impossible warehouse of shoes, and watched it. Chewed. Tried to undercut it with her narrative of the Warsaw ghetto uprising, machine guns and the camps. Swallowed.

Considered.

The sandwich - and the idea - settled deep inside me, both setting standards for which I owe her.

Decades after her death, I found myself in a produce store, staring at a rather lumpy looking bit of citrus. And then frozen, inhaling the distinctive smell of a sour orange, and remembering sun-rich fruit, and a farmer casually picking something perfectly ripe. Think about patience, thoughtfulness and smile at the orange in a way that made an older man tilt his head and watch me. Grin a little, even.

She echoes, my grandmother does.   And I miss her.

bloggish smirks - and a pause to be warned

Somehow, in a fit of former grad-studentness, I became a MedPage reader. A not-quite daily medical/science news update reader. MedPage added blogs at some point - I noticed at a far later point - and read them oh, whenever there's nothing good on in the world of medicine. Which is not so very often, honestly.

But sometimes, I do. And then I wonder at the indignation of someone like this, writing about the horrors of preschool pizza. What is she worried about? It's pizza! Do you know how much lousy, crunchy clinical trial food my kid ate to get his pizza?

This is a line in the sand, drawn by someone who knows that something dreadful lurks in the dunes. Another blogger helpfully explained: it gets worse. Kids eat the most amazing crap in schools, breaded and served up with a side of bread. Or potatoes. No, really. See? Count the number of green things, the second blogger suggested.

Or go for the gusto, and count the ways that you can make a celiac twitch.

And that, I realized, is the missing link between an allergy-friendly school and a school that really cannot be bothered. Or won't. When the monolith of the school menu is standing there, all sorted out and scheduled and packed with the carbs, salt, oils and proteins that kids will eat - and oh, but finding that magical, what they will eat is not to be sneezed - or hived - at, then who wants Change? even Change for Good Reasons?

We know how to feed them. Sort of. Until the allergy kid comes along, leaving shredded cafeteria menus in their legislatively enhanced wake.

Um. Well. Okay, so maybe we still can feed 'em. But from the looks of this menu, we figured out how to feed our kids back in, oh, 1940? And haven't really thought about it since.

Or maybe this has nothing to do with the immunocentric universe, and is really about something far more basic. Like the possibility that taking candy bars out of the school vending machines? A faint, feeble start. Stop picking on Snickers - think about this: for a massive number of school children, this is the central nutritional pillar in their world. Which, to my untutored eye, explains that.

Which is so depressing that I'm going to shut up now, and soothe myself with some Buffalo Bleu chips.