Saturday, May 30, 2009


she is gone.

Her face is white, waxy - still. My eyes keep coming back to it, looking for movement, the hundred and one little clues that we use to read the person inside. She's not there, of course.

But I'm still looking. The brain knows, the heart has begun to mourn, but the eyes are stubborn, holding their picket line with the corner of my self that is stomping it's foot and looking mutinous. A moment for inner toddlerism, a deep breath and I follow her bed downstairs to where the chevra kaddisha is waiting.

she is gone.

uncurling fingers

Every day, she inhabits her body more lightly.

A few days ago, she was fierce. Her moans became hums, quieting into sighs. She's silent now, lying quietly. It's been days since she opened her eyes and saw, days since she ate, since she drank, since she's worn her body with purpose.

When she opens her eyes now, they are red-rimmed and blank. I do not see her behind them. Her arm and hand move, lift, drop, her fingers seeking something and settling in my hand. But her fingers no longer curl around mine.

It's been days since she raised her hand and curved it around my neck, gently working her hand into my hair.

She barely breathes now, and there are long, stretched out times when she does not breathe at all. And yet, she is peaceful. The fierce insistence on breath, the need to live, with its knotted forehead and gripping hands has left. Two days ago, her feet began pointing stiffly to the window, as if marking a trail for her spirit to follow.

This is fierceness reworked into an inexorable acceptance. Or is this acceptance forced by inexorable reality? I can't tell. She's silent now, her lips closed on the explanations that none of us really need. She's let go of the bed rails, let go of our loving hands, and is letting go of her body. As her body quiets and her spirit disentangles itself from muscle, nerve and lung, something settles into place - I'd naively call it grace. It might, if I were more ruthless, be called absence. Or possibly, quiet.

We buzzed and hummed around her before, smoothing lotion on dry skin, massaging stiff muscles - meeting her needs where we could, inventing needs to fill our own. When she was fighting for breath, I found myself singing the boys' lullaby to her. It's the song I've sung in emergency rooms, during anaphylaxes, RSV, times when we struggled for breath and calm. Now, her quiet has no such need for music. And yet I'm humming again: od yavo shalom aleinu.

For her, peace has already come. Around her, the family is solemn and boisterous by turns, shooting hoops with the wrappers from lunch, rubbing her cold feet, wrapping an arm around a cousin's shoulder. They are holding vigil, and for a little while, I was able to join them.

But now it's time to come home.

Tuesday, May 26, 2009

pools and rushes

oh, the drama and the gentle melancholy of the post of yester-year. Or, at least, two days ago.

I am here. No sad, solemn faces greeted me at the airport, neither tragedies nor triumphs. And, faced with the reality of this slow wait, the rollercoaster of slow then terrifying is it now? then slow again, I can almost relax. I nearly know this pattern, know how time pools, then rushes past - all while I stand gaping, trying to parse, to understand, hell, to catch up and keep the pace.

Pace? There is no pace. Silly woman.

She gasps for breath, body tense, her hands gripping the side of the bed. Her hands look almost angry at those moments, fierce and ruthless. She vomits, and I'm rubbing her shoulder, saying the pragmatic loving things that I say to my boys. Go on, get that out. Your body wants it out. And helplessly, she does.

And then she's quiet. Leaning back on her pillows, the mask on her face and a calm waiting look in her eye. Around her, family swirls. We chat with her, to each other, laughing and enjoying the family coalescing. When she's quiet, we let the reason for our gathering rest. Hello! How have you been? Did you bring photos of the kids? Of course. And I lean over her bed, showing her the photos while I show the others.

Here's the Eldest's sewing, the Toddles writing letters, the my wonderful kid this, and my wonderful kid that. She reaches out a shaking hand and tries to wrap her fingers around a photo. I hold her hand and together, we admire a child's face. Time pools gently in the room, and I start to relax.

Come on, says an aunt. And I do, kissing a silver hair goodbye, the soft sueded skin. Damn, but I'm lucky, I think. I wish the nurses a good night and we leave. The nights are, of course, the worst time, the aunt admits. I nod. I know this, and yet I can see how we might let ourselves leave this informal vigil, fooling ourselves into thinking that maybe, possibly, there is a pattern. It's a more comforting thought than unpredictability, than waiting for an unexpected ending, and I can see now how little grace there could be in such an ending. The gasp, the body striving, the desperate need of lungs, starving for air - oh, no. Not grace; need.

Pool, rush, pool, rush, pool. The pattern is there, tempting us.

Sunday, May 24, 2009

in waiting

At some point in the past weeks, this blog became a wish. Stories came, giggled at me, forced me to sit and think, and then drifted past before I could write them down. I have a fistful of scraps of paper with notes about knife sharpening, the chocolate birthday cake that inspired a passionate defense, the Eldest's roar - then quiet - then smile, the Toddles' new preschool. Bailey's sauce, and the Toddles bouncing in a front seat. And my reinvention as a woman with mild hemophilia. Or not.

I meant to write - I wanted to write - and some days, I needed to write. Half-written posts are littering my dashboard, but I'll get to them. I will. Really.

Right now, I'm actually busy waiting. I'm sitting in Boston's airport, my feet braced on the window in front of me, and a 32 hour trip ahead. In Melbourne, my grandmother is struggling for breath. She wakes, sees the loving faces around her, smiles and sleeps again. At ninety-two, she's far from unprepared for what's coming, and brushed off her daughter's concern over the DNR.  It is time. It will be time.

And so I'm sitting, two days from arrival in Melbourne, not really hoping to get there in time to join the circle of faces. But oh, hell, hoping anyway.

I've been given a precious gift, and I turn it over and over: the Man, who just happened to be able to take a week off, the friends who rushed to offer help, or who let their own troubles be derailed while I babbled, refusing to wail.  Being able to go is a gift, supported by community and love, but given as a rare leisure in this process. I could choose to go, had time to book a ticket, had time to cook extra food and arrange playdates and dinners for my family. I had years to learn why I loved this woman, to watch her push past her strokes to learn to walk, hold a cup, a telephone. And I've had years to try to copy her grace. 

Love and joy tower above struggle. Got it.

It's a gift to have this time to learn, to plan and to travel. I'm clutching it tightly, knowing all too well that time is not always given.  Imagine: I am flying! Given the wonder of that, I can't really ask if she'll wait. Her time is on a different clock. Mine is steeped in the richness of what has brought me to this airport, and what propels me onwards.

Tuesday, May 12, 2009

and to all, a belated wish

Happy Mother's Day. 

For the mothers who are made, shaped and discovered: thank you. There are many mothers in our Imperfect world, and I am grateful to all of you for your support. 

8am, Sunday morning: roll over and crack an eye at the clock. Close eyelid.

8:20 am: crack the other eye. Review the various things that need to happen before it's time to leave the house. Compare that list to the noises from downstairs: are those getting dressed sounds? breakfast sounds? Mmm - breakfast. Stomach rumbles, slam eyelid shut and require both to be patient.

8:35 am: okay, patience sucks. Did breakfast/clothes/making snacks/pouring water/finding the hats/finding the soccer ball (soccer today!) happen? And speaking of breakfast, am I getting my own? Roll over and grump quietly into the pillow

8:40 am: stop grumping. Follow the sound of keys tapping down the hall, and gently ask the Man if I can get up now? He stares at me. Get up? I blink. Get out of bed, I clarify. He stares some more. Get out of - OH. Uh, um - OH. No. You can't get out of bed! I try not to grin wickedly, and offer some highlights from the list of Things To Do in the next 30 minutes. He hyperventilates, and I suggest that perhaps I'll take a shower now, while he regroups. I escape down the hall while he splutters.

8:49 am: Mid-rinse, the bathroom door opens and the Eldest pops in. You have mail! he sings. I spit out some bubbles and say something coherent like, what? hello? But he has gone. When I get out of the shower, I squint nearsightedly at something that might be a card. Sitting on the toilet seat. I resolve to be nearsighted, and squelch down the hall.

9:10 am: Mouth full of toothpaste. The Man whisks in, did you get the card? can you get the kids dressed? can you make snacks for them? can you fill their waterbottles? I have to take a shower and get ready to go. I am faster on the draw this time, and spit out the bubbles before he vanishes - but only just. Sure, and I did get the card. Kid left it on the TOI-let. I crack a significantly arched eyebrow at the Man. I'm going to open it in the car, to make it a family moment. He huffs and races down the hall, trailing his towel.

(I do the petty thing oh, so very well, eh?)

9:35 am: we're in the car, and I make a production out of opening the car. It is wonderful, all snarks aside - the Man got the boys to make handprints, slipped a really terrible pun, and all three of them signed their names. The Man, in unreadable swirls; the Eldest, in tidy cursive; and the Toddles in oh my goodness readable printed lettering. Which, the Eldest delightedly points out, the Toddles did all by himself. With no-one holding his hand! I melt ever so slightly. No, a whole lot. I admire everybody's signature lavishly, and decide to hold off on explaining to the Man exactly how lame he is. (the toilet? a card-and-run? hello?) Oh, I am not going to get teary over the Toddles' writing his name. No. Not at all. Just a little damply proud.

10:05 am: I am climbing out of the car, and we're stuffing an extra kid into it. The car pulls away, leaving me and a bag of ripped clothes behind - I'll have a sewing mama-date with another soccer mom, a semi-regular Sunday arrangement.

10:06 am: there is coffee, there is a fabulously cute baby (oh yes, and his mom), and look! I'm going to sew that damned button on the skirt that has been waiting for the past seven weeks for me to get to it. Ha. I am alarmingly pleased with myself, and breakfast? Sure. Let me just grab a pan and scramble some EGGS. Yep: eggs, baby. Scrambled. With butter. Heh.

10:40 am: and there goes the ripped sweats, now reincarnated as shorts. I forget that I'm insisting on the righteous indignation thing and grin. Whee! I reach for the Eldest's unraveling kipa and hm -whazzat? 

10:42 am: ballet? what? WHEN - wait, ballet? Quick inhale. Quick jog down the memory, small grin. Bigger grin.

10:43 am: honey? honey? what do you think about me skipping out for a matinee? There's a last minute ticket - yes, I know. Oh, you didn't have anything planned for the afternoon? Really? Great!

12:57 pm: I have not a single fucking thing to wear. Pants are falling off my bony butt, and when on earth did that happen? Clothing is flying in my neat-freaky room, piles of things that used to fit are looming, and oh cripes, what is left? I swear quietly and creatively, trying not to wake up the Toddles, who is sleeping in my bed. 

1:03 pm: the Eldest pops his head in and cheerily informs me that my cab will be here soon. I remind myself not to snarl at the kid, and settle instead for informing him that I'm having a somewhat difficult time, and perhaps now isn't a great time to be here? He settles on the bed, and happily offers to help. Teeth clenched, I propel him out the door. I hate getting dressed. It's like playing Old Maid with a stacked deck: the pairs I want vanish, and giggle. What on earth did I use to wear with this shirt? Surely not that - why would I do that? Ack.

1:12 pm: I'm dressed. I'm also mocking myself in the mirror, but who cares? Cab should be here momentarily and oh, need to change the ratty burlap bag, okay, can do that, and hell. That was a ripping sound, wasn't it. Oh, bugger

1:20 pm: cab's here, I've found some things that kind of work, the hair is, well, it's pinned firmly on the back of my head, so I can't see it, and ignorance is probably bliss. Bag's changed, got a warm layer - right! Time to go.

1:20:56 pm: my dad? calling from Kosovo? Aaaahgrlfk - hi, Dad. 

1:22 pm: cab's gone. Call cab back. Chew nails. Curtain is at 2pm, furiously calculate just how late I'm going to be.

2:11 pm: standing in the dark theatre, waiting the usher to seat me in the second row from the freakin' holy hell front, I'm entranced. It's Eifman's Onegin, and it is wonderful. For the next two hours, the snarks and petty grumps will drop away. The muscles will relax. The jaw will drop, the vocabulary will be temporarily silenced. Instead, I'll watch elegant, brutal, thoughtful dancing, set against a backdrop of a carefully designed set, with a brilliant mix of classical and modern music, classical and modern dance.  The patterns of the ballet - a color theme here, a trail of prop there, an echoed dance step, bend of an elbow - piece themselves together in my head, and I stare at structures forming in my brain, intricate and deliberate. I remember those structures, remember building them inside my skull, lo these many post-grad years ago. And then onstage, a dancer will move and -



For two hours, I'll sit in  another world. When I step out of it and on to the train home, I'll carry wisps of it with me...and I will smile. And yes, no problem, love - I'd be happy to go online and order myself a gift. From the bit of paper I'd posted on the fridge a few weeks ago?The Man eyes me suspiciously, waiting for the petty, the snip or snark. Instead, I smile. I'm brimful of the oh.


I drift off happily, completely forgetting about the thingamibob that we've budgeted for. I have, after all, been well celebrated today. At bedtime, I'll reopen the card and admit that yes, I am after all sniffling a bit over the handprints and the carefully - laboriously - written names. And the guy who had the foresight to make it.

A Mother's Day lunch: for a fast lunch, I had a bowlful of this, happily reworking the sabbath's leftover brown rice.  I suspect it would make an excellent meal for a new mum, baby in one arm, spoon in to remember that. If only to bring it along to a virtual baby shower sometime.

B'sha'a tova*, Seamaiden.

Far From Leftover: Sweet Gingered Brown Rice Salad 
(based on "warm brown rice salad," Boston Globe 4/22/2009, G25)
serves 4.

3 cups cooked brown rice
1 small crown broccoli, cut into small pieces (stems and florets)
2-3 scallions, sliced somewhat finely
1/3rd c toasted sunflower seeds (or slivered almonds, pine nuts, or some other mild crunch.)
1 punnet cherry tomatoes, rinsed
1 can chickpeas, drained
optional: add more! I considered craisins and thinly sliced carrots, but you could replace the chickpeas with cubes of leftover chicken. Have fun.

Pour brown rice and broccoli into a oven-friendly casserole. Pop into a 300 F oven while you assemble, chop and mince everything else. 

1/8 c. maple syrup
1/8 c. tamari soy sauce (regular soy sauce has wheat)
1/3 c. olive oil
1 clove garlic, smashed and chopped rather finely
1/2 inch piece of fresh ginger, peeled and minced. Yes, minced. Just do it.
1.5 Tb maple syrup

Whisk the dressing together while the rice and broccoli are warming up. Pull rice and broccoli out of the oven - the broccoli is now that bright green color that shows that it's barely begun to be cooked. Add the rest of the ingredients to the salad, and toss gently with the dressing.

Serve, having reserved a bowl for yourself. Eat that for thirds - it's only the fast and the cleverly prepared who are going to get that much. Fair warning, people.

* in a good hour. Meaning, may what happens come in the right time, and the right way - however that way, and whenever that time may be.

Friday, May 08, 2009

metaphorical bottles

I think I've lost the knack for the fast, story of the day blog post. But what the hell, here we go:

the Eldest is going complex on me, and fast. We've got some tricks of the trade set up to help him explain the inner crannies of his skull to me, and thank heavens: turns out, the kid's not so much lacking in crannies. His favorite happens to be something I came up with in desperation one night, when I was holding a bottle of Amicar* and he was furious and miserable at the idea of one more dose of the stuff.

As was right and proper - it tastes like old feet.

The kid wailed, and I talked, then hugged, then gave up. Okay, I said, if you are the bottle, and this (balancing it on my hand) is you when you are fine, and this (the bottle lying flat on my palm) is you now, how did you get here? The kid blinked, and the image stuck.

In the car today, the Eldest muttered something furious about being hungry, and my general cruelty about feeding him. I offered the usual snack bag, and he continued muttering. Finally, he looked me in the eye, and said, you probably want to ask me about my bottle status. Well, I should've.

Five minutes later, we were standing in front of rows of baskets: Cortlands, Red Delicious, Granny Smiths, Macouns, apples bonanza, with the odd Anjou pear. The Eldest chose a basket, then reached for another. I suggested that one big bag of apples was enough.

Kid lost it, right then and there. 

You never give me anything I want! You just want to keep it all for yourself! If you gave me 20% then you are keeping the other 80% for yourself and just being selfish! 

(I blinked at the math, but the Eldest was in a groove and kept roaring)

You don't care about what I want! I want to kill you! You have to do this or I will kill you and leave you in pieces!

I stopped blinking, and looked the kid in the eye. Okay, we're not getting two baskets of apples, but we could trade one in for a different kind. The kid whacked me in the arm, albeit half-heartedly. His roar, however, was still full force. 

You don't get to choose that! I'm going to do this! I am going to stand here and say that I want to hurt you until we can get the green apples! 

Thinking it over, the Toddles told his brother that yes! I want that too! But that was little comfort. You stay out of it, snarled the Eldest. You are not part of the conversation

Around us, people were very carefully trying not to meet my eyes. 

Sheesh, I thought. But at least the kid's freaking over apples, right? Right. I got down to the Eldest's eye level, and explained. We can work on a compromise, if you'd like. He hissed. Okay, then, let's take a break and go to another aisle. We'll come back to the apples in a few minutes. He roared. Right. I bit the word off. If we can't have a compromise, and we can't take a break, then this isn't workingTime to go.

Furious, the Eldest grabbed the shopping cart and started pushing it down the aisle. Stuck in the cart, a horrified Toddles wailed. I want my mummy! cried the Toddles. Don't take me away from my mummy! The Eldest looked up, startled, and tried to soothe him. Wrapped in his anger? frustration? tiredness? the Eldest had forgotten that the Toddles was even there. 

I slapped my hand onto the cart, and only then got a good view of the Eldest's face. Though his voice was caring and gentle, his face was distorted, wavering on tears. With one hand on the cart (and the Toddles), I hoisted my bum onto a clear bit of countertop, and pulled the child into my arms. I do love you, I told him. I love you, I love you, I love you. And he dissolved.

My bottle is all the way down, he wept. And with the Toddles holding one hand, and the Eldest wrapped around my lap, we sat there for a while. You are one of the precious things in my world, I told him, and I said it again and again as he cried himself out. I love you, I love you, I love you. He breathed into my shoulder for a moment, and wailed again. It's because I'm so hungry - and oh, my head still hurts. Damned head's been headachy for two days now - his and mine. Bloody pollen or something. (not a head bleed not a head bleed not a head bleed not a head bleed)

We stayed there until he was done, dosed, and both boys were fed an emergency pair of fruit leathers. A rather pleasant while later, we went home with a full cart of yumminess, said he, and two cheerful boys. And a couple of little bags of chips, because it seems that metaphorical Amicar bottles require the occasional caloric oomph. 

Oddly enough, so did mine.

*Amicar, or aminocaproic acid, is a secondary medication that we use. It helps adjust the acidity of the mouth and other mucous membranes, so that clots don't break down too quickly.

Sunday, May 03, 2009

a time of rest (and food)

this is the view through the hole in the wall.
And this is on the other side: unfurling growth,
 a place of testing and trust,

a breath of peace,
and a pause for memory.
And always, but always, a spot of vibrancy and joy

 not to mention play! Much of which happened on shabbat, when I could not take photos. 

What photos I do have, I'm saving for spousal blackmail. But do imagine the Man on a child's pink tricycle, knees up by his ears and careening around corners. Me, screeching with laughter, while a crowd of sane adults cheer for him, or for the equally scrunched up athlete behind him.

With the children delightedly in grandparental arms,  the Man and I flung ourselves into the car. For a weekend, we lived in a fantasy in which we slept, ate and walked around the lake. I was persuaded to try acupressure, courtesy of a group of volunteers. I then managed to be persuaded to try massage, then reiki, then any number of excellent slices of angelfood cake with oooh, lemon-orange sauce. (Eight parts confectioner's sugar to one part lemon juice, said the chef, plus orange zest. Because you know, I really had to ask.) And endless cups of tea. And popcorn. And how-to insurance tips. And yes, you've got me, there were sketches of our ideal home. Mine was not, by the way, the only one with solar panels and a veggie garden. And I was totally out-greened by the person with the imaginary goat. And in-house claims manager. 


Oh, but we talked. And talked. And laughed immoderately. And, while I was relaxing in a haze of not-my-allergens and people who know how to find the knots in my back and persuade them to relax a bit, the Man was reaching. 

He made it to one handhold and paused. Then he reached for another. And another. Until, blinking and alarmed, he was at the top. (need a visual? Scroll back up. Yep, that's it.) Roughly 35 feet off the ground, the Man sat down and laughed. The guy hates stepladders, you know. Made no difference.

Those Holes in Walls can hold the damndest things. Reliably, I fail to describe the place, let alone explain it. And I'm not even going to try now. Suffice to say that oh, it brings laughter and joy.


No KoolAid so far from the HitWGC folks, although there were many carbs rich with dairy and gluten. I tried hard to eat my weight in allergens, and I think I nearly succeeded...

We staggered to the car and drove home - where most of our GF, allergy-friendly fridge had been emptied. The grandparents nearly trampled us when we walked into the door, fleeing, perhaps, to more culinarily friendly climes? Well, maybe not. Taped to the countertop was a list of requests for of which is below.

Curried Chickpea Polenta
(adapted from the Voluptuous Vegan, serves 4-6, can be made 1-2 days in advance)

2 onions, somewhat finely chopped
4-6 Tb olive oil
1-2 Tb curry powder, depending on your tastes (and the heat of your curry!)
2 tsp salt
1 c. chickpea flour
.5 c medium ground cornmeal/polenta
4.75 c water

In a cake mixer or food processor, blend the chickpea, cornmeal, water and salt. The stuff will clump, so a fast whipping is helpful. You can try mixing the water and salt while slowly adding the cornmeal and chickpea flour - sometimes that helps avoid lumps. Personally, I embrace my lumpiness (to a degree), and just move on.

In a pasta-sized pot/medium pot, saute the onion in the oil until deeply browned. Add curry powder, and stir for a couple of minutes, until the curry powder is warmed and smells wonderful. Pour in the batter, and stir to mix. Heat uncovered over medium heat, stirring occasionally until it comes to a boil. 

warning: this stuff will splatter a bit, so take me seriously when I suggest that...

Once the mixture begins to boil, turn the heat down to med-low and stir constantly. The mixture will start to thicken, but keep stirring for another 20 minutes or so (almost constantly, slightly less so if you have a really kickass nonstick pot). The chickpea flour can have a beany flavor, but heating it steadily like this will mellow that flavor wonderfully. At this point, you can add optional yumminess, like fresh corn kernels, freshly ground black pepper or a sprinkle of minced fresh herbs, or whatever else makes your mouth happy. 

Spray a springform pan (or other pan, I like the springform because it's easy to uncrate the thing after baking). Pour the batter in, and let the pan sit on the counter for a 30-45 minutes. Then, bake at 350F for roughly 30 minutes.

The top will be golden and somewhat cracked - and entirely delicious. Serve it warm! 

note: for the non-vegan/dairy consumers, a grating of Parmesan might just be perfect here. If it is, for heaven's sake don't tell me, okay? I think I might just be dairied out for now.