the tides of September

September is a laden month for we Imperfects, as I race to finish the careful processes of August and July, when I start the preparations for the boys (boys?) time at school.

In August and July, I have meetings with teachers and administrators. In September, I discover emails with last minute questions about art supplies, birthday celebrations, and whether or not the Eldest can play dodgeball. (He can, maybe, with one of the softer balls, and the more mellow rules.) I've been up long past midnight researching tempera paint (may contain gluten or eggs), adhesives (stickers!! can have gluten) and the contents of animal feed (don't get me started).

And then there's the Toddles' birthday, a complex day of joy and sadnesses. Born a day after my grandfather's yahrzeit, and a couple of days before my uncle's, he came into a time rich with memory. And then he added a carefully judged fillip.

The Toddles was born on 9/11/2005, which was bound to happen to somebody - but it is perfect for our lad. Precisely a year before the Toddles was born, we nearly lost the Eldest - 9/11/2004. Joy and terror, sorrow over what was, and hope for what might be stood in the delivery room when the Toddles was born. And then he came, and joy followed in his wake. (Also a hell of a lot of sleepless nights and missed showers, but let's not spoil the mood here, hmm?)

In choosing to have the Toddles, and in choosing to have him come without the fiddling of modern medicine (PGD, termination), we trusted ourselves - and risked hope. Hope is a wonderful, terrifying thing, and we walk carefully with it through our laden Septembers.

Some of our walks are more literal than others. Last year, we went for this particular
stroll, replete with the generosity that we found here. This year, we'll walk again with a family who understands the terror of hope, and whose daughter showed them the joy that can come with it. The Smiths chose to have a child much as we did, and that child had infant ALL. We'd seen this disease before, and watched its progress and endings. I recognized its face before the doctors admitted it, and grieved. We walked last September waiting for what would come next in this tale. Sometimes, this is a diagnosis with a happy ending. But not often.*

Carefully, weighted with love and memory, we'll be walking on Sunday. Won't you join us? For those of you with disposable income, you can pop over here and poke around. We're sorry that we couldn't trade lemonade for your kindness, but we promise to appreciate it. For those of you with sneakers, come on down. We'll be there: the Man, the Eldest, the Toddles and I. And so will Amelia.


* to quote the clever folks here, this is the typical infant ALL outcome:
4yr event free survival in infants ALL is 1/3 and median event free survival (EFS) is 1yr
In infants aged less than a month, 6 months survival is only 1/3, both in ANLL and in ALL
as the prognosis is most often very poor.

...and done!

That, my friends, is a badly framed photo of the finish line for the Boston Marathon. It is also, not so coincidentally, the finish line for the Jimmy Fund's Boston Marathon walk, which we crossed this afternoon.

The Man, despite having started the day at 4am to go to Hopkinton, nonetheless roared across the line while pushing a double stroller (not mine) seating two small boys (one of them mine). Zina, carrying one boy in her gorgeous Beco (not mine but oooh carrier lust) and pushing another (mine), scooted across, just ahead of the Y-Chromosome With Legs (And Wheels!).

It was an easy walk, a comfortable stroll, and I felt vaguely uncomfortable about the ease of it all. I've watched cancer and the battles fought with it, and those are brutal and terrifying. It wears people to the bone, and this walk felt too tidy, too self-satisfying by comparison. The Eldest's solution? Next year, Mum, let's walk FIVE miles!

You got it, kiddo.

Later that night, he ambushed me. The Man had collapsed in bed with aching muscles and the Toddles. I'd taken an antihistamine for a persistent cold, and was relaxing with tea. The Eldest, curled up next to me, had questions. Is Amelia all better now, Mum?

I looked at him. His logic was inescapable. Amelia was sick, we raised money for her, we walked for her, we made things better. Right? Oh, my little love. No. Not right. We started with the money. We talked about who it was for, and what it could do. And I told him about Isabella, again.

Five years ago, when Isabella had leukemia, the doctors didn't know how to do things they know how to do today. Scientists learn about the body, and they teach doctors, and doctors get better at fighting things like cancer.

Oh. (long pause) How old was Isabella?
She was almost 1 year old.
How old is Amelia?
She is two - she's a bit older than the Toddles.
(pause, in which the Eldest considers this and winds up for a knuckleball)
Can anyone get cancer? Can I get cancer?

So. We talked about cancer, who can get it and what happens. We talked about a near relative who had cancer, and who beat it. She stood up for herself, Mum, and she made people listen when she needed help. Hm. Yes, I believe she did.

We talked about kids with hemophilia, and how two generations ago many did not survive. How, a generation before the Eldest, many got sick from their medicine. How they didn't have recess at school, for fear of bleeds. Science knows a lot about hemophilia now, so the medicine is good. You are strong, your body is strong, and you can do sports like almost any other boy. He thought this over. Yes, and I love sports!

We talked about food allergy, and about how science is only starting to learn about allergy. Does it bother you that science is just getting going with understanding allergies? He considered this. No. I'm okay with that.

I begin to understand why so many kids with hemophilia talk about going into the sciences, into health care, into grass roots advocacy and support for folks with chronic conditions. It's what they see around them, the science, the care, the support is real and valuable to them. Experience is powerful - and it's exactly that which drives events like the Jimmy Fund walk.

Current estimates say that cancer will affect 1 in 3 people in their lifetime. If everyone affected walks, if they brought their brother, their cousin, their co-workers, then you end up with a huge affair like this one, full of people striving to find a way to do something real, to respond to the overwhelming medical reality - the human reality - of cancer.

Sometimes it has to be real for us to invest in it. Sometimes it has to be personal.

Well, then: meet Amelia. Meet Amelia's binky, and the foot that kept poking into her brother's space. She's ordinary, she's sweet, she's annoying her brother and testing her parents' patience. She is, to quote the after-school director at the Eldest's school, a normal kid who deserves a shot. How ordinary, how extraordinary. And the Eldest is right - she's definitely worth five miles.

See ya next year, kiddo.
***************
And on a completely different note, for all you nursing, post-lactating and occasionally embarrassed mamas, try this: http://mamamojo.wordpress.com/2007/09/12/breastfeeding-in-public-warning-offensive-content/

lemon philathropy (take two)

2 neon posterboards, 42 lemons, 1 entire bag of sugar, 7 tea bags (good profit margin on that one, the Man mumbled) and one really, really annoyed papercut (mine) later, here we are.

Oh, we had lemon. Boy, did we have lemon.

Sure, we'll have a drink, amused passersby would say. What's good?

The Eldest would barely miss a beat. The lemonade is really popular!

At the end of a long, sticky day (10.45 am - 2.25 pm), here is the final count:

1 $20 bill
1 $10 bill
$20 - in $5 bills
$34 - in $1 bills
$1 - in a dollar coin
$12 - in quarters
$2.57 - in dimes, nickels, pennies and one quarter
10p - in a random English ten pence piece. We're a little stumped.

Grand total: $99.57 (and 10p) for research into infant ALL.

Thank you to everyone who walked by and listened to an excited (and occasionally world-weary) small boy invite them to buy lemonade and 'icetea.' Thanks to everyone who understood that the Jimmy Fund is for kids with cancer, and not for gyms. Thanks to a wise lady who came armed with a newspaper to keep us amused - and bemused! Thanks to two small boys (and their patient mothers) in particular, who helped sell the drinks and to all those who cheerfully wrote or drew with chalk, inviting folks to come and see our lemonade stand.

For now, though, I quote the Eldest in this photo:

Phhheww. I'm glad we're done!

Heh. Clearly he hasn't thought about the whole walking part of the Jimmy Fund walk yet. But that, at least, is for another day.

P.S. for lemon philanthropy, part one, see here.

lemonade for leukemia

Things are hectic here, as we prepare for school (Wednesday! did I get the extra EpiPens? What about the medical kit, the IHP, the grab-and-go emergency kit, the chemical ice packs, the....argh), and I prepare to go to NY. My mother will be sitting shiva for her brother once she returns from Australia. I'll be taking over the kitchen (gluten-free, vegan shiva house! come one, come all!) and bringing the Toddles with me. The Man and the Eldest will join us for the sabbath.

It drives me batty to think of missing the Eldest's first week of school. I want to be there - selfishly, mostly - I hate that I'll miss it. But it's the right choice to make. (Argh. This grown up thing means much less selfishness than I want. ME ME ME ME ME. Right? Any day now, I'm sure. MEMEMEMEMEMEME.) With all of this, plus an encroaching - and now badly timed - deadline at work, I'll be sadly neglecting this blog for the next 7 or so days. Assuming, of course, I have the willpower to dedicate my energies as I should.

Oh, and where the hell is Mary Poppins? Since Mary Jr transformed herself into H.A. Mary Jr (Honorary Auntie), I've been sadly lacking in parrot-headed umbrellas, not to mention the wielders thereof. And let me tell ya, I'm looking.
******************
My thanks to those of you who read this post and jumped right in! Your generosity will fund research into infantile ALL, and we are grateful to you.

For our happy donors and everyone else, donations continue to be available on-line (either generally or you can select a specific walker), or you might consider joining us on Monday at Cambridge's Dana Park, where we will have a lemonade stand to fundraise for Team Amelia. Organic lemonade and the Mama's iced tea at 50 cents a pop, and a smiling Eldest. Throw in a really excellent playground, and who'd want to miss that?

We'll open for business at about 10.30am, and will stay as long as we have lemonade. Come join us! Play with our sidewalk chalk, invite complete strangers to drink up and support a good cause.
*****************

a walk, a life, too many memories (updated)

I have too many phone calls where the other person asks me, 'so, how are things going with you guys?' and that is the entire sum of the conversation. Me, me, me. Oh, the wonderfulness, the complexity, the fascination - oh, fine - the self-absorbedness of me. There's some correlation between my level of overwhelmedness and the periods of time where I'm so absorbed in the details of our lives that I fail to make the time for the second half of the conversation. Enough about me, how are you?

If I've done that to you, forgive me. I'm a navel gazing idjit, and I apologize. Or I will, right after I finish making dinner - did I tell you that we're having a new version of the bean salad tonight? You see, I found this in the pantry, then I sauteed....

Um, right.

Over the years, any number of family habits have developed to counterbalance the lousy behaviors that just don't seem to shake themselves out. The Man recited numbers to our babies, to balance out their number-phobic (okay, dyslexic) Mama. I have spent hours teaching my smaller Y-chromosomes how to mix flavors, to balance out their 'mmm, I ate plain sushi rice and it was perfect' father. And then there's the annual tzedaka (charity).

Here's the Eldest, self-appointed cheerleader for last year's family undertaking. I'm not talking about the smaller things we do, like collecting magazines and books for Children's Hospital (yes, adult mags and books are great, as well as kids' - just bring 'em over!), or donating clothes and toys that I manage to pry out of the children's hands, but the big stuff - teaching the kids to step outside of our focus on the miniutae of our lives, to make an investment in something so big that they may never see a return. Like the environment, like curing cancer.

So, the Man walked the Boston marathon route last year for the Jimmy Fund. It was hot, but he insisted on hauling his own drinks and snacks, and we met the sodden, wrung out remains of the guy at mile 25, and walked the last bit with him. The Eldest was chief cheerleader, and heartened everybody around him:



It happens that we know a family that lost a daughter to leukemia - she was the Eldest's age, and died shortly before her first birthday. Her mother and I became friends during the six or seven months they spent in and out (mostly in) of Children's Hospital. And I've lost two friends to cancer, both mothers of small children. All those are things that Should Not Happen. And with my uncle deteriorating, my fears are finding rich material in my own memory that Things That Should Not Happen, do in fact happen.

There's an enormous gap between 'chronic' and 'potentially terminal' in the diagnoses you recieve, but nowhere has it been highlighted more sharply for us than in our friends. Isabella, Malka, Elka - it's a list that should never even have started.

Chris and Chris have a son with hemophilia, and so we met. They are good hearted, cheerful folks, and Chris-the-mom's wry humour is a treasure. Chris and I shared our second pregnancies, the fears and silly concerns about having a second child, with or without hemophilia. Chris-the-mom became Chris-the-mom-to-two about a month and a half before the Toddles burst forth. Emmy was sweet, a little bundle of clotting joy - and she has leukemia. All of a sudden, from being a family managing a chronic issue, Chris and Chris were trying not to think about Amelia's first birthday, Chris refused to buy diapers in bulk, and chocolate couldn't begin to touch the fear and pain that my friend struggled with.

The prognosis for infant leukemia, or infant ALL is very grave. Under 40% have an event-free survival, and many infant ALL patients have a genetic component (MLL) that makes them less likely to respond to the drugs effectively. You can see here for more and depressing details, or read Emmy's CarePages here here. Emmy is two now, and she's working her way through the treatment slowly - her body's just too tired, Chris-the-mom reports, to handle full doses of chemotherapy, and you can hear the quiet panic at the idea of combining this diagnosis with low-key treatment.

So, this year, we're walking as a family. We're all registered walkers (excepting the Toddles, who is an unregistered rider), and I'm going to impose on your patience with a schnorr. All of the monies collected by Team Amelia are going specifically to research on infant ALL.

Failing in my efforts to find an anonymous donation button, you can find us at the Jimmy Fund's website, under Team Amelia. You can make a general team donation, or donate to support one of the Imperfects, specifically. And if not, if it's not in your budget this month or this year to donate, then consider this: do some laundry. Cook a meal. Show up with some hot chocolate, a puzzle or a craft kit. The best thing you can do is to be present, over and over. You don't need to have the right words, or to be able to do the right thing at the right moment, just offer to water the plants and feed the fish. Show whomever it is that you care, than you're here, and that you understand that they've dropped their lives in their tracks to deal with the medical juggernaut.

And think of us when we walk.

*****************
baruch dayan ha-emet.
blessed be the judge of truth

On Friday, in Melbourne, my uncle's sister, his two brothers, his mother and his children were informed that the machines were all that were keeping him alive. His liver, his kidneys, his heart and lungs had all failed - and he had moved to a point where he would not regain consciousness.

The machines were turned off, and my uncle died a little while later. Given permission, given the ability by his family, he left. Or, as I put it to the Eldest, 'he is not his body. So he left it behind, when his body was too tired, and too sick to ever heal itself. After days and weeks of fighting, he decided to just stop. To let go, and be a self without a body.'

The Eldest thought this over. He knows well, he told me, that you can have a body that doesn't work quite right, but the person inside that body is strong. He explained that sometimes the body needs a wheelchair, but the person inside the body doesn't. Nodding to himself, he walked off. Twenty minutes later, understanding had fully sunk in, and he came back.

I went to my room and thought about Uncle Dennis, and I'm sad that he's gone.

Yes. I am also sad, I admitted. But mostly for me. I'm sad that Uncle Dennis now won't really come to Boston, that next time we go to Australia he won't meet us at the airport and take us for coffee...

..and to the place with the moray eels! The Eldest jumped in. I liked the eels. (I did not)

And so it begins. Over the next week, we will tell stories, half-remembered memories, we will count over our feelings and tell the tales of his life. I'm not so sad anymore, the Eldest said. Because we will remember him, won't we?

Sure hope so, kidlet.

lemon philanthropy

I'm sitting here with my eldest, and he says to say "thank you, thank you, thank you, thank you..." to the people who came and bought drinks from us today. An especial big thanks goes to R and E, who bought three! drinks and came after reading about the stand on this blog.

Here's the story behind our day, lo now these many months ago (June, to be precise):

I had given a talk for the local childrens hospital, to their philanthropic (aka hit you up for cash) arm. As a way of saying thank you, I was loaded with teddy bears and coloring books and a book called something like '26 Steps: A Child's Guide to Philanthropy.' I was a bit surprised to be so weighted, as my talk had been largely about why it isn't a good thing to tell our oh-so not-quite tragic story, and why perhaps we really shouldn't. And yet.

In the book was a number of stories about kids who decided to raise money for the hospital. All had some connection to the place, whether personal or they knew a kid who'd gone there, was going there, etc. These kids went door to door, donated bat mitzva gifts, had lemonade stands - all of which raised money that they triumphantly donated. Each story came with a take-away, as they say in corporate speak, but as this is a book for kids, the take-away was (wisely) an object. One was a recipe card for lemonade. Another was a small charity box, shaped like a cute caterpillar.

Child: Let's build the box!
parent does so.
Child: Let's fill the box!
parent mentally slaps head, then empties change purse into box. Parent and child rifle the partner's change stash to finish the job.
Grand total: $3.43

The next day, we went to the allergy clinic at the hospital. This was an appointment for the babes, during which I would studiously ignore the Eldest for about two hours. I'd brought an evil DVD player, complete with Mary Poppins, and planned to plug him in. Still...

I called my friend over at the arm-twisting branch, and she agreed to come and ceremoniously accept the caterpillar box. We met before the appointment, and she'd brought a nicely elaborate certificate of donation, and....another box, this one three times the size of the first.

Later that day:
Child: Let's build the box!
parent does so.
Child: Let's fill the box!
parent groans, then points out that no change purse in the world will fill that large object. Parent and child plan a better way to extract monies to fill the tea-cup dog-sized thing.

One lemonade stand later, we had this: $40.96. The child sold organic lemonade and iced tea at 50 cents a cup, and get this: we only sold 38 cups. Tells you something about the persuasive power of a cute child, sweetly asking you to buy a drink on a hot day, no? Or maybe it was the combination of child and worthy cause. And yes, there were those few whose eyes I watched flick from child to MedicAlert bracelet, and they probably figured out the 'why' to the cause chosen. And maybe it says something about the liberal folk of Cambridge (now pay attention here, jgfellow), because while their politics might spring from the heart, so too comes a bit of good will.

*********************
At dinner that night, the young captain of industry turned to me and asked, 'Mum, have you ever spoken to God?' Cautiously, thinking of Amber Tamblin and certain people who say that they have, indeed, spoken to the Big Guy, I said, 'no, I haven't.' 'But what does His voice sound like?' he pursued. 'I don't know, sweetie,' I said, sticking to my line. 'I think it sounds like thunder and lightening,' he informed me. Scrambling a bit, I tried again: 'I think that you can feel God in your heart,' I said, treading very carefully. 'Like when you've done something good, you know that it was the right thing to do from your feelings. Perhaps that's a bit of God that you feel?' He nodded, satisfied.

There's time enough to introduce him to the remote versus the active deity debate later. For now, if I can use God as a tool to help him to listen to himself and to develop a barometer for the nature of his actions, then that's enough God for a four year old, I think. It's too easy for God to be the great punisher, the big kahuna who will slap you down if you are bad. Why bother? Better to let the kid internalize the role of judging his own behaviour.

Either way, internal or external, I'm pretty sure something or Someone gave the kid a pat on the back that night, because he had indeed done Good.

**********************
As part of an effort to prove to myself (among others) that yes, there really *is* good food available to us, here's the lemonade night's dinner menu. Please note that I was assisted in the kitchen by a handsome young (very young) line cook.

Indian spiced salmon, broiled (a small area left spice-free for the sensitive of palate)
leftover mushroom fried rice
green salad

dessert: sliced bananas in a bath of orange-lemon juice, with brown sugar and coconut on top. Baked. Heavenly!