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....
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.