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.
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September Song
© 1938 Maxwell Anderson/Kurt Weill
Well, it's a long, long time
From May to December.
But the days grow short,
When you reach September.
And the autumn weather
Turns the leaves to gray
And I haven't got time
For the waiting game.
And the days dwindle down
To a precious few
September, November
And these few precious days
I spend with you.
These precious days
I spend with you.
Not this year on the sneakers, but, hopefully, next. But we did poke around that nice little page.
Hope is a complicated character, no? And sneaky. But sitting where I am now, I have to vote the last trait as a good thing.
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