It’s been almost four years since I originally published this. I’m posting it again for a couple of reasons: one, because Katherine Stone has been fundraising for this tremendously important cause and so it’s been top of mind, but the kind of top-of-mind that I keep trying to push down, because there are ghosts here, and I don’t really have the emotional bandwidth for coping with ghosts. Which is why, I suppose, (and this would be reason number two), I completely broke down reading this piece by Pam Belluck in the New York Times. Messy, ugly, lock-the-office-door-and-crouch-behind-your-desk-weeping broke down, the kind of breaking down that you can’t – or shouldn’t – ignore. So I searched for this post, to remind myself that those aren’t ghosts – they’re memories, of fighting real monsters. And to remind anyone who wants or needs reminding that the monster isn’t us. We’re the monster-slayers.
It was just one night, and one night, measured against the course of a lifetime, doesn’t seem all that significant. But it was a dark night, and I have never been able to shed the weight of the memory of it. I have never been able to put it, as they say, in perspective. I never will.
Jasper was not quite six months old. I had not slept in weeks. I lay awake as he stirred and fussed, bracing myself for the moment when I would have to rouse myself fully to nurse him or change him or soothe him. The darkness that night seemed particularly black, the kind of black that has a density, a weight. To say that it felt like it was closing in would be to use a trope that gets overused when writers are trying to describe dark nights and oppressive fear, but in this case it was true. The darkness was closing in on me like a heavy fog, like an army of ghosts, like a slick of oil, like night made solid and sinister. I couldn’t breathe. Jasper continued to fuss. I fought the dark.
I fought the dark. I think that I won. Even at the time, I wasn’t sure. I’m still not sure.
I should know by now that when my sister posts on my Facebook wall, it’s a bad sign, because my sister – bless her – believes that Facebook is the best way to reach me when there’s something urgent to communicate. That she could also reach me by phone or email – I’ll grant that I do not always answer my phone, but I do check my email regularly, and in fact only get Facebook messages through email, because I ALMOST NEVER GO ON FACEBOOK – is a detail of modern telecommunications that she has chosen to ignore. She alerted me through Facebook that I needed to call her when my grandfather died, and then again when my dad died, and – here we get to the thing that I really want to talk about – again last night when I needed to be informed that our mom has an aneurysm that is growing at an alarming rate and needs to be surgically removed at the earliest opportunity but, oh god, the doctors aren’t sure her heart can handle it and all of this was signaled to me by a public Facebook posting of CATHY YOU NEED TO CALL ME OR MOM. And then: LIKE, TONIGHT.
So, yeah. This is why I don’t like getting Facebook messages from my sister, who I otherwise adore. When those messages landed in my inbox, my heart dropped, and it dropped hard.
The other week, my mom wrote about something that I’d been unable to write about: my sister’s struggle to cope as the single mom of a dying and disabled child, and the dark, difficult space of that struggle, and the breakdown that came when that space became too difficult to occupy. I’d been unable to write about it – even though my sister had given her full blessing for the telling of the story – because it was stuff that just seemed too hard to articulate adequately; it was the stuff, I said the other week, ‘about guilt and shame and anger and mental and emotional breakdowns and how when you have a suffering child the suffering extends beyond what you can imagine and how that’s hard to talk about because shouldn’t you contain your suffering on your child’s behalf?’ The hard stuff. The stuff that raises questions – and few answers – about the tension between selfishness and selfishness in parenting and where the line is between doing the very best for your child and acknowledging that that best comes, often, at costs that are sometimes hard to bear. The stuff that complicates the whole idea of the long-suffering mother of a dying and disabled child as a hero.
I love Christmas. I love it with the fiery heat of a blazing winter fire and a million twinkling fairy lights. I love the sparkle and the twinkle and the plum pudding and the eggnog and the tinsel and the gift wrap and the stockings and the carols and the hymns and the stories, all the stories, every single one, from the manger to the magi to old St. Nicholas to the Grinch (spare me the pieties about not telling tales to children. A childhood without the magic of stories, woven so brilliantly as to obscure the lines between fact and fiction, make-believe and make-of-that-what-you-will, is no childhood at all, in my opinion.) I love it, all of it, the snow-globe perfection of it, the gentle sheen of protective glass over perfect, brilliant moments in time, the way that it can just take one such moment – a moment in which the crackle of the fire makes you feel perfectly, contentedly warm; the flash of belief in a child’s eyes when you tell her that the jingling of bells that she hears is the music of flying reindeer; the fleeting frost-kiss that is a snowflake landing on your cheek – and make that moment expand almost infinitely and make you forget that outside the snow globe, life’s storms come pelt hail and bend your umbrella and soak your mitts.
When my sister was very young, she appointed herself my protector. It didn’t matter that she was two years younger: I was a shy, ashmatic child, gangling of limb and totally lacking in physical grace, whereas she was athletic and boisterous and tending toward ferociousness, and those qualities more than made up for our age difference in confrontations with bullies. If somebody teased me, she’d be right there, waving chubby fists and hollering profanities (where she learned them – raised, as she was, in the bosom of a very Catholic family – my parents were never able to figure out) and daring, daring, whoever it was that had the temerity to confront her sister to take on her as well. And there we’d stand, together: me, tall and awkward, blushing and stammering and willing myself to disappear, and her, chubby and gap-toothed, stomping and yelling and demanding our antagonists to BRING IT, and although it was sort of embarrassing to me – having my little sister stick up for me – I was also always grateful, and proud.