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25 Mar

The Lonely Cry Of The Selfless Mom

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.

2 Mar

Stories Hard To Tell

For all my talk of the world-changing power of sharing our stories, there are some stories that I have trouble sharing, because they’re too hard to write about, or because I worry about the impact of sharing them, or because they’re not my stories, and even if I have permission to share someone else’s story – like, say, Tanner’s – sharing someone else’s story is always an enterprise that pitches me into a state of anxiety. What if I tell it wrong? What if I don’t do it justice? What if it provokes the kind of ugly reaction that I’m comfortable receiving on my own behalf but which sends me into emotional turmoil when it involves others, and especially those whom I love?

9 Feb

Things That Are Awesome, Random Wednesday In February Edition

Things that are awesome:

1.) Being asked to open Disney On Ice / Toy Story 3 On Ice – in a tutu – and knowing that a portion of ticket sales will be donated to Parent Project Muscular Dystrophy in Tanner’s name. I’m probably going to cry, which is going to be disorienting, you know, what with me being under spotlights in a stadium while on ice skates and all. (I don’t actually know if I’m going to be on skates. I will be on ice, so it’s what you’d expect, but you never know. Maybe I’ll fly in on the Tinkerbell wire. That would probably be safer.) (You should totally come. And wear a tutu. And cheer, loud, and pretend to not notice if I do, in fact, burst into tears.)

2.) This photo.

19 Jan

You And I Were Meant To Fly, And, Also Tweet (On Wheelchairs And Internets And Raising Our Voices, Oh My)

Once upon a time, in an Internet far, far away – which is to say, 6 months ago – I tweeted about Air Canada. I tweeted about them a few times, actually – I tweeted that they’d broken my nephew’s wheelchair, and I tweeted that they were working to replace it, and then I tweeted that they hadn’t, in fact, replaced it and had instead left Tanner stranded, immobile, while his mother and I scrambled frantically to reach someone at Air Canada on the telephone and did anyone out there have a number that didn’t start with 1-800 and end with ‘we’re sorry, ma’am, but you’ll have to call back on Monday’? – and it kind of started what is often colloquially referred to as a shit storm.

I’ve never written about that shit storm. I’ve never written about it because, frankly, by the time it was over I was sick of the whole thing. I was sick of the whole thing during the whole thing, actually: I was sick of what it did to Tanner and my sister; I was sick of how it took hold of us and shook us and demanded that we explain ourselves, dammit; I was sick of how it spilled TV cameras and reporters into the hall outside our room and how it pulled them along behind us on the sidewalk and in the park and on the subway and demanded that they ask, again and again, does this demonstrate the power of Twitter? Does this demonstrate the power that Twitter gives the little guy? I was sick of trying to explain, yes and no; it’s complicated; this is a triumph, and also not a triumph, and could you please leave that little guy alone? Because that little guy is scared and confused by all of the attention and this isn’t helping.

20 Dec

Bring Us Goodness And Light

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.

21 Oct

Her Hand I Held

chrissy and me 2When 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.