Bad Is the New Good


I don’t write much about Tanner these days. Partly because writing about Tanner is always hard, and I have limited bandwidth for hard, and I know that this is selfish, to avoid the hard topics – I also avoid writing about the struggles of the household, and the worries of the family, and these are minor topics in comparison – but my heart, you know: it sometimes feels as though it can only withstand so much. And then there’s this: Tanner is becoming more and more the owner of his own story, and more and more concerned to keep it his own, for as long as he has it. Even as his body fails, his mind and spirit move forward – now, into adolescence, with all of its exquisite sensitivities and anxieties – and you know how you didn’t want anyone to even look at you when you were twelve? That.

He just wants to be normal. But that’s complicated. And talking about those complications – and all the things that go with those complications, whether they be related to the conditions of his disability, his prognosis, the social issues that he faces (don’t get me started on the bullying thing again) – is important, because he’s not the only boy whose life has been made complicated by DMD. He’s not the only child whose life has been made complicated by disability and terminal illness. His is not the only family to struggle. So I push his story forward, again. And again and again and again. Exercising my own heart as a muscle – all of hearts, as muscles – requires it.

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April 11, 2011

We spent a lot of time, last week, talking about science. Which is maybe not what you would expect children to talk about during a week at Disney World, but there it is. Much of the initial discussion was provoked, of course, by Emilia’s very interesting hypothesis concerning the function and character of wishes in [...]

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City Of Cousinly Love

April 8, 2011

Well, theme park of cousinly love. Same-same.

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The Science Of Wishes

April 5, 2011

Emilia’s hypothesis: confirmed.

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A Hypothesis Is A Wish Your Brain Makes

April 2, 2011

‘Mommy, I have a hypothesis.’ Emilia is on a science kick right now. ‘What kind of hypothesis, sweetie?’ ‘It’s about Disney World.’ ‘Okay. Do you want to tell me what it is?’ ‘My hypothesis is that Disney World is where dreams come true.’ ‘That’s a very interesting hypothesis.’ ‘I think it’s a true hypothesis because [...]

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The Lonely Cry Of The Selfless Mom

March 25, 2011

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 [...]

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Stand In The Place Where You Drop Your Chocolate Nibs

March 16, 2011

That’s me, at the Rogers Centre in Toronto – which is, let it be known, a stadium – with a spotlight on me, and a microphone. And a tutu, of course. And a toddler, who couldn’t understand why Mommy got to stand right at the ice in the spotlight and he didn’t, because, seriously, if [...]

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Stories Hard To Tell

March 2, 2011

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 [...]

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Things That Are Awesome, Random Wednesday In February Edition

February 9, 2011

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, [...]

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I Can Hear Clearly Now

February 1, 2011

Another note from my sister, in thanks for all of your comments here… Thank you all for all the love and support; and thank you to my beautiful big sister. We are at BC Children’s Hospital this week getting further prognoses for Tanner, a measure of the time we have left…

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