Bad Is the New Good

Tanner

Clockwatching, Redux

March 24, 2010

Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs [...]

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When Life Hands You Lemons, Make A Yellow Tutu

March 12, 2010

This? This makes me cry. With joy. With grief. With gratitude. (You can join in too. I’d love it if you would. So would Tanner. Because it’s silly, and happy, and fun, and because it’s for him.)

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Princesses Never Give Up, Until They Totally Do

March 9, 2010

This past weekend was a weekend filled with tremendous, heart-busting joy. It was also one of the most personally disappointing weekends of my entire life. My head is spinning a little from the existential contradiction that this represents. I took the brood to Disney World, and one of the objectives of the trip was, of [...]

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I Love The Smell Of Activism In The Morning

January 29, 2010

Friday’s as good a good as any for promoting a cause, right? How about two? Cause #1: If you’re a Canadian woman, and you’ve had surgery, you might have been been given – while you were under anesthetic, without your knowledge, without your consent – a pelvic exam by medical students in training. It is, [...]

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Just Like A Prayer

November 18, 2009

I don’t believe in petitionary or intercessory prayer. I’ve written about my reasons for this at length, but it boils down to this: I don’t believe in, can’t believe in, a God who responds to such prayer. As I said some months ago, ‘why should God help us find a cure for cancer, and not [...]

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Wonder Girl Rides Again

June 12, 2009

I’ve been trying all week to craft a post about my sister and Tanner, about how they’re struggling right now, about how they keep taking blows, about how they keep taking blows but never stop moving forward, never stop pursuing happiness, never stop pursuing life. I wanted to craft a post about how my sister [...]

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The Invisible Boy

January 21, 2009

He wants to be invisible, she tells me. When we’re out he clings to me and turns his face into my side and it’s like he wants the the whole world to look in the other direction, away from him and his weakness and his wheelchair. She sighs. Your sister told me, when they got [...]

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Clockwatching

January 6, 2009

Last night, I curled up in bed with my little girl. She lay her head against my arm and gripped my fingers with her tiny hand and whispered, I want you to stay here, Mommy. Yes, I said. I want you to stay here, too. And then I rested my cheek against the crown of [...]

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Sings The Tune Without The Words

October 22, 2008

It’s been four years since my nephew, Tanner, was diagnosed with the condition that will kill him. During that time – which moved slowly at first, the disease not seeming to have taken hold in his little body, until he began growing faster, and it began its ceaseless attack on his muscles, crippling them and [...]

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A Portrait Of A Mother As Hero

April 26, 2008

Something – someone – that I haven’t written about it in a long time: my nephew, Tanner. He’s dying. He has an aggressive form of muscular dystrophy – Duchenne’s muscular dystrophy – and it’s become painfully clear over the past few months that his is a more aggressive form of an already aggressive terminal disorder, [...]

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