Bad Is the New Good

Give Good Blog

Give Good Blog \ ˈgiv -ˈgud -ˈbläg\ noun. 1. a commitment, made by online writers and other participants in virtual communities, to principles of good virtual citizenship and to actions reflecting same; a commitment to the use of social media to advance social good, whether by raising awareness of a specific issue, or raising money [...]

This Is Tanner

Tanner is my nephew. He’s dying. There aren’t any words that can adequately describe how hard that is. That said, I do try to describe it, sometimes. And I try to share a little something of his life and struggle and his family’s life and struggle and all the beauty and the sadness that those [...]

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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And Then A Hero Comes Along

September 20, 2011

Here’s something that I said yesterday: “Being a mom is the closest you’ll ever get to feeling like a superhero.” I said it in response to something that Christy Turlington Burns said about the remarkable experience that one has, when one becomes a mother, of suddenly finding oneself able to move figurative mountains, that moment [...]

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Somos Todas Blogueras

August 2, 2011

I need your help. Well, not me. This woman. She’s supposed to be in San Diego this week, receiving an award from BlogHer for her important work, and she might not be, because of her important work. It’s complicated, but also not: Yoani Sanchez is a blogger, in Cuba, and her work is important, and [...]

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We Are All Habiba

June 9, 2011

This is a horrible, horrible story: On Saturday the 4th of June ago a well known Spanish children’s psychiatrist, Dr. Ibone Olza, who also works for the main organization in Spain that campaigns to protect the rights of women and children at birth, “El Parto es Nuestro” (Birth is ours). Informed some of us via [...]

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“It’s Our Prayer That You Be Examples To Others”

May 2, 2011

Mother’s Day is this coming weekend, which means that I will, this week, be thinking of something to do for my mom, and for my sister, and for other mothers that I love, and that I’ll be telling my husband to get me flowers instead of chocolates and maybe a reservation for a nice night [...]

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Wishology

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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