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8 Dec

Sticks And Stones And Things That Hurt, Badly

Tanner is being bullied. Tanner is being bullied, and it is breaking our hearts, and we don’t know what to do.

All bullying is horrible, of course. I’m resisting the temptation to insist that the bullying of Tanner, who is disabled and terminally ill, is horrible by a whole different order of magnitude than ‘ordinary’ bullying, but the fact of the matter is that to the bullied child, and those who love that child, there is no such thing as ‘ordinary’ bullying. All experiences of being bullied are uniquely, exquisitely horrible.

So it is that our experience of Tanner being bullied, and certainly Tanner’s experience of being bullied, feels uniquely awful and terrible and painful. That he already faces so much disadvantage, that his life is already painful and difficult, that his life will be short makes it all feel like something of a curse. This is how I feel. This is how my sister feels. This is, of course, how Tanner feels, although it must be said that I lack the words to understand or explain how Tanner feels, because I cannot for one instant imagine how Tanner feels, beyond a vague understanding that it involves an order of torment that I have never and likely will never experience.

What’s been happening, in my sister’s words:

11 Apr


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 the Disney universe – a hypothesis that Tanner appreciated deeply, but that he felt raised further questions about wishes and about the nature of all things existing within that universe. Would all wishes come true at Disney World? A quick test – a declared wish to have ice cream for all meals – quickly confirmed that hypothesis false. And if that hypothesis was false, what did that mean for other Disney hypotheses?

2 Apr

A Hypothesis Is A Wish Your Brain Makes

‘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 Tanner wished that we could go to Disney World together and have a family holiday there, and we’re going, and that was his wish.’

‘That is excellent science, sweetie.’

‘But we haven’t actually tested the hypothesis, Mommy, because we aren’t there yet.’ You will have to imagine her exasperated tone here. Clearly, I don’t understand science.