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?
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.
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.
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?
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.
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…