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 agreed with him and took his line of questioning even further: if certain other Disney hypotheses were false, how might we distinguish between the false hypotheses and the unverifiable ones (or in Emilia’s language: ‘the ones that aren’t true and the ones we can’t know’)? And further to that: were pixies real? Could mice and ducks really talk? If they did talk shouldn’t we be able to hear them and ask them questions? Is that house really haunted? Do ghosts really sing? Why are dolphins? These were difficult questions that demanded answers.

As were these:

Is that a real castle?

Is that really Cinderella, or just a lady dressed up to look like her?

Is the Epcot ball really a spaceship?

Is this Mickey drivers’ license a real drivers’ license?

If I wish for a Mickey car, will I get one, and can I drive it at home?

Are mermaids real? Can they really get legs if they make a wish, or is that wish like an ice cream wish, where they can be told no?

If we wish to come back here, can we?

I had answers for all of those questions, except for the last.

Questions about what’s real and what’s not real are easy to answer: you just go postmodernist – children are the perfect audience for lectures on postmodernism – and introduce the problem of figuring out the nature of reality and the importance of interrogating claims of objective truth. How do we know that something is real or not real? What is truth? If we believe that castle to be real, and if we declare that castle to be real, who is to say that it’s not real? If somebody insists that that statement – that Cinderella’s castle at Disney World is a real castle – is not true, can we not question their understanding and use of the term ‘true’? And is Disney World not, in fact, the perfect place to fully explore Marx’s claim that in the condition of late capitalism ‘all that is solid melts into air’? Or at least consider how that statement pertains to the ghosts in the Haunted Mansion?

The nature of truth and reality is easy to discuss. The science and economy of wishes, however, not so much. Because although some wishes can be fulfilled – our family trip to Disney World was a wish fulfilled – many wishes and dreams simply can’t be made to come true, no matter how cleverly we finesse questions concerning the nature of truth. Most wishes and dreams, maybe, and most for reasons that range from dull to sharply painful: we’d get sick if we ate ice cream for every meal; there are laws against children driving cars; we can’t afford to do another trip like this, or any trip, really, not in the time that Tanner has left. And the reality – a reality as real as real can be, no matter how many poststructuralist interrogations one lobs at it – of impossible wishes is a harsh one, a cold one, one that one usually wishes – ha! – to avoid having to confront with one’s children. Well, maybe the impossibility of unlimited ice cream and kindergarteners with driving privileges aren’t so difficult – I fully intend to leave driving wishes unfulfilled as long as I possibly can – but the impossibility of other kinds of wishes – can we come back here together, can we see each other again soon and do more magical things, can we do this again, can we do this again and again and again? – are difficult to confront. In our case, especially, because the limitations on the possibility of those wishes are due, in large part, to the reality – again, an undeniable reality – of Tanner’s condition. To the reality of the limitations on time.

And yet.

A lesson that we all learned on this trip – one among many, but probably the most important – was that the limited probability of fulfilled wishes is precisely what makes them fascinating, and precious. Like talking mice and aggressively social ducks and haunted houses and visits with princesses and pixies and mermaids, fulfilled wishes are only a sometime thing and usually occur only under certain very specific and, more often than not, magical conditions. It’s the very fact – yes, fact – wishes don’t submit to poststructuralist interrogations of the scientific binary – that wishes are rare that makes them special. And it’s why when you are lucky enough to find yourself in the middle of a fulfilled wish that you must take the time to really consider it closely and to ask it all sorts of questions and to think about it and to talk about it and to take notes – literally or figuratively – so that you can always remember it and so that you can file it in your Big Scientific File Of Things That Are Rare And Wonderful And Difficult To Explain. And so that you can enjoy it, of course. We learned that this week, too: that with anything that is Rare And Wonderful And Difficult To Explain, you sometimes need to set aside the questions and just experience it and be joyful. Because joy is beyond science.

Because joy is magic.

Joyologists.

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

Emilia’s hypothesis: confirmed.

‘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.

‘We won’t know that the hypothesis is true until we get there and actually see the wishes come true, Mommy. That’s science.’ I don’t know that she rolled her eyes at me at this point, because she turned on her heel and walked away, presumably to go put on her lab coat and record her observations about my dunder-headedness in her Mommy Doesn’t Know Very Much file.

Still. Rationalism, for the win.

******

We’re off to Disney World this week, thanks to Air Canada and Disney, for the everybody-all-together-spinning-in-teacups family vacation that Tanner has wanted so badly. To say that our hearts are very full would be an understatement. To say that the brains of some among us are also very full would just be to acknowledge that Emilia is incapable of undertaking any enterprise without interrogating it thoroughly.

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.

It’s stuff that I don’t have words for. There are limits to telling other peoples’ stories, even when they tell you everything, even when you’re living right alongside their story, even when you share so very much of their story. There are limits, because no matter how intimately you share another’s story, the deeper and more complicated strands of that story remain, sometimes, just out of reach, such that you can see them but not quite wrap your hands around them. I don’t know anything about being heroic. I don’t know anything about being expected to be heroic. I’ve watched my sister be heroic, and watched her struggle under the weight of the expectation to be heroic, but I haven’t lived it, so I don’t have the words to really explain it.

Here are her words:

On the harder days, the harder moments… I do not feel like a hero… I feel, actually, that it has all been a farce. That if I was hero, I wouldn’t have these emotions… that I would be able to do it without complaint, without question. I was too scared to face these emotions and feelings, too scared to admit that sometimes at night I prayed to God to spare Tanner and me and Sophie, all of us, all of this. Please God, even though he is brave and courageous, please, why put him through this? And then I prayed to God to forgive me for even having such thoughts. What would people think? My heart aches when he says that he hates his wheelchair, when he says that he doesn’t want to be in it anymore. My heart aches that he can’t run and jump and play with the other kids. He just trails along in his powerchair and watches, wistfully. I cry sometimes for the things that all parents want for their families but that we will never have, and then I cry for crying about it. I just want to spare him this. Or is it me? Do I want to just spare me the heartache?

Tanner is a gift, I know. And he has given me so so much. Taught me so much, made me so alive and so aware of how absolutely precious life is…. so how can I possibly have these emotions? Let alone say them out loud. But we have to face our demons, otherwise we are not really living, are we?

These past few months really did bring me to my knees, life in general was not kind and then it all crashed together and two months ago I really thought – what the FUCK? (can you swear on a blog? sorry but no other word can really encompass the emotion!) (sisterly editorial note: of course you can, honey.) WHY ME??? Isn’t it all just enough? Really, God, I know they say life only gives you what you can handle, but I feel like God, the gods, karma, the force… they must think that I am Mount Olympus. I didn’t think I would make it… thoughts of my father haunted me… but you know? In the crucial moment, I did reach out. To be truthful, it was more that I fell, and HARD, and could not get up again. The people that love me picked me up and steadied me. And for the first time ever, I let them. My friends and family saw me at my most raw, undignified moments. They stroked my hair as I cried… well, wept uncontrollably is more like it. They simply held me while the numbness set in and then finally abated… and I was real for the first time in a very long time… the velveteen rabbit, limp but real.

So the moral of this story is everything does happen for a reason… everything. Though it can be crushing, life sometimes, we have to have faith and know that this too shall pass and maybe it will be hard, harder than you can imagine, but it will pass, somehow. And all there is to do is love well and be well loved and let yourself be well loved.

I wish that loving her well was enough. I too often worry that it isn’t. Heroes need so much more than love to carry on in heroism, not least the understanding that they do not need to be heroes. Or that they do not need to be heroes alone. Because they can’t do it alone. None of us can.

Which, god. How often do we tell ourselves that, tell each other that? We can be heroes. It takes a village. Save a mother, save the world. And we do it, we make our efforts, we do our level best to be there for whoever needs it, but at the end of the day, the people – the women – on the front lines are there alone, slogging through the trenches, taking the fire. There’s a reason that the hero, in myth, is archetypically a loner; the heroism of self-sacrifice derives, in large part, from the distinguishing nature of that sacrifice – the sacrifice distinguishes the hero, sets her apart from the crowd, the community. I have to do this alone, says the hero, and we believe her, because wouldn’t she be less of a hero if she didn’t do it alone? Doesn’t heroism require that kind of unique, individualistic bravery? Doesn’t it require self-sacrifice, which itself can only be undertaken by one lonely self?

In which case, fuck heroism.

Let’s not be heroes. Let’s just be people, with big hearts and strong hands and a willingness to bind those together and let’s surround anyone who is being pulled to heroism – even if it’s just (just!) the mundane heroism of motherhood or caregiving or loving – and whisper to her – shout to her – we don’t need another hero. Let’s just be ordinary, and do this together.

Here’s to ordinary. Here’s to ordinary, and to love. May they save us.

Closing comments, sorry. Too much heavy here.

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 anyone is going to address the crowd in the stadium and maybe drop some chocolate nibs at the rink edge it should be him, so.

(The show – Disney On Ice Presents Toy Story 3 – is running all this week in Toronto, and a portion of proceeds – use the code TANNER – are going to Parent Project Muscular Dystrophy in Tanner’s name. Please come. You don’t even have to wear a tutu, or eat chocolate ice cream nibs. YOU COULD EAT HOT DOGS. And if you’re not in Toronto, you could just go ahead and make a donation to Parent Project Muscular Dystrophy, because they’d like that. Or do none of the above – that’s totally fine, too, because we don’t all have the same causes and missions – but whatever you do, or don’t do, hug your kids and love on them and on anybody and everybody who you cherish, and let that be your good. SPREAD GOOD, LIKE BUTTER.)

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?

I’ve had these worries about sharing my sister’s story, the story of what it’s like to be the mother of a disabled and dying child. I still have those worries. And so there is much that I haven’t told, haven’t shared, even though Chrissie has said that it would be okay, even though so much of that story is so important, so worth being shared. Because I am, sometimes, not so brave. But my mom is. She decided (with the blessing of my sister) to tell the parts of the story that I haven’t been able to, the parts 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? Shouldn’t you be able to hold it together?

This is a story about not holding it together. It’s a hard one.

(Meanwhile, there’s this, which is is happier. You could join me to stand for Tanner and all boys with Duchennes and, for that matter, all the children – and people – who can’t stand and speak for themselves.)

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.

3.) Social Media Week. More specifically, dragging Emilia and Kyle downtown to speak at Social Media Week Toronto about their experience being part of a social media family, which is to say, put them in front of a crowd and demand that they explain what it feels like to be fodder for my ongoing virtual storytelling experiment. You might want to come see that. You don’t have to wear a tutu.

4.) The heartburstingly awesome Alison from Nummies Bras, who shared a post of mine about post-partum depression with her audience (you’ll recognize it as a reworking of this post from last summer) and who is gently moderating the discussion and spreading the love and support and doing so, so much to support the cause of fighting depression-shame. I adore her, muchly.

5.) Being a Bloggie finalist, in the category of Best Canadian blog, which is totally more prestigious than Best Blog By A Person Who Lives Adjacent To The Greater Toronto Area.

6.) The Basement.

7.) My mother, who has been writing about Victorian vaginal examinations for reasons that only make sense if you know my mother and/or read her blog.

8.) Your confessions about what you’d wear if you could channel your kids’ style, and make no apologies to anyone, anywhere, and also if they made footie pajamas and Spiderman snow boots in adult sizes. If you haven’t already, leave a comment to be eligible to win a $150 Old Navy gift card. (Tomorrow I’ll post the results of my styling session with Emilia, about which I’ll only say this for now: there were skull-print socks, vintage patent leather heels, leggings, a circa-80′s Armani party dress and an umbrella involved.)

9.) Crazy bandit squirrels.

(Observe Harold and Maude on their perch in upper right hand corner. Aren’t they awesome? I love Harold and Maude.)

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…

It is funny… I thought a lot today, as we met doctor after doctor, did test after test… though for me it was exhausting, Tanner was upbeat and inquisitive the whole time… He asked EVERY technician conducting the tests, is it good or bad? He was unabashed in his questions – he asked “why are you covering my testicles with lead?” The blushing technician explained why and Tanner’s response was immediate: “it doesn’t matter because I’m not going to have kids“… I am almost peed my pants laughing, which might seem (to someone who doesn’t know him or us) as slightly off-color… but he said it with humor and honesty and it immediately put the technician at ease. You see, everyone that sees him there knows his prognosis and they try to, understandably, tread softly. Tanner has the gift to engage, he is relentless in his curiosity and if you have met him, you know that he asks very direct and honest questions… about life, about death and about how many trains and planes you actually know the name of… (you would be surprised how many there are.)

And so another life lesson for me has been reaffirmed: be honest, be curious, seek to understand, just like when we were kids… Laugh, and I mean like really laugh… from your belly like a child does… until your sides hurt.

Still, amidst those moments of giggles today,  I did experience the grief of knowing again, knowing that he’s going to die, and it felt like vertigo. I am afraid I will be changed in that moment, when it comes, that I will be changed… that I will not be same.  I will have to find that place where he will only exist in my heart and soul… someone compared it to listening for the ocean in a conch shell. I can hear that ocean clearly; for now, I stand right beside it and I just breathe it in.  Then I hugged him even harder.

Really big hugs back to all of you too

From my sister:

I read and reread the comments to all of my sister’s posts about Tanner. I do follow them but have never made one myself.

I am a strong woman and a mother… I thought I knew what I was capable of, I thought I could beat my demons by pushing my body and spirit to the limit… but I have been brought to my knees, again.

This isn’t meant to be melancholy or seeking sympathy, more an exercise in exorcising myself of pain… and to urge others to be compassion. I have to watch my child die, slowly and surely. As so many mothers and fathers do… Yes, there is always room for prayer and faith but sometimes you lose that… parents that face what I am facing know that. I don’t think life is unfair, nor am I complaining, it is what it is and there are lessons to be learned, but given all of that, it does not take away the pain.

Tanner’s diagnosis has brought me a lot. It has taught me to love better, live more freely and just laugh. EVERY SINGLE MOMENT COUNTS. Hug your kids. Tell your loved ones you adore them. Make a total stranger smile. He has taught me courage and dignity, something I always thought I had but I have learned so much more from him. He is slowly dying, being robbed of his independence, day after day . Yet he smiles – most of the time – and faces it. Faces the future that we both know, and faces it with grace and dignity and spark. That in itself gives me strength because I cannot possibly understand what he is going through in his mind, day by day, losing muscle after muscle.. As his Mom, I would lay my life down to spare him this, yet he never complains… he cries sometimes but he never complains. I cry often lately but on my worst worst day I cannot possibly compare it to with what Tanner goes through, or any other sick child. Their courage and strength astounds me.

With all of my heart, I ask that you take the time to consider another child, another mother or father that has to face life and death. Reach out, if with nothing more than a smile and a hug. It means something. We have been absolutely blessed by the support we have received… And my heartfelt thanks goes to all of you that made a tremendous difference in my son’s life… there are too many to name but if you are reading this you know who you are. I only hope that we can do the same for someone else.

My sister sent this to me last week. I wasn’t going to post it, because I thought, this is not the week. This is the week of Blissdom; this is the week of inspiration and hope and rah-rah-rah and rah-rah-rah just doesn’t sit well with enveloping clouds of dark. I thought. But then I thought again… this isn’t dark. This is – my sister’s words are – the very embodiment of light and hope. This is why we do this, why we share our stories, these stories, his story: so that we can move each other and be moved to care. And to act. And to love. So I posted it. Please drop her some love.

For her. For me. For them.