(UPDATE BELOW) Tomorrow, Tanner will undergo a surgery that will, hopefully, prolong his life. But it’s a dangerous surgery, and he and his mom, my sister, have had to travel far from home and family for this surgery, and she’s scared, we’re all scared, and it’s hard. The struggle around the bullying before the holidays seems – for better or for worse – far away and insignificant; what matters now is that he get through this, that my sister gets through this, and that getting through this serves its purpose, that it yields more time with him, and good time with him.

Chrissie is scared, as I said, but she’s also resigned. In a good way, I think, which is to say, in a healthy way. It feels wrong to speak of resignation in the face of one’s child’s death as a good or healthy thing, but there it is. The better word, I guess, is acceptance. And acceptance is necessary, because Tanner’s fate will not change.

Still, still. It is so hard.

From Chrissie:

This is a test, a test of my strength and my family’s. Not of Tanner’s strength, he is the most courageuos person I know. He has not run marathons, nor done five Bikram classes in one day, and he can barely eat on his own now… but he is my HERO. I have done all of that in his name because I know the courage it takes for him and other children, who may not have DMD but who nonetheless face challenges, every day. Even on my worst day, I look at this gorgeous happy little man and I am in awe. Of the courage and strength and grace with which he faces each day. Mr Magoo, I love you.

Family is so important. I posted a picture today of mine, and out of the blue someone reminded me of how amazing my family was and is, the memories, of what molded me to be who I am… My parents, my sister, and all the of times we shared and laughed. My Mom and Dad gave my sister and I the world. They made us who we are. Thank you. Dad, you are always with us, with me. Mom, I can’t imagine a day where I cant talk to you… I strive to be that for my children. And to the friends in my life and the people I have met, I am blessed to have a list too long to name without making this note a few pages, but you know who you are.

And to Tanner, Booger, I love you. I know how hard it is every day for you. I know the courage it takes for you. To have lost your independance, slowly each day, to watch other children run and be free… I would lay my life down for you. So many people know you and love you..and others, well they will never understand the beauty and power of love. You have touched me and so many people… thank you, my baby. You were a cherub when you were born and you have blessed my life. xo

There are no words to add to that.

Please wish her love and strength.

UPDATE (from my mom):

Hi Cath

just talked to your sister – Tanner is out of surgery – he is in ICU but he appears to be okay.  He still has the breathing tube, but surgeon thinks it won’t be in too long. Tanner freaked out just before he went under – so his first words to Chrissi, after surgery, were “did I ask you if I was dead”.  In retrospect his freakout was probably good, because now the relief he feels about waking up is a big happy.

Love Mom

This week is a difficult one for me. It’s a week that would be challenging anyway – the first full week in August after BlogHer is one in which I am always drained and exhausted – but this is the second year of it being especially challenging – or the third, although I usually don’t count the year that I privately refer to as Year Zero – because it’s been two years since the year that was the best BlogHer year that suddenly became the worst BlogHer year.

The summer of 2009 was the summer that Katie and I did that awesome cross-Canada road trip with GM before BlogHer, and the year of the first Sparklecorn party, for which Tracey and I plotted the first unicorn cake and the first BlogHer appearances by Twilight stars (cardboard, but still) and the first NPH posters, and it was also the year that I did the Community Keynote, during which I sobbed my heart out and made a weepy ass of myself onstage in front of a bajillion women, but which was nonetheless wonderful in an emotionally cathartic kind of way. But it was also the summer that my dad died, the summer that I came home from BlogHer and found out that sometime during those few days, during the unicorns and the sparkle and the emotional catharsis, he’d died, alone.

And then the rest of the summer was all sadness, sadness such as I’d never known, and dark.

And so it’s been, in both of the summers since, that the first week of August, the week of BlogHer, and after, has felt like it marks a transition from light to dark, from sunlight to shadow, from happy to sad. Last year was complicated, of course, because BlogHer itself was complicated, what with the drama around Tanner, but even that – with its moments of heartbursting joy and its stretches of gutwrenching sad – just seemed to confirm what I was already prepared to assume: that this time of year, for me, will always see my heart drop, just at the moment that it is lifted highest.

This year, there are no obvious triggers for heartbreak – on the contrary, this year August marks a transition into some exciting life changes – but the shadows are there, gathered, lurking, and I’m caught between wanting to just linger with them, and acknowledge their presence and their force, and wanting to deny them, to insist upon looking forward and seeing only light.

But I mightn’t appreciate that light so well, if I force myself to forget, to unsee the dark. So I’ll walk in the in-between for a day or two, and work to keep my balance.

I should know by now that when my sister posts on my Facebook wall, it’s a bad sign, because my sister – bless her – believes that Facebook is the best way to reach me when there’s something urgent to communicate. That she could also reach me by phone or email – I’ll grant that I do not always answer my phone, but I do check my email regularly, and in fact only get Facebook messages through email, because I ALMOST NEVER GO ON FACEBOOK – is a detail of modern telecommunications that she has chosen to ignore. She alerted me through Facebook that I needed to call her when my grandfather died, and then again when my dad died, and – here we get to the thing that I really want to talk about – again last night when I needed to be informed that our mom has an aneurysm that is growing at an alarming rate and needs to be surgically removed at the earliest opportunity but, oh god, the doctors aren’t sure her heart can handle it and all of this was signaled to me by a public Facebook posting of CATHY YOU NEED TO CALL ME OR MOM. And then: LIKE, TONIGHT.

So, yeah. This is why I don’t like getting Facebook messages from my sister, who I otherwise adore. When those messages landed in my inbox, my heart dropped, and it dropped hard.

I called my mom immediately. I knew that the news had something to do with her – if the news pertained to Tanner, Chrissie would have just said CALL ME – and because I knew that she’d had a CT scan late last week, I knew that it had to do with the aneurysm, which we had all been hoping was not growing and not going to pose any threat to her life. So I knew that if my sister was freaking out on Facebook about me needing to call Mom, it was because the aneurysm was now posing a threat to her life. As I said, my heart dropped.

“Mom.”

“Sweetie! I was just thinking about you! And I was just opening my computer right this minute!” Presumably to log on to Facebook. Or post her prognosis to Twitter, or to her blog. God, my family.

My mother is probably one of the funnest people on the planet. Even when life takes its grimmest turns, my mother can always find some point of humor. Even when she’s angry, she makes jokes, and cracks herself up, and it was one of the banes of my teenage existence that every time I was mad about something, she would make faces at me until I laughed and forgot what I was mad about, which usually made me madder. It was complicated. She’s complicated. I adore her

“Mom, if I’d gotten an email from you that said oh, hey sweetie, things have taken a turn for the worse and I’m facing life-threatening surgery, but don’t worry! I’d have had to never speak to you again. These are things you call about. Like, immediately.”

“Oh, Catherine Ann.” My mother is able to communicate the rolling of her eyes over the telephone. She did so.

“Oh, Mother.”

My mom and I have gotten to a stage in our relationship wherein our roles are more often than not reversed. I nag her and pester her and give her unsolicited advice. I complain that she doesn’t tell me anything. I complain that she doesn’t call. I say things like, you know I worry. I said it last night. I said it, like, five or six times. You know I worry so you need to promise me that you’ll call when you get news like this. You know I worry so you need to let me know the minute you hear from the doctor again. You know I worry so you need to promise me that you’ll take it easy.

You know I worry so you need to promise me that you’ll be okay.

You need to be okay.

You know I worry.

I do worry. I worry relentlessly about my mother, and have done since my dad died. When my dad died, it was the realization of my worst fear, the fear that I knew would be realized someday but had nonetheless managed to stay in denial about because, god, it is just easier on the heart and soul to believe that your parents are immortal. It doesn’t matter if death is already your shadowy companion, a persistence presence in your life, because even when you know, you know, that death is inevitable, you can still deny it, and you do, because death is just not conceivable until it happens. So it is that we all of us in our family live with Tanner’s prognosis in a manner that is best described as ‘mindful denial;’ we know that his death is inevitable and proximate, but we live with him in the spirit of death’s impossibility. The Tanner-less future is inconceivable. Or, rather, has been inconceivable. It is more and more difficult to deny that future. That’s a crushing thing, and it’s because it is a crushing thing that we’ve compartmentalized it for so long.

My dad’s death made all these things more complicated, because his death, as I said, was the realization of my fear of his death, and the confirmation that, yes, death happens, which is to say, it made death conceivable in a way that it just never before had been for me, not even with the death of my grandparents or my beloved cat Sam or that one baby bird that I saw get run over by a car that one time. It made death real. It showed me what the world looked like without my dad, a world that had heretofore been unimaginable to me. And it made it possible for me to imagine a world without other people that I love. It made it possible for me to imagine a world without my mom.

My mom and me, in our world, back when it was still black and white.

I am terrified of that world. Terrified. I don’t even have words for that terror. It’s a terror that makes me feel small, that takes me back to being six or seven years old and slipping into my parents’ room in the middle of the night, blanket in hand, to sleep on their floor so that I could make sure that nothing happened to them, that they didn’t just somehow disappear.

But I know that the day will come when I will have to live in that world. I know that because I am already living in a world without my dad. I know that it’s inevitable, unless something happens to me first, which, god, is a whole other bag of soul-rattling anxiety related to fears concerning my children and my own role as a parent. So I have to live with that knowledge, that fear. I have to live with it, but not let it get in the way of living and loving, and living with and loving my mom. I have to not let it get in the way of celebrating my mom. I have to let it be a reason – to be more reason – to always celebrate my mom, to exult in the wonderfulness of my life with her.

Because she is awesome, and I am lucky to have her, and that’s all that matters.

I just need to keep her off Facebook.

(I had intended to write a post today about how my mom was and is my mentor mom – she’s the original bad mother – but I’ve been so rattled by the news from last night and all I can think about when I think about my mom is all the hand-wringy stuff that I rambled on about above, which is entirely against the spirit of the last few lines of that post, but this is a process, people, okay?

Anyway. I made a dedication to her here, at the mothers2mothers Tree Of Hope. You can make a dedication to your own mentor mom. Celebrating moms is a good thing. Celebration is a good thing, full stop. I need some of that spirit today.)

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.

My eyes already touch the sunny hill.
going far ahead of the road I have begun.
So we are grasped by what we cannot grasp;
it has inner light, even from a distance-

and changes us, even if we do not reach it,
into something else, which, hardly sensing it,
we already are; a gesture waves us on
answering our own wave…
but what we feel is the wind in our faces.

– Rainier Maria Rilke, A Walk.

A wish for the new year, for myself, and my loved ones, and everyone: to answer our own waves, all of us. And to grasp, or seek to grasp, that which we cannot grasp, and to let ourselves be changed. And through all of it, always, to feel the wind on our faces, to let it blow our hair and kiss our cheeks and to love it, to welcome it, even when it stings.

I love Christmas. I love it with the fiery heat of a blazing winter fire and a million twinkling fairy lights. I love the sparkle and the twinkle and the plum pudding and the eggnog and the tinsel and the gift wrap and the stockings and the carols and the hymns and the stories, all the stories, every single one, from the manger to the magi to old St. Nicholas to the Grinch (spare me the pieties about not telling tales to children. A childhood without the magic of stories, woven so brilliantly as to obscure the lines between fact and fiction, make-believe and make-of-that-what-you-will, is no childhood at all, in my opinion.) I love it, all of it, the snow-globe perfection of it, the gentle sheen of protective glass over perfect, brilliant moments in time, the way that it can just take one such moment – a moment in which the crackle of the fire makes you feel perfectly, contentedly warm; the flash of belief in a child’s eyes when you tell her that the jingling of bells that she hears is the music of flying reindeer; the fleeting frost-kiss that is a snowflake landing on your cheek – and make that moment expand almost infinitely and make you forget that outside the snow globe, life’s storms come pelt hail and bend your umbrella and soak your mitts.

I need that kind of forgetting. I’m finding it hard to find that kind of forgetting. There are cracks in our snowglobe – cracks that I can’t talk about, because this snowglobe contains more lives than just my own – cracks that threaten split and break and let all the rain in and all the glitter out and there just isn’t enough glue and duct tape in the world to guarantee that that won’t happen, there are no guarantees, and so I must just push forward and do what I can shield the glass over the heads of the children – my children, my sister’s children – and keep them in their own little globes of glitter and joy so that the storms can’t reach them. Or, at least, not reach them yet. They should at least have Christmas.

Because, Christmas. Jingle bells and carols and candy and presents and love and hymns and magi and starlight and little drummer persons, singing their hearts out with voices as big as the sea, keeping all the hurt at bay: we need that. We need that.

*****

I posted the questions (the soul-searching questions, nyuk) behind the tripped-out fairy-dorkmother-cum-inner-celestial-being portrait. I dare you to answer them yourself. (If you do, let me know. I need the smiles.)

Also: you should totally enter this contest. Because, look: I know that you have ten trillion photos and video clips stored up, and there’s got to be at least eleventeen there that could win you a prize. Just enter here, and then post the link to your entry at my post here, and then sit back and bask in your own awesome and see it garners you a Sony Bloggie, or better. And let me know what charitable organization in Canada should get an Intel notebook, and also earn karma points, or get on Santa’s nice list, or just feel good, or whatever.

When my sister was very young, she appointed herself my protector. It didn’t matter that she was two years younger: I was a shy, ashmatic child, gangling of limb and totally lacking in physical grace, whereas she was athletic and boisterous and tending toward ferociousness, and those qualities more than made up for our age difference in confrontations with bullies. If somebody teased me, she’d be right there, waving chubby fists and hollering profanities (where she learned them – raised, as she was, in the bosom of a very Catholic family – my parents were never able to figure out) and daring, daring, whoever it was that had the temerity to confront her sister to take on her as well. And there we’d stand, together: me, tall and awkward, blushing and stammering and willing myself to disappear, and her, chubby and gap-toothed, stomping and yelling and demanding our antagonists to BRING IT, and although it was sort of embarrassing to me – having my little sister stick up for me – I was also always grateful, and proud.

It was her and me against the world, and we were happy that way. We moved, a lot – every two years or so – and so we were, by necessity, each other’s best friend. Our circle was us, and our parents, and our first loyalty was always to that circle, and if my loyalty was quiet and intense, recorded in diaries and squeezed tightly, privately, to my heart, hers was loud and insistent, proclaimed in ferocious outbursts to anyone who would listen. We were the Connors girls, Cathy and Chrissy, Chrissy and Cathy, and we came as a package. An odd package, to be sure – one so thin and quiet, the other so robust and loud – but one that was nonetheless bound tightly and, I think now, in hindsight, beautifully.

The dynamic between us shifted as we grew older, and family life became more complicated – a long story, that, and one that can be put aside for another time – and there were more and more times that I became the protector and stood up against whatever forces of the universe were bullying my girl and waved my fists and shouted BRING IT. And becoming her protector became part of my growing up, and had everything to do with me leaving the shy, awkward girl that I was behind and moving forward to become the strong, confident woman that I am. And yet no matter how much strength and confidence I believe that I possess, I worry, now, that it’s not enough, and that fear touches a part of me that I had almost forgotten, the part of me that was bullied in grade school and that looked to my younger, more spirited sister for strength and inspiration. For protection.

I’m doing everything that I can to protect her now, but the forces bearing down on her are too strong – her son, dying; her heart, breaking; her life, collapsing around her – and I can’t stop them, and I’m afraid, and I feel like a kid again, a kid who couldn’t fight her battles alone, a kid who is suddenly missing her chief ally, a kid who suddenly needs to get brave and protect her chief ally, her best friend, because she needs her help, my help, like, now. And although I know that I’m not really alone – I have our family, and I have all of you, friends and supporters in this amazing space right here – it still feels that way, in the darker moments, like when I had to fly away from her while she was mid-crisis, like now, when I can’t reach her on the phone, like this whole span of time stretching before us, the weeks during which she’ll be on her own, the weeks during which I wish that I could just whisk her away, take her away from everything that is hurting her and give her a break, give her respite, give her peace, if only for a day or two or four.

Because I can’t stop what’s happening, and even when I throw myself in front of it and try to deflect some the hail of badness, it’s not quite enough, it’s never quite enough, and if only I could just pull her away, grab her by her hand and run, run fast and hard, to somewhere that we can hide, together, like we used to – in the trees or under blankets or in whatever fort or camp we could construct in our imaginations – and catch our breath and tell each other that we’re brave enough to go back out there, we are.

And then go back out there. And be brave again, because we must be.

I don’t have that fort, that treehouse, that wall of blankets, not anymore, and I don’t know where to find it. And I feel exposed. And I feel like I’m letting her down. I’m doing my best, but it feels insufficient, and although I say that I have to let go of the idea of saving, of needing to save, I can’t quite let go entirely, because this is my sister, this is my best friend, this is the girl who always did her very best to save me, and don’t I have to try?

I have to try. Whatever that means, whatever that looks like, however un-save-y that turns out to be – even if that turns out to look nothing like saving at all, and everything like just waving fists and then running and hiding and escaping, even if only for a little while – I have to try.

I love this boy. I can’t save this boy. Nor can I save his mother’s heart from breaking. Nor can I save my own.

But I have to let go of this idea that I should be able to save anybody. I have to let go of the idea that anything short of wholesale rescue, anything short of securing the happy ending, anything short of saving the day, is not enough. And then I have to seize and grasp and embrace the idea that what is enough is reaching out with my heart – however sore, however shattered – and letting it be there, to absorb and reflect love, to absorb and reflect joy, and to cushion our falls.

(There is good. There is. Despite how hard on the heart these past two days have been, there were good things. Not least Tanner’s smile and his laugh and his irrepressible hope, but also the promise – now in the planning – of fulfilling his Biggest Wish, with the help of his community and awesome people like this lady. These are good things. These are precious things. These things are keeping our hearts somewhat, sort of, close to intact.)

This weekend I’m flying out west to visit Tanner and family, and to say that my anticipation is bittersweet is understatement in the extreme. I am, of course, thrilled to be seeing them, and to be seeing him, and, because I am making this trip to get things started on Tanner’s Biggest Wish Project, there’s an extra note of sweetness to the journey. This trip is about good things, happy things, and I know that there’ll be many smiles and high-fives and exclamations of joy.

But Tanner is still dying, and as the days go by his decline accelerates, and things get more difficult for my sister, and although I am always aware of this – I think of it daily, hourly – I know from experience that when I step off the plane and see them – run to them, hug them – it will hit me full force and it will take every ounce of strength in my heart and soul to not burst into tears. But I will find that strength, and I will hold that strength, and I will give what I can of it to my sister, and I will make my two days there two days of joy and smiles and hope, so much hope, and I will save my tears.

And then I will cry on the flight home.

This is turning out to be one of those weeks that is usually described as one of those weeks. I have a really bad head cold. Jasper isn’t sleeping. It’s raining outside. Somebody died, and it was the kind of death that’s difficult to explain to neighbours who catch you on your front porch, sobbing. Yes, I lost someone. She was a reader of my blog. She sent me lots of awesome emails. (I tried just saying I lost a friend, but then the neighbour asked, oh, a close friend? And I was like, well, in a way. She once offered to sacrifice her goat for me. Which was confusing, so I tried to explain, but for some reason, reader of my blog was more confusing than sacrifice a goat. Next time I’m just going to say, distant cousin.)

And I can’t seem to get my shoes on properly.

Not shown: fully functioning grown-up.

Which is maybe the result of the aforementioned Very Bad Head Cold and the compromised sleep, but I can’t honestly say that it’s not also just a function of me being a twit who lacks proper life skills.

And that’s a little depressing.

(Semi-relatedly: if one – I’m not going to say who – has a 28 month old who is waking up screaming in the night, possibly due to night terrors, although possibly not, because he does actually fully wake up and then start demanding cookies and trains and coloring books – all at much the same shrieking pitch – and not settling back to sleep – in his bed, his parents’ bed, anywhere – for, like hours and hours and hours until everyone is very nearly dead of exhaustion, WHAT DOES ONE DO?)