Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.

They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.

Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods.

Rods in his spine. I imagine steel, or rebar, those skinny ridged bars that are laid in concrete, because even concrete isn’t all that strong, even concrete needs extra support, and what are muscles compared to concrete? Even concrete sags, to say nothing of wood and fiber and the things of which dolls and puppets are made, to say nothing of people, made of flesh, made of muscle. This is not reassuring. This does not make me feel better. Muscles, concrete, steel, wood, puppets… this is a grim fairy tale.

I focus on the rods, of course, because they are so visual, so visceral, so evocative of things that are monstrous (Dr Frankenstein and his wires and bits) and things that technological (”we can rebuild him“) and things that are magical (Pinocchio’s stiff, wood-rod arms and legs, made flesh, made malleable, with one wave of a fairy’s wand). I focus on the rods, because they unnerve me, and because they are, in a twisted way, a symbol of some elusive hope. They will hold him up. They will support him. They will be his backbone, now that his God-given backbone has collapsed. They will defy God. They will hold him up, now that God is letting go.

******

His heart is going, too. They have him on medication, the kind of medication that they give to grown-up men, to men who have had heart attacks, to men who fall like thick trees, clutching their chests, lives flashing before their eyes. He is just a boy, and yet his heart is weakening, slowing, limping under the weight of years that he will never see.

I am trying to not think about that, because there are no rods for the heart.

******

The thing about the rods is, they represent, right now, everything that we worry we don’t have, everything that we worry we can’t give. Tanner’s body is failing and growing all at once; he becomes heavier and weaker, weaker and heavier, every day, and my sister struggles, alone, to care for him. To lift him is to lift limp bulk. Dead weight. Dead weight. She can’t do it alone. (What if he can’t die at home? — That can’t happen — But what if? — It can’t — What if?) She tries and she tries, but she is no Blue Fairy, she has no magic wand, only her arms and her back and her determination, and she fights with these, she fights through these, to lift her growing dying boy, and she is getting tired.

My heart breaks for her. My heart breaks for her, across and through and up and down and sometimes I worry that the pieces will shatter such that I won’t be able to put them back together and then where will I be, where will she be? There are no rods for the heart, but sisters can be rods, and I am trying to be hers.

It’s hard. I am not made of steel. And who wants to be, really? We want to be flesh and bone and blood and muscle. Our weakness makes us human. It is because of that weakness that we feel, that we ache, that we thrill. Pinocchio wanted that. Pinocchio did not want the wood, the strings. Pinocchio wanted to be real. Pinocchio yearned to be real.

We are real. Tanner is real. No amount of rods or heart medications or mobility devices can change that, but that means, too, that none of those things will save him.

Being real is precious, but it is sometimes hard to bear.

*******

I say there are no fairies, but that is not quite true, because so many are coming forward to help, to wave magic wands, wands that can’t give Tanner back his muscles, but wands that might give him, give us, strings. Please support these efforts, if you can – they’re outlined on my Tanner page, here, below his life list. (You can also follow updates on what’s happening by following the #TutusForTanner Twitter stream.) We need this magic. We really do.

And if you’re going to be in New York next week – or even if you’re not – will you wear a tutu? (FAQs on tutus at the bottom of this page.) It would be awesome if you would. I’ll be wearing mine all week. I might not be a fairy, but I can certainly do my damnedest to look like one.

I’m struggling, a little. Maybe a lot. I’m not entirely sure why. Maybe it’s just me buckling under the weight of too many sad things. Maybe it’s that thing that happens when you realize that you’re not as strong as you thought you were, that you’re not invincible, that you can’t stop bad things from happening, that you can’t make happen all the good things that you want to happen, not all of them, not as many of them as you need.

Maybe it’s an identity crisis. (What if you’re not really bad, whispered a wise woman to me this weekend. What if you’re not so edgy? What if you are good, and soft, and vulnerable? What if you want that? What if? And I cried. Oh, how I cried.) Maybe it’s just my soul, tired from trying to figure all this stuff out. Maybe it’s all those things. Maybe it’s none of them.

It’s probably all of them.

I don’t know. I’m sick again, and my head hurts, and I’m tired, and I just want to lay a while in the shade of a maple tree and stare up through the leaves to the sky and the sun and let my mind go blank and just be. No thinking, no worrying, no fretting, no planning, no plotting, no fighting, no struggling – just being, there, in shade of the tree.

It is, of course, our greatest fear. It is the bogeyman in our closet, the monster under our bed. It is the shadow that lurks behind every tree in the wood, it is the crackle of every twig, it is the sudden silencing of birds, the darkening of the sky, the unexpected chill in the air, the thing that stops our breathing, that quickens the beat of our hearts. And we cannot tell ourselves that it isn’t there, that it is just the stuff of fairy tales and scary stories; we cannot shine the flashlight into the closet or under the bed or out toward the trees and reassure ourselves, because it is out there, it is, maybe just as a possibility, maybe just as the faintest possibility, but that possibility is what gives it air to breath and matter to take form.

We could lose our children. Some harm could come to them. They could be erased from the landscape of our lives and our hearts could, would, break, shatter into a million, billion, trillion pieces and we would never recover, not really.

My heart stopped when I saw Heather Armstrong’s tweet that Katie Granju – who I don’t know personally, but admire and respect from afar – had lost her son. Suddenly. Unexpectedly. My heart stopped, and when it started again, it beat with a different rhythm and I thought, it is not possible to go through that, it is not possible; one cannot survive, one simply cannot.

One’s heart would stop beating, would it not? How could it not?

It wouldn’t – it doesn’t – of course. The heart does, as the song insists, go on, even after the worst griefs. It restitches itself, it mends, it requires none of the king’s horses and none of the king’s men, just time and love and, I imagine, faith. But it always remains scarred. It is transformed.

My family is losing a child. You know this story. It is a slow loss. The ticking of the clock has been louder, faster, of late, but still: the loss will not be sudden. It will not be unexpected. We have watched its approach for a long time now. We see it coming. This monster is not under our beds or in our closets or in the woods. It stands in the corner, in plain view, tapping its feet. We have come to know it. Knowing it does not make it any less terrifying. I have wondered, sometimes, whether it would be better to not see the monster, to not know. My sister and I talk about this, a lot. It’s better to know, she says. It changes your heart in advance; it strengthens it, readies it. It teaches you lessons, the monster. You cannot ignore those lessons.

You hug your children more.

There are days when I question this, when my own grief about Tanner and my sorrow for my sister become overwhelming. When I’m forced to confront questions about life and death and heaven and love and the soul. When the monster is too hard to ignore. Don’t ignore it, my sister says. Accept it.

I can’t, I can’t. I look at Katie, suddenly facing the monster, and my heart shudders in terror, and I know, I know deep in my bones, that when the monster steps forward for Tanner, I will curl up in a ball and shove my fingers in my ears and sing LA LA LA LA and I will deny it, deny it, just like I did when it came for my dad, just like I still do when I think of my dad, and I will not be able to look up, I will not be able to move, I will not be able to help. I am ashamed, knowing this. I am so ashamed. I am struggling to get past it, but today, I am failing.

It remains, as always, to say the usual things: hug your children. Hug them hard. Hug everyone you love. Know that you will lose them, or that they will lose you, and conduct yourself accordingly. Acknowledge the monster. Let your fear drive you to greater love. Let love be your soul-armor. Trust it to protect you.

Even though you live in doubt, trust it. It’s all you can do.

(You can find out about helping the Granju family through this terrible, terrible time over here. Please consider doing so. And then hug your children, again.)

It’s my birthday. I’m forty years old today. Forty years old. Isn’t this the birthday where I get canes and bifocals as gag gifts and t-shirts that say things like I’m not old, I’m vintage and at least one coffee mug with the words lordy, lordy look who’s forty printed along the side?

I’m not old enough to be forty. Really, I’m not. It’s not that I fear aging or think that anyone over forty is hideously uncool – it’s that I just cannot believe that I am grown-up enough to have the numbers 4 and 0 apply to me in any context other than grade point averages. I’m not a grown-up; I’m a girl in a state of arrested adolescence. Sure, I have kids, but if anything that has only driven the point home more clearly: ain’t nobody here but us childrens.

I was at Disneyland last week, without my kids, which you would think – given the company of hordes of children and giant chipmunks and dancing teacups – would cause anyone over the age of, say, 24 to be hyper-conscious of their adultness. But not me. I giggled and skipped and squealed and might have knocked over a twelve year old or four running to get in line for Space Mountain. I cried during our special guided walking tour – there’s no Journey To Inner Space ride anymore! My Dad took me on that! – and told anyone who would listen that I wanted to be an Imagineer when I grew up. I ate Mickey Mouse shaped cookies and – please don’t tell anyone about this, okay? – wished, fervently, that the princess dresses came in my size and that I could spend an hour or two in the Bibbity Bobbity Boutique getting fitted for a tiara and having glitter sprinkled on my cheeks. (Every time I saw the sign for the Bibbity Bobbity Boutique I shouted Bibbity Bobbity BOO-YAH, and more than one adolescent girl rolled her eyes at me, so it’s probably for the best that they wouldn’t let me in there, but still.) I wanted to move into Sleeping Beauty’s castle. I wanted to spend weeks in Tarzan’s tree house. They had to pry Katie and I out of the Zephyr after letting us ride it four times in a row.

Mickey ears are almost as good as tiaras, but also, totally not.

How can I possibly be considered a grown-up? How can I possibly be forty?

I was about six when my parents took my sister and I to Disneyland – we drove from Vancouver to Anaheim in our camper, camping our way down through Washington and Oregon and Nevada – and what I remember most about that trip – other than getting the mumps on the way back – is that Mom and Dad seemed to enjoy Disneyland more than we did. We loved it of course, but my parents loved it, they reveled in it, and when my sister and I started to lag at the end of each day, my mother would crouch down and say, let’s just go on Pirates of the Caribbean one more time, okay? Okay? I can still see the anticipation on her face. She didn’t seem a grown-up to me then. She didn’t seem a grown-up to me for a long time after.

I think that she started to seem grown-up sometime around the time that she turned forty. Which was when I turned thirteen, so it’s possible – it’s likely – that that was a function of my adolescence, of me entering the stage of girlhood wherein one’s parents begin to seem impossibly old, but still. I remember when my mom turned forty, and when my dad turned forty, and the fact that I am turning forty – and that my youngest child has just turned two, and that my oldest will soon graduate junior kindergarten, and that I have my own little family now, and that my mom is so far away, and that my dad is not here to see any of this, that my dad is gone – seems impossible, impossible, as impossible as magic wands and pixie dust and relocation schemes involving a Goofy moving van, Sleeping Beauty’s Castle and a sub-prime princess mortgage.

I suppose that I imagined, that I always imagined, that as I grew older I would carry my childhood with me, and my family, too, and that we would someday all go to Disneyland together, children and parent-children and grandparent- children, and that we would all ride Pirates of the Caribbean together and laugh until our sides hurt, but time has moved too quickly for that; time has moved too quickly to make those dreams come true, time might continue to move too quickly to allow for so many dreams to come true – will we get to Disneyland with Tanner before he dies? will he get to introduce Emilia to Buzz Lightyear, as he’s asked, or take Jasper on the submarine ride? – and I suppose that it’s that that has me drinking deep from the cups of melancholy this morning, rather than feasting on birthday breakfast cupcakes. I am a grown-up: I know this because I have felt the passage of time blow by like the coldest and most merciless wind, and I feel it blowing still, and I know that no matter how closely I hold my inner child, no matter how desperately I cling to her, neither she nor I will escape the sting of that wind.

I am a grown-up. But I’m also a child who loves Disneyland, who has lost her Dad, who fears losing others she loves, who believes in fairies but worries that sometimes, the fairies fade, no matter how hard you clap your hands. And I’m not sure whether I should just keep clapping and believing and wishing the hurt and the fear away on clouds of pixie dust, or whether I should just do whatever it is that grown-ups do to not be sad and afraid, like drink more coffee and take more Ativan, which can be almost as effective as pixie dust, if my own experience is anything to go by, but far less magical. Or can I do both? Can’t I please do both?

I don’t want to stay in Neverland forever. I just want to visit once in a while. Is that too much to ask?

*That was a rhetorical question. I’m closing comments, because I need to go off the grid for a day or two to eat cupcakes and pretend that I’m still in Neverland, albeit a Neverland with good espresso.

*Oh, also: my mom wrote me a birthday letter at her blog. It didn’t make me cry too much and has nothing to do with the fact that I will need five cupcakes to perk me up this morning instead of two.

There’s a home for the elderly that Emilia and Jasper and I pass every day on our walks to and from preschool and junior kindergarten and ballet lessons and karate. Emilia calls the ladies who live there her ladies – “we need to wave to my ladies, Mommy!” -  and she waves and blows kisses to them when we see them sitting in their enclosed verandah, and, when they come out outside for their daily constitutionals, she stops for chats and hugs. They give her extra candy at Halloween. She thinks that they’re awesome. “Just like Grandma, only not so far away and also they give me candy instead of cake.” Which is an important difference, you know.

The other day, after passing her ladies and dispensing the requisite waves and kisses, Emilia asked this: “why are some grandmas in wheelchairs?”

“Because they’re older, sweetie, and their bodies aren’t working so well anymore, and they can’t walk as much as they used to, so they need help. Wheelchairs help them get around.”

“Are they going to die? Because their bodies aren’t working?”

“Not just yet, I don’t think. But yes, when people get much older, they’re closer to dying.”

“And when their bodies aren’t working they’re closer to dying too?”

This is what you get when death is a semi-regular topic in your household. “Yes, sweetie, when their bodies aren’t working.”

“Is Tanner going to die?”

Ah. Ugh.

“Because he’s in a wheelchair, and his body isn’t working. Is he going to die, Mommy?”

It’s moments like these that one wishes, fervently, that a meteor would blast out of the sky or a unicorn would leap out from behind a tree or that a team of nude marathoners would streak by on the street because, seriously, flapping genitals and shooting stars and beasts of myth and legend would be easier to account for than the fact that one’s child’s much-loved cousin is dying.

To say that I chose my words carefully is dramatic understatement. “He is dying, honey. Not right now, though.”

“When?”

“We don’t know.” I clutched her hand and prayed for unicorns. “We don’t know.”

“Well, when he dies I need him to take a letter to Grandpa. I’ll write one for him, too, but there’s one I need to send to Grandpa and you said that he doesn’t have a mailbox so someone needs to take it to him. Can we phone Tanner and ask him if he’ll do that?”

No unicorns appeared, no meteors blazed through the sky, no nudists ran past us in the street, and when she asked if I was crying, I said no, no, there’s just something in my eye. And then I prayed even harder for unicorns.

******

I sent a letter with my dad when he died. I wrote a letter to him, and asked the funeral director to lay it upon his body when he was cremated. I said secret things, loving things; I gave thanks; I made promises. And I asked him if he wouldn’t mind delivering another letter, a letter to my Grandma, a letter that I had written many, many years before, when she died, and that I had asked him to give to her, a letter that I found, after he died, in one of his secret boxes of letters, a letter that he had kept alongside his suicide notes, a letter that, I think, reminded him of how powerful love and how powerful life and how powerful death and that kept him from fulfilling the his suicide wishes and that kept him tethered to life, and the joy of life, whenever such joy was faint. I asked the funeral director to place that letter upon his body, too, so that he might deliver it to her, because I knew that he’d always intended to, and that he’d be glad.

And so those letters burned with my father’s body, and that they did provided me – still provides me – with some comfort. And him too, I think. I hope.

So. I understand why Emilia wants to write him a letter. I know why she wants Tanner to deliver it. My heart weeps, knowing this.

******

We don’t really talk to Tanner about death, or at least, not about the fact that he’s dying. When my father died, we stumbled around the subject, struggling to frame it in the most positive terms – Grandpa had a good life, Grandpa was so loved, Grandpa will always be with us in our hearts – and to balance the sadness with joy – it’s okay to be sad, because we miss him, but we’re sad because we still love him and will always love him and love never dies and that’s good. That’s good! We threw a birthday party – at the lake, on the beach – for him, in lieu of a memorial, so that there could be balloons and cake and candles, so that the kids, and Tanner especially, would experience the occasion as joyous rather sad, a celebration rather than a goodbye. We called it his last birthday, and Emilia and Jasper and Sophie and Tanner loved it, and even though the wheels of Tanner’s chair got stuck in the sand and seagulls stole some of his cake, he declared it a good day. “This was a good day,” he said, and we all agreed. We saved our tears for later.

My mom and discussed at length whether we were wrong to try to contain some of our sadness about Dad’s death in front of Tanner. Wouldn’t we do better, I wondered, to be honest? To let him know that it’s okay to hurt, to be sad about death? So that he knows, when the time comes, that we’ll be hurt and sad for him? My mom disagreed. He knows we’re sad. But he doesn’t need see us in the full bloom of pain.

We still don’t know how to navigate this, this narrow valley between the joy of life and the fear of death, this valley that gets narrower and narrower the further we walk. How do we openly exult in the sunlight without acknowledging the shadows? How do we make plain how precious is each day without acknowledging that we are counting those days? How does one talk about death with a child who is dying? How does one talk about a child dying to the children that love him?

How does one prepare them for the letters?

Emilia cannot make her phone call, of course. We are not making preparations for Tanner’s death, except for all of the ways that we are, all of the ways that we prefer to think of as life, as living, as seizing the days, and so now is not the time. I don’t know that there will be ever be such a time, although perhaps there should be, perhaps there needs to be, and perhaps this angst is just my soul recoiling against what this all means.

I will let her write her letters, and I will save them for her, and when the time is right, maybe – sometime, when we are all holding hands and walking through the narrowing valley – she will ask Tanner to take them and he and she and we will be comforted. Maybe. Maybe.

(No, really. It’s an actual holiday. You should probably take the day off.)

(I’m taking the day off. I’m actually going to take a couple of days off. I need a little break from the Internet. My heart is heavy and my head is full and I just don’t know how to put it into words. I don’t know if I can put it into words. If I should. So. I need a few days. That’s all.)

Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…

The clock ticks so much louder now. Tanner’s condition is aggressive, relentless: his muscles are breaking down quickly, and as his muscles break down, so does hope.

My sister and I have never spoken in terms of hope. There’s no cure for Duchenne’s Muscular Dystrophy, and even though research goes forward, and clinical trials are run, Tanner has never been eligible for any experimental treatments, largely because of the nature of his genetic condition (he lacks the relevant gene entirely, and most research investigates the mutation of the gene. They refer to the lack of the gene as a deletion, which I’ve always found interesting and sort of sinister, like the gene was there at some point and then was taken away, erased, as if, when God was creating Tanner, he was plugging away at the code, tapping on a keyboard, and then was overtaken by some malicious whim, and hit backspace-backspace-backspace just at the chromosomal locus of Xp21, where the dystrophin gene is created.) So we’ve never spoken of hope, beyond the general hope that whatever years Tanner had would be good years, fulfilling years. But those years are dwindling, too quickly, far more quickly than we ever imagined – most boys with DMD make it at least into their early teens, but it will be a miracle if Tanner makes it to 12 – and the quality of those years is ever-declining, as Tanner loses his ability to do the things that he loves, the things that have sustained him since he lost his mobility, things  like drawing – trains and rocket-ships and dinosaurs – and plucking at a guitar and playing Nintendo.

And holding his own fork, and swallowing his own food, and keeping himself upright in his wheelchair.

We don’t speak about hope.

We speak about what we can do, what we can give him, how we can fill what remains of his life with joy, and we cry as we do, because there is so much that he wants to do – to take his cousins to Disney and introduce them to his favorite characters (that he could not join them at DisneyWorld was hard for him), to take a trip on a train, to swim with dolphins, to meet an astronaut – and so little time and so few resources and, always, the terrifying prospect that, soon, we won’t even be able to give him home, because as his condition worsens the harder it is for Chrissie to look after him on her own – the harder it is to lift him, to move him, to monitor him while trying to survive as a working single mom – and the more likely it seems that he’ll have to go into care and we cannot let that happen, we cannot, but we do not have magic and we do not have fairy godmothers, we have only our hands – and our feet – and our hearts and hearts, for all their worth, cannot work miracles. I don’t think. I don’t know.

All I know is, I have to try. I’m not sure how or by what means, but I have to try.

*I am still doing my 100 Miles For Tanner and I am still wearing tutus, although I am struggling against the inefficiency of it, and, yes, the seeming futility of it – there is hope to be drawn from raising awareness of DMD and helping raise money for research, but these days, for us, are dark, and hope for other boys feels – and this terrible, terrible I know – like such small consolation. But it is, still, hope – and raising awareness in Tanner’s name is something that will provide consolation as the days get darker still – and I will continue to pursue it, and hope that you will join me. But I need to do more, and I need to figure out how to do that, and it’s going to keep me up at night – it does keep me up at night – and so bear with me if I seem a little dark and cranky – darker and crankiER – in the coming days. Virtual hugs – and for Tanner, whatever kinds of prayers or good wishes are comfortable for you – appreciated.

Emilia wants to know what happens when we die. She asks a few times a week, on average, sometimes more, sometimes less, depending on whether or not we’ve spoken about my dad or about Tanner or about dinosaurs. Today, she asked because they’d been talking about the Easter story at school. She wanted to know why Jesus got to fly up into the sky, and Grandpa didn’t.

You burned him, didn’t you? she asks. How could he fly after that?

Explaining death is one thing. Explaining the cremation, the afterlife and Divine resurrection are something else entirely.

We’ve had a lot of these talks. We’ve been having them since my dad died, since she watched me collapse and shatter into a million tiny pieces and wanted to know why. They’ve been good talks, but I fear that they’ve been better for me than they have for her: she has grounded me with her questions, and given me solace with her answers. Because she has her own answers, she pulls them from the sky or the stars or the spirits or her soul and she lays them bare and shares them with me, her stories, the stories that she weaves to make sense of all this mysterious loss, this loss that I can’t explain, lapsed, struggling Catholic that I am, groping for a faith that eludes.

This is why I am failing at this: I have no answers for her. I have no answers, only wishes, only hopes, only deeply held hopes that I ache to grasp with certainty, but which remain – for me, who is grasping at that lost faith, that faith that once upon a time held answers – ephemeral, evanescent, faint. So when she asks me, where did Grandpa go, I say, I think that he went to a place called Heaven, a wonderful place full of love and light where we will someday see him again, and I cry as I say it, because I don’t know for sure, and I wish with every particle of my soul that I did know, that I could know, because I would give anything to know, anything. And she says, in the softest of voices, I know where he is. He’s in his Death House, the one that I made him, and someday we will go there.

– Oh, sweetie…

I know that you think he’s in that box, but he’s not, he’s in his house in Heaven, and we’ll go there someday, and you’ll see, and you’ll know.

And my heart expands, and breaks.

******

My friend Kate, who has known terrible loss, wrote the other day about thumb-wrestling with Death as she prepares for the death of her grandmother. She didn’t like doing it, she said, not least because he has longer thumbs, which I imagine is true. She asked her readers to not leave condolences, but, instead, memories, of their mothers, whose flour-dusted hands wiped tears and whose lipsticked mouths left kiss-marks and whose warm arms were the safest place in either earth or Heaven, so that we might reflect upon motherhood persisting against and beyond death, and I said this:

I have nightmares, about losing my mom, about losing my mom after losing my dad and being left, alone, without them, an orphan, my longest and most deeply held fear. I have nightmares, about fighting with Death, about begging him to stay away.

I’m sorry. I wanted to say something lovely, about my mom’s belly laugh and her twinkling eyes and her perverse imagination, the one that conjures alligators in closets for my daughter to hunt and her ability to bake a lemon cake, right on the spot, just because you asked. But I’ve been having nightmares.

I have been having nightmares, nightmares wherein my dad is already gone and then my mom goes too and I am left to suffer the pain of my greatest fear, the fear that drove me to sleep on their bedroom floor at night, the fear that kept me from sleepover parties and sleep-away camp, the fear of losing them, of being left alone, an orphan. When I was child, my good Catholic parents would comfort me and soothe me and brush my hair from my tear-dampened cheeks and tell me that they would never leave me and I clung to that, even as I knew it to be false, I clung to it, and when I flew west to deal with my father’s death some months ago (an eternity ago, a second ago) I sat in my seat on the plane and cried and cried and cried like the little girl that I had suddenly become again, having flashed backwards in time to that experience of knowing that it would happen and that it would hurt, bad, worse than anything else I could imagine, and then flashed forward again to discover that yes, yes, this is exactly how it feels, and it is terrible, horrible and bad.

And so now I am terrified of having the loss compounded. And I am terrified of communicating – directly or indirectly, intentionally or not – this terror to Emilia, who is too astute, who knows too well when I am sad or afraid and who knows the difference between my sadness and my fear and wants to understand them. But I don’t want her to understand them, I don’t want her to think about losing me, because I want to forestall this pain for her, even as I shudder at its inevitability.

I have nightmares. And my only solace – my lifesaver, my heartsaver, the backbone of my soul armor – is, really, my daughter and her kindergarten theology, her insistence that it will all be okay, that we will all end up at happy place, that she knows this, because we must, because it is true.

I hold her to me tightly, and weep for this, in gratitude and shame.

Are there horses in Heaven? — I don’t know; what do you think? — Did Grandpa love horses? — He did. — Then there are horses there. Someday, I will ride them.

– Me too, sweetie. Me too.

******

This post was inspired by a discussion that was shared between me and some very good friends – Lindsay, Loralee, Julie and Devra – at Mom 2.0. We curled up on the floor of the bedroom of the Four Season’s Presidential Suite during the CheeseBurgHer party and talked spirituality and faith, grief and loss, prayer and meditation and all variety of confused and confusing things. And then Lindsay decided that maybe we should explore some these questions (like the one I’m struggling with above, talking to kids about death) together, on our blogs. So we are. You’re welcome to join in. Leave me a link if you do. Or just speak your piece in the comments. Talking, maybe, will bring enlightenment. Or maybe more confusion. Either/or.

So: how do you talk to your children about death? Do you talk to your children about death? If they ask the hard questions, how do you/will you answer? Or do you, will you, like me, seek their answers, and look for comfort there?

PS: I offer another, somewhat less morose reflection on navigating the waters of loss with children over at Their Bad Mother. Because once I start talking, I can’t stop.

This past weekend was a weekend filled with tremendous, heart-busting joy. It was also one of the most personally disappointing weekends of my entire life. My head is spinning a little from the existential contradiction that this represents.

I took the brood to Disney World, and one of the objectives of the trip was, of course, to have a good time, and having a good time at Disney World is not a particularly difficult thing to do, what with the spinning teacups and fireworks and pirates and flying carpets and pixie dust and all, and so to say that we – and more importantly, our coterie of pixie-loving badgers – had fun is to understate things dramatically. But having fun was not the only objective of the trip, nor even the primary objective of the trip. The primary objective of the trip (which saw us drive from Toronto to Florida in a vehicle provided by GM Canada) was me tackling the Disney Princess Half-Marathon, aka the Tiarathon, as the first race in my year-long quest to run 100 miles for Tanner. I’ve been training since last year to do this run and all the other runs – runs that will cover a total distance, I hope, of 100 miles – to follow. I had my tiara and tutu packed and ready.

I never got the chance to wear them.

The night before the race I had a series of dizzy spells, the last resulting in a nasty fall while carrying Emilia – herself a little broken from falling on the monorail off-ramp – across the resort grounds. I wasn’t badly hurt by the fall – just sore knees and neck – but the fact that I’d been dizzy enough for black spots to distort my vision and skew my balance and send me careening to the ground, child in arms, was enough to sound the warning bells. “You’re not running,” Katie said, as she helped me back to the room. “I will stop you.”

So. I did not run the Disney Princess Half-Marathon.

In hindsight, I can speculate that my dizzy spells and my fall and my consequent failure to run was due to a lot of things that were more or less beyond my control. Doing a week-long long-distance road trip with small children who do not sleep prior to running a half-marathon is, perhaps, something that I could have controlled – simply by not doing it – but then we wouldn’t have had our adventure, and who’s to say that it was the seven nights without sleep that brought me down? It also might have been the Florida sun, or the food (Mickey-shaped waffles have been proven to cause light-headedness in tutu-clad lab rats), or the fact that I’m only about a month past a bout of pneumonia and have bad lungs and ignored all of that when I resumed training a few weeks ago and didn’t pay any of that any mind while carrying a 35 lb toddler through the Magic Kingdom and Animal Kingdom and Epcot Center under the decidedly un-Canadian sun for two days. It could have been due to a lot of things, most of which were almost certainly my fault.

Which is why I’m having a hard time clinging to the joy from this weekend. The smalls had a deliciously wonderful time, chasing Space Rangers and splashing down mountains and racing race cars and goggling at pixies zipping through the sky, and their joy was contagious but still: we were supposed to do all this – we were supposed to be pursuing joy and chasing pixies and princesses – for Tanner. I was supposed to do this for Tanner. And I f*cked it up before I even got started.

It’s kind of hard to not hate myself for that.

(I ordinarily close comments for this kind of post, because I hate being sucked into the temptation to seek reassurance and back-pats from the Internets for my own twisted issues, but you know what? This shit sucks so bad that it is taking all of my limited self-restraint to not out-and-out beg everyone, everywhere, to tell me that I am not, in fact, all total fail and a disappointment to humanity. So. If you feel like telling me that I don’t suck, I will totally take that. Please excuse my neediness.)

I don’t quite know what to say about Joannie Rochette. I’ve been stunned by her bravery, humbled by her strength, amazed by her determination in the face such terrible sadness. When my father died, it was days before I could even walk in a straight line, weeks before I could hold myself reliably upright. After losing her mother, Joannie Rochette strapped on her skates and competed for an Olympic medal. Incredible. Courageous.

It’s courageous because it represents an overcoming of a terrible grief, a grief that comes at you like a baton to the knees and the gut and the mind and the heart. It’s not a defeat of such grief – there is no defeat of such grief – but it is – it represents – a willingness and an ability to power through that grief and to keep moving, keep persevering, keep living, in spite of that grief. And more than that, perhaps: to take that grief and let it move through you in a way that carries you forward, to feel its battering force and take that force and bend it to your will and make it dance, to dance with it, to take the lead and turn the struggle into something beautiful.

I would like to do that. But I still feel, more often than not, that the grief is moving me, leading me, directing our steps. We’re dancing, I know, and it’s not always terrible (that is one grief’s secrets: that it is sometimes welcomed, that it is sometimes embraced, because the grieving soul does, sometimes, just want to give in, to fall back into the deep curve of those arms and yield to the bending and the tipping and to just let its fingers graze the floor as it sways and drops) but it is not controlled, I am not controlling it, I am just being led, and I wish, sometimes, that I were not.

Jeannie Rochette will have her moments, I know; moments in which she will no longer feel in control, when she will not be able to stand, let alone skate, because this kind of pain – no matter what anyone says – is terrible, terrible, beyond measure. But she will always have this moment of triumph, this overcoming, this demonstration of the force of life and love in the face of death. For that she should be proud. To that we should all aspire.

I do.