When all was finally said and done, it wasn’t appearing on CNN in a tutu – nor appearing on CBC in a tutu, or posing in Central Park in a tutu, or watching as a limo slowed down on Fifth Avenue and the passenger leaned out the window and hollered – at me – hey, I saw you on TV in that tutu! - that stood out as the most memorable moment of my week last week. Which, when you think about it, is memorable in itself: I had a week in which I appeared on CNN in a tutu and that particular experience will not be recounted here because, during that particular week, stranger things happened.

Stranger things, like the prayer circle. (continue reading…)

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. (continue reading…)

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. (continue reading…)

When I was twelve years old, I was confirmed in the Catholic faith. The priest who  administered the rite of confirmation was a man that I – in the manner of all judgmental twelve year olds who recoil at elders who seem weird and smell bad – did not like, although I did not, at the time, dislike him quite so much as I did the nun who led the weekly catechism classes for young members of the Church. Sister Anne was elderly, and terrifying; she wore her black habit like a suit of armor and carried with her a old wooden ruler, the kind with blade-like metal embedded along the outer edge, and she would menace us with it, sometimes cracking it down upon the side of a desk when some unfortunate child failed to list the Seven Sacraments on command. Sister Anne, my classmates and I decided, was not on the Right Side Of God.

Nobody that frightening could be good, we told each other as we congregated outside during a class break. God wouldn’t stand for it. “She’ll be punished some day,” someone said. “She’ll go to hell.” That thought was somewhat reassuring.

One of the boys disagreed. “God doesn’t seem to care all that much if the priests are scary, so why not the sisters? And the sisters don’t even do anything, not like the priests. He lets them” – he practically spat the word – “be the bosses of the church.” A few of the other boys nodded, and there was much shuffling of feet. Somebody murmured something about creepy being worse than mean, and a couple of the boys moved away from the group. “God doesn’t really care about what those guys do. He just cares that we know the sacraments,” he added. “It sucks.” I had no idea what he was talking about, but I knew that I really didn’t like the way church felt at this parish – a parish that my family had only recently joined, after relocating – at this parish, with this priest and this nun and these scared children, and it seemed to me that if anyone was to blame, it was probably God, who was in charge of the whole business, as I understood it. (continue reading…)

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. (continue reading…)

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. (continue reading…)

Alexander McQueen died this week. He committed suicide, and he did so, in part, it seems, because of his bereavement over the death of his mother earlier this month.

This is going to sound awful, terrible, extreme, insane… but… I think that I know – maybe, a little bit – how he felt. (continue reading…)

I think that I’m stuck in the denial stage of grief. It’s not that I deny the fact that my father is dead – his ashes sit in a box on my mantle, surrounded, at the moment, by a few Christmas ornaments and my kids’ picture with Santa and Emilia’s bardo-drawing – it’s that I can’t wrap my head around the fact – is it a fact? – that his death is the end, that his life is over, that I’ll never see or speak with him again. The absoluteness of it all, the finality: I’m having trouble accepting this. I can’t accept this. My heart aches from its stubborn refusal to accept this.

(continue reading…)

I wanted this year to start with laughter and smiles and cookies and fizzy soda. I didn’t want confetti and champagne and fireworks and streamers – I just wanted smiling. I just wanted this year to start happy.

I’m still trying to find the happy. Yes, my heart lifts when I hug my children and my lips curve when they giggle but the last week of last year and the first week of this year have been covered in a thick blanket of fever and snot and heartache and it’s been hard to find the laughter. And although Nyquil takes the edge off the fever and snot, there aren’t sufficient meds for heartache, Ativan and Xanax notwithstanding. Last week was much, much harder than I thought it would be – doing the final clean-up of my dad’s place in the week between Christmas and New Year’s was, in hindsight, less than ideal timing. Coping with the heart-punches of the holidays was difficult enough without throwing myself into the line of fire of the gut-kicks and soul-wedgies that came with seeing the last of his things carted away, his home wiped clean of his presence.

(continue reading…)

The question was: what story are you telling yourself right now? (And, can you give yourself permission to change the ending?)

The answer was: this year, this decade, is ending in sadness. This year, this decade, is ending and my heart is wrapped in grief.

But: I can give myself permission to change the ending. I just need to figure out how.

A start: reflecting on the things that have made me happy this year. To wit: traveling across the country with my children and with dear friends; having a few lovely, brilliant days with my father before he died; my husband, who is my joy and my rock; my children, my children, my children, my children; overcoming fear; overcoming greater fear; facing fear and calling it to account and demanding that it reveal itself as something more, something better, something beautiful.

This is the ending that I want for my year, an ending that celebrates all the joy that circumnavigated the grief, and ending that finds the bravery in the fear and the beauty in the darkness and the wonder and greatness and living and loving that was in everything.

And I want this ending to be a beginning, an opening-up, an opening-towards new fear and new beauty and new wonder and new confusion and new dark and new light – because all of these need each other, each of these requires the others – and all of this as it folds back into the old and becomes greater-than and more.

And it can be. It will.

Happy New Year.