Twelve months, a thousand thoughts but few words

There is simply no way that mere words could adequately capture all the fear and joy and tumult and change that 2014 held for our family.

So I won't even try.

One thing's for sure though; if there were any confusion that existed between dreams and reality, if there existed a gap between the two, for all the hoping and dreaming that sustained us in the early, scary months of 2014, for all the transformations required of us and our expectations, for all the tortuous moments when it seemed our dreams were lost...For all of that, none of the dreams could come anywhere close to the rich and beautiful reality.

This is what I will remember of 2014.

I'll share a few little images of our holiday season. And so all that remains is for me to thank you for being there with us and to wish you beautiful things in 2015. I wish for you the fulfilment of dreams, but if they cannot be fulfilled, let the reality be beautiful and the change and growth bring joy.

3/21

One of the coolest things about my tiny daughter? Like her brother before her, she has allowed me to see the the beauty and unexpected joys that lie at the margins of experience, those stories we often don't get the chance, don't slow down and listen hard enough to hear in this achievement obsessed, 'perfection' seeking, sometimes brutal world.

Being S's mother allowed me see the deep and abiding love that can dwell in the invisible, those essential things not seen by the eye. For that I am ever grateful. My beautiful S, giving the stars their sparkle.

And in her own tiny life, our little seedling is already enriching us in ways I am only beginning to understand. Teaching us how important each moment is, to breath deeply and not rush. To appreciate how little the 'facts' can tell us about love. To celebrate and champion the unique, the unorthodox, the quirky and the singular.

Both my children have and continue to take me on journeys that reveal their truths in gently unfolding, mysterious ways. Or sometimes in great rushes of knowing that are so striking their realization is almost visceral.

Because of my children, I am a braver, more compassionate - and yes, more human - being than I ever gave myself credit for in the life I had before they came along. I am fiercely proud of them both. Our kids, they're one of a kind.

Although I can understand why some parents might, I don't feel fear when I think about raising a child with Down syndrome. Truly, we are so excited to begin this special journey. To have this unique opportunity to learn and grow alongside her. To see the world anew through her eyes. To glow with pride as she discovers and accomplishes and falls and gets up again.

And surely that's just a universal, parental feeling?

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Today is World Down Syndrome Day. For the 3rd copy of the 21st chromosome; get it? (Also the spring equinox, The New Year celebrations of Newroz for a host of cultures across the Middle East and Central Asia, the day after my birthday and apparently World Happiness Day; so it's generally a week on the calendar I can get behind.) 

I'm new at all this Down syndrome stuff, but already I have learned that there is an amazing global community out there, full of love and acceptance and the readiness to challenge conventional thinking on all the things we think truly matter in life. I like that challenge. These are my people, I can feel it. I'm not religious and I've never been a fatalist, but it's almost as though everything until now was leading me to this.

I read a blog post earlier this week written by Lauren over at Sipping Lemonade. Hers has quickly become a favourite read; she articulates so beautifully all the things I am still too busy untangling in my own brain to put into such moving words.

I hope she won't mind that I'm re-printing here some of what she has to say about today, because I feel sure these are the kinds of things we can all benefit from hearing, whether we're facing our own challenging situations or looking for something awesome to celebrate today. I hope they inspire you as they have me.

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 On World Down syndrome Day:

Since having Kate, I’ve realized that, truly, this day is for everyone and anyone — whether or not you have or love someone who has Down syndrome.

The heart of this day is for anyone who is or loves someone who is human.

It’s World We’re-All-Created-Equal Day. World We-All-Matter Day.

It’s World Don’t-Count-Me-Out Day and World I’ll-Surprise-The-Heck-Out-Of-You Day.

It’s World Different-Is-Great Day. World Be-Yourself Day.

It’s World We-All-Have-Special-Needs Day. And World Wouldn’t-It-Be-Boring-If-We-Were-All-the-Same Day.

It’s World Help-Each-Other Day. World Love-Each -Other Day. World Serve-Each-Other Day. World We’re-All-In-This-Together Day.

It’s a day where we advocate inclusion and awareness of those with Down syndrome — and of all of us.

We are all born to mothers who we hope will love and accept and celebrate us. We are all born to a world where we long to be heard and respected. We all have challenges to overcome and strengths to celebrate — and we all need others to help us along the way.

And on World Down Syndrome Day, it’s a good time to remind ourselves, our children, our friends and family and communities: do not be afraid of what’s different.

Do not underestimate those around you.

Do not count out those who do things in their own unique way in their own unique time.

Encourage. Include. Involve. Accept.

You can find the original post in its entirety here. 

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And while I'm at it, since this video is doing the rounds this week, click on the link below. I dare you to watch it and not cry sloppy, happy, uplifted tears.

Happy World We're-All-In-This-Together Day friends.

In the words of Freddy Mercury (and a little German too)

Deep breath.

The last few weeks have been stressful. There was the difficult news we received last week, obviously, to which we are still adjusting. Ultimately it wasn't so much the test results themselves that threw me, or even the possibility of a diagnosis that comes with that. It was the sobering reminder, intruding into my blissed-out pregnancy haze, that anything can happen at any moment, and that often, no matter how fiercely we love our babies, there is nothing we can do about it. It doesn't bear further thinking about actually, and so as I said, we have instead focused on processing the possibilities before us as we move forward.

But naturally, daily life doesn't stop for that process of adjustment; work has been especially hectic recently, with me taking on some particularly high-needs clients while also racing to perfect my Grooveshark holiday playlist meet many a proposal-writing deadline. While H precipitously careens towards the final completion of his thesis and with most days spent in the library 'til the wee hours, I feel like the only time I do see my husband lately is for those anxiously and nervously anticipated hospital visits.We also spent an over-extended Hanukkah week, travelling to events in London, socializing lots and cooking for 20+ people, and then there are my final rehearsals for the holiday performances with my singing group this weekend. It hasn't all been scary and stressful; some of it has been fun and lots of it very productive. But all of it busy, not leaving us much time for much of anything.

But forget about all that for the time being, because, dear readers.....on Sunday afternoon we set off for nearly three weeks of holidays in Austria and Germany, during which we'll have ample time to catch our breath, (re)count our blessings and just be together as a little family. <little happy dance> We prefer our holidays low-key and don't go in for any of the prevalent consumerist frenzy. There'll be some obligatory family engagements, but for much of the time it'll be just H and I, while we house-sit for his folks as they're abroad. Long hikes in what are sure to be enchanting snowy landscapes, chancing upon alpine huts offering warming food and crackling log fires, exploring ancient castle ruins. Christmas markets and gingerbread and chocolate and twinkling lights and woolly socks and sleigh rides and skiing. (And oh yes, the gluten free diet will be violated.)

Aaah. Deep breath. I can't wait.

In German there is a word for all this: Gemütlichkeit, which my German/English dictionary defines as any situation 'inducing a cheerful mood, peace of mind, a sense of belonging, coziness and unhurry'. Yep, sounds like just what the doctor ordered. 

And the Austrians excel at it, particularly at Christmas. You guys, they are the Kings of Christmas. It's like being dropped into a Santa's village/Sound of Music mashup, with really good home cooking on the side. (And to balance out the saccharine sweetness of that image, they have this badass guy as part of the traditional festivities too.) Every corner of every street festooned with markers of the holiday season, but (with apologies to those who are fans of the more-is-more-at-Christmas school of decorating), not in a tacky way. No tinsel or glitter, but rustic and homespun and charming. Every open space is transformed into a tiny wonderland of a Christmas Market; little wooden huts selling the famous gingerbread and stollen and glühwein (though this year it'll be only the kinderpunsch for me) and impromptu outdoor, mittened social gatherings that seem to burst out spontaneously as everyone stops in their busy workaday lives (not that the Viennese are well-known for that), to slow down, smile (not that the Viennese are well-known for that) and just savour. And rampant fire hazard be damned real candles on the Christmas trees. On everything. It's so warm and cozy and contagiously delightful in a simple kind of way. It makes my heart happy.

And really, that's what I'm wishing for all of us in these waning days of 2013. I hope that wherever this finds you, you may encounter moments that bring you peace of mind, a sense of belonging, coziness and unhurry. May our hearts be happy and find peace, in whatever form it comes.

In looking back on my feelings towards the year that is passing, I think Freddy and Co. really say it best.*

* Also, how can you not love the 'stache/tank top/santa hat combo?

Tiny triumphs

1) Yesterday when I updated on the hourly daily pregnancy count, I shaved a day off without even realizing it. I cheated myself of one hard-earned day of pregnancy! 13w5d today (and not, as I reported in my last post, 4). The fact that I could casually forget the day-to-day pregnancy count that has been sustaining me through these breath-holding, nerve-wracking early weeks feels to me like concrete evidence that I'm not only coping with the crazy, I'm even dwelling in moments of natural calm. It looks like hope. <happy little victory dance>

We were sitting in bed last night, indulging in our new nightly baby-bonding ritual of reading a page from our day-to-day pregnancy guide (finally purchased last week in a leap of faith [and can I just add here that, nice as this nightly ritual is, it's disappointing to see how many pregnancy books sideline the dad almost completely. I know us ladies are the ones with the bodily experiences, but still...]), checking up on little seedling's progress, when H pointed out my mistake.

Only 184 days to go! Not that anyone's counting.


2) And speaking of said pregnancy guide, I now have it on good authority that my episodes of weird, nocturnal noise-making can indeed be blamed on pregnancy. Ha! Totally legit.


* This post has no accompanying image. Why? Because, DON'T EVER DO A GOOGLE IMAGE SEARCH FOR 'PREGNANCY COUNTDOWN', even, like me, in a facetious way. Seriously, it will make you want to gag.

I still do

Four years ago today, high up in the Austrian Alps, H and I were bound to each other, two lives intertwined. Though it wasn't a wedding in the conventional sense, it was, and is, the most meaningful day in our still growing relationship, and the date we mark as an anniversary. (And yes, we have a penchant in this family for celebrating the less conventional milestones in life; somehow, that makes it feel all the more special).

There was only us two, no witnesses, no papers to sign, nothing to officially validate that momentous day as two lives, almost imperceptibly really, became intertwined, became A Life; a future that we promised each other we'd build together. There were no formal vows, at least not verbal ones. I can say this: every fibre of my being sang with the possibilities before us, my flesh and blood and bone and grey matter and intestines, all my bodily secretions, rushed and tingled with the rightness of this transformation we were undergoing. I just knew. There was champagne, and breathtaking views as far as the eye could see; not that we really had eyes for more than each other. We had a passerby, careless of either the stunning scenery or the Big Day she didn't realise she was witnessing, take a hasty, ill-framed image.

On that afternoon - emotionally and spiritually and in every other way that holds meaning for us, if not bureaucratically - we became husband and wife. 

Our 'wedding', which happened us much for the benefit of US Immigration Services when I was offered a fellowship in that country as for sentiment, took place months later, in the echoing chambers of Toronto City Hall. We posed, faux ironically, with our wedding party witnesses, my brother and a buddy who had the day off work; had these two single, beer swilling, 20-something guys elbow each other out as I threw my bouquet, (result: my shy, steadfast brother, still single, still gorgeous but wisely choosy these years later, didn't catch the bouquet), and then the four of us went for a gargantuan, slap-up lunch at one of my favourite Vietnamese Pho restaurants on Bloor St. It was fun and it was inconsequential, which felt appropriate for us.

(I have a confession: I wasn't really sold on the idea of marriage per se, even after I met H, and even after I knew he was The One. My own doubts about the social [and economic, and political] conventions attached to this particular institution, combined with the values imbued in the matriarchy that was my stridently feminist upbringing by a strong, capable, idealistic single-mother-of-five, made me a wary convert. And yet now? Now I derive great delight from uttering the words 'my husband' as pertaining to H, and not just for it's retro vibe.)

But before all that, four years ago exactly, on a terrace atop a ski jump in Innsbruck, we looked into each others eyes and saw the future.

Long before we ever uttered those age old words, I do, well, we did. We do, every single day.

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It's not always, or even often, easy. Did we know, those four years ago, just how full of twists and turns and potholes this journey together would be? We've certainly been together through some better and (a lot of) worse, some richer and poorer (though not really), a worrying amount of sickness, and health too. But really, two people could not possibly love and cherish each other more.

Still, there is no way we could have imagined just how hard our future would be. Our young marriage has had more than it's fair share of challenges, so that sometimes we feel as though the universe is testing us. We've experienced losses, paralysing grief, hospitalization and major illnesses, joblessness, innumerable moves and family dramas. H has talked about the unfairness of all we've had to face, how hard we've had to work at finding romance, seeing the silver linings, counting our blessings, just staying afloat some days. As though we naively expected that our love alone and the marvel of us having found each other should shield us from any of that. No; like too many couples who find themselves having drifted into the world of loss and infertility just as they thought their happily ever afters were about to begin, who end up devoting so much time to the pursuit of elusive offspring, there has been heartbreak and disappointment, hard life lessons and hope. Such is life, for some of us.

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I wear a ring, given to me by H, my engagement-cum-wedding band.

It's a thick band of white gold, surrounding an enamelled inlay with a distinctive pattern inspired by an artist,  Hundertwasser, whose work has particular meaning for us. (H later told me that, despite the numerous times family and friends tried to persuade him that it was perhaps too unorthodox, he knew that ours was not a routine, diamond solitaire, gold band kind of union. I'm so pleased he remained dissuaded.)

Still, when we went to have it sized after he put it on my finger, and the woman in the shop gave me the instructions for its care, I did take a gulp of trepidation; it turns out that that distinctive, eye catching enamel pattern which has garnered so many compliments since, is also particularly high maintenance when it comes to daily routines (never mind month upon month of heartbreak and trauma).

It should be taken off whenever I use my hands for anything particularly active (which is always); it should not come in contact with any cosmetics or chemicals. It shouldn't be worn adjacent to other jewellery. And the list went on... The thing is, I didn't really take the advice to keep it pristine, safely tucked away; it is far too beautiful and well, it is a special reminder of just what H and I do have, a symbol of our strength.

That ring has been through all those dramas and traumas with us (and, I am ashamed to admit, one screaming, rage-fuelled journey across a room to hit a wall on the other side, when I was in a particular pique of anguish during the worst of my grieving. When I thought that since my hopes of motherhood had died with my baby, so everything else might as well go too. Luckily, H gently scoffed at my petulance on that occasion.) But here's the thing: even if it momentarily feels eradicated, you don't give up on the beautiful and the magical just because you're stuck in the middle of a seemingly endless shit storm; maybe you even cling to it all the harder.

In truth, all the carefully conveyed instructions of the saleswoman having been cavalierly disregarded, my ring is now full of scratches and nicks, after only four years of wear. But it's still whole. It's still beautiful. It's still full of vibrant colour and imbued with the deepest meaning.

Yes, I think it remains a perfect emblem of this unique, indestructible, and frequently magical union.

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Happy Anniversary, H. Your mighty smile and your gentle, compassionate tears, whether of joy or sorrow, are still more than I could have ever dreamed of. In the face of this, all the rest falls away. And yes, I still do.

Still beautiful, scars and all

The weekend that was, and forward we go

Firstly, thank you. It's all I can say, really, because the warmth and love by which I felt encircled last week was beyond words. I don't think I can adequately convey the gratitude I feel knowing that not only is my boy remembered, but continues to inspire moments of beauty and laughter. You guys are simply amazing. All the comments and emails and beautiful pieces of artwork that you made in honour of S. The cartwheels, the time spent playing with rambunctious puppies, digging in gardens, picking wild bluebells; the candles and the colouring books.

Just...thank you.

We spent the weekend away, arriving home yesterday morning. Friday was a beautiful day, in spirit if not in weather. There were tears in the morning, gently soothed by the sound of the lapping waves and the breeze in the sea grasses as we sat on the sand dunes, remembered, and looked out towards the horizon. The tears - and the sadness - were neither as copious nor as tinged with bitterness as they have been in past years, giving us both a sense of affirmation that we are indeed intact, as is our sense of hope for the future; just as we release our previous expectations of life, and forgive those versions of ourselves that held them. Our love, too - for what has gone - remains.

And just as there were tears, there was much laughter on Friday. There was digging our toes in the sand and getting very dirty and collecting seashells. There were jokes about H's rather tyrannical vision of a historically and architecturally accurate medieval sand fortification, (I insisted S would be as bored with the notion of historical fidelity as I was, while my dear husband insisted any son of his would be as avid as he. But really...a toddler?). There was ice cream and meadow walks and forget-me-nots and frolicking newly born lambs and freshly caught seafood (because if he can inherit an interest in military history from his father, then I would surely nurture a fine palate and appreciation of local bounties in my boy). And after dinner and a long day in the fresh air of the countryside, there was a quiet and contemplative walk through the twilight of a beautiful little coastal town of winding, cobbled streets. (Some of which appear below, in case you're interested). And so importantly, this commemoration felt woven into the mundane fabric of our lives and our routines in a totally natural way. And S was present everywhere, not least in the tiny space between H and I when we cuddle and comfort one another. In some ways, the love grows deeper, the connection stronger, and I marvel at the experiences that my son continues to inspire me to seek.

A contemplative spot

S's castle, complete with seashell entry gate and accurate (so I'm told) fortifications.

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This blog has been a bit of a love fest for my husband lately, hasn't it? In recounting my thoughts of the weekend, I want to offer up one more sickly sweet ode to H, and then we'll return to our regular programming.

After posting this I realized that I too fall prey to the fallacy that we are not active parents, that our parenting will happen in future tense. Of course we struggle. It's not easy learning how to parent a baby who is not here, especially in a society so death averse as ours is. But we try to find ways to express our love. We have to be creative. We learn to honour and include that which we cannot see but know to be present. And H is a master of these touching gestures of devotion. It was he who staked a claim on the 17th as a special day for S, and it has made the ambivalent feelings that come with each birth day anniversary so much easier to bear. It was he who proposed a day of childish pursuits each year, something we hope to be able to include our future children in as years pass. He masterminded the sandcastle.

He is an amazing father. I am so happy to be sharing this journey with him.

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And now we are back and life, with all its banalities and tiny moments of the sublime, continues. There are work projects to complete and summer holidays to plan for, blogs to catch up with and, because the moment for jungle time happened to poignantly coincide with this past weekend, there is a two week wait to begin. Because we are resilient, and even as hope wanes, there's no harm in trying. Or in obsessing.  

Romantic Sabotage

No, I'm not talking about the infertility-inflicted kind, that robs us of opportunities for spontaneous romance and the sheer pleasures of couplehood; what with all its timed intercourse, gotta-think-ahead, mandated procedures and hormones, vaginal wand wielding, and of course the ubiquitous cultural tyranny of its two-is-not-enough thinking. I'm not talking about that kind of romantic sabotage. That we all know too well.

I'm talking about my husband, the devious saboteur hopeless romantic.

He's known since the first days of our fledgling romance that I'm not really a heart-shaped-box-of-chocolates kind of girl, but he can't resist the opportunity for a surprise celebration. (Who can blame him, really? I do adore his penchant for prosecco in the afternoon, just because). The first Valentine's Day we spent together he tricked me into agreeing that we'd do absolutely nothing to mark the day. I happily took this to heart (excuse the unfortunate pun), and did nothing. He took it as an opportunity to sneak out and buy chocolate (not just any chocolate, this stuff. Oh my god, their salted caramel chocolates...) and place it on my pillow in the morning. Chocolate for breakfast! It's below the belt. And despite my best attempts, (ok then, I didn't try that hard), he's been engaging in variations of the above ever since.

It's not that I don't love a little romance; I enjoy being brought flowers as much as the next girl. I just don't like romance by directive.

I do however have a weakness for chocolate, so this year, if he insists, who am I to protest? He wins. Wanton disregard for cervical position and cycle day Jungle time (*blush*) will almost certainly follow.

Plus, after my wobble yesterday, I'm trying to look on the bright side of just us two, with no little person to share stuff like this with. Because if I have to cry tears, let their salty taste be matched -bettered - by decadent salted caramel chocolates. Let me bask in the warmth - as gooey and cloying as it may sound - of my love for the man who made me want to make babies in the first place.




Blog friends, will you mark Valentine's Day with your other half? Ignore it? How have your experiences of infertility or loss altered the romance in your relationships?

An out-of-step tradition

Here's a confession: we still have our Christmas tree up.  (I know it's a little late for a Christmas post, bear with me...). This is not a situation born of laziness or apathy; rather, it's become something of a family tradition, this happily being out of step with the ceaseless demands of a forward moving calendar.

It started in our first real Christmas together as a couple. (In the previous year, our relationship was only a few months old, and we hadn't ventured forth into the ultimate and life altering realization that we would become, totally, each other's family; and so we spent our respective holidays with our respective families of origin, in different countries and with one huge phone bill at the end). That second year, I had a guest position teaching in the US, and a perk of that role was accommodation in a beautiful - and huge - Arts and Crafts style home in a rather more wealthy suburb of the city than anything my upbringing had ever exposed me to. Despite all the luxuries integral to the building, such as a custom-made little bar and buffet area adjacent to the dining room and open brick fireplace, the university had furnished the house for the barest of our needs, and thus the place had a vacant, slightly forlorn, weirdly grandiose elegance about it. We moved in, newly man and wife, at the end of November, and thus Christmas decorating was a means for us not only to celebrate that first season together, but to fill some of that echoing vastness. In that house, the tree stayed up until sometime in February. And somehow, we just continued from there...

It also has something to do, I suppose, with the fact that we observe the tradition typical in Austria, which is to erect and decorate the tree on Christmas eve. I'm a big fan of the holiday season in all its kitschyness, baking of garish desserts, playing of music that would never get a passing glance on our otherwise more fashionable playlist, and generally decking halls to the hilt. So the wait 'til the 24th, when all around us trees are going up from late November onwards, is a test of my patience. I like to get the maximum of enjoyment from our tree for as long as possible after that.

S has had a strong connection to, and presence on our tree almost from the beginning. My mom has established a tradition, in the last two holidays, of gifting us a special ornament for him, and these always take pride of place.This year's ornament is a sweet little giraffe that we all three picked out together; we all felt sure it would be the sort of thing S, with his chubby two year old's hands, would have loved. It was purchased at St Paul's Cathedral, where my mother joined us for a particularly poignant service to remember lost babies, organised by this wonderful organisation. It was a very special afternoon for us. Here's a look at the ornament gracing the tree.

A special memory

The tree will, finally, have to come down this weekend. It's got a sort of sad, Charlie Brown look to it now, having lost a good portion of its needles. And besides, the string of cheapy lights that we bought from the pound shop (because we're never sure if we'll be in the same country, with the same voltage and power outlets from one year to the next, and it's not worth it to buy 'good' ones), gave out yesterday, so the tree's twinkliness is also diminished. Thus, as much pleasure as it brings us, he'll have to go. And forward we move. The giraffe may stay out of the boxes to be packed away though. He's just too cute.