#Microblog Mondays: La dolce vita

We recently what already seems like far too long ago returned from a family holiday in Italy. I've always thought that it's pretty much impossible not to have a wonderful time in Italy and this visit was no exception.

It was special for the very important reason that it was our first family holiday of course, but  after the craziness of the last year it was also wonderful just to shut off, spend lots of time surrounded by nature and just lolling the days away.

We hiked through olive groves and vineyards to alpine lakes of impossible turquoise waters. We sat on terraces overlooking heavenly scenery, sipping Hugos. We bobbed along the Grand Canal with the throngs, gawping at the Venetian splendor. We meandered through markets concocting the perfect picnic of fruits and wines and salami. (Well, the abundance of pictures - too hard to choose! - below can show you better than I can...)

And for her part, Girl Wonder loooved Italy. The gelato and swimming in the lake, sure, but really it was the Italian people who my daughter, shameless flirt outgoing little soul that she is, held as the true object of her affection. And Italy loved her right back. Italian is a beautiful language to begin with, but the excess of flowery epithets they reserve for the description of beautiful babies is stunning.

Mia cara! They would throw open their arms to her in exaggerated awe.

Bella piccolina!

Che dolce bambina!

Bellissima piccola signorina!

Mia cuore! And so on...Waiters and hotel clerks and bus drivers and old ladies walking their dogs; they would descend on her with kisses and caresses and an endless list of gushing superlatives. (It made a change from the environment in these parts.) And Girl Wonder lapped it right up. And yes, that last one translates as 'my heart'. I said gushing, didn't I? They rolled out the red carpet for us her.
 
It's a country that not only defines la dolce vita, but really includes families and children in what is often viewed as a very adult concept; and I think it's this that makes the culture seem so exuberant and happy. Seriously, if you're looking for a baby-friendly family destination...just go. Unless you're one of those people with (what I always think of as very North American) personal space issues, especially surrounding your offspring being hijacked by enamoured waiters and paraded around the terrace. Then you might find it all a bit over the top.  

 

 

#Microblog Mondays: Many worlds

I'm no physicist (despite occasional appearances to the contrary), and so I can't speak to its plausibility, but I've always found the Many Worlds theory compelling stuff. In addition to seeking an explanation for the wonkiness of quantum mechanics, it suggests that with the existence of these alternate worlds that branch off from ours as time expands at different rates in different places, 'all possibilities are realized'.

Think about that for a second: do you realize what it means? It means (my social scientist brain is extrapolating here; allow me the poetic licence) that anything you've imagined as possible has actually occurred.

It means that someplace I'm still tramping through the island jungles of Oceania. Someplace I'm a CEO of something or other, wearing tailored suits and doing whatever it is CEOs do all day. Someplace I'm living out my fascination with carpentry, slowly turning wooden spindles to soft, delicate curves. Someplace I never set out to see the world at all. Someplace I'm a 40 year old woman who owns Hello Kitty soap she considers too adorable to actually use (Oh wait, that actually happened here...)

It also means someplace my 4.5 year old son is playing amiably with my one year old daughter. Someplace S is alive and growing and laughing in something other than the breeze that sways the trees.

Someplace, when people ask 'Is this your first?', I don't stutter, or meekly voice a 'yes' while silently thinking 'the fourth I've carried in my womb, the second I've birthed, but only the first I've held pink and screaming and alive'.

And then today, on a beautiful summer's day walking through the park, delighting in my daughter's discovery of bugs and bare feet in grass and the exploratory eating of said grass, I also realize that if this Many Worlds theory is true, there is someplace I never had life lessons that taught me not only how precious and fleeting these delights are, but that they, or the sight of a swollen belly, might pierce the heart of a passing stranger, someone less lucky than I. Someone who I was not so long ago. It's hard to know that in my very joy lies someone else's pain; for I too have felt that heartache.

And wearily, I wonder why it seems to be the inevitable way of the world that only with the painful, been-there-done-that knowledge of direct experience can we truly achieve such compassion and sensitivity for others. But then, maybe there's another world where that's different too.

Full of possibility

Written as part of Mel's Microblog Mondays. Check it out here to participate.
 

#Microblog Mondays: One!

Girl Wonder turned one this past weekend. Happy happy! Joy joy! (And still so surreal. In a good way.)

The party hat is actually a leftover from her costume for Fasching (or what they call Carnival in Latin America and the Caribbean, but also a big deal in this super-Catholic European country). It had a Day of the Dead theme and she wore it with a little skeleton onesie back in February.

H and I had a protracted negotiation over the type of birthday cake Girl Wonder would get. He wanted one of these sophisticated sponge cakes with a fancy fruit arrangement and layer of gelee. That's apparently traditional in Austria. To my mind though, a little kid's birthday cake isn't worth the paper plate it's served on if  it's not 1) slathered in sickly sweet icing that can be liberally smeared and 2) covered in enough fluorescent food colouring-infused sprinkles that you'll probably have to peel your kid off the ceiling later. Funny how the cross-cultural fault-lines in a marriage will emerge in the unlikeliest of places, huh? In the end, since strictly speaking Girl Wonder hasn't been introduced to gluten-based foods yet, the fancy-schmancy Viennese cake won out because that meant she could just eat the gelee with fresh fruit (which I grudgingly admit is the healthier option <cue sullen shrug>). But I'll get my smeary, food colouring fest next year; just you wait.

We wrapped a few of the hand-made (and some hand-me-down) toys that her cousins sent all the way from Canada, but otherwise didn't overdo it with presents, since I kind of hate that consumerism often trumps celebration at these things. Girl Wonder's delight is really generated from tearing the paper at this age, rather than playing with the actually contents. She happily did that for over an hour!

The grown-ups drank prosecco and toasted this amazing little being in our midst. A good day.


Written as part of Mel's Microblog Mondays. Check it out here to participate.

#Microblog Mondays: Seasons

So, April.

I've been kind of hanging suspended in this kind of slow-mo, hazy bliss the last few weeks. You know, those moments where the rays of sun slant in at an opaque angle and you can almost hear the perfection of the world in all its idiosyncrasies, thrumming around you?

That's where I am. Noticing the details. Awe-inspired by seemingly everything; the lazy buzz of a fat bumblebee; the taste of that strawberry basil gelato the cafe 'round the corner is peddling; the smell of rain as it hits the warm pavement; the fact that I am mother to a vibrant daughter. A daughter who is nearly one.

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We seem to have skipped spring altogether this year. It snowed on the first day of Pesach and on Easter Sunday.

Last year during the Easter long weekend I was hospitalized in the Labour and Delivery ward with worrying symptoms of a suspected pulmonary embolism, told I could lose both my own life and that of my then-unborn daughter. I was discharged with a confirmed diagnosis of pre-eclampsia, after spending a scary, sleepless night alone. (I told you it was a crazy time, I just never found the wherewithal to explain exactly how.) I had sent H home to bank his sleep before the new parent onslaught began; that night before he left he leaned in to my belly and whispered, asking our little seedling to watch over her mama that night, our roles reversed after long months of me caring for her. She duly obliged, kicking and rolling all night inside me, keeping me company through those long, dark hours. I was struggling hard to breath, panicked, feeling like a huge weight was pressed to my chest; it was this together with elevated proteins and white blood cell count that made them suspect pulmonary embolism. Looking back, I wonder how much of the trouble breathing could have been trauma-induced: a final, terrifying chapter in a pregnancy after loss beset with worries.

With Girl Wonder somersaulting her way through the night, reminding me I wasn't alone, I finally felt settled on her name. I had been sitting on the fence about our shortlist, but H was lobbying hard already for the name we eventually chose, a very traditional one that means hope in Hebrew. 'She owns that name', he said; a kid with her back story was hope personified, he said. Through that night as she brought hope and strength to calm my fears, I couldn't help but agree. I told her so and felt a tiny thump. It was final then.

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And after snowfall and temperatures that have kept us hibernating for long into this spring, it's suddenly strappy sundress weather. Summer bypassed us last year; it was a grey, English washout of a summer, not that we would have been able to enjoy it had the sun shone. We spent most of the season in sterile hospital rooms breathing stale air. I remember looking out at the leaden sky from Girl Wonder's isolation room on the 10th floor PICU. I remember poring over journal articles trying to come to grips with the CMV diagnosis that had wracked her tiny body, feeling as though we were about to become the punchline of some cruel cosmic joke, getting through that whole pregnancy only to have our longed-for child taken from us by a random infection. I remember subsisting on little sleep and bad coffee, donuts and hash browns from the hospital canteen.

This year, we are looking forward to summer holidays in Italy; to trips in Hungary and the Alps; picnics in the city's parks. With our one year old daughter.

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During all those long years of loss, infertility and loneliness, I often comforted myself with the thought that life can change profoundly and unexpectedly in a single season, in the blink of an eye. 'Everything could look completely different this time next year', I told myself, hoping it might be for the better.

But even now, living in the laughter-soaked truth of that adage, I can hardly believe my luck most days. 

Written as part of Mel's Microblog Mondays. Check it out here to participate.

 

The lessons she teaches: on time #WDSD15

Source

I'm writing this post in honour of World Down Syndrome Day. Last year, when I wrote this I hadn't even met  my daughter yet, but I was full of excitement and anticipation for what was to come, all the challenges and achievements alike.

Almost one year in, I feel a bit more able to speak to those challenges and achievements, a bit more grounded in our reality, which for the most part is happily mundane. In truth, I don't really remember what made us cry, exactly what it was we feared when we first leaned of Girl Wonder's extra chromosome, what feels like a lifetime ago now.

I knew to expect that she would reach some or most milestones later than typical children, which has been true to an extent; she rolled over well before her typical peers, for example, but at nearly eleven months, is still working on sitting unassisted. She doesn't just reach finite milestones later, but also spends longer in each developmental stage. In the mainstream paradigm of human development that asks us to check off achievements as mere waystations en route to some ill-defined destination of having achieved <what, exactly? maturity? adult status? full personhood?> my daughter is a sojourner who takes her time breathing in the scenery. I have an abiding respect for this way of being; as a frequent traveller without a map, getting lost and chancing upon happy discoveries, I've relished exploring many a cul-de-sac in my own time.

Still, sometimes it's hard not to compare her to the seemingly arbitrary, standardized developmental guidelines or to other children, even other children with Down syndrome, though this is mostly as a guage by which we measure our own parenting abilities: as I imagine all parents do, we sometimes wonder if we are doing right by her, if we are doing enough. Girl Wonder is ahead of the curve with some abilities, typically achieving with others, and well behind with some too. Are we missing some stimulation, some therapeutic intervention that could give her that competitive edge?

And then I look at her.

Yes, her achievements often come to her slowly, and we can only watch. But really, this isn't about us, our wishes or choices; this is her journey. Whether it's thanks to an extra chromosome or simply to the mysteries of her own personality, she takes her time. With gusto and exuberance, but slowly. Like a delicate flower gently blossoming to reveal the stunning beauty that lies within its hidden petals. Like a treasured secret shyly told, making the confidant feel special for the chance to bear witness. Like a marvellous story, the telling of which makes you long to slow time so you can savour, for just a bit more, being lost in its pages, before finally reaching the exciting and satisfying denouement.

Time takes on altogether unfamiliar qualities when you become a parent to any child (or so I assume it's the same for everyone). Precious months seem fleeting, while the recent, pre-baby past seems an unfathomable eternity ago. Truly, given the twinges I feel at its passing, I am grateful for time to slow down so that we can linger, even just for a while.

Looking back, our journey to parenthood was not the magical, irreverent, joy-filled one I might have hoped for. Everything was counted out in often soul-crushing increments: how many months of ttc, progesterone levels and follicle counts and days-post-ovulation. Then a pregnancy marked, week by week, by measurements and numbers not quite this side of 'normal'. Even once she arrived, during those early months in hospital, we couldn't escape our existence, our love, our tragedy being parsed out in numerical values: her incremental weight gain; how much milk she would tolerate through her feed tube; how much aspirate we removed with each feed; how much breastmilk I managed to express; the weight of her diapers dry and after she peed; then when she switched to the actual breast, for how long she fed each time, according to a strictly measured three hourly schedule. It feels so good, so peaceful, so right not to be fixating on the numbers for once. She is a daily reminder of how meaningless they are.

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If Girl Wonder experiences many things at a delay, her capacity for human connection is not one of them. She reaches out to people, graciously, gaining admirers wherever she goes. She seems to make it a mission to target the most miserable in the crowd. While waiting in line at the supermarket, or on the tram, I'll see her beaming at a point in the middle distance, and glancing over my shoulder to look for what it is she's so taken with, I'll find her making eyes at the grumpiest of old men, at the sullen, awkward teenager, the tear-streaked child, the desolate homeless person. She sees them all. She reaches them. I have yet to find any who can steel themselves against her charms.

At less than a year of age, my daughter is wonderfully, authentically true to who she is. Girl Wonder is impervious to what George Estreich, writing about his own experiences raising a daughter with Down syndrome, calls society's 'incessant, nagging whisper to advance, advance'.

At times I envy her that ability. But always, I am so grateful to be her mother, getting these opportunities to learn the lessons she teaches.

The US National Down Syndrome Congress is calling on all of us to celebrate World Down Syndrome Day by practicing random acts of kindness in honour of those we know and love who carry an extra 21st chromosome. If you'd care to participate and share your random act of kindness here, Girl Wonder will be happy to pay it forward. Happy WDSD, Happy first-day-of-spring!

#Microblog Mondays: risk versus possibility

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.

They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

As an agnostic feminist, I have been a lifelong supporter of women's right to choose. I have also been a lifelong advocate for - celebrator of! - the plurality of human experience. We like to think of ourselves as moving into a world of ever more respect for rights (of women, of minorities, of various 'others') and respect for diversity.

And so, like others before me, I struggle with the contradiction inherent in the fact that as our societies become more embracing of diversity, we are also, thanks in part to more accurate prenatal screening (which is not accompanied by accurate education), adopting ever more normative standards of what that diversity should look like.

By some estimates, upwards of 90% of pregnancies where a risk/possibility of Down syndrome is detected are terminated. There is a real chance that for people like my daughter, a day will come - and soon- when they will wake up to find themselves the last of their kind.

While I suspect that most people will find it hard to understand how I can say I have come to love that extra chromosome in all its unique, confounding, divisive glory, it seems a little sad to me that we're denying ourselves opportunities to live with this diversity: diversity of experience, genetic diversity, human diversity.

I can't help but think it's a shame that in our avoidance of risk (what life worth living doesn't involve some level of risk?) we are closing ourselves off from all kinds of possibilities.

Written as part of Mel's Microblog Mondays. Check it out here to participate.

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.

Of mindfulness and mourning

There was a passage in the book I'm currently reading that snagged my attention and my heart, exactly the way such sentiments do when I encounter them in real life:

Time was when I cooked for four. Time was when I chafed and grew fretful and said 'I can't bear this business of having to think of supper every night'. Time was when I dreamed of all the things I could do, all the lives I could lead if I wasn't tied down, beset, beleaguered. And time was - I'm glad to say - when the clasp of small arms around my neck and the feel of a soft face against my own stilled the restlessness and made me grateful and glad for the moment. 

Glad for the moment.

Although all too often my real life encounters omit that last thought - the only one that really matters - it's a sentiment I think many of us in the ALI community can relate to, we who have longed for the clasp of small arms and the feel of a soft face against our own. No restlessness about it.

We are fond of saying (perhaps to stay the tears?) that this is a silver lining, a blessing in disguise of infertility and loss: that these heartbreaking experiences will make of us more mindful parents. That when the chance comes our way, we won't whine about being tied down, about the loss of glamour or about sticky floors, having to be home every night for dinner at six, about the curtailing of dangly earrings or picking stray cheerios out of the bed sheets. And even if we cannot always keep to our own heroic parental standards of constant gratitude and mindfulness - for we are human, and there will be moments taken for granted - we remain, I believe, acutely aware. Perhaps more mindful than most of just how precious and ephemeral every beautiful moment is, as each new day presents us with new versions of our children, exceeding all the long-held dreams our hearts would conjure. Moment on top of beautiful (or infuriating, or scary, or prosaic, or tedious) moment, as these little beings we seem to have dreamt forth change, develop, astound, evoke pride and gratitude and wonder.

But what if this mindfulness, as much as it reminds us to savour, brings with it such awareness of the fleeting nature of everyday life that it tears us away from the moment, tempting us instead to mourn for that which is passing before we've had the chance to fully appreciate its perfect bounty in the right-here-right-now? The knowledge that every first in their developmental trajectory is matched by a last. Our babies wrenched from our grasp by the children they will become, and the adolescents those will become, and so on, before we have time to say our goodbyes.

Because that, too (at least for me), is the legacy of loss and infertility; each moment fiercely, irrevocably, painfully precious.

I fret over the days that pass too quickly (while also being uncomfortably aware of just how unlike the parenting experience of my firstborn). Five months old! Six months! Now seven! I flail and try to grasp. I chide myself for not making note of each infinitesimally adorable thing. I take hundreds of pictures, and then feel awkward guilt for placing a lens between me and my daughter, capturing rather than living in the moment.

Mindfulness can and does nurture gratitude, but it can also overwhelm with, well...mindfulness. Awareness of just how real it all is. Just how impermanent.

I know it sounds melodramatic, but it's a question I've been ruminating on a lot lately, even before the passage from the book spelled it out for me. Girl Wonder will be my last child, the only one I get to raise. And while the knowledge of that and the arduous road we had to travel in getting her here are vital reminders to cherish each moment of joy, those same moments also encapsulate a strange kind of mourning (albeit one I know I am supremely lucky to experience).

And how do I truthfully balance that in my heart?