#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: A philistine's lament

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

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This city is steeped in history.  Life size memories of empire,  Ottoman siege, two world wars, 18^th century courtly life, 19^th century artistic revolution, monarchy and fascist and communist and democratic rule writ large on the landscape; all right on our doorstep.

It makes for a rich cultural and intellectual life. Our days may be spent on hours of leisurely meandering, surprising discoveries and little gems at every twisted turn. Things here are done properly, at a slow pace, with attention to all the right detail. The unparalleled café culture is recognized by no less than UNESCO.

(The concept of the ‘take-away’ coffee is starting to emerge here, even if people really think a good brew is to be slowly sipped in civilized surroundings, preferably accompanied by a slice of some delicate confection and some reading. My dear husband, proof if ever there was that however long you take the boy out of the city, you’ll never take the city out of the boy, used to look aghast when I’d get a coffee to go. Now he merely shakes his head.)  

The thing is, architecture here pretty much comes in two sizes: massive, monumental and gold-trimmed, or quaint, crooked and cobbled.

Exhibit A

Exhibit B

It’s all so beautiful and interesting and full of old-world charm. But it’s also just that: old. And what it’s not is easily navigable with a kinderwagen, boisterous 10-month-old with all her paraphernalia in tow.

I’d be lying if I said I never longed for the featureless, ahistorical (accessible!) smooth asphalt landscapes of my Canadian childhood.

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Philistine:

noun Phi·lis·tine \ˈfi-lə-ˌstēn; fə-ˈlis-tən, -ˌtēn; ˈfi-lə-stən\

a person who is guided by materialism and is usually disdainful of intellectual or artistic values

Guilty as charged.

#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.

#Microblog Mondays: Little scraps of life

Girl Wonder is a tiny little thing, weighing in at just under 5 kg (she was 8 months on Christmas day). To my mind, this has numerous benefits. I love her compact nature, which allows me to lie to myself about the passage of time still cuddle and cradle her like an infant even as she's fast approaching the end to this stage of development. (I can't imagine how my back would be faring if I were carrying one of the larger babies I see everywhere around us!) And while it made locating baby clothes for her tiny 2 kg frame a challenge in those first few months, she has spent longer in some of our favourite little garments - she's now typically in a three month size, depending on the brand - which has allowed us to retain her wardrobe accordingly.

But much as I might wish to stall the ceaseless march of time, she is growing, as babies eventually do, and with this new year we're having a clear out too. That means finding a place, or purpose, for all those beloved items she no longer fits. Initially I thought of repurposing some of the sweet fabrics for a home-made sensory book for Girl Wonder. However I quickly realized that this sentimental mama can't bring herself to cut through those tiny memories ('she wore this when she first smiled'...'this is what she had on when she first met her uncle from Canada'...), while the practical side of me is loathe to discard still very-much-usable baby items.

Their lack of utility for us is not merely a reminder of how quickly Girl Wonder is growing up, but also of the fact that, however much I might will it otherwise, this is it for us; the end of my child-bearing years.

But we're in a small city centre flat, which leaves me with a dilemma. Staying in the moment might present its own challenges, but right now it's the letting go - even of those things which are mere symbols of what was and what will never be - which is wrenching my heart.

Momentoes

Bloggy friends, am I the only one sappy enough to feel a twinge as I discard too-small baby items? What have you done/will you do with the items your children no longer use?

A tale of two playgroups

I'm the kind of person who really likes my own company and can be a bit of a loner by nature, but I think when you're trying to integrate into a new cultural space, it's do or die. I've moved to enough new and strange cities in my time to have a keenly developed survival instinct telling me to get out there and vigorously mix, integrate, interact. Volunteer opportunity at the local homeless shelter? Sign me up! H's second cousin wants to meet for coffee and practice her English? Yes please! Plus, there is the small detail of my small daughter now spurning me on; she has a couple cousins here but both are school age and if I don't want Girl Wonder to become a little hermit baby I'd better mom up and make an effort.

So we've been checking out playgroups. However - leaving aside the strangeness that is my new social role as a mom - my German is still wobbly enough that I'm not confident just waltzing into a local group to make my own way in a language which still feels foreign to me. So we went for 'special interest' groups as a first step.

First up: there is a very active, city-wide, English-language playgroup that exists for the many foreigners who call this place home. A good place to start, right? Well, sort of; we might have had language in common, and even the experience of being newcomers, but to be honest? (Of course I'm painting with broad strokes here, I only dipped my toes in, after all), that might be where the commonalities end.

Because this city hosts the headquarters of a number of international organisations, expats here tend to be of the well-travelled and well-heeled variety. While we may be the former, we are certainly not the latter. Our home isn't big enough that we can play host to fourteen (fourteen!) sets of moms and babies, as others in the group have recently done. And while we move in some pretty interesting circles, we can't tell you about our last visit to the ambassador's residence for a semi-formal buffet dinner.

So there was already a certain socioeconomic divide, although that wasn't really the thing that singled me out and made everything seem awkward. Nope, our family history took care of that. Since my own brush with terminal illness in my teens, which left me with a pronounced limp, I am accustomed to answering intrusive curious questions about 'what's wrong with your leg?' my complicated medical history. When I know the intentions are good, it doesn't really bother me and I'm happy to oblige. Though I'm finding that things get a bit more sticky when it's your child(ren) concerned, I'm also someone who wants to contribute to the destigmatization of topics like infertility, disability, unconventional family building, etc. and so I generally try to be open and matter-of-fact. Our stories, all too often shunted to the margins for the comfort of a complacent society, should be part of the conversation too. Also, I (naively?) like to think that if I share my experiences in a way that shows they're not a life-defining tragedy for me, it might demystify some of the fear and pity for others as well.

Uh, except...maybe, on some occasions, this is more than a room full of terrified, pregnant fertiles most people can handle. So when stories were being exchanged about birth experiences and starting solids and yadda, yadda, yadda and, rather than come off like a wallflower, I honestly contributed...'born six weeks early by cesearean'...'intra-uterine-growth-restriction'...'Down syndrome'...'we're starting solids later because of her surgery at 36 hours old and feeding tube for first nine weeks'... Well, I'm sure you see where this is going...

I wasn't just the lead balloon in the room; I quickly became the bogey man, the personification of everyone's darkest dreams. You guys, that was before we even got to the infertility and loss stuff. People just looked at me. And despite the fact that my life may be dreamy these days and is certainly a long way from dark, it wasn't the most comfortable experience to see myself through other eyes.

I felt isolated. Like a fake, a freak. And though I know it wasn't intentional, that no one had set out to ostracize me, I couldn't help but feel like the awkward new girl at school facing The Plastics. (And if you haven't seen Mean Girls, go check it out; I'll wait. Tina Fey and Lyndsey Lohan in a previous incarnation. Love.)

(As another aside, I'm not really sure why people think 'I can't possibly imagine what you're going through' is in any way a good thing to say to someone facing life challenges. In my experience this only underscores otherness, leading to the person feeling all the more isolated and lonely. Also - while the subtly but crucially different 'I won't pretend to know what you're experiencing' is honest and direct, which I appreciate - in saying that you simply can't even imagine, you're pretty much saying that you lack the compassion or humanistic imagination for any kind of empathy. Way to go. But I digress...and that is deserving of a whole post of its own, really.)

So where was I? Ah yes, back to the playgroups.

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Luckily, that finely honed survival instinct of the expat prevented me from throwing in the towel after my initial difficult attempt. The following week, there was a playgroup put on by and for the local parent's network for families of kids with Down syndrome. (Again, at the risk of generalising,) I've said it before and I'll say it again: I like how people from this 'community' think and approach life.

There was the kind of shorthand that groups who have found themselves on the margins tend to share, and none of the awkward horror at all our baggage: was she born early? Did we get a birth or prenatal diagnosis? Did she have any medical anomalies? What is she doing with her early intervention therapist?

In a few brief conversations, I also learned that two of the babes in the group close in age to Girl Wonder were the product of fertility treatment. Do I think that there's a relationship between this extra challenge in family building and potential parents' attitudes towards chromosomal anomalies? Probably, yes.

Am I saying that if you've experienced hardship you're inevitably going to be more empathetic and have your priorities worked out? Not at all (and Loribeth wrote a great post recently about how people who do experience adversity in life are expected, often for the benefit of everyone but themselves, to fit a certain redemptive cultural narrative).

But I do think that once you've been through some of life's nastier shit storms there is at least the opportunity to gain some perspective; some gratitude. Not to get hung up on life's little 'problems'. So many of you have shown me that, with grace and humour and generosity of spirit. And while this ALI club is certainly not one that any of us would have voluntarily joined, I think the higher-than-average levels of compassion and determination not to sweat the small stuff are a significant silver lining that make me glad to have you all for company. But again, I digress...

The gist of my second attempt was this: I felt accepted. Embraced. And - perhaps ironically, given that shared language was not the common denominator here - understood. It was such a good feeling, and one that made me think I'll do fine as we move forward, even juggling as I am a new hometown and my new role as a mom and my newbie status in the world of Down syndrome.

I'm not saying that difficulty is something to be lauded. But maybe difference is, or should be.

With our unorthodox background stories, our transnational lives, our off-the-curve road to reaching a family, our high risk pregnancy, and a host of other variables, ours was never going to be the typical, 'normal' story. And as much as others may have a hard time with that, I'm ok with it; better than ok. I'm grateful for and sensitive to complicated, less-than-'perfect' realities. I'm happy. My life is full of love.

Leaving that playgroup, I found myself, not for the first time, feeling like we've landed on a really good side of 'normal', and oh so happy to be here.

And we don't even own a dryer! Source.