Eating my words and exiting stage left

'While infertility and loss will always be a part of who I am and are crucial to my parenting journey, the version of me residing in these posts doesn't reflect where I am with life right now'.

'This space has become like any other mommy blog, and that's not who I am/the world doesn't really need another one of those'.

'I always felt compelled to write from a place of sadness/grief/anger/<fill-in-the-negative-emotion>, and with things going well, I struggle to find the motivation to record meaningful thoughts'.

'Life is so full, busy and happy, that I simply don't find the time to write, and even if I do, I worry that my posts are trite or frivolous'. 

'I'm not sure how maintaining this space can be a source of support to others still actively pursuing treatment/living children/resolution'.

'I feel like almost everyone from my 'cohort' of ALI folks, those who supported me in the depths of my struggle, has (happily!) graduated to parenting living children'.

In two year of lurking on ALI blogs, and nearly three (!) of keeping this space myself, I have heard variations of all the above, the inevitable soul-searching and musing on wither the ALI blog after living kids.

And here's a confession: reading any of those, in days past, used to make my stomach constrict and then lurch. I felt abandoned, betrayed even. Left behind. When I was stuck knee deep in my own misery, I wanted only the company referenced in that the old chestnut. I needed an invite to the grand pity party. I didn't want and wasn't able to hear about your full lives, your happy babies and growing children, your peace with your current selves.

But now? Now, I get it. In the cycle of things that sees us all pass through numerous seasons, I've become that blogger who used to make me cringe with pain to behold.

And so, this blog has reached (some while ago, in truth) the end of its natural existence, or perhaps it's fair to say I've grown beyond this blog. That growing was hard, it was often horrible, it was some of the most arduous emotional work of my adult life. In fact, only a fraction of that devastation even made it onto the blog.

But now, here we are. I'm ready to eat my words and bow out gracefully, happily, if belatedly.

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There's another point, a small vanity that has kept me from this space in recent months: while I began writing simply to pour out the emotions that roiled within me, quite soon it allowed me to experience the catharsis that came with a well-worded description. When I found a resonant or beautiful phrase to describe my pain, when I landed on an apt analogy to articulate my emotions, it calmed and healed me. When others said that my writing gave them that catharsis, resonated, or validated what they were experiencing, I felt a sense of pride in my ability to abide with you. Pride and accomplishment in the person that this admittedly often shitty journey forced me to become.

Right now, I simply don't have the time or headspace to write in a way that gives me that sense of calm or pride or accomplishment. (I've written exactly one post in all of 2015 that I feel meets these standards.) And truth be told, maybe I derive those things elsewhere right now.

So yeah, things have gotten quiet here, not only in terms of my posting, but also with visitor traffic. I can't blame you; what reason is there to visit, really?

I still have many things to say - about motherhood after loss, about what Girl Wonder is teaching me every day, about parenting, disability, and advocacy, but also, again, about things which fired my passions long before babies were a blip on my radar: politics and social justice and travel and global living. And of course, tea and Star Trek and finding my bliss. But I think all that's for another day and another space. (If you'd like to keep following my meanderings on that journey, or just want to keep in touch, leave a comment or drop me an email. I'd hate to lose these connections!)

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After S died, I remember reading somewhere that the two most comforting words in the English language are me too.

Blogging showed me the truth of that sentiment. Like a beacon in the darkest of hours, you reached out to me. You were there too. You understood. And so we commiserated, simultaneously drinking in, from the tiniest, far-flung corners of the earth, our respective cups of tea/wine/tears. Our paths crossed and diverged and crossed again. 

Blogging, reaching out to others and having them reciprocate, made me feel less alone. It - and you - helped me to laugh and cry and remember and forget. Made me brave. Made me grateful. Made me smile. Made me, in part, the woman I am right now.

To all the sentiments you've shared; all the pieces of your hearts; your deepest secrets; your inner crazy and your outer coping; your anger, your fear, your hope; your gestures of friendship and compassion; the lessons you've learned; your insecurities and affirmations; the resilience you've built and the joys you've discovered; your love.

To all these things you've shared, I say only this: Thank you friends. Me too.

#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: 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.

#Microblog Mondays: Masterpieces

We arrived here just in time for the Long Night of the Museums, a city-wide cultural event in which with a single ticket you can visit dozens of museums and galleries which remain open until the wee hours on that particular night. This city is world renowned for its museums, one of the perks we hope Girl Wonder will benefit from in her upbringing here, and since our forays into gallery space have proven a surprising hit with her so far, we decided to give it a go. Besides, we were still twiddling our thumbs waiting out the arrival of all our worldly possessions in heaps of boxes, and the chaos that ensued for many days thereafter - so why not pass the time so pleasantly?

We chose to start out with a trip to the planetarium, hit the architectural jewel in the crown of the city's Art Nouveau, check out some surrealist and symbolist paintings in one of the galleries, and finally finish at the natural history museum's anthropological collections. The evening was a mixed bag for Girl Wonder: the planetarium was an unsurprising hit, with its sparkly, swirling projection of the universe keeping her immersed and quiet for a full 25 minutes; she kind of liked the works of Gustav Klimt - again, sparkly and shiny and larger than life - but then slept through a whole gallery of Miros as well as the paleolithic art at the Natural History Museum.

And as for me? I have to confess, as much as I enjoyed the artistic orgy, I couldn't keep my eyes off our own little Wonder and her reactions to so many new stimuli. It's a cliché containing an inherent truth that seeing things through her eyes, experiencing them with her for the first time is a whole new revelation, making this jaded traveller wide-eyed all over again.

The wonders of the cosmos, the evolution of humankind, the luminescent cannon of art history from the stone age until the last century could do nothing to distract from our own little masterpiece.

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

Updates, updates everywhere but not a moment to type

How did it get to be October already?! ?(I know, I say that, like, every time I log on.) Definitely one of my favourite months of the year, though also the season I get most homesick for all things autumnal. Nobody rocks autumn like they do in Canada, friends.

October 1st <<2nd? I totally started this post last night> marks the beginning of Down syndrome Awareness Month, and thus the start of the 31 for 21 Blog Challenge. It aims to raise awareness of Trisomy 21 by introducing readers to the everyday lives and realities of families who experience Down syndrome. At  first I thought of participating myself and, full of good intentions and best laid plans, even got so far as adding the button to the right >> (That counts, right?)

This seemed like a good thing for me to do this month because a) we're in the middle of an international move, b) Girl Wonder is growing and changing in leaps and bounds, has many medical appointments this month and will begin her early intervention program in a few short weeks, c) I need to brush up on my German, d) am recovering from surgery on my left hand that makes tasks like typing slow and arduous, e) <as a consequence of points a through d> I am seriously short of time, and f) I'm clearly insane.

But then, well, in the *cons* column for this idea, there is also all of the above. My proverbial plate is full not only with all these grand transitions and minor causes of mayhem but with delights and simple pleasures and rare delicacies. Yes, (lover of a mixed metaphor that I am) my cup is full but my plate runneth over! Or...something like that? So anyway, 31 straight days of blogging ain't happening any time soon. On many of those points I shall endeavour to update you all in the coming days weeks oh ok, years.

A brief Girl Wonder update though (because let's face it, I'll take any opportunity, however fleeting, to wax ecstatic about this kid): she is thriving. She's still super tiny (wearing size '0') but growing up way too fast for my liking. And, though I kind of loathe the terminology and the fast-track, normative, chronological-development-preoccupied mindset that it encourages, she surprised all her caregivers by rolling over at only 10 weeks old and hasn't looked back since, hitting each 'milestone' as she goes. Her head and neck control are still weak, but she is so determined to be up and looking around and that has spurred her on. She spends so much of each day 'talking', telling us long stories full of adventure and glee and sometimes moaning over all of life's little injustices (e.g. her horse being left behind when we make an outing). She is the master of the full body smile, the entirety of her being wriggling with paroxysms of delight when she feels the moment take her; I have never seen anyone smile like she smiles and you guys, it is truly infectious. 

Five months into this whole adventure and 2.5 months out of the hospital, we are reaching some level of normality, if we are nowhere near normalising just where our lives are. For that I am so so grateful; a dozen times a day, H or I will turn to each other and say

Can you believe she is really here? 

That she’s ours and we’re hers? 

That we get to keep her?

We've lucked out in more simple ways too: Girl Wonder is, despite her rocky start in life, an exceptionally laid back and happy baby, taking everything in her stride and rarely fussy. She's accompanied us to wine festivals and concerts, gallery openings and fancy schmancy restaurants, and though I am sure some think us crazy for it, as we'd hoped, she hasn't limited our adult lives at all, only tremendously enhanced them. She rolls with it, a tiny Buddha baby for sure. She is perfection.

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In the interest of awareness, (since many of my readers may not have much experience of Down syndrome)  I'll leave that button up, though I kinda like Meriah's challenge for us to move beyond mere awareness to embracing acceptance. Let's take up the challenge!

Source

#Microblog Mondays: On the road

She is the daughter of this vagabond family, alright. At last count, we've called five countries in the last six years home-or-something-like-it. And in her 4.5 months of age, Girl Wonder already has six seven countries under her belt, courtesy of a west-to-east trans-continental road trip that's been part of planning our future whereabouts.

She took it all in her stride, intrepid barricade stormer that she is. (And was kept in happy company by a much beloved toy gifted to commemorate her Year of the Horse arrival. She loves that horse, but when we realized its magical, mood-changing qualities, stopping tears in their tracks, we loved it more).

Thousands of miles by car with an infant. Crazy, you say? Yeah, that's just how we roll.

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

So right

So yes, I am totally that cliché. My communications post-baby have faltered, and I no longer feel like I have the time to post regularly, never mind constructing lovely sentences to adequately convey our here and now. I marvel at those mamas who continue to post with regularity through early parenthood. There are posts I write in my head several times a week. Things I want to say, or record for posterity, or share. The thoughts come, sometimes even the words, but I struggle to find the time and space for such pursuits. Part of me still feels attached to this space and the outlet it has provided, while another part feels it is inextricably linked to a past from which I've been wrenched by these momentous past months. Months that were sometimes horrendous, but which have become filled with delights large and small with increasingly regularity.

And so I find myself back in this space to update on one such of the larger variety. Girl Wonder had her first long-term follow-up appointments last week, at a new hospital, to review both the situation with her ventriculomegaly and the possible consequences of the CMV. We knew this was coming but in the final delight at having her home, have tried to leave it to one side as we enjoyed family life for the first time.

In brief: everything looks wonderful. Her heart scan showed only minor anomalies (all of which are resolving as they should), and her brain scan found no signs of calcification, while her ventricals are measuring at the right size and growth rate for a baby of her size and age. We were thrilled. Prosecco was consumed at yet another chance to celebrate our amazing wonder of a daughter.

On leaving the hospital, having arrived with the first light of day for an early appointment and spent many long and anxious hours into the afternoon awaiting procedures, transferring clinics, and then waiting again for meetings with specialists who would interpret all the results for us, we were exhausted and elated. There was the briefest of moments when we looked at one another and felt a strange kind of disorientation.

H turned to me and said: 'Do you realize this is the first time in what feels like forever that we came to the hospital and received nothing but good news?  

It's true. Almost from the start, hospital visits kept throwing us for one loop after another. I think part of us both expected someone to say: 'I'm sorry, but we're going to have to admit her again'.

But they didn't. And she's doing awesome. The experience did indeed feel a bit (delightfully, intoxicatingly, ecstatically) strange.

I was reminded of that Paul Simon song. To paraphrase: getting used to something so right is going to take some getting used to.

And that's an endeavour - short as we are on time these days - that we will joyfully run towards.

 

So, apparently we're 'immoral'

For a moment this morning I was outraged and nauseated as I read, over my breakfast cereal, Richard Dawkin's latest contrarian tweet.

In response to a woman who wonders about the ethical dilemma of going ahead with a pregnancy after a Down syndrome diagnosis, Dawkins - seeing no dilemma at all - replies:

Abort it and try again. It would be immoral to bring it into the world if you have the choice.

But then I saw this (from Craig Porter):







































...and now I feel better. Best. Response. Ever. 

Suck on that, Richard Dawkins.

If this is what immoral looks like, then paint me scarlet.

Stuff nobody told me about parenting a newborn

I stumble, befuddled and bleary-eyed, from bed, unsure of the time or even, in those first semi-conscious moments, what day it is.

I rummage through the pile of discarded garments on the floor, selecting the least wrinkled, the least malodorous, and contentedly throw it on. I know I'll probably be in pyjamas all day anyway.

In the kitchen I manage to rustle up a breakfast of sorts: coffee - the stronger the better - cold left-over pizza and some squares of chocolate. There will be no time for cooking today, even if I could find the inclination, which I don't.

The detritus of the previous night's activities is everywhere; heaps of unwashed dishes and a room in happy disarray, that gives me a warm, smiley feeling to behold. This is a life well-lived.

It feels full, frequently overwhelming, full of mistakes and lessons learned without a manual, trial-and-error-on-the-fly-we're-all-still-smiling-and-no-one-got-hurt. The heady rush of daily developments and discoveries. Each moment a study in newness and magnificence. Blissful, and awash with messy, limitless possibility. Every day an adventure.

If infertility is surprisingly like being a physicist, I had no inkling of how much these first steps into parenthood would - oddly - resemble my earliest university days.

The gorgeous cause of all the leftover-eating, dirty-laundry-wearing

, mess-making adventure.

Good days, better news

We received the good news today that a blood test we've been waiting aaages on showed no sign of congenital CMV infection for Girl Wonder. This is significant since the time at which she contracted the infection will likely have a huge impact on whether she'll face any of the scary long-term consequences I mentioned in my last post. Her infection, it appears, was post-delivery, which means she was probably-hopefully-please-gods-above strong enough to dispatch it in those horrible weeks in hospital, and it may not follow her around for life.

She still needs monitoring. It's not a guarantee. But we'll take it. Happily. Joyfully.

Other than that, we are starting to experience some version of 'normal' (more on which later), each day is more hopeful than the last, and we are soaking up every moment with this sweet girl.

Dreams and reality

Girl Wonder is home, we hope this time for good. She is resilient and strong and brave beyond anything we could have imagined and we are fiercely proud of her. I can't describe the elation, wonderment and good fortune that we feel as we adjust to this new reality.
 

More than that, I’m not sure how to adequately recount the harrowing experience of the last weeks months. How to tell you about the events that rocked us to our very core so soon after we believed we had found respite from the fear and uncertainty.

About the days of watching Girl Wonder deteriorate physically, knowing there was something dreadfully wrong and not being able to do anything about it as the doctors poked and prodded and wondered for a long time without being able to provide answers.

About the eventual diagnosis of cytomegalovirus, another condition, like the ventriculomegaly before it, that has a might-be-nothing-might-be-life-long-devastation prognosis; the initial confusion followed by the stomach-churning fear.

About my rage at the god damned doctor who broke the news to us, saying in the same breath that ‘because she has Down syndrome it doesn’t matter that much’ if the CMV were to cause cognitive delays that could put her in a wheelchair, unable to speak or feed herself, as though her quality of life were an afterthought simply because she carries an extra chromosome.

About all the ‘minor’ symptoms of her CMV sepsis, including a terrible gastroenteritis that had her writhing in pain for days, after which she ended up being put on nil by mouth and losing even more weight; the terrible edema that swelled her little legs and her tiny face until she was unrecognisable as our baby. 

About how my heart broke right in two the day we realised that this awful hospital experience, practically the only life she had ever known, stole her smile, the one that had been so open and ready only weeks before.

About how excruciating and awkward and necessary it is to maintain some semblance of a family life - reading her stories, giving her bathes - as first time parents in the fishbowl that is intensive care, with a gazillion doctors meetings and hourly monitoring and visits from umpteen therapists every day, none of whom seemed able to help her.

About how I wanted to punch in the face the nurse who chirpily and dismissively told us, as we were reeling from yet another random diagnosis and seeking some concrete answers, not to worry, that love was all a child needed to be healthy; because obviously Girl Wonder is loved beyond measure by so many, but clearly that hasn’t spared her. And because my impotent, helpless rage had to go somewhere.

About how H and I looked like zombies, became shadows of our former selves, functioning on little to no sleep for so many weeks on end, no longer looking after ourselves or caring what we ate or wore as long as we could be by her side and present for every crucial meeting with doctors, there to comfort her after every painful test.

About how the little face that had only shortly before been growing pink and chubby became so ashen and drawn, and how helpless it made us feel to watch that process.

About the day when I was so mad with fear and sadness and sleeplessness that I imagined seriously thought about stealing her away from her hospital bed, taking her off all her machines, putting her in the car and just driving, because I just wanted her pain to end and I thought surely we could find a better way, somehow, anywhere.

About how we gushed our thanks, never with adequate passion or gratitude, at the amazing consultant who finally pushed for the right tests, the answers we needed, the treatment that would make her symptoms disappear and send her home to us.

About the ongoing uncertainty we now have to absorb because we don’t know whether her CMV infection is congenital or contracted post-birth, and thus could advance at a later date. She might be fine now but suffer significant brain damage at eight months or fourteen months or four years.

About how terrifying it is to admit that to myself.

About our tired resignation at the many, many hospital appointments that will be necessitated in order to monitor this situation when all we want for her is a normal, happy childhood and for us to be a family.

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I'm not sure how I can tell you about any of those things, because to look at the happy, growing girl - three months old on Friday - playing on the floor next to me as I type this, it all feels so reassuringly unreal.

If what we've experienced until now has been a horrible nightmare, this must surely be a dream. This girl, she truly is a wonder. A dream come true.

Overwhelmed, negative and positive

You may have noticed in recent days that my blog was re-set to private.

It's not that I actually wanted privacy per se, or that I've even updated. On the contrary, I have had little time or energy to post blow-by-blow updates, and even if I did, I wouldn't know where to begin. Girl Wonder has been back in hospital for going on a month now, and is struggling. We are struggling with fear, watching her suffer with so little complaint. She deserves a babyhood free from all this pain and illness.

Also, there comes a point when it becomes a special kind of overwhelming just to see how overwhelmed others are by the sheer volume of your misfortune. And at the same time, I don't want to come across as all woe-is-me, because however hellish things are, we continue to know and celebrate how blessed we are. There continue to be moments of happiness. My daughter makes me laugh out loud with surprising regularity, given our current situation.

So, not knowing what to do or say in the face of all this, I just stepped away.

And then, as I wailed my sense of fear and injustice to a small group of amazing parents who have carried me through many a disappointment and triumph, something amazing happened: they poured out support and strength for our Girl Wonder. From the four corners of the globe, they enfolded me in their nurturing love. They offered to fly here to just sit with us and cry. They researched medical journals and sought expertise on our behalf, as we battle the many diagnoses we're dealing with. They offered to feed us, literally and metaphorically. The incomparable soul, the generous heart that is le petit soleil, (who is herself facing no insignificant measure of heartache and stress and fear in these days), has taken the un-expected step of drawing together all this love and support to give us some concrete help at a time when we would otherwise feel very alone.

And now I'm overwhelmed for a whole other reason. There are no words of gratitude sufficient enough to repay this kindness. The gesture is so welcome, but it is the spirit behind it and the feeling of being embraced, overwhelmed by loving kindness, that are really a balm to our weary spirits right now.

I so hope to be back soon, with the time and energy to be giving you a happy update. In the meantime, Girl Wonder draws on your care and good wishes, and H and I continue to be oh so thankful for your thoughts, prayers and actions.

(**I have continued to be active on internet fora where I have shared personal details first put down in writing long before it occurred to me to be cautious about my identity, long before even the birth of this blog. That space seemed like such an intimate family context, while I guess I've always viewed this blog as a lot more public, but given the uniqueness of our situation right now, it wouldn't be difficult to trace those personal details back to here...If you should happen upon them, or know me in that other context, I'd appreciate you not referring to our names or that other space here.**)

 

Not out of the woods (or the hospital, as it happens...)

After several days in which she did so well she surprised her care team, Girl Wonder has been (re)hospitalized for sudden, rapid weight loss, low temperature and suspected now confirmed sepsis. She's being given an aggressive course of antibiotics, put under heaters, and we're supplementing my breast milk with high calorie formula.

When the doctors mentioned meningitis (though probably unlikely), I finally lost my shit once and for all.

My resilience and reserves of energy are at their lowest ebb yet. We've had to be so strong through one blow after another. Girl Wonder has had to be so strong. Why does this shit keep happening to us? I'm so so scared and can't stop crying. Infection in a pre-term infant (let alone one with all her complications) can be life-threatening. I just want her to have the chance to be a happy baby already. Our hopes are so simple, yet so seemingly unachievable. I can't help but feel we failed her somehow.

I'm confused and afraid and sleepless, not because of the poopy diapers and late night feeds and colic that are supposed to be the cause.

How we're even putting one foot in front of the other I have no idea, except, I suppose, for her. H said it best today, after we watched in awe as she endured a painful spinal tap procedure with no fuss and was all smiles 10 minutes later: at less than six weeks of life, Girl Wonder is the most impressive, inspiring human being we have ever met.

The fiesty, five pound Girl Wonder

This will be quick, as I have five lbs of soft, rosy, delicious smelling, euphoria-inducing magic sitting next to me waiting to be cuddled.

In brief (and in response to popular demand): we are home. After four weeks of NICU (which, I am not going to lie, were hellish and overwhelming; more on which later), our Girl Wonder was released from hospital yesterday. It's beginning to dawn that she is really ours, that she is here to stay.

Just as her prenatal predisposition suggested, she flew past every hurdle with flying colours. At less than 48 hours old, she underwent surgery to repair her duodenal atresia and although we were told not to expect too much too soon, was feeding through her stomach and managing to use her bowels before her surgeons predicted. At two weeks old, when her drainage tube was removed and we were told that it would be slow going, she managed to defy expectations again and master the art of breastfeeding within a matter of days. At three weeks, after her most recent brain scan, she proved how inconsequential was that initial diagnosis of ventriculomegaly which sent us into a tailspin what seems like many lifetimes ago now. Her ventricals are holding stable and are not expected to affect her development. And the Down syndrome?`Right now it doesn't feel like a big deal. She is beautiful and perfect and exactly who she is meant to be, and so we will wait and see how her own unique challenges and talents unfold. (Although allow me a moment of maternal bragging in saying that there too, she has exceeded all expectations for what is 'normal' at this stage for a child with Trisomy 21.)

She is still on partial tube feeding and H and I have mastered what seemed like scary, medicalised feeding procedures only a few short weeks ago. But she has also steadily put on weight, and although still adorably, mind-bendingly tiny, she now weighs over five lbs.

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In those first days after her birth, as we marveled at her resilience and tolerance for invasive medical procedures, and she was wearing one of those little masks that go with the photo-therapy many preterm babies receive, we joked that she looked like a miniature superhero a la Robin the boy wonder.  And truly, her super-hero-like qualities made this an apt comparison. One of her nicknames has become her name preceded by the capital S adjective Super. And so she is.

Her given name is a traditional but uncommon one, and so I've been wary about broadcasting it here. And thus, for the purposes of this blog, she shall be known as the Girl Wonder. (Incidentally, I am not yet sure what will become of this space. There is a big part of me that thinks that her story is now hers to tell. There is another part that thinks she deserves to be shared with the world, and to hopefully inspire hope and confidence in others who may be experiencing some of the challenges that we faced in getting here, to her. There is another part still that is so chronically sleep-deprived and awe-struck by my own offspring that blogging comes faaar down the list of priorities right now, and thinks that's as it should be. And besides, I'm really not sure if I have a mommy blogger in me...But on all this, we shall see...)

For the time being though, know that in  our un-showered,junk-food-eating, sleep-deprived, befuddled and overwhelmed state, never has all seemed so right with the world. That we are thankful for your love and support. That, despite my own slow recovery from the c-section and a bout of endometritus (I am not, it would appear, as resilient as my daughter these days), we are beginning to thrive. That life, such as it temporarily is, feels crazily, heart-bustingly full.

A fitting first gift from a proud grandma