Wednesday, 31 December 2014

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.






Wednesday, 17 December 2014

In the midst of celebrating, stopping to grieve

Our home is bustling and busy as we celebrate Hanukkah and prepare for my mother's arrival tonight and for the celebration of Christmas; everything around us light and joy. I was going to come here to write a fluffy little post about our gift-giving and gratitude and excitement for the season, but never find the time.

And then, Girl Wonder at my breast and in a moment of maternal calm, I skim through the day's headlines and read about the events in Peshawar yesterday. 132 children left for school in the morning and didn't come home. It makes me feel sick to read on but I do, because at the very least, I feel the need to bear witness. When such events take place close to home we all stop and think and mourn, but when they take place far away (perhaps because we 'expect' them in such foreign and far away places?), we often stay silent, shake our heads sadly, but simply move on.

And that makes it all the more important for me that we bear witness. Because as vastly different as our lives and experiences and beliefs may be, and even the dimensions of our personal tragedy, there is some universal kernel in this loss. My heart breaks when I read the sad, beautiful words of one father who says 'My son was my dream. My dream has been killed', because a small part of me feels that too, and because I now know the gift of new dreams.

I am not really a pray-er, but such as they are, I offer my prayers nonetheless, that those parents, those families, those communities know some small comfort in the days ahead. First and foremost because I wish that for them, but also because (however naive it sounds) I want to raise my daughter not in a world where we shake our heads and then move on, but which recognizes that despite differences we all love and we all grieve. We all celebrate and mourn. Some human experiences are universal. Each life, no matter where it is lived or ends, is equally valuable.

I don't really know that this post has a 'point', other than to stop and acknowledge. In the midst of our celebrating this week I will take moments to mourn for the families of those 132 children. I will seek to honour those young lives. I will light a candle against the dark. It is nothing, but it is all I have.

Monday, 1 December 2014

#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.

Thursday, 27 November 2014

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?



Monday, 17 November 2014

#Microblog Mondays: Relative values


 Translation: A cigarette shortens your life by eight minutes. A day of work shortens your life by eight hours.

Unlike their industrious Germanic neighbours in that economic powerhouse to the west, the denizens of this city are not known for embracing a strong work ethic. It's probably fair to say they're more embracing of an eat, drink, smoke and be merry oh-alright-I'll-begrudgingly-crack-the-merest-hint-of-a-smile-but-only-under-duress approach to life. (They're not known for their merry nature either.)

Yeah, sounds about right.


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

Monday, 10 November 2014

#Microblog Mondays: Amateur hour

We're unpacking boxes, some of which, given our vagabond ways of days past, have been in storage forever.

She'll soon be into that, my mother - here for a week to help us settle in - says gleefully. (I suspect she's seeking karmic retribution for my hellian toddler ways.)

But she may have a point. Much as it, erm...made me feel stabby frustrated me when smugly pointed out by the rampantly fertile in days past, there's probably lots we don't yet appreciate about the tangible, hardcore realities of having a kid around the house. Not yet.

Before, we could casually, unthinkingly arrange our home with purely aesthetic considerations in mind; display the many treasured items from our travels and adults-only lifestyle of days past. Beautiful, breakable objets d'art. Books with thousands of fascinating, tear-able pages. A universe of off-limits delights for tiny, exploring hands and mouths...  

As first time parents, we slid in under the wire. We are old. But still, we're relative amateurs. We have so much still to learn, (a prospect that excites rather than daunts).

It's true; she'll be into everything and wreaking havoc before we know what hit us.

And that'll be the happiest loss of property I can possibly imagine.

Strictly upper shelf stuff from here on in.




















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

Monday, 3 November 2014

#Microblog Mondays: Leave-takings and homecomings

The new keys have been collected, the boxes arrived and the unpacking and settling in begins again.

I've hinted that changes were afoot, and now here they are upon us.

And so, farewell to England.

More than a decade after I first set out for these shores as an eager young graduate student, through all my sojourns elsewhere, I always returned to you; you were the closest thing I had to a home outside the country where I grew up.

Although (hardy Canadian that I am), I often bemoaned your rather hysterical response to 'extreme' weather conditions, and your unique, occasionally callous brand of the welfare state, we had a good run, you and I.

You instilled in me an unshakable appreciation for an orderly qeue, and a lifelong confusion over the use of words like qeue vs line, lift vs elevator, pushchair vs stroller. You made me love chocolate. Your quirky neighbourhoods and streets taught me valuable life lessons, took me on many adventures, and consoled and distracted me through ill-advised romantic entanglements.

On your soils, I gained a PhD, a soulmate and life partner, and the most beautiful daughter imaginable; you answered prayers I didn't even know my heart was saying, beginning all those years ago. Here too I experienced the most profound of losses, the most harrowing days of my adult life. In all these, a part of you will rest in my being forever. I cannot look on your gentle countryside without imagining S lingering there in your beauty. This brings me great comfort.

I guess it's fair to say, I grew up under your watchful eye.

And now, here we are, four minus one, to begin anew.

In H's home town, a city famed for schnitzel, strudel and Strauss.

And the adventure continues. The growing continues.








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

Monday, 20 October 2014

#Microblog Mondays: The tyranny of pink

Okay,  okay world, I get it; I have seen the error of my ways. My daughter doesn't wear nearly enough pink or frills or dresses. Because (gasp!) without those aids, she might not understand her prescribed social role. <Aaahhh!! Gender confusion!!>

It's not that I oppose pink per se. I probably even own a few rose tinted garments myself.

But I guess, since long before Girl Wonder made her appearance, I've been a strenuous opponent of the tyranny that is the pink-and-blue-dichotomy. (And since first finding out she is a she, I confess I have lived in fear of facing the moment of the Disney Princess Effect.) Because, well...shouldn't we all resist this? Shouldn't I raise my daughter with an appreciation for the possible fluidity of identities and the empowerment that can arise from that? Shouldn't she have the opportunity to develop her own sense of femininity, or to discard that notion altogether if she sees fit? And just as importantly, isn't this pink-or-blue, pastel-tinged universe just a tad... creepy boring??

I guess it's fair to say we were always going to be subscribers to the Riley school of childrearing as it pertains to gender ascription. Too bad not all gift givers can be like Riley though.

For now I just have to figure out what to do with all these frills, because it feels like a nursing home somewhere may be missing its lampshades.


 





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

Wednesday, 15 October 2014

Remembering

Today is Pregnancy and Infant Loss Remembrance Day. This means that tonight at 7pm, as every years since S left us, we will light a candle in memory of he and all those babies whose lives ended far too soon, and in solidarity with all those families they left behind.

Today, as every day, we think of S and miss him. We wonder about the two little lives who left us even sooner after he went away. Three babies who will always remain a mystery to us.

One year ago yesterday, we found out Girl Wonder's tiny heart beat fast and healthy. As I type this today, she lies cuddled in my arms; an amazing, unbelievable feeling. She has brought us so much joy, but she cannot ease the sense of loss we will always feel, for the big brother who should be here, full of protectiveness and jealousy.

Tonight, we remember all those tiny lives, those of our three babies and of all others too. We honour them, and we thank them for the beauty they have brought to the world, even if only in their parents' imaginings.


Thursday, 2 October 2014

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.


************************


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

Monday, 22 September 2014

#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.

Monday, 15 September 2014

#Microblog Mondays: Family of four


'How are the three of you doing?' 

'The three of you'; they say it so innocuously.

Or, 'Is this your first?'. An innocent query from a passerby. I stumble, pause for a second too long. Guilt. Sadness. Pride. Uncertainty. Love. So much love. How do you reply?

I have become resigned - after so long spent loudly and furiously grieving - to the fact that people can't won't don't acknowledge or remember our first born. Though to H and I, this is a family of four.

He is there in his sister’s sparkling eyes; in her secret dreaming smiles.

He is there in his parents’ impossible-to-realize determination to let no moment go unnoticed, unappreciated, uncelebrated. We want to stop and savour; to capture everything.

For babies grow so fast, you know. Except when they don’t. He never will.

And yet he is here. We are a family of four, but one of us - a son, a brother - will always be missing.











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

Thursday, 4 September 2014

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.




 

Thursday, 21 August 2014

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.

Wednesday, 20 August 2014

Peace


In recent days, a city where I lived and worked for more than two years (and stretched and grew and changed as a human being), has been ever on the verge of open conflict, trying to defend itself against a scary level of fundamentalism after decades of work to move beyond its legacy of trauma. My thoughts are so often with the people there, my former students, the families who shared their homes and stories and all of what they had, so often in short supply though it was. Of the warmth and hospitality I received. I think of their generosity of spirit, their openness and interest; of conversations carried out across cultures and generations, soft voices and gentle laughter, in the dark as the generators gave out. 

May they be safe tonight. May the warmth and hospitality and openness of these people win out over the fear and intolerance and violence they now face.




************************

 ~ Pray for Peace ~
 
Pray to whomever you kneel down to:
Jesus nailed to his wooden or plastic cross,
his suffering face bent to kiss you,
Buddha still under the bo tree in scorching heat,
Adonai, Allah. Raise your arms to Mary
that she may lay her palm on our brows,
to Shekhina, Queen of Heaven and Earth,
to Inanna in her stripped descent.


Then pray to the bus driver who takes you to work.
On the bus, pray for everyone riding that bus,
for everyone riding buses all over the world.
Drop some silver and pray.



Waiting in line for the movies, for the ATM,
for your latte and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.



To Hawk or Wolf, or the Great Whale, pray.
Bow down to terriers and shepherds and Siamese cats.
Fields of artichokes and elegant strawberries.



Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.



Making love, of course, is already prayer.
Skin, and open mouths worshipping that skin,
the fragile cases we are poured into.


If you’re hungry, pray. If you’re tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.



When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else’s legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheelchair, each revolution
of the wheels a prayer as the earth revolves:
less harm, less harm, less harm.



And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail
or delivering soda or drawing good blood
into rubber-capped vials, writing on a blackboard
with yellow chalk, twirling pizzas–



With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.



Pull weeds for peace, turn over in your sleep for peace,
feed the birds, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.



Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your VISA card. Scoop your holy water
from the gutter. Gnaw your crust.
Mumble along like a crazy person, stumbling
your prayer through the streets.


                                       ~ Ellen Bass

Friday, 8 August 2014

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.


Tuesday, 5 August 2014

A semi-retraction: not all people are bastards

As I was typing yesterday's post, the story of baby Gammy it seems was already making its way across global headlines, and an equally global campaign of support and compassion had blossomed. (I admit that with this adjusting-to-motherhood thing I'm somewhat behind with a fast developing story.)

In a few short days, funds have been raised to pay Gammy's necessary medical costs, and the international press coverage has generated what I consider a very positive discussion about a whole range of issues, from the the ethics of 'surrogacy tourism' to the lives of children with disability generally and the positive contributions they make to their parents lives. The tone of discussion has been a lot more open and well-directed than I might have anticipated.

At the same time, I'm surprised that there could really be any level of sympathy for the parents involved, as some comments here seem to have suggested. Is it sad for them, in the sense that they are clearly people who don't seem to grasp the value of every individual life, from that of their children to the woman they hired to carry them? Yes, pitifully so. But they are no more victims than the dubious agency which they apparently hired to broker a deal in which they never bothered to meet their surrogate.

As one commenter suggested, this is not normal practice for those who pursue surrogacy as a road to family building. Who goes about something as serious and life-altering as gestating and birthing their child without a lot of research, some serious contractual specifics in place and at least a certain level of comfort with the person hired to do so (which would entail meeting said individual)? If it were me, that would be the last venture in which I would be looking to cut costs.

And while I'm willing to believe that a 21 year old women from a small village in Thailand might be naive enough to overlook or not fully grasp these details, I can't understand why a couple who had undertaken fertility treatments would be. After all, experiences like IVF and surrogacy are not something you just enter into on a whim - almost by definition they normally involve a huge amount of forethought, soul-searching, weighing up options and preparedness.

And I would still argue that to normalize these people or to speak of their rights in this situation discredits those who enter into surrogacy arrangements out of a genuine desire to parent (and also smacks more than a little of the extent to which western notions of entitlement foreclose the rights of the surrogates in such a scenario). This really isn't about biological parents' right to termination, which of course should be respected. It's not a story about Down syndrome either, except insofar as some people see it as a marker of undesirability. No, we don't know all the details of what went on and who knew or understood what, but at the very least we know this couple hired a surrogate in a country where they knew there to be few if any regulations and precisely because it would be a cheap option. I'm not the only one to see parallels with The Handmaid's Tale here, and all this is said better there. (I won't even touch on the latest reports of an investigation into the biological father.)

As others have mentioned, there are so many things wrong with this story on so many levels that it's hard to know where to begin. What I can't see is any interpretation in which the couple are anything other than complicit at best, and exploitive at worst in this whole situation.

But actually, this was supposed to be a post about how some genuinely good developments have come out of a horrible situation. Not all people are bastards, if we just know where to take the discussion. My faith in people is renewed. And to end on a high note, this picture of Gammy being loved on by his surrogate brother is kind of adorable.

Source.



Monday, 4 August 2014

Basically, people are bastards

Last week I read a story that has been doing the rounds on Down syndrome blogs and boards across the global media. An Australian couple who hired a surrogate in Thailand to carry their twins (apparently at a clinic that's not even licensed) discovered through prenatal screening that one of the babies had Down syndrome. They requested that the woman (who they never met through the entire process) terminate the pregnancy but she refused on the grounds that it was against her culture's beliefs.

When she finally gave birth, they came to Thailand and took home the little girl with a typical number of chromosomes, abandoning the little boy with Down syndrome. The woman who had carried he and his sister (and bears no biological connection to them) has since been caring for the boy as his mother. She comes from a rural part of the country and her poverty is what compelled her to enter into the surrogacy arrangement in the first place. Now the baby boy, called Gammy and loved by his adoptive family, needs cardiac surgery to survive (as about 50% of all babies with Down syndrome do), and the family cannot afford to get him the care he needs. Meanwhile, his biological parents, who went to great lengths to conceive him via IVF, are back in Australia with his sister.

This story enrages and saddens me on so many levels I don't even know what to say. The Australia media, as they are right to do, has emphasised the ethics involved in using the bodies of impoverished women in the developing world, women who very often have few choices in life, as essentially objects to sustain a reproductive industry available to a wealthy few.  

As one half of a couple who struggled with infertility for years and came very close to needing IVF to build our family, I am angered at stories like this. Stories that give a bad name to assisted reproductive technologies which, on the whole, help to bring babies into the world for parents who just long to love and care for a living child. Angered that these stories give any credence to the widely held but mistaken societal belief that IVF exists primarily to furnish rich, self-indulgent couples with designer babies. Angered on behalf of the many wonderful and loving parents I know who had no choice but to rely on such technologies to welcome their precious babies, and who may face stigma as a result of such negative coverage.

And as the mother of a child with Down syndrome? I. can't. even. I should clarify: I pass no judgement against people who consider termination or adoption when they get a diagnosis. While I think it's sad for everyone involved, I understand that sometimes it may be better for people who feel from the outset that they lack the capacity to parent a child with complicated needs.  

But that's not what we're talking about here. We're talking about self-absorption on an epic scale. We're talking about abandonment. We're talking about treating both the surrogate and the babies she carried - to borrow a term used by one of the experts interviewed in the press - as commodities that you can return if you don't like the fit or the colour.

I don't even know what to say about people such as these. I can't help but think that the real loser in this whole story is the baby girl; she has a twin brother growing up in another country who she may or may not learn about when she's older, and is stuck with those people for parents.

Wednesday, 30 July 2014

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.

Wednesday, 23 July 2014

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.