The lessons she teaches: on time #WDSD15

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

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

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

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

And then I look at her.

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

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

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

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

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

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

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

#Microblog Mondays: risk versus possibility

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

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

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

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

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

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

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

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

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

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.

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!

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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.

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.

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.

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

3/21

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

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

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

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

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

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

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

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

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

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

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

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 On World Down syndrome Day:

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

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

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

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

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

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

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

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

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

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

Do not underestimate those around you.

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

Encourage. Include. Involve. Accept.

You can find the original post in its entirety here. 

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

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

What happened in between

Thank you for all your beautiful comments on my last post; many brought tears to my eyes, and all gave me courage and strength and further insight into just how much I have to be appreciative of in these surreal and magical days in which we find ourselves. 28w5d here; so much is going on around us that I have to make an effort to focus on what’s going on inside me (both physically and philosophically), and to stay in this place of quiet bliss that is the third trimester of pregnancy and the wondrous growth of our little seedling. And on that score, things may even be settling a bit.

I know I have always been a staunch resistor of that normative trope that is the chronological timeline so beloved of infertility blogs, but in the interest of filling you in on some of the chaotic, complicated background to the here and now, it seems the least strenuous option...

Week 20 – Doctors rule out the possibility of Down syndrome after discovering in little seedling’s brain that the lateral ventricles are enlarged, an amorphous condition known as ventriculomegaly, which can be linked to a range of developmental delays and medical needs. Totally left field. We are confused and terrified. We’d happily take the knowable issue of Down syndrome over this vague diagnosis.

Week 21 – We are sent to the big city hospital for a fetal MRI with one of the country’s top specialists (who will later, for reasons to become apparent, become known as the Dickhead Doctor). This test shows a rapid increase in the levels of fluid accumulating in little seedlings ventricles, suggesting ‘a dynamic process of the condition I have never come across’. Dickhead doctor also says there are indicators of hydrops fetalis. Both conditions possibly fatal. The possibility of (need for?) termination is raised. Total devastation, rage, more terror.

Back home that weekend, we rush to the hospital after I wake up gushing red blood. Sure she is dying. Examinations reveal placental hematoma; not in any way life threatening. Unless you count the further palpitations that my already over-stretched heart cannot really take right now. Return home to a week of bedrest.     

Week 22 – The fetal medicine radiologist we’ve been seeing up until now (and who we’ve come to love) reviews the report sent by Dickhead Doctor and disagrees with his findings. Firstly, no evidence of hydrops fetalis, but rather a mild thickening of the nuchal fold which she sees as no cause for serious concern. Secondly and more importantly, although the ventricles remain enlarged, she doesn’t think there is anything to support the idea of a rapid increase; MRI and u/s will always have discrepancies in measurement, and in this instance, each method used a different side of the brain to reach their findings, reflecting not increase but asymmetry in the measurement of each ventricle. Obviously a fact that Dickhead Doctor, with all his years of expertise, should have also know and offered, instead of regaling us with horror stories.

But relief if momentary; u/s with Lovely Doctor finds that the connective tissue at the centre of the corpus callosum (joining the two hemispheres of the brain) is not altogether absent but far too thin to support normal brain function. Her liver is also slightly enlarged. Nothing for it but – yes, again – to wait.

Week 24 – Our next bi-weekly monitoring appointment is a mixed bag. Firstly, it appears that the enlargement of the ventricles and issues with her liver have stabilised; YAY! Then, Lovely Doctor finds another, newer anomaly; little seedling is diagnosed with duodenal atresia, a blockage of the intestine that will require corrective surgery at birth. BOO! This discovery leads our team to reconsider the initial probably-not-Down-syndrome-but-something-else prognosis. Now we’re at probably-Down-syndrome-and-something-else. This brings with it a strange kind of relief, since Down as an explanation for any of these other anomalies is far less scary (or potentially life threatening) than idiopathic diagnoses would have been.

In happier news, we also learn at this u/s that little seedling has ‘a mop of hair’, and get all the more excited thinking about who she is, what she’ll look like and who she'll become. One thing's for sure, life will never be dull with her along for the ride. On the train ride home, she fortuitously kicks me several times vigorously, allowing H his first real feel of her presence. He melts.

Week 25 – Nothing in particular happens. Normal week! No problems! Heady days!

Week 26 – Our little seedling is making miraculous progress in leaps and bounds. Not only are no new anomalies discovered (what feels like a first for us in this whole process), but there are astonishing findings in her neurodevelopment: the ventricles are not only stable this time, but have slightly reduced in size, and the connective tissue of the corpus callosum has thickened to the point where they think it probably won’t be an issue. Lovely Doctor says she is impressed by little seedling’s fighting spirit and ability to turn these conditions around, the likes of which she has never seen. Amazement, relief and pride in our courageous daughter. We feel positively jubilant.

We are also told that my amniotic fluid levels are slightly high, a common side effect of the duodenal atresia, since babies with this condition can’t make the swallowing movements required that normally keep fluid levels in check. Higher fluid levels carry a risk of preterm labour, and we may need to consider an amniotic reduction procedure at some point. Super close monitoring is not likely to end any time soon. Sigh.

Week 28 – Status quo! No changes, everything continues to look good. We get to see up close that huge crop of fluffy duckling hair she’s sporting. Lovely Doctor makes the rather obvious comment that ‘12 weeks is the longest now you’ll be waiting for this little girl’, and I am suddenly, inexplicably stunned. It’s really real.

OK, because I am overly verbose and apparently incapable of abandoning narrative style when I write that wasn’t actually the most effective use of bullet-point-style chronology, was it? So for anyone with blog reading ADHD, here’s the summary: we still don’t have an official diagnosis because we refused the invasive testing, but expect little seedling to be born with Down syndrome, and are grateful and excited to start the adventure of life with this amazing, unique baby girl. We know because of her duodenal atresia she’ll require surgical intervention in the hours after birth, and will have a NICU stay of (hopefully not more than) 3-4 weeks to get her healed and feeding normally. It now (fingers crossed) looks as though the issues with ventriculomegaly and corpus callosum will probably not require any intervention beyond occasional monitoring. <Phew!> Somehow abdominal surgery sounds so much less scary and overwhelming than neurosurgery.

Basically, we’re just rolling with the punches and taking things one day at a time.  It's been an insane amount to process. At the same time, we have so many reasons to be optimistic about little seedling’s future, not least her evidently badass baby nature. H’s words really were prophetic: she's a little barricade stormer.

With all this monitoring, (and because it seems Lovely Doctor is a sucker for a photogenic fetus) I am also pretty sure she may already be one of THE most photographed children in the history of the British Isles. To that effect, I leave you with one of my favourite recent images, highlighting her already chubby cheeks and pouty lips at just 24 weeks.

One beautiful baby. Not that I'm biased or anything.

How could you not love that face?

Not the worst news

Just when you think you're safely out of the danger zone (if such a thing exists). Just when we finally began allowing ourselves to feel really hopeful and let unadulterated happiness in. Just when we were starting to breath again.

We got the bloodwork results from our combined NT screening (after the nuchal fold itself measuring perfectly) and they show an extremely high risk of Down's syndrome; 1:35. Given my age, I suppose we knew there was a heightened risk, but it still broke me to see H, overcome with tears of fear and exhaustion, look at me and say 'I knew we shouldn't have let ourselves hope'.  

They asked us to come in right away to discuss things with the screening midwife. When we were ushered into one of those 'nice' hospital rooms with the sofas and tea making facilities and boxes of tissues, I think both H and I were petrified; those are the kinds of places you go to hear the Very Bad News. The specialist midwife was lovely and patient and answered all of our questions. They are not at this point worried about any other, more dangerous trisomies, which should already have been picked up on u/s. We had an appointment with our Maternal Fetal Medicine specialist booked for Friday anyway, so after this encounter it was good to have the extra time for discussion and to go over any questions we still had. Not that we managed to really be coherent enough to compose any, or focussed enough to really take in the answers that were proffered. We did, however, get a completely unsolicited look at the little seedling again; we weren't expecting this, having just had a scan a week earlier, but Dr B offered and who were we to decline? (Have I mentioned that I'm a little bit in love with our doctor?) And there s/he was, bouncing around without a care in the world, looking pumped up on too much caffeine or sugary cereal for all the vigorous jumping around it was doing. This time we got to hear the heartbeat too. Amazing. This is one strong baby; I just feel that.

It's been a very tumultuous few days. I've gone from devastated and terrified that any heightened risk factors might put this pregnancy in jeopardy, to a sense of 'ok, we can do this', to utter confusion over what I can, should, might be feeling.

Part of that has to do with all the what next? issues we now have to consider. We were offered further screening; we're too late in the pregnancy for a CVS but our options now include an amniocentesis and level two genetic anomaly scan. (And before anyone suggests it, no, the MaterniT21 test is not available here in the UK, even privately. From a bioethical perspective - to do more with the history of scandal surrounding the company that holds the patent rather than the test per se - I am not sure how we'd feel about it anyway.)

Given our history of loss and how hard we've struggled to get here, not to mention how protective we feel of the little seedling, it would feel crazy to undergo any testing that puts us at risk of miscarriage, no matter how small. So I don't think we'll pursue an amnio. We can be booked in for a high level genetic scan carried out by a specialist (rather than just a technician) at 19 weeks. This might detect any 'soft markers' for Down's, but like the combined screening of NT scan and bloodwork, it can give you only a probability; it's not a diagnostic test.

Even if we got a conclusive answer from an amnio, we wouldn't consider a termination because of a diagnosis of Down's syndrome. It couldn't possibly make us love our baby any less, and really, as two highly educated people without any other children to demand our time and attention, we are pretty well placed to cope with such an eventuality and give our little seedling the best possible upbringing regardless of its level of ability. We've fought too hard to get here. So the invasive, risky procedures seem pointless, except insofar as perhaps preparing us for that eventuality.

Of course, there's a big part of me that wants to crumple up on the floor and howl, to indulge in all kinds of I knew it thinking about how we were never going to be allowed the true, simple joys of pregnancy without fear and complication. If this was always going to be true anyway, given our history, it's now that much moreso. No stress-free, happy pregnancy here. But actually, I don't want to come across all Why me?, because really, why not me? I know I'm no one special. Although it can be galling to watch how some people (usually the nasty ones, or so it seems) can breeze through life unscathed and blissfully unaware of the harsher difficulties that some of us face in more than our fair share, the truth is, people get shitty breaks all the time. This is far from the worst among them.

For months, years, I lamented and implored the fertility gods to just allow us one chance at a healthy, happy, living baby, and nothing has fundamentally changed in that. Our little seedling is still that chance. We're still lucky beyond measure, and best of all, we know it.

I'm still processing all this, and don't yet know what I think or feel, but one thing is true: this is not the worst news. Even if it may not look as I expected it to look when I have often repeated that simple, comforting incantation, somehow I still have to believe that everything is going to be alright. Screw it; I'm going to keep hoping.