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?

The flood and after

The long, grey winter that is finally, slowly receding from these shores was the wettest since 1766, so they say. No beautiful snow for us this year (though we’re now too far south to have enjoyed it anyway). Temperatures were relatively warm, but for weeks on end, there was nothing more than sheets of downpour seemingly intent on scarring the landscape. Gale force winds. Flooding of biblical proportions. Destructive deluge. Many people lost power and homes and livelihoods. Entire regions of the country were isolated by caved in roads and rail lines.

We were always just on the edge of it. That lovely park just two doors from our flat? It was submerged, cut off, its beautiful lawns becoming a sodden, grey mess of clay, its gates locked against visitors for weeks on end. The pools of water crept ever closer to our door, but we were spared.

We couldn’t take our usual strolls or shortcuts to work through the park (or anywhere). It became an epic task to get to the nearest supermarkets (we don’t own a car, and even those accessible by motor vehicle experienced flooding and periodically had to shut their doors), so we used creative means to clear out the cupboards, and then ate a lot of crap take-away when we had exhausted that supply. We hibernated and instead occupied ourselves with all the simple pleasures one is supposed to enjoy as the rains pummel the windows from the leaden sky, while you watch the drops trickle down the glass, tucked up cosy inside and grateful for your shelter.

We drank cups of tea and hot cocoa and re-visited long abandoned projects of writing and artwork and compiling music playlists. H stuck in and worked like a demon on his thesis, now only weeks from completion. We became avid Olympics watchers and mock rivals as we cheered our respective teams, the apex of which was a face-off between the Austrian and Canadian men’s hockey teams on Valentine’s Day. I made multi-themed red and white, heart-shaped cookies incorporating a kind of amalgam of the Austrian and Canadian flags – the perfect emblem of trans-cultural love rather than rivalry. (H, being a realist, gamely cheered Canada to their 6-0 victory. Naturally.)

And we continued to indulge in our relish of this miraculous pregnancy, trying to enjoy what one beautiful friend (a fellow babyloss mom) called ‘all the earthy loveliness of being pregnant in the winter’.  We watched my belly expand. I began to strain under the last of my winter coats that still fit around my increasing girth, and was happy to notice when the chill wind was able to make its way up to my gradually more exposed baby bump.  H felt kicks for the first time. We discussed and contemplated the weighty decision of names for this little girl. We continued with our nightly ritual of reading up on little seedling’s development, and added a few more little traditions to the routine. As the storms raged, we cuddled and loved like crazy on our feisty miracle girl.

And we waited for each new monitoring appointment, (after that dreadful MRI) with a strange and tenuous mixture of anxiety and hope. The doctors continued to locate anomalies in her development, so that the list grew longer and the appointments an exercise in parental torture. And she continued to surprise and delight; not only us but her medical team. She grew and thrived. She kicked and wriggled. She faced each and every challenge with a gutsy defiance.

All those things, she did and she does.

And slowly, the clouds began to clear and the spring is upon us, once again.

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Last week, I walked out the door to head to work, and the gate to the park was, astonishingly, cast open. The waters that once threatened to submerge us had receded. And as I strolled past that beautiful but for now scarred scenery, suddenly they caught my eye: daffodils, snowdrops and crocuses. Bright splashes of purple and yellow amid the still mucky soil.

Invincible spring

They survived. How did they survive?  I thought they would cower from the gale force, wither in the face of winter’s ferocity. I thought that they would rot and die beneath the weight of water that submerged them for so long under merciless torrents. 

I was wrong. Spring is invincible.

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When I first left this space to retreat into my own little world it was in a burst of anger and injustice driven by fear and sadness.  But while I was there, in my own little world, something happened: life found me. When I stopped thinking about what others had, and instead looked around at the space I occupied, I realized it’s pretty damned awesome.  Are the challenges ahead still scary and overwhelming? Totally. We are not out of the woods, and little seedling still has a lot to battle against. But she is so strong, this little fighter of ours, and already she is teaching us so much. About the beauty and power of singularity. About miracles. About being in the present.  About the joy of the unexpected. This is our journey and although it may not look as we imagined it to, we are blessed beyond measure to be here, taking it. After all that we lost, after how hardened I became, I never imagined getting here.  Getting her, or the intensity of the feelings that would accompany the experience.  

After meeting H, during those first tentative talks about The Future and family and all that we wanted, I remember having the distinct feeling that what I wanted more than anything was to grow the intensity of love and discovery and goodness that we shared. To physically expand it, to extend it to another human being. I was never one of those ‘all I’ve ever wanted is to be a mother’ people. H made me want that. S made me a mother. And after a period of such darkness it feels...unfathomable, actually; to be reminded of all that goodness, all that wonder, all that belief in the promise of possibility that we once held and can hold again. Perhaps you can understand when I say that in the midst of the fear and the challenges, there is laughter and joy.

Right now, it’s a joy I find difficult to share with a computer screen. Life feels full. And so I may continue to post only sporadically for the time being. Selfishly, I still want and need the incredible waves of support that you all have and continue to offer during these scary, uncertain times. It is wonderful to have a sense of that huge, global cheering section little seedling has backing her. Selflessly, I think I want to keep recording all the twists and turns because I truly believe we will get our positive outcome and I want to be able to share that hope with others who may be facing these realities somewhere down the road, or right now, silently and alone. 

So posting will continue, however irregularly, as and when I find time for it. And I hope you’ll continue following, as I want to continue following and cheering all of you. You are an amazing bunch whose compassion, love and respect continue to dispel my sometimes pessimistic beliefs in human kindness.

In this very moment though, I think I’ll go take this little girl who is so vigorously kicking me in the ribs out for a stroll. Maybe we’ll walk past the crocuses and breathe the spring air.