Thursday, 23 January 2014

After the MRI

You'll have to excuse me if what follows is incoherent and all over the place. I'm all anxious, hepped up nerves, and yet don't seem to find any energy or concentration for even the simplest tasks at the moment.

The short version is, the MRI didn't go well. Although they didn't find any further anomalies or missing anatomy (a risk with this diagnosis) and in that respect the report was consistent with the u/s last week, little seedling's ventricles have increased in size in a matter of only five days, a rapid progression of her condition that means the 'this might be nothing' scenario is no longer likely in our case. Of course, we still don't know what it actually might be. But suddenly, things like C-section delivery as early as 32 weeks and/or the need for neurosurgery only hours after birth are being discussed...still without any indication of the long-term prognosis (which could, at this stage, include major medical needs and/or developmental delays).

It's all so fucking overwhelming and terrifying. I've gotten so used to all the poking and prodding and invasions of my own body through the course of my life - not only in dealing with loss and infertility, but long before that with years of cancer and orthopaedic treatments. I can undergo whatever unpleasant procedure, for myself, of my own accord, without batting an eyelash. But the thought of my sweet girl having to experience even a moment of pain or suffering, never mind spending the first weeks or months of her life in a NICU, have been keeping me up sobbing every night this week. H says that we need to focus on the here and now, the positives in front of us, and not let our fears run away with us, and he is right. But it's such a struggle right now, every minute of every day. 

When we lost S, one of the only comforts available to me was the knowledge that he had slipped away quietly and peacefully, like a whisper. He didn't suffer, and inside my belly he was so surrounded by love and hope - all we had at the time, before everything went to hell in a hand basket. I'd like to think he felt, exclusively and intensely, that love and hope. There was no time for us to grieve or worry until he was already gone. But now, with his little sister, I can't stop thinking about how hard this all is on her,  the possibility of her having to come so early and be vulnerable and live in a hospital bed; all the pain she might have to experience only moments after birth, and perhaps even for a lifetime. The stress I am placing on her now when my nerves take over. The fear that is was something my crappy body did, the awful, disfigured genetic legacy I seem to pass on to all my offspring.

I've had literally dozens of MRIs in my lifetime and never thought twice about them. But this week, inside the dark narrow tunnel as the magnets whizzed around us and I felt her moving in protest at the weight of the restraint they had placed on my belly, I worried irrationally at the risk this might pose to her. Such a small but significant reminder of how perspective and relative position can change in the blink of an eye. I think of how my own mother coped with seeing her child undergo numerous life-threatening treatments. In my teens though, I was the kid who mysteriously overcame a terminal prognosis in my very aggressive and recurring cancer. The miracle kid.

Not for the first time, I wonder if perhaps asking for more than one miracle in a lifetime is just too much.

It is un-fucking-believable to me that we could overcome years of pain and loss and heartbreak to finally be given hope only to have it cruelly snatched away again for a whole new reason completely unrelated to infertility and loss. All that familiar pain we've become expert at, I know how to deal with it; this feels like terrifyingly new territory. I am among the 1% of women who experience three consecutive miscarriages without a live birth. And now, in another random turn of events, our long-dreamed of miracle baby is facing a condition which affects only 0.1% of babies. Really? Wasn't one of those terrible odds enough for us to deal with, you nasty, bullying universe?!?

I'm angry and sad and terrified at a time when I am supposed to be enjoying the growing life within me and looking forward to a happy future. I can't do this again. I can't lose her too.

I'm also thinking about calling time on this blog, at least for now. I feel so far outside the curve of experience within this community that I'm not sure sharing here offers me much comfort at the moment. And if I'm truly blunt about it, it makes me really uncomfortable to potentially be that person others look to when they think to themselves it could be worse. (And it makes me dislike myself that I even think those things.) But clearly people don't know what to say. My last post, on the diagnosis, has quickly become the third most read post my blog has ever seen. Upwards of 500 views, and yet so few have actually stopped to offer a thought. (And for those of you who have, I continue to say, your love and support right now are so felt and appreciated.) But likewise, I don't feel like I can offer much in the way of support to others right now. All the ugly envy and anger and complete inability to engage with happy stories has resurfaced, and I need to work hard right now, for little seedling's sake, to focus on positive energy. I'll probably check in with any big updates, but right now it's all too much and while in the past this space has been a wonderful outlet for processing my tangled thoughts, I'm not doing a good job of articulating myself anyway. I'd like to think there may be some function, at some point, for this space to offer comfort to other parents who are searching and feeling afraid and alone.

I feel very much alone and so so scared. But H is right; right now I need to concentrate all my energies on hoping for my baby girl, drawing as much love and good energy around her as possible, and relishing her every kick and whirl and her regular growth, which seems unimpeded by her condition. As hard as this is for us, it's she who has the biggest job to do right now, and we need to believe in her and offer her calm and strength. And you all said it best: she is a fighter, our daughter. Our daughter; it still feels like a miracle that I get to say those words.

And so we wait. And we hope. Because there's not much else we can do.
 

Sunday, 19 January 2014

This much I know

Firstly, I want to thank you all for your patience and love and support. The many comments and emails I received this week, even if it was only to say 'thinking of you' have made me feel so cared for, and more importantly, that little seedling has an awful big cheering section in our corner.

I'm sorry if I left you all hanging after my little cri de coeur; I needed time to breath out the fear, breath in hope again and collect my thoughts. I wish I could come here today with more optimistic or conclusive news to share. I really do.

The good news is, little seedling almost certainly does not have Downs syndrome. The bad news is that the reason we can be 99% sure of that is because the doctor found a brain anomaly which is generally inconsistent with Downs. Brain anomaly: the words alone were enough to send us into a fucking unbearable, terrorized tailspin. Usually when you hear those words, I think of them as associated with  another phrase: incompatible with life. I have supported enough other moms through this awful scenario not to let my brain go there. I know too much.

But this time, we are lucky; the condition is not life threatening. Little seedling has been diagnosed with fetal ventriculomegaly, in which the lateral ventricles of the brain are enlarged. The condition effects approximately 1 in 1000 otherwise healthy pregnancies, and there is no known cause (in our case, let's chalk it up to shitty random universe speak: these people haven't had quite enough drama yet in making a baby, and anyway <disinterested shrug>, we know they can take it. Keep piling!). Depending on its progression throughout pregnancy, ventriculomegaly can be linked to a whole range of developmental complications before and after birth or...it might mean nothing. There is so little to go on right now, and we were told the next eight weeks will be crucial.

We have a new plan of action, as this pregnancy is ratcheted up from high to high high risk. Tomorrow, before the first rays of the new day dawn, we will awake and travel more than three hours to a specialist centre where a fetal MRI can be performed. This will, it is hoped, give a clearer picture of what else is going on in little seedling's brain. So far, everything else looks normal, which is a really good sign: it puts us on the 'mild' end of the spectrum for this amorphous diagnosis. In fact, all the other organs, according to the geneticist, looked 'perfect'. If things stay this way, we very likely have nothing to worry about. The ventricles could even shrink back to a normal size and the situation resolve itself before birth. Or they could get worse, in which case our cause for concern would be that much greater.

After the MRI we will be followed with bi-weekly brain scans and anatomy u/s; more regular appointments with the geneticist as well as Dr B. All this monitoring is a double-edged sword though. On the one hand, it is of course a great reassurance to know that little seedling is getting the best possible care (and our care team really is stellar) and that this is being treated as the sensitive and emergent issue that it is. At the same time, there is no denying that, well, each u/s appointment, aside from the thrill of seeing little seedling thriving away in there, is a slow and tortuous build-up to the next scary thing. Given my history, I have so much ultrasound PTSD that I don't sleep for days beforehand, and on the day of I feel like I'm going to puke until the very moment when they place the probe on my belly and I see that comforting and still unbelievable movement. Continuing to do this every other week for the foreseeable future? Demanding and exhausting, to say the least. Really, just at a time when we were beginning to think that the high risk monitoring, all the feelings of pregnancy being more scary than natural for us would be replaced by some semblance of routine (ha!), we're thrown from the proverbial frying pan into the fire. The painful irony of preparing for one piece of bad news only to be blindsided by a potentially dangerous not-that-but-this scenario is, well...it is what it is. Scary, still confusing, tortuous, vague, fucking frustrating, maybe nothing.

As I was swimming through the sea of information, research, prognoses, opinion, struggling to keep my head above water and trying not to swallow big gulps of fear, I clung to these two things: not life threatening, and not life limiting. We know so little else. I could spout all the odds and statistics and case studies that the doctor barraged us with, but the end game is always the same: wait and see. Little seedling could be perfectly unaffected by the condition in the long run or might need medical intervention even before birth. We could be looking at a child with zero special needs or almost undetectable ones or those that require lifelong therapeutic assessment and intervention. So so many uncertainties. The waiting and wondering is a special, harrowing kind of agony.

But this much I know.

We are so so lucky. We are grateful beyond measure for each and every day with this little seedling, who wriggles and squirms with an astonishing aliveness that both keeps H and I in the blessed present and thwarts all attempts on the part of doctors to monitor progress, as though possessing a well developed sense of mischief along with her mother's inherent mistrust of white-coated authority.

She is a feisty, strong-willed, courageous, opinionated, unique, determined and stubborn seedling, this tiny girl of ours.

So yes, H's fatherly instinct and the kindly Austrian doctor's educated guess were correct. We are having a little girl. She'll be a barricade stormer, this one, said H, jesting at her unorthodox trajectory, her unwillingness to either cooperate with expectations or relinquish her claim as anything but the central role in our consciousness.

We're in for a ride. We're not really prepared for it, for any of it. But we'll take it.

And this much I know: we are having a little girl. S will have a little sister. We are so very fortunate to have the little unorthodox family that we do. Every day matters. Nothing is certain. And we couldn't possibly be more in love. Nothing changes that.

Girls with attitude. Source
 

Tuesday, 14 January 2014

On the eve of our genetic anomaly scan

Tomorrow is our long-awaited level II anatomy scan. For the past more-than-a-month I've done a good job of putting it out of mind, because really, there was nothing else to do, and I was damned if I was going to let this worry rob me of the hard won but ever increasing joy and trust we have in this pregnancy.

But for the last few days I have been irritable and sleeping poorly and easy to well up with tears. I chalked it up to ongoing pregnancy weirdness and unprocessed grief (which are doubtless also to blame), but then I remembered...

I keep coming to this space, thinking of things I want to say, to share. I have half-written several posts, but they always languish in my drafts folder. I feel mute in a way, shifting between this wild hopefulness and swinging back around to fear. Fear, irrational as it may seem, that there is something much worse than markers for Downs syndrome. And then, excitement and anticipation that we will find out the sex of our little seedling, who wriggles and somersaults wildly now on a daily basis, as if offering reassurance.

Anxious, fearful, hopeful, excited, confused.

Send some vibes our way tomorrow, won't you friends?

Monday, 6 January 2014

It's not me, it's you

I think I mentioned that the holidays, while largely beautiful and relaxing and contemplative, also brought some moments of bitterness. Courtesy of our own family, in fact.

By way of the briefest of summaries, we've struggled with how to maintain family relationships with some of our relatives over the last 3+ years, when their callous, indifferent or demanding reactions to our loss(es) and experiences of infertility have placed extra strain and hurt on us in a time when instead we should have been seeking support and compassion. I knew that a subsequent pregnancy would compound this tension in so many ways. I've alluded to it as one of the reasons why I was reticent about sharing our exciting (but still scary) news for so long.

The visits with H's family over the last three weeks were intended as a kind of olive branch, a renewed effort on our part to let things go and start afresh (albeit with reduced expectations: you don't always get the family you want, but they're still family. Aren't they?).

It kind of worked out that way, but also, not really very much at all. Two vignettes, brought to you from the suffocating depths of our loving extended family homefires:

1) During a reunion in which H and I were making genuine efforts to let bygones be bygones, on the cusp of a new year with all the symbolism that implied, my mother-in-law wanted to revisit the topic of why we had sent 'hurtful' emails to her, oh...two odd years ago? That's right, apparently we hurt her when (you're gonna love this) we sent an email indicating that while we understood their concern for us, some forms of..ahem, grief management advice (and I'm using this term loosely here) were not welcome. To whit: when, on the first anniversary of S's death, H shared his feelings with his mother, her directive was to 'put it in a drawer and forget about it'. Yes, she referred to my son as an it. Still though, who were we, in our naivety, to imagine that we knew what we needed or to have the audacity to ask for it? That was hurtful to her, and she insisted that new year's day was the time to clear the air. New year or not, I guess a bitch of a mother-in-law tiger doesn't change it's stripes.

2) Lest you think that my own side of the family is immune from such gaffs in grieving etiquette (is there a manual for this? Because there should be), I present my sister. Things have not been great between us since, among other things, she blandly stated, 'Why should I grieve for your son? I didn't know him'. Since, on my first meeting with her after my loss - when I also met her son born a mere few days after S should have been - she indicated that she saw no reason to be sensitive in proffering her new babe because 'My first priority is my baby, and if you can't deal with that it's your problem'. Yeah, she is sensitivity personified, that woman. I'm not actually sure what her deal is, given that she had the same happy childhood as I. Anyway, she wanted the holidays to be a time when to reach out to those she so evidently loves and cares for, with the message that 'Family is so important, and as a parent this becomes all the more true when you have kids of your own'. She is extremely family oriented. Obviously. Here's what I would do with her version of 'family values'. Take them and delete, delete, delete not suitable for some audiences!. Just wait 'til she finds out about the little seedling. She's the type who will suddenly have all the love in the world for us.

As I am sure you are all too aware - though I admit to being deeply envious of some of you who seem to have such warm, understanding support around you - dealing with other people, and with community life in general, can be one of the hardest things about being in this already crappy ALI club.

There have been some break ups. The stupidity, insensitivity or just plain careless, this-is-no-big-deal-at-least-it-wasn't-a-real-baby attitudes to my grief on the parts of some people were enough to make me re-evaluate a few 'friend'ships. (This is to say nothing of the people who dumped us, initially on the pretense of 'giving us space', but later because grief is fucking hard, ugly work and they weren't up to the task; or so I can assume. Most just sort of disappeared, never proffering even a lame excuse, and never to return.) I give people lots of chances. If you've hurt me, I always try to talk openly, honestly and calmly about how your behaviour makes me feel (hence the 'hurtful' email to my mother-in-law), leaving a chance to clear the air. However, if your response to those attempts proves even more self-absorbed, sometimes you gotta know when to throw in the towel, if only for self-preservation.

But these people are my relatives. Unfortunately, things aren't so simple here. I can't break up with them. So I come here to vent, to shake a raging fist at the universe for bestowing me with such a frankly useless support system, and to beg your patience with me as I do.

And I know what they say about relationships being hard work, and how it takes two, and yadda, yadda, yadda. That's all totally true. I've worked hard over the past few years.

But still, I'm pretty sure it's not me. It's them.

The ties that bind. Like, literally. Source.










If you've faced similar insensitivities, what do you do to manage? How do you learn to bite your tongue, turn the other cheek, and keep that pasted-on smile upturned?

Wednesday, 1 January 2014

Happy New Year: Google + made me cry

I've never been big on lavish New Years celebrations. When I was young, and liked to pretend I was more seasoned than my years, I was fond of this one quote (attributed to Frank Sinatra, I think?): New Years Eve is for amateurs. I guess I took it to mean that you only got worked up about stuff like that if you were too naive to really know how to live your life the other 364 days of the year. You don't need an excuse (least of all one born of chronology) for a party.

Later on, the very idea that a flip of the calendar could be anything other than a random date change began to feel like yet another bitter joke in life's plan for us. Losing S was (and continues to be) the most difficult, painful thing I have ever experienced. I remember December 31st, 2010, after surviving our first holidays as childless parents, H and I looking at each other with determination as we stated: this year will be our year. Things have to get better. It wasn't and they didn't. But in each year that followed, we dutifully repeated the mantra while our determination became more grim and our conviction more shaky. The closing weeks of 2011 - during which we continued to mourn, and adjust to that feeling of being invisible in a world that refused to acknowledge our son or the pain that came with our childless status - brought our second pregnancy loss. 2012 brought serious illness for H, months of testing that confirmed (without explanation) our subfertile status thankyouverymuch, a surprise conception in August followed with a by-then unsurprising miscarriage a week later, and by year's end, the darkest, most all-consuming depression I have ever experienced.

Of course there were lots of happier moments in there too; laughter and adventure and flickers of hope. It's just that in the context of those years, none of that stands out in memory as starkly as the sea of crap through which we waded for so long. And then, while attempting to pull myself up for air, I sat down and wrote this. That simple act of writing not only led me to all of you - all your support and encouragement and compassion and tears and anger and humour and understanding - but helped me to see those flickers of hope for what they were, to somehow more easily embrace them when they came along.

And it occurs to me that this is what movement, healing, change, growth are all about; a series of tiny things, none of which seem particularly momentous at the time (and almost certainly accompanied by laughter and tears in equal measure), that once accumulated can lead us to the most profound realizations and discoveries. Good or bad, you never know what's around the next corner. And I for one can think of no better reason for a party, whatever form that takes. Maybe it's quiet contemplation. Maybe it's filled with angst and red wine and self-soothing. Maybe it's more conventionally recognizable as a party, time spent laughing with the kind of family we all long to have and hold.

But the strength and hope and perseverance and giving-the-middle-finger to an unfair, indifferent universe? It's all worth celebrating.


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


And that brings me to Google +.

Urging me to click on the highlighted little notification button when I logged onto blogger today, Google + announced that, thanks to their annoyingly titled new feature Auto Awesome, they had a gift waiting for me.

(As an aside, I'm pretty hopeless when it comes to techy stuff. I don't really have a clue what the purpose of Google + actually is. If you've ever 'added me to your circle' on Google + and I haven't reciprocated, it's because a) I don't know how and b) even if I did, I wouldn't see the point. I'm not being rude, I swear! I want to be friends! I am just not at all social media-y. I actually kind of loathe that stuff. There is nothing you can say to convince me that it's not kind of...well, superficial and narcissistic, instead of the cure for all ills of postmodern ennui from which we suffer, as it is too often touted to be. And yes, I am fully aware of the irony of my recording that statement on a blog. I never claimed to be consistent.)

Anyway, it seems Auto Awesome was so sweet as to prepare a 'personalized' 2013 Movie! for me, based on all the albums I have (apparently? I'm not techy, remember?) created while keeping this here blog.

Obnoxious, intrusive, commercial, impersonal, marketing ploy, right?

Right. Except that it made me cry.

It started off with those beautiful shots of the snowy day I sat down to start this blog. It continued on to that whimsical memory tree I found one day while practicing laughter yoga and missing my son, then went on to some of the photos we took while marking his third birthday. It threw in several lovely slides of our glorious holiday, as well as the disappointment that followed. A beautiful hike which made me again feel close to S, an impromptu, pre-new-job trip to France, a hot, boozy, day of dancing at Notting Hill Carnival. Next was a shot of the candles lit to mark Pregnancy and Infant Loss Remembrance Day and all the tiny lives that never got to live. And the slideshow concluded (as though Auto Awesome somehow knew what it was looking at?), with the most amazing sight we've seen all year for a very very long time: that little grey blob, beating, growing, living. (Not that we dared hope we'd get this far at the time.) And then, blame pregnancy hormones I teared up.

And there you have it. Happy/sad/scary/fun all mixed up messily together. A year in the life, as well as in this blog.

Thanks for being here, through it all.