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.