A Matter of Life or… Life

You know how sometimes you’re scared in the power of your own thoughts and words? You don’t? How about that feeling that if you think too positively, and god forbid, you ever talk too positively that sod’s law will intervene and bite you on the arse and make you look like a fool? That by uttering these thoughts you were near as damn it going to make the exact opposite happen?! Take my post on My Hump, My Hump, My Lovely Baby Bump. I dared let myself go for a minute, I threw caution to the wind. But I may have well as pissed in it, because the wind changed direction and came back towards me.

My usual method of preventing myself from being overly positive is the automatic disclaimers I attach to each sentence. Maybe you’ll recognise them. The ‘all being wells’, ‘if we get that fars’. In Rufus’s early days I learnt to attach them to everything I said or wrote about him, too many times had I been disappointed by the power of my thoughts. And with this pregnancy, I’d felt pragmatic at the start, covering my arse just in case. Wolf and I had had the chats about what we should do if scenario a occurred, or situation b arose. We were pregnant, it was a surprise, let’s not invest too much when we’ve still got a couple of suitcases of pain from the first time round that we’re scared to open and put away the contents. Let’s leave them on the carousel. Can we pretend they’re not ours? Someone will dispose of them eventually, right?

But then case c came up. We’d been having scans. We’d refused invasive tests because the results would be too inconclusive. And this was perhaps going to be our time. A little sticky plaster over some of the scratches. Everyone started to believe, hope was rising to the surface. I was becoming a little smug. Then there it was, things were different. The baby is big, it has plenty of fluid. But can you wait in the counselling room a minute? A photocopied line drawing of the kidneys come in on top of some scan pictures. The door is closed. Oh fuck.

I’m now going to attempt to explain how Wolf and I heard the next bit, individually but simultaneously. Everything looks good with this baby. I CAN SEE THE DRAWING OF KIDNEYS, SHIT. It is big and has plenty of fluid. GET ON WITH WHAT’S WRONG WITH THE KIDNEYS. Under normal circumstances we wouldn’t be worried about this, and would believe it would either resolve itself or be treatable with antibiotics postnatally. BLAH BLAH, THE KIDNEYS ARE WRONG AGAIN. IT’S THE KIDNEYS. IT’S THE KIDNEYS. But given your history with Rufus we feel we need to be more cautious. WE KNOW, IT’S THE KIDNEYS. So we need to speak to the geneticist AND THE RENAL CONSULTANT, IT’S THE KIDNEYS!!! and evaluate what to do. TELL US WHAT TO DO, PLEASE!!

They left, we panic. How? Why? It makes no sense. We’d prepared ourselves for scenario a) it would be the same as Rufus or situation b) it would be different and all would be well. Where did case c come from, the c**t. And case c goes like this. The geneticist thinks it’s circumstantial. The renal consultant on reviewing my ‘bulky’ placenta, higher volumes of amniotic fluid that it would be more aligned to regular CNS, but that would be REALLY weird. The obstetrician is dumbfounded. We all laugh that Rufus is one of a kind. But I could cope with another Rufus, chuffing hard work, but I know the results. Where does this leave us? An amniocentesis. And then what? We know what.

But I’m scared of writing about this. Some zealot for pro life or pro choice will take offence. But I can only portray this in the way I understand it right now. And judgement before you’re confronted with a caseload like ours has got to be mere conjecture. Here is how I’m dealing with it, *bum clenches with anxiety*. Life sometimes feels greater than me, us. The crushing weight of expectations and decision making left to novices like us.

I have hope. I’ve got to, until they tell me there’s none, I’ll scrape some from the soles of my shoes. It’s been robbed from me before, but I’ve nicked a bit back, and it’s seen me through (see the frog of optimism in An Old Story). And I try to avoid thinking of how Life is unfair, that it’s taking a giant crap on us. All that woe is me business. Not because I don’t think those things, because that would require me to acquire a zen like sense of calm. And for those of you that know me, err hello, and those of you that don’t, I’m not above a good strop. Because I give myself props for what I’m grateful for;

Wolf.
The boy.
Family.

And extended family. And friends. My life is full of good things. Good people. And we have a nice home. And I have a good job. And we laugh a lot. Bet you’re thinking I’m a bit of a smug tw*t right now. Because I am, because it helps. But it’s the importance of people above all else that shape my world.

So when case c came up, and we have yet to know the shape of case c fully, all it’s evidence concluded and presented, this is what I thought of. There’s a platitude that really grates with me. Not just because of it’s religious bent (sorry for offending more readers). But it’s ‘God choses special parents for special children’. Well, sod off God. Because that’s hard work, and you know, despite all my meanderings about all I’m grateful for, that’s not on. I’m not special, I just do the best I can. And my children are lucky, because I do the best I can. But will I be doing the best I can if I have to split this two ways? Am I putting my children’s lives first? Will they be cared for enough if they both require an additional level of support. I know where you think I’m going with this now, but wait.

During a very tearful conversation with my Dad last night (sorry to let the cat out about the man tears, Dad) he said something very poignant. You can ruminate and worry about what you’re going to do based on the test results being this, that or the other. But when it comes down to it, it won’t be a conscious decision. You’ll just know. Because they’ll be an overriding feeling, from somewhere.

And here’s my overriding thought. We have been offered a late termination, after the point of viability, most likely based on evidence that we will never truly know is conclusive until the baby is in the outside world. But if the baby is born, at whatever point, and they discover the problem then, and can clarify it with testing, are they going to offer to terminate it then? No? Exactly. Because even if it is a positive, who knows how that individual child will do? There are no absolutes in Life. A child is not just it’s illness or symptoms. But this is our case c. And this is what I think. And I would never, ever judge someone else’s overriding thought. Who knows what their case c is? Or situation a. Or scenario b.

I held my brand new baby nephew yesterday, and I was flooded with love for him. So beautiful and perfect. You know when I say I try not to think Life is unfair to us, I don’t always. And I would never wish this on anyone else, because that’s not just is it? But I’ll grieve a little bit that ours isn’t burdened by this. Because Life is bigger than us.

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6 thoughts on “A Matter of Life or… Life

  1. A really tough post to write no doubt. No advice, as you said- without being in this situation you can’t possibly know what you’d do- just wanted to offer hugs and more hugs really. X x

  2. I can’t even begin to imagine how things are for you at this moment in time but you look like you have a fantastic family and Rufus is a handsome little fella. I think everyone with children that have extra needs like ours has felt at one time or another that life dumps on them from a great height and you have every right to feel smug about what you have got. I do anything to help me get through the day because I have to.
    I hope that you get some answers soon and my thoughts and well wishes are with you all.

  3. I wish I had some advice to give you to make this feel a bit easier for you. But i don’t so all i can do it send a hug & try to understand what you are going through as best i can xx

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