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Be careful what you wish for.

Or, on how I feel like a total b!tch for ever, even briefly, wishing bad fortune on another.

Let me explain.

I don’t believe in magical thinking, really I don’t.

But.

A while back, I was reading the story of a woman on her first cycle of trying to conceive. In the manner of many carefree fertile types, her writing was chock full of optimistic references to the planned nursery, baby clothes, names etc etc. All the stuff that gets taken for granted by so many women, because for so many women the act of trying to get pregnant actually leads to pregnancy. Often quickly. In their bedroom. Without thousands of dollars in expense or, g-d forbid, having anybody other than their spouse put anything remotely near their cervix. Let alone a catheter right through it. Or blood test after blood test, injections, inseminations, ultrasounds, public exposure of one’s genitals, living life via reference to ‘cycle day’, loss and heartache.

It kind of rankled that this woman was taking her fertility for granted, even though she had every right to. After all, my experience, like those of most women in this community is (whilst more common that publicly acknowledged) not how the majority of people make their babies. It seems surreal, but for many, many couples their high school biology teachers were right.

To be brutally honest, it pissed me off.

Rather than doing the smart thing and stopping reading, I was drawn to her journal like onlookers to a particularly nasty car crash. I just had to keep picking at the scab that remains over the scar infertility and loss leaves, even after finally having children.

Pick. Talk of baby names.

Pick. Talk of which room the nursery will be.

Pick. Talk of gender. Talk of her husband as a father. Talk of lots of baby related stuff.

…….and she’d only JUST started trying….

and, of course, wouldn’t you know it but bammo, pregnant. First bloody go. Talk about bile in the back of the throat.

PIck. Pick. Bloody PICK.

Here is the bit I’m so dreadfully ashamed of.

My first reaction was to wish that something bad would happen, just so this woman would learn that you shouldn’t assume. That life isn’t that easy for some of us. That it’s somehow wrong to buy baby clothes before you’re even pregnant. That many of us suffer loss and heartache after heartache and that it isn’t always as easy as she’d had it.

Not nice, huh?

Then I stopped reading, because I was ashamed of just how uncharitably I reacted to the happy news of a stranger.

Recently, I started reading again.

She lost the baby, late in the second trimester.

Now, intellectually, I know that nothing I thought had anything to do with it, but boy do I feel like shit about even ever thinking it. Because now that it’s happened and this poor woman has had her world turned upside down I am mortified that I would ever ever think anybody deserved loss and pain like that, just because they took their fertility for granted.

Sigh. Not nice at all.

Blue, baby, blue.

I’m really a miserable sod at the best of times, but lately I’ve been excelling myself.

Being all mature and therefore taking full responsibility for my actions, I’m going to blame first and foremost the progesterone and throw in a side-serving of due date for PBWCLEW, one presumably failed IVF, and the fact that I really couldn’t give a toss about work right now.

My wonderful, always wonderful, and incredibly patient husband did his best to communicate.

‘Darling, why so blue this time?’ he asked.

‘THIS time?’ I shrieked, in my best fish-wife tones.

He attempted a tactful correction.

‘Why do I have a blue baby?’

I replied ‘It’s usually an absence of respiration, dear heart. Babies should be pink, ideally speaking. But we don’t have one, remember?’

I’m normally less, well, bitter than this.

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Wanted: some fizz.

I’m feeling a little flat today.

I’ve ovulated ridiculously early for me (CD 17 or so), thanks to my trusty old friend, Clomid.

But I smelt a rat.

You see, the last two cycles, my OPK’s haven’t technically turned positive. There was the appearance of a second line, sure, but it’s never been as dark as the control. And it’s taken well over the advised reading time of 10 minutes to show up. That isn’t what used to happen, folks. It also means I take far too long in the bathroom since I don’t like to run around the house with an item covered with my wee. Unsanitary.

So, anyway, something else is a bit a bit wonky reproductively.

At this point I think that I need to digress and resort to vehicular analogy to explain the full depth of ‘wonky’.

Were I a car, pre-PBWCLEW I was the beat up old thing that had mismatched paint and one door taped on that thought twice about starting, but always came through in the end and got you to your destination (albeit somewhat late). Now I’m the heap sitting in the wreckers yard in which it is often possible to get one component or another working, but never the whole thing at once.

Dear reader, to take the analogy too far, I think my drive train has packed it in and it sounds expensive. The mechanic is making that noise.

So Close….

Reading http://imaginingourselves.imow.org/pb/Story.aspx?id=1078&lang=1&g=0 this morning made me cry.

It’s excerpts from a book written by the lovely Tertia (of So Close fame, the link to her blog is on the right). I’m going to quote just one of them:

Brave? I don’t know. Stubborn? Maybe. Determined? Probably. As terrifying as it is to go through yet another fertility treatment, the alternative is far more frightening to me. The alternative is not trying and therefore facing the possibility of a childless future. And that, for me, is terrifying.

I can feel myself getting more and more insular, more obsessed. I can think of nothing else. The yearning for a child is consuming me; it is all I do, all I think about. Suddenly the big world outside is fraught with potential for hurt – pregnant women and babies are everywhere, all daily reminders of my failing.

The only time I feel even remotely happy is when I’m on the Internet, winding my way through the cyber world. I find solace and information in the computer. I spend hours online, searching, researching, looking for stories, miracles or miracle cures, for stories of hope and inspiration.

Infertility bulletin boards are the coffee shops of cyber space. It’s a place where you can hang out with like-minded people, people in the same boat as you. These people get where you’re at. They can relate. They understand your pain.

My dad urges me, gently, to see a psychologist. But what use is talking? Talking won’t change reality. I’ll walk into the appointment barren, I’ll leave barren. What’s the point? I don’t want to see anyone; in fact, I don’t want to leave my house. I want to stay inside and never come out.

I’ve been thinking of buying this book for a while, but perhaps I’d better wait until I’ve ended my own infertility journey (with or without children).

I admit that I don’t quite understand my own feelings, but for some reason, this text is all just too close to home, whilst at the same time being about a completely different experience. My baby never even got to be born, I haven’t even hit my first IVF, but I understand the ache to have a living, healthy child and how it is impossible NOT to keep trying. Even if my psyche is taking a severe beating.

When normal just can’t be.

I’ve been in a funk since approximately 5pm yesterday. That’s 24 whole hours of self indulgent weeping and “I can’t go on with this” palaver that my darling husband is going to have to add to his list of grievances when he finally snaps and gives me the old heave-ho (I *think* I’m joking on that point, but I’m really pushing the man lately).

The chromosomes for PBWCLEW came back. Normal.

Clearly the baby was, most emphatically, not normal. The only conclusion I can draw with my I’m-skating-awfully-close-to-clinical-depression-and-only-do-negative-cognition brain is the following.

I turned a normal baby with normal DNA into one missing the most critical part of it’s central nervous system. Into the kind of baby that is still parts of folklore and superstition in parts of the world. Into a baby that still has the word “monster” attached to the definition in some sources.

I dread to think what that says about me….I think a date with Zoloft is looking more and more like a good thing to do. I haven’t mentioned the eating part till now, but that’s not going so well, I’m not sleeping and I’m full of self recrimination and negative thoughts. At least I still have insight, mercifully, that I’m behaving like a total twat….

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PBWCLEW

Ok, so I’m thinking lots of PBWCLEW thoughts today……

God, it’s sad.

I still have these moments where I just can’t believe it actually happened.

Confession…

So….err…..um I have a confession to make.

I’m bleeding (just a bit! I promise).

I know this can’t be a period, it’s too soon for that.

Knowing my screwy body, I suspect I’m just shedding whatever whispers of endometrium that weren’t scraped out 2 weeks ago.

Things that make you go hmmmmm

Sooooo….

The genetic counselling was interesting, to say the least.

Without more specific information from our baby (sigh), and probably even WITH it, THIS is how the story goes….

The causes of NTD’s (neural tube defects, i.e. the tube that becomes the brain and spinal cord) are multifactorial.

That’s medical slang for ‘we don’t actually know why, but people get them sometimes, don’t get them other times, and some medicines can tip you over the balance’.

It’s also slang for ‘let’s take a big family tree, but it’ll probably have nothing to do with the problem, since it rarely runs in families’. Double sigh. I mean, like ‘duh’.

The (btw pregnant) counsellor did point out that I managed to grow a baby with the nastiest, and rarest kind of NTD.

Thanks lady. Although I already knew it anyway.

Apparently there are cases where NTD’s happen again to people (quoted odds she gave me are 2-4%, i.e. one in 50- one in 20, which is lower than my readings, but why quibble over the fun I am to potentially have in a future pregnancy with this?).

The solution is: we all just goes on masses of folate and *hope* the semi hocus-pocus’ll help.

‘Cos (here’s the fun part) if it happened again, you guessed it, the odds go up. I’m guessing after two the stats tail off because we STOP having children.

Even if we do find a genetic cause with how my body handles folate (need I point out how bloody sad it will be to find out that I had a normal baby and could have simply prevented this?), there is no solution other than the biggest dose.

In fact it’s the blanket answer for everything….

Had a pregnancy with spina bifida?

LOTS OF FOLATE FOR YOU!

Had a pregnancy with anencephaly?

LOTS OF FOLATE FOR YOU!

Happen to be related to someone who did?

LOTS OF FOLATE FOR YOU!

Taking medication for epilepsy?

LOTS OF FOLATE FOR YOU!

Have a mutation of a folate gene (MTHFR), well why test, because all we can do is…

LOTS OF FOLATE FOR YOU!!

All this is somewhat reassuring and screamingly annoying simultaneously.

But I can’t fault the woman giving the news. Nobody *does* know exactly why this happens, and there *is* no other preventative strategy.

So here is my request for the next pregnancy, since *clearly* wanting a baby was not specific enough.

1. I would like to get pregnant please.

2. Without IVF would be super-dooper, but I’ll take whatever mode I must

3. Could it be within the next 6 months so I don’t go mad? Last time it took a little long.

4. Could it not only NOT miscarry and have the ability to go to term, but

5. Here’s the *critical* part, so I hope the baby making deity is really concentrating HARD. Could the Bubba please, please be all in one piece, with everything normally constituted and compatible with being a real pain in the arse when it hits adolescence?

Just getting to birth and having everything go splat wasn’t such a fun plan this time, so I’d like not to repeat it.

Now all I have to do is ovulate (ha!), have sex (snigger) and get pregnant, right?

Gee, thanks

I’m kind-of-sort-of doing ok.

I’m grieving, but I think it is appropriate.

Mostly I’m getting ready to go back to work and the mess I now have to catch up with and trying to think very hard not about what should have been, but what hopefully one day will be.

I’m reaching a point where the saddest thing will be that for most people, even those who know about the baby, it will cease to exist. I know that it is normal for people to think more about their own lives, and I cannot expect unbridled sympathy forever, but gee…so tough.

Even some of the very well intended kind words at the moment really rankle.

If one more person tells me that it must be terrible to lose a child I will have to rearrange the conversation thusly:

1. To lose a child would be careless, and that I am not.

2. I know miscarriages, especially late ones are horrific, but YOU BETTER bloody well acknowledge that I did not miscarry my child. The situation was of an active action I made and not a passive response to an awful event.

3. I know it makes things ethically messy for most people, but there was no loss there was heartbreaking, gutwrenching, I-wanted-to-run-away-from-that-hospital-but-I-had-to-do-it intended termination. And I will feel pathetic and shit about it, to some degree, for as long as I live.

Now I feel better I’ve got that off my chest. Without hurting anybody, mercifully.

I have decided to ask my dear husband if he will agree to marry me again. I even have a ring. God I’m nervous.

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