Two days to go

Well, here we go. After months and months of waiting, which included 45 days of menstrual misery as my body trolled me in between egg collection and the beginning of my pre-transfer cycle, my first frozen embryo is due to be transferred on Thursday.

We’ve got everything planned: on Friday we’ll drive to Cornwall, to a little chalet overlooking the sea, where we will spend a week roaming and playing music and drawing and very definitely not lifting anything heavy or eating nice cheese.

In the meantime, I am lurching between extreme optimism – “OMG I’m getting pregnant this week” – and extreme negativity – “there is no way my body will ever carry a child”.

These swings are interspersed by periods of intense Googling: I can’t help obsessively reading IVF stories and trying to figure out why they went wrong. She has blocked fallopian tubes and it didn’t work – but did she have endometriosis too? No one ever says what goes wrong. I need to know, dammit.

J and I keep having nightmares. Just as we did in the weeks leading up to our wedding, we have both been jolting awake drenched in sweat on a fairly regular basis. My dreams are pretty straightforward: I’m pregnant for eight months but then realise I don’t have a bump or I go into labour but nothing ever comes out or I go to the clinic for the transfer and they cheerfully tell me it’s going to be another five-week wait. J is more… innocent. He dreams about monsters and ghouls and things that go bump in the night.

Meanwhile, the kindness of those around me has been profound. Because I’ve been so determined to talk about this, everywhere I go people are sending me their love. I keep getting messages from friends and family: “we’re thinking about you”. It is overwhelmingly nice. I don’t want to let them down.

And all the while, the spectre of the pregnancy test looms. I’ve developed a pathological fear of peeing on sticks. I can’t imagine what it feels like to see two lines in that little window.

Above everything, I am scared of the fact that, more likely than not, I will have to go through this all – the heartbreak, the drugs, the endless, endless waiting – again. I genuinely don’t know if I have the strength.

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And lo, it came to pass

At my work Christmas party, on the day it finally sank in that my final round of Clomid had failed, a colleague of mine confided in me: she had been trying for a baby for three months. Nothing was working. She’d started tracking her ovulation. 

‘Diddums,’ I thought. Then I told her my story. We both cried. We both got extremely drunk. 

Today I found out, through another colleague, that she is pregnant. It’s the first pregnancy announcement since I received my diagnosis. 

I wish, more than anything, that I could be happy for her. 

The A-word

I started off writing this as a comment on Long Term IVF’s very thoughtful post about PGD (pre-implantation genetic diagnosis – basically genetic screening of embryos) – but then decided to turn it into a post of my own, as this is something I have given a lot of thought to.

She asks:

If you knew your child might only have 18 years of life, would you decide against giving them life?

… and concludes, very fairly, that no, she wouldn’t. She would give birth to that child.

For us, we would rather take that risk, rather than never have children or never try… I don’t want to play God.

Admittedly, I haven’t put a lot of thought into life-or-death situations like that – but I have thought a lot about playing God.

Because of J’s translocation, we have a massively increased risk of either miscarriage or conceiving a child with Down’s Syndrome.

Before we decided to go down the PGD route, J and I had already decided what would happen if we conceived a child with DS. My brother and step sister have severe autism, and J’s cousin has DS, so we have both seen first hand how hard it is to bring up a child with learning disabilities.

We disagree on a lot of things – but one thing we didn’t really even need to discuss was that we would terminate a pregnancy if we found out our baby had DS.

I know, considering all the shit we have gone through, that it sounds like a crazy thing to say. But watching my brother and step sister and J’s cousin grow up into a world that doesn’t always want to make a place for them has been fraught with anguish for both our families.

As J’s mother keeps saying, his cousin has brought “so much joy into the world”.

But equally, none of them can get proper jobs, they all need round-the-clock care and getting any kind of provision for them (care, housing, a frickin job) involves a giant battle with local councils, which has become harder each time as the government cuts services. Once my parents are gone, it will be left up to my sister and me to care for my brother and step sister, which of course we will execute with a heady mixture of devotion and impatience.

Half the fight for most families is simply trying to create a purpose for them. Did you know only 17.5 per cent of learning disabled people have a job in the UK? That’s 1.3m people, many of whom are perfectly able-bodied, who desperately want to contribute to society, but can’t because most workplaces aren’t geared up to help them.

What’s heartbreaking is that my brother, my stepsister and J’s cousin all know the world they live in wasn’t made for them. They are all perfectly aware they’re not getting out of life what others do. They all know no 20-something hangs out with their parents as much as they do. They just want to go to work, hang out with their friends and fall in love, like everyone else does. But the world they exist in finds it hard let them do that.

Of course, this is a highly personal decision for everyone who makes it. Luckily for us, the PGD should mean it’s a choice we don’t have to make.

Old

My mum was 25 when she had me. To me, at 30, it seems ludicrously young. By the time she was my age she was a full-time mum with two girls, and an expat wife to boot – we spent five years living in Europe, following my dad’s job.

I think giving up her career and her freedom to raise kids while she was so young was probably harder for my mum than she has ever let on.

But her youth was always complimented by my friends’ mothers, and I was proud of her. She listened to Bjork and Radiohead at full blast and wore clothes from Karen Millen (when it was still edgy) and big stompy boots and let me drink Smirnoff Ice. One time she even got stoned. My friends’ mums listened to The Beatles and wore clothes from Marks & Spencer and made them do their homework at the same time every day.

J’s parents were the other extreme – although his mum was 30 when she had him, his dad was 40. He remembers his friends all being better at football than him because they spent weekends playing with their dads (probably on t’moors, for he is a proud Yorkshireman) – but his dad was too old and couldn’t join in.

One of the over-arching themes of my wee-hours-of-the-morning, can’t-sleep angst sessions is that, by the time the infertility tests are done and a diagnosis is decided upon and a cure is administered and miscarriages have been had (see “translocation”) and IVF has been carried out and a child is produced, I’ll be old. I’ll be an old parent. A geriatric mother.

What’s worse is, J will be old too. He will be too ancient and creaky to play football with his sons. If that happens, it will break my heart.

Let’s face it: our combined gene pools are hardly likely to create the next David Beckham. But if they’re not going to spend their school football lessons crumpling like Bambi every time they are faced with kicking a ball, these kids are going to need all the help they can get. Geriatric parenting isn’t an option.

Eating for one and a half

Can we talk about the size of my arse please?

I’m 5’11, and have been a “curvy size 10”, as an elderly Italian gent once euphemistically called my size 12 frame, since I was 15 years old.

But lately, an increasing emphasis is going on the “curvy”. Probably because, for the past nine months, my emotions have yo-yoed between “pretty sure I’m eating for two” and “depressed. Need cake”.

There’s probably a week at the beginning of the cycle (currently 45 days long) where my giant appetite isn’t a problem. But other than that? Cake.

Has anyone else had this…? I just don’t really care what I eat any more.

Moving away from confectionary for a minute, I won GP bingo last week. No one has “a doctor” at my local surgery – they just hand out appointments based on whoever’s free when you need them. I got a new lady this time. I was ready with my sob story: “I know we haven’t waited a full year but my husband has translocation and conception is just the first step and…”

She looked at me like I was mad, then proceeded to refer me for every test there is. “You had an ultrasound on your ovaries last year? Better get them checked again. Let’s try and get you in with the consultant.”

Recent experiences have suggested the NHS can be a mixed bag if you’re not actually at death’s door. But when you win, you win big. If this level of gusto persists, I’ll be pregnant by next Wednesday.

Think I might have a slice of cake to celebrate…

Tired

Hope. Whoever came up with all those cliches about its importance should be shot. Or at least passively aggressively glared at until they feel super-bad about what they’ve done.

We should not spend our time hoping and praying for things to happen. In fact, as children, we should have our hopes raised and then dashed again on regular, government-appointed occasions, as a mandatory part of our education.

Then, as adults, we will be able to calmly and cooly assess the chances of something coming to pass – instead of hoping like mad something will happen, no matter how slim the chances, only to lose it when it doesn’t.

So here’s where I’m at: into month nine, now, of trying for a baby. I have learned all the Mumsnet acronyms. I can recite, off by heart, the lengths of my past five cycles (erratic, thanks for asking). I can bore you for hours with information about how to create the right conditions for conception. Hell, I can even talk to you about cervical mucous, if that’s what you’d like to discuss (no, me neither).

My husband has balanced Robertsonian translocation, a genetic disorder which means his chromosomes are… skew-whiff. So I knew to expect some difficulties. But I can’t seem to get past the first hurdle – the actual conception. And it’s more tiring than I ever thought possible.

What I didn’t expect – despite the forums and acronyms and vast, vast quantities of chatter out there – was the loneliness of all this.

That’s not because my husband isn’t involved. It’s not because I don’t have any friends – because I do, and they’re fabulous. And my mum and sister and even, occasionally and incredibly awkwardly, my dad, are all desperate to say encouraging things.

What’s the point of talk, though, really? It can’t do anything. I have tests booked – and besides, spending time with people gives me the chance to be outside my head.

But here I am again, at home on my own, and feeling sad. And it would be nice to know there are others going through this.

So hi there, I’m Emma. I can’t seem to get pregnant. Nice to meet you…