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.

Six things not to say to your infertile friends

I’m pretty open with my friends and family about infertility. Partly because, well, I find it difficult to keep my mouth shut – but partly because I thought it was an important issue which no one talks about.

Having discussed it at length with various people, at varying degrees of inebriation, for a year now, I now know what to expect. At the beginning, though, it was hard.

If you know someone in a similar situation, here are some oft-uttered lines to avoid.

1.”It’ll happen”

Honestly? It might not. It doesn’t happen for thousands and thousands of people every year. Positive thinking is a great thing – but unrealistic thinking will only end in heartbreak. Right now your friend needs to protect themselves from that.

2. “You just need to relax”

People love this phrase. Remember when you were 25 and everyone had a boyfriend except you, and people kept saying you will find love when you least expect it? This is that all over again.

When your body is giving you mixed messages for two weeks of the month – that’s literally half your life – “relaxing” is not an option. When everywhere you turn, babies and pregnant women and advertising (for it is targeted at women of a certain age) remind you of the one thing you don’t have, turning your conception radar to the off position is impossible.

And if you really think about it, this phrase is a form of blame. For months, I honestly believed the reason I couldn’t conceive was my own inability to chill out. This is victim-blaming at its finest. Stop saying it. Please.

3. “A year? That’s no time!”

Firstly, do you know what? It feels like an age. It feels like geological eras have passed since I started trying for a baby. It feels like if I ever do birth a child, humanity will have evolved to the point where it will have gills, or the ability to move objects with its mind, in manner of X-Men.

But my other point is that a woman may not want to share with you the exact details of what’s going on with her body (I will: I bleed. All. The. Frickin. Time) – but there’s a good chance she knows there’s something wrong. If someone is upset about not being able to conceive, it doesn’t matter how long they’ve been trying. They just need support.

4. “You can just have IVF/adopt”

Last year I had a heart procedure in which they sliced into my groin, stuck tiny wires up my arteries, and a cauterised a nerve in my heart. It was horrible.

The prospect of going through months of similarly intrusive and unpleasant – not to mention expensive – tests and procedures just to do what most people do without much effort? That’s horrible.

The prospect of going through it all and it not working? It’s difficult to even fathom.

As for adoption – of course we will think about it if all else fails. But I’m a woman – the desire to carry a child is ingrained. Not being able to do so will be very, very hard to get over.

5. “Maybe you should stop trying for a while?”

So if I finally conceive, I’m even older?

Yeah. Great plan.

6. “My friend drank raspberry leaf tea/had acupuncture/went to see a specialist and conceived straight away”

Babes! I’m so happy for them! Thing is, I’m a bit emotional at the moment and, depending on what point of my cycle I’m in, there’s a chance I’ll rush off to the supermarket, buy all the raspberry leaf tea, drink 18 cups a day and then be utterly inconsolable when it doesn’t work.

Ditto getting pregnant through the very act of going to see a specialist, or doing acupuncture (also, hello? $$$), or taking Clomid, or any of the solutions that worked for everyone else’s friends except me. Advice is nice but such is the emotional rollercoaster Team Infertile is on, there’s a good risk it will make us feel worse when Big Red arrives and we’ve done exactly what your mates did and it didn’t work.

Basically, my message is this: your infertile friends don’t need advice. Particularly if the most effort you went to while trying to conceive was lying back and thinking of England. Just because you have made a baby does not make you an expert at it. It just makes you lucky.

Them, on the other hand? They’ve already spent more time than you can possibly imagine Googling pregnancy symptoms and the likelihood of luteal phase spotting meaning a negative pregnancy test and whether having an achy big toe means they might be up the duff. They could write books about this stuff. They may not be great in practice – but their knowledge of the theory is unbeatable.

Basically, though all they want is a cup of tea, and someone to listen. That’s it. So go forth, and be supportive.

 

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 (it was quite edgy back then, you know) 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?

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

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

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…