I don’t want you to go to school either darls!

So my twins have started ‘big’ school…when they look anything but big!  I’m always saying “what a big boy” and “you’re such a big girl”, but when you put a school uniform on them, even the tiniest possible size, they seem to shrink back down to being your tiny little ones again.  My little girl Anya is swamped by her cardigan, even she says it’s “stupid”, she seems too tiny to be wearing a school uniform.

For me this time the heartbreak has been huge.  Saying goodbye to such a busy and all consuming chapter in my life and waving off my precious babies to the next stage in their exciting lives.  It’s hit me hard and especially when Anya has cried and screamed every day, in fact kicked the teacher twice!  I can’t believe they are four and a half, can’t believe my tiny 2lb miracles are now ready for school at all!  I just want to hold them a little longer, extend this chapter and I suppose feel them in my arms needing me like they used to.

I was no different when Zac started school and I can’t believe he’s now in year 5.  I felt like I was handing my baby over the state and I was losing him.  I was heartbroken but unlike Anya, he never looked back and took to it like a duck to water, which perhaps made it worse.  I wanted him to miss me and need me!

And yet, that pain was different.  I was determined not to make a big deal of the huge milestone my twins going to school was given their prematurity and bumpy start to life because right now, four and half years on, we are a normal family, they are happy healthy kids and I am just like any other mummy who’s kid is starting school.  I avoided the reference to their start and it felt nice to be like a ‘normal’ mummy for once.

What I did feel was that my pain was wholly different to that of those mummies whose first born was starting and who were desperate for another child to fill that void.  Whose ‘baby’ was flying and leaving an empty nest when their mummy was desperate and unable to fill the vacancy.  Who had watched every milestone and month pass by hoping to conceive at least, never mind give birth, by September so they didn’t feel bereft.  Who had to leave nursery or pre-school yet didn’t feel ready to leave that life, that routine or group of carers.  Who was watching other mummies in the playground try to get their child into school whilst battling a feisty toddler or juggle a new baby when their arms were left empty.  Who just wanted to scream let me have my baby back, I’m not ready for this experience to end.  Who cried a million tears silently, on her own, not just at the child starting school but at the child who she loved but had lost or not yet met.

I was that mummy when Zac started school.  It was an all consuming experience that too few could understand.  It had so many layers, was so complex and was hugely painful.  Life was racing on fast forward and I couldn’t keep up.  I was supposed to have another baby by then.  I had lost the opportunity on too many occasions and life wasn’t panning out as I’d planned or hoped for.  And it hurt.

This week, Facebook was filled with mummies tormented by their little one starting school, with a few able to admit the pain and hurt at their loneliness and it was heartbreaking to read.

I have no real effective words of comfort, advice or tips on how to cope in these weeks ahead.  It’s tough enough for me with the twins starting knowing I no longer yearn for a child, but I know it’s doubly tough for you with the empty void you also feel, the frustration that haunts you and the feeling that people don’t understand the depth of your hurt.

But I do.  And there are others who do too.  Find them, talk to them, open up and share your feelings.  Be kind to yourself.  Cut yourself some slack and squeeze that baby with all your might when you strip off that “stupid”, over-sized uniform and tuck them up tonight. x

Secondary Infertility Matters

“Can I please share your fertility story?”

Secondary Infertility MattersSo much has happened in the last week, I honestly feel exhausted.  After working till the early hours for weeks on end, last Thursday my new website finally went live.  It was supposed to launch today, just a day before National Fertility Week UK, but after Fertility Network UK launched my films on their YouTube channel and Hull IVF Unit released their press release about their new campaign #DareToShare that featured a quote from myself, I had to rush the launch through in case the web address featured.

At the same time as amending PayPal coding and proof reading my pages I was racing too and from the IVF Unit juggling interviews with Viking FM, KCFM and ITV Calendar News!  After weeks of preparation it was all over and done in a flash and I was talking about the new site staring down the camera of the regional news!

But it was all good.  It was all hugely positive and just one of many steps towards raising the profile of Secondary Infertility.  So far, I’ve not personally promoted the website just yet, I’ll be putting it on my Facebook page later tonight, but already, just from promoting the YouTube film the feedback has been fantastic.   As I write, the video has been shared 17 times by my friends and family, how terrific is that?!

One asked: “Is it OK to share?” which was lovely as I’m a stickler for Facebook etiquette and respecting privacy but I was like “hell yeh! share away as much as you can, that’s why I’m doing it!”

The response in their comments has also been fabulous and very rewarding, though it has actually got me thinking ‘why on earth have I taken all this on after the life we’ve put ourselves through the last 5 years?’  I’m still wondering now TBH.  But, what I do know, when I’m not trying to analyse myself, is that it’s the most natural instinct in me right now, behind my family.

I don’t think you ever forget an experience that took you to the brink.  That was Primary then Secondary Infertility for me.

I don’t ever think you forget a comment that stung you.  That was the reply from a publisher who said there wasn’t market for SI books because people didn’t search for them on Amazon for me.

I don’t think you can forget other people who are trapped in horrid position you have been fortunate to have escaped.  They are those still trying for a second child feeling guilty and alone.

Two words people have used a lot over recent days have been brave and inspiring.  They make me very proud but I’ve never felt brave, I certainly don’t mind sharing my story because I know the huge value it has compared to any embarrassment I may have.  Inspiring is an interesting word as it generally means you encourage others to do the same – I hope I do.

If more people who have suffered Secondary Infertility, or even Primary Infertility shared their stories highlighting the pain, the background to the treatment, their coping mechanisms, their successes or how they handle failure, the more people will feel comfortable if they are suffering. We who have been through it must share our experience to ‘normalise’ and ‘de-stigmatise’ fertility treatment.

I hope this feedback continues to grow as promotion of the website, Youtube channel and Facebook page start to grow over forthcoming months.

There was one comment however that could have stopped me in my tracks and say “job done”.

It was from a girl in Pennsylvania who messaged me to say “Thank you for sharing your video. As I sit in my car crying, it was so comforting to know that I’m not alone. Thank you”  I know how much it meant to her because there was many I time I too had been sat alone crying.  I remember the very first time I identified with Secondary Infertility – it was so so utterly refreshing to recognised the situation I was in and know it had a name, I was part of a group of people, and realise it wasn’t just me!

Whilst I wish there was no more ‘girls in Pennsylvania’, I know there are hundreds we need to reach, so again, I say in answer to your question: “Hell Yeh!  You share the ass off my story and let’s do this together!”

 

That look on his face.

As much as sitting on the loo staring at the dark streak of blood on the paper in my hands gave me a kick in the stomach, that was nothing compared to the pain of having to tell my husband.  It wasn’t bad enough that I should have the earth shattering discovery that I was bleeding and my dream of being a mum for the second time was over for another cycle, I then had to find the courage and strength to impart the tragic news to the person I loved the most, my husband.

Infertility is often all about the woman, for obvious (unfair if you ask me and God IS a man but anyway) reasons.

I could be broken, physically, mentally and emotionally destroyed yet I would have to muster that certain something that would not only enable me to deliver the news, but also be there to comfort and support him when his dream of becoming a father was snatched away, again.

I was talking to another girl recently about ‘that look on his face’.  That little boy lost look that cannot disguise the immense, acute pain coupled with the longing yet confused look as to what to do next.  Should I hug her?  Will she hug me?  Can I change this?  Can I rewind time?  Can it be true?  It is alright to cry?  Do I really have to look at that paper FFS?

There is no disputing that men are often overlooked throughout the treatment and it’s pleasing that mens’ fertility issues are being talked about more and more.  Yet still, no matter how much attention is paid to perhaps Men-related causes of infertility, whatever the cause, there will always be that look between and woman and her partner when she has to deliver the news.  It’s unavoidable, and I guess in some relationships, that look could be on a female partner where the other is trying to get pregnant.

I will never forget that look.  I’ll never forget the fear and fury and having to tell someone that news knowing how devastated they would be.  When I needed support the most I had to find strength to comfort someone else.  Yet it’s the way it was, will be and can only be.

You are not alone

It’s National Fertility Awareness Week in the US this week and the Secondary Infertility Facebook pages are full of girls wanting to raise the profile of both Infertility and Secondary Infertility.  It was pleasing (in some ways) to se that the national organisation was using the strapline ‘You are not alone’ as their campaign message.  This was the exact same message I wanted to get across when I realised my situation had a name and knew that there must be others who like me had felt so alone, so isolated in my ill-placed feelings of guilt and greed at wanting a second child, that I began writing my book.

Indeed, after a recent Facebook post a friend of a friend wrote that they gave up reading after realising I already had a child as his ‘wife and I can’t have kids so I have little sympathy’.  It was a feeling and response I completely understood but one that precisely sums up the unfortunate predicament of anyone suffering infertility trying for a second child – there is little understanding from those who have children and never struggled and little sympathy from those who are still trying or unable to conceive a first.

I was never really looking for sympathy, perhaps a little empathy, but mostly a feeling that it was OK to say how shit and sad I felt without criticism or snide remarks.  This gentleman did in fact read on and come back to say he eventually did understand and that we all had pain just in different places.

A lovely response from Infertility Network UK today said that contact with patients showed that the pain of secondary infertility has a huge impact on their lives and that whilst statistics are hard to gather they believe approx 5% of the UK population are affected by Secondary Infertility.

The fact is, Infertility is Infertility.  I had the same desire, needs, cravings, longings, pain, effort in trying, relationship crisis, sadness and despair as anyone wanting a first child.  However, because I had my son I had no escape from that misery.  I couldn’t go off for a weekend with adult couple friends, I couldn’t escape baby groups, I couldn’t get away from childrens’ TV programmes, I had an empty nursery to torment me, I put away baby clothes not knowing whether to keep hold of my favourites and I had a little boy grilling me to answer countless questions about why he didn’t have a brother or sister.

I will be the very first in line to say I am lucky.  I was blessed with my son.  But I will look anyone in the whites of the eyes who dare defy the pain that Secondary Infertility causes and question whether anyone should be vocal about those feelings.  For those who understand no explanation is needed.  For those who don’t understand, no explanation is possible.

The shame of SI is that whilst a study in the Lancet a few years ago suggests that approx 10% of the worldwide population suffers from SI at one time or another, there are just tens of girls on the SI groups in the US and I can’t find any for the UK!  Tens of girls!!?  Girls with SI feel alone, feel shame and feel they cannot talk about it.  In fact I’m pretty sure countless don’t even know the expression such is the stigma of the condition.

They are not alone. You are not alone. So pick up the mantra of the US Fertility Week and if you know a friend or family member that is trying for a second child, lead her towards a friendly group, allow her to talk and help convince her she is not alone, she should not feel guilty and she should never give up hope.  #walktogether

In their shoes – and I don’t like it!

Each time my treatment failed or my period came, I became hardened to that pain and became deaf to my loved ones soothing words.

Their sympathetic repetitive phrases used to drive me mad and the helpless look on their faces as they struggled to find anything to say to help me was almost as painful as the despair itself.

I did feel sorry for them.  I did long for them not to feel any pain and often, once the realisation that we had been unsuccessful yet again had sunk in, I’d start to dread telling friends and family, knowing that they too would be hurt once more.

Recently, I was supporting someone I have known for years through her fertility treatment. This time, her fourth cycle, she seemed to be passing every hurdle brilliantly and she got further than she had ever got before.  And then she shared her tragic news.  It was not to be.

Whilst I have supported a number of girls through negative tests, miscarriages and failed cycles, this one hit me harder than any before.  I was convinced it was their time.  I had no words.  I literally did not know what to say to her and for the very first time I wanted to get on the phone to my Mum, brother, sister in law, big sister, friends and wider family and say how utterly sorry I was for everything I put them through.  For all the times I growled as they tried to find something to say.  For all the grunts when they said they were sorry for us.  For all the times I left the silence between us as they struggled to make me feel a little bit better.

It was horrid.  I felt useless.  I realised just how hard it had been for those around us.

In the end, after expressing my sorrow of course, I used the words with her that I found to be the only words that helped me. “It’s shit”

I found in saying these words to friends and family, it let them off the hook in trying to find clever words to fix the situation.  There are no words, there is no fix, the situation is just shit.  I knew it, they knew it and actually, bluntly acknowledging the fact always made me and them feel better.

They say swearing demonstrates a poor vocabulary, but when all else fails – who gives a shit?!

At what cost a child?

http://www.dailymail.co.uk/femail/article-2926471/Woman-appeals-donations-strangers-afford-IVF-refused-treatment-NHS.html

This story is in the paper today about a woman whose only hope of a child is through IVF as her partner had testicular cancer, but because he has also had a child in another relationship before the cancer, the NHS refuses to fund their fertility treatment.

Her mother describes Eva: ‘Eva is a shadow of her former self. As Eva’s parent I have watched how the desire for a child has affected every part of who she is.

‘Eva has lost her confidence and self-esteem… she is depressed, angry, and always emotionally fragile.’

Funding debates are complicated and views are subjective and having had to pay for four rounds myself i am obviously fairly one sided in my views. What frustrates me mostly in the ‘should fertility treatment be funded?’ debate is that the fertility organs aren’t viewed the same as any other organs that aren’t functioning properly. It takes two to tango, two people and two sets of fertility organs to create a new life – if one of those isn’t working properly why are these not eligible for funded treatment? Unjust? I think so. Needs addressing? Definitely. I consider myself lucky to have afforded 4 rounds but there would have shortly come a time where I could not have afforded another round, if that time had come after three rounds I would not have my babies today. Unbearable thought.
That Eva has had to resort to the Gofundme site is testament to the pain longing for a child creates and her sheer determination to be a mummy. I hope she is successful. But then her real battle starts and I wish her success with her treatment too.
I can’t ever remember seeing a morbidly obese person launching a Gofundme site for a stomach stapling!! #unjust

Bravely does it…

So here I am finally getting ready to make my site go live and this feels like the scariest thing I have done in my life!

This book has taken three years to write and it is strange to think that I started to write before I even knew the term ‘secondary infertility’ existed. In fact, I started whilst going through our first cycle so that was even before I had any reason to think I would need a term to describe our situation!

I am pretty sure that had I known about our journey and the four attempts before I started the IVF treatment, I’m not sure I would have ever taken the first step. It was a daunting experience but one I embarked on fully expecting to get pregnant first time. I hadn’t anticipated the darker side of failed attempts. Looking back, whilst this was naive, it was also my saviour, for it made me get on with the treatment and have a go. It was a long, painful journey that would not have been so easy to start had I known all that I was in for over the next 14 months.

And yet, sat here now, about to launch my blog and launch my Facebook page, this feels like the scariest journey I have ever made in my life.

Sharing my thoughts, our most intimate moments, not to mention my possible grammatical errors, all seems pretty daunting.

And then I remember that couple on the sofa that have been in my thoughts whilst writing every chapter. Somebody, somewhere, feels guilty for wanting another child and ashamed that they feel so desperate for a child when they know they are blessed to already have one, or more.

They are my saviour right now. For if sharing our story can convince just one couple that it’s alright to feel the want for more children, that you’re not greedy and you should not feel guilty, then that is all the motivation I need to press ‘go live’. It doesn’t feel so scary afterall.