Monday, 24 December 2012

Another Christmas, a new realisation

Tomorrow is Christmas day.  This is the second year that we have not dressed a tree or put up some decorations, it feels hugely misplaced to do so and I simply have no energy to do so alone.

In most ways this Christmas mirrors the last.  Silent house, broken dreams and hopes scattered to the wind.  This year however comes with a new consideration and the very real realisation that this may never happen to us. As you grow old with the one you love you can only dote on each other so much on Christmas Day, I understand now why children are important they inject a youth into a life that becomes tired and old.

But if children never come, what does that mean?  Especially if you want them as much we we do?  Will every Christmas be like this one, a silent haunting reminder of what we nearly had?  A tribute to four sons who we saw but who never saw us?  A failed family?  If we choose that path what will that signal for our relationship, strained beyond most, even the most reinforced of concrete will eventually crack and crumble if a force keeps battering it.  But if we choose, and it must be a choice, to not making Christmas a tribute then what?  Somehow you live past it but at the moment I have no idea how.

The energy expelled in the last few months has finally caught up with me I think, I am so tired I could sleep for a year.  Yet I am sitting here with a faint smile and reindeer pattered jumper ready to get up and keep moving as time marches forward which I suppose is really what makes the decision for us both.  

Each day comes and ends and we survive it, then into the next......what can you say to us?  How can you support?  The most common gesture we get now is that big empty armed shrug from people who agree that there are no words and no excuses for what has happened to us.

Two years and seven months ago we started to try and make a family.  Two years and seven months later we have a family of ashes.  

To all who read this and know the pain may this Christmas pass by and next year bring new hope to brighten your days.....


Tuesday, 11 December 2012

Do something amazing today..

Yep - you can and all it takes it three minutes of your time.  Anyone that knows me knows that I have a friend in Alaska called Becky she needs you to click and vote for her today.

By voting she has a chance to win a round of IVF for her and ther gestational surrogate and ultimately a chance to have a baby.  After two stillbirths she deserves this and all we need to do is:

Navigate here: "I Believe" Video Contest Entries scroll through to Rasmussen Family - Becky and Dereck.

Thank you!! xxx


Wednesday, 28 November 2012

Final Goodbye

We knew this day would come and I had talked to you about it all the time.  Little did I know that you had your own plans to make it unique and memorial for us on that wet and windy Wednesday.

No contractions came so even though I knew you had gone on the Sunday it was only on Wednesday that Papa' took us to hospital and they tried to induce you to arrive.  I waited all morning and at 3pm only a few tummy pains indicated that something was happening, at 6pm they stopped completely.  It was like the sea suddenly going calm, I feared that this was going to be the precursor for real labour to start and braced myself.  Held Papa's hand, lay there, waiting.

At 1825hrs you arrived; quickly, silently, painlessly, perfectly.  I only had time to turn to Papa and tell him you were coming, there wasn't even enough time to call the midwife.  I didn't even push.  I didn't need to because you were so kind to me.


Mummy holding your perfect little hand.


I held you, I bought a special book and read and sung the lullabies to you.  I took photos and the priest came to bless you, we gave you your presents and talked about how perfect your tiny hands and feet were. Your eyes were open but you couldn't see us, that is always the saddest thing, I wanted to show you Papa' because you looked like him.  You looked like your brothers too.  We will forever miss you Santino, our 'little Saint'.

Someone told me that I have a quartet of angels now and think that is more than enough for anyone.  This is not a wonder of modern medicine, I am an example of a mystery.  A mystery that has taken my whole family that should otherwise have been here.

Sunday, 18 November 2012

See you later alligator......

He left us last night, as silently as he arrived.  I felt it this time though and when I listened for a heartbeat on the doppler this morning I knew I wouldn't hear him, I already knew.

Now that has always been the hardest bit.  Here we are again saying goodbye to another child and being left behind with a strange sort of grief this time.  It has felt almost commonplace, separate, continuous but it is the normal that we know rather than the earth shattering surprise it has been in the past.

Difficult to describe.  For me I am relieved, relieved because I know this is the last time.  We will not be trying again and I really had no desire to ever be pregnant ever again anyway because of this overwhelming saddest it has brought us.  The empty hope, quiet despair and sad memories are all that have filled the last two/three years.

Every journey ends but we go on.......and so we must.  Is this the end?  No, never.  If you have learnt anything about me by reading this blog you know I never give up but I am not stupid enough to keep trying, I accept that until someone out there understands the mechanisms behind what happens and why I am allergic to pregnancy then I would be a fool to hope that another pregnancy would end any differently.  However first we need to concentrate on little Tico, he will be arriving soon and I will get to say hello his eternally innocent face at the same time I also say "see you later alligator".




Friday, 2 November 2012

A lifetime in a few weeks..........

Most parents when they find out they are pregnant start planning for the fact that the next xx number of years is going to be a whole new direction.  The whole shift in their lives takes place, they buy a new car, they decorate a room they may even have to buy that new house.

When you carry a baby that will die before its born your life shifts and condenses into those weeks, except you cannot see that child, you may never even feel that child move, you are told it is there and you have an extra heart beating.

That is what I have at the moment, an extra heart beating.  I have not written before because I wanted this time to be that sacred time together with a big 'surprise!' to everyone at the end.  Today we were told that this will not happen.

So, from today we wrap-up this baby boy's lifetime in a few short weeks.  How we made him in Costa Rica and how he will die here in the UK before his first Christmas.  

To-date I have taken 504 pessaries, 6 intravenous infusions, 672 steroid tablets, 20 subcutaneous injections, 336 normal injections and 1,512 different vitamins and minerals.  

The tragic thing is that this treatment plan doesn't appear to have made any difference.  He won't make it, he is just too small and the growth is slowing down.

There was no good news/bad news from the Consultant today.  He passed sentence: a choice for the convicted, to terminate or wait.  That is no choice to make at all for this child expected in the UK in 2012.  It is an archaic story straight from the pages of a Medieval book, I should not be a face of forgotten modern medicine - there is so much that could have been done to prevent this, all this would have taken is research.  This is not what should happen.

We still have so much to show him and yet he will be stillborn.  My fourth child.......will be given to fly




Monday, 15 October 2012

Remembering, thanking


Today is Pregnancy and Infant Loss Day.  Around the world candles will be lit at 7pm to remember tiny souls that never got to stay and set foot on earth.

As my contribution I wanted to give thanks to all the ladies who have continued to support me for the last three years, most of whom I have never met, I would probably not even recognise them in the street but would probably not have been able to make it through without them.  I often talk about how lonely it becomes after losing your children but these lovely ladies and modern technology go someway to make up for the lack of any real professional support and all the other reasons that the people that were closest decide to keep their distance.


Even on holiday she remembered my boys

Claire -In memory of Molly (born at 21 weeks in April 2011) & Grace (born at 22 weeks in May 2012) her two much wanted and forever missed daughters (and a little star).  Both of us continue to struggle to understand why our bodies will not carry to term our beautiful children.

Propping each other up through the really tough times.......thank you!  

Read more about Claire you can find her here: Loss Through the Looking Glass

Heidi - and beautiful Angus 8th February 2011 http://angus.wu.muchloved.com/ lost tragically to SIDS, Heidi has one of the biggest hearts I know and never forgets to send a text just to check on me.
Breeze - Edie and her little stars.  Breeze lost many children to CHI and with her I have tried to find some answers, always right there never judging.  She was blessed with a Rainbow and is a symbol to me that you should never give up hope.

Lisa - misses Finley (23rd March- 26th March 2012) very much.  She is still trying to understand exactly what went wrong and why Finley couldn't stay but still finds time to surprise and support other Mums out there.  Like letting some balloons go for my boys yesterday...... :) To read more go here: Dear Finley
Claire - Rory (21 weeks in 2009) and Milo (28 weeks 2010) and two little stars.  Who I contacted because our stories were so similar and she turned out to be an amazing source of strength.  We share the same Doctors and I hope the same futures.

Catherine - I only recently met Catherine and learnt all about Gabriel who was stillborn on 19th July 2012.   Distance makes little difference and even all the way in the US she still manages to completely surprise me by taking some lovely photographs. You can learn more about Gabriel Twinkle of Light here: and Catherine's beautiful work here: Gabriel's Garden

Leila - and her beautiful twins Charlie and Jamie, born sleeping 6th January 2012, (and her stars) who we have discussed many a time over lunch as they were born almost one year after my twins.  Always has something encouraging to say and never lets we get down.

And More....
Josie and Harry
Rebecca and Arthur
Kerri Alexandra and Jamie
Tanya and Marko
Laura and Imogen Poppy
Sharon and twins Joshua and Charlie
Callie and Amelia Jade (and her little stars)
Leanne and Stanley (8th March 2011)
Riwa and her little boy TJ (32 weeks)
Becky Liam (3rd January 2011) and Evelynn (22nd April - 24th April 2012)
Carly and Lissa Poppy Lissa Poppy

Above all my husband and best friend Sabino, because he is my reason to keep getting up in the morning......

Tuesday, 9 October 2012

Happy Birthday Little One

Happy Birthday Gab, you know I love you so,
I think of you each day and treasure all your little photos.
Happy Birthday Fagiolino, even though you aren't here today,
I will celebrate you and the 28 weeks we spent together before you went away........

His hearbeat:



So one year ago I was looking into your eyes that never got to see me.  Thinking about you today my little bundle of gorgeousness.

We had a party and your little buddy Gennaro came along with his hat!


(No Animals we harmed during the party, despite the look on Gennaro's face)


What happened the day he was born?  Read it here: That Beautiful Day

 "Bless the day he came to be, Angel's wings carried him to me, Heavenly
My Angel Gabriel" 09/10/11

Monday, 3 September 2012

My Black Hole and me

(Must be read while listening to the Eels "My Beloved Monster and Me")

I often just come to this blog to bumble away a few thoughts and get them done.  Today was not a great day.  I fell down the Black Hole again and then sat there for a while at the bottom, in the darkness, doing that 'Feeling sorry for myself' thing that sometimes happens.

I then hit the panic button on my mobile, sent a couple of 'help!' texts to my support network, received some reassuring 'Keep your chin up' responses and then cooked a risotto.

I have just been pondering about far to many things recently and the frustration I always get about how little I can actually change and as a consequence how little actually changes.  I feel old, way too old, old and tired yet I still stand there.  I still stand up again and won't be pushed down, I will sit down only when I want to for as long as I want to.  




Someone on Twitter asked me earlier what helped me climb out of the Black Hole, I help me.  My sheer bloody mindedness and stubborn arrogance.  the kind of qualities that are rarely seen as the most redeeming but now realise that they have a purpose.  I guess that makes 'The' Black Hole 'My' Black Hole and that is the key difference: I decide.

I can't control any other factor on this mad chase for a live baby so I'll be darned if depression is going to start telling me what to do as well. FACT.

So, enough of the clichés, no lessons learnt today but another day conquered.  Goodnight all x

Tuesday, 28 August 2012

Still Learning to Live Again

Today was a day that reminded me that, not only do I still mostly live in a bubble I have created but venturing out of that bubble chaffs a little and makes me recoil a little but doesn't actually make me spontaneously meltdown, which in some ways was what I feared the most.  

It is almost like teaching myself how to do something, to be able to 'just do' what should be a mundane everyday task and take part without shying away and retreating to the fringes, the shadows in a hope to be ignored and forgotten.

That task today was sitting in town with a friend that had twins after I lost mine.  Feeding them and seeing the irony in juggling the feeding of two mouths, both vying for the yummy baby glop and pausing for a minute thinking this should be me, my children should be here.  I wonder what it would have been like......back to hungry little mouths.  

But they are not.
They are not here.
I will not do this with my children ever.

I know and understand this now, but this is not a reason to keep myself cut off from life because I am here.  

Friday, 17 August 2012

Two Hearts Beating

So, due to some very clever followers on Twitter it appears that I have accidentally gone public and it's about time that I come out of the cupboard (blatantly I'm not gay) but yes I have got two hearts beating at the moment.  Mine and another. We know that bit so well.

These are the caveats for me sharing this information and you reading it:
- Not to mention for the time being, lets be 'hush, hush'
- Don't come running to me gushing with 'congratulations' 
- Try not rub in how pudding-like my body looks

If you can stick to these three things then I might be able to tell a little bit more of what is going on.  Quickly, so read the following in an allegretto tempo.......

I am over 12 weeks, just.  I am on a shed load of drugs (including the vitamins, I take 15 different ones a day) which are making my skin like sandpaper and my moods more evil than normal.  

I am having another three injected, twice a day, inserted (you know where), three times a day and have another intravenously every four weeks.  Blood tests galore and scans and checks and scans and checks......yes, be as exhausted as I am.  Verdict?  So far so good.

It is almost a fulltime job in itself.  But back to real life I have been trying to carry on as normal, very few people know, and I am wearing 'tent-like' fashion in an effort to hide the pudding.  Trying not to let this interfere too much with everything else - what a balancing act.

You see it is too early, much, much too early to feel confident.  I prefer to be quietly optimistic as well acknowledging the pessimistic as this whole thing unfolds again and we, as yet, cannot at any point know what the outcome will be.  

This is me right now, without any expectation but full of hope.  This is me. Phew!



Friday, 3 August 2012

Go directly to jail. Do not pass go. Do not collect your children on your way

I haven't been around for a while, I know and I'm sorry.  Not that I haven't been sitting around doing nothing I have been up to an awful lot.  Most of which is neither of interest nor concern for people that visit here, for the rest - well all I can say is that I don't want to allude to anything at this time.  Let's just wait a bit longer.


So it is August.  I had a rather uneventful Birthday this year but that falls in with all annual events really, they just don't hold the same meaning or excitement that they used to, the best present of all still hasn't arrived and until it does there is a little 'what is the point?' that goes through my head.  


I dreamt I was in a game of Monopoly a few nights ago.  I kept trying to go forward but each time I got about half the way around red lights starting flashing and the message 'Go directly to jail. Do not pass go. Do not collect your children on your way' and I went backwards to start again.  I couldn't get to the end and I woke up most frustrated.  






No prizes for figuring that dream out, I do feel that I get halfway to then be pushed back to the start and of course I am not actually in jail but sometimes the stasis that I have found my life in for two years now could have been a type of jail if I hadn't ensured that it wasn't and did everything to make sure that I got up, that I didn't dwell and that I just got out there.


Small wins, that is what it is about.  Remembering that lots of little things accumulate in the end.  The big prize?  Mayfair - with four hotels and a couple of kids but hey, we need to get past the halfway point before we can start thinking about that :)



Tuesday, 3 July 2012

Let me run!

In my last post about fear I touched on the concept of bravery and how it is applied but not accepted by many Mums in similar situations be that recurrent miscarriage, stillbirth or infertility or any of the other reasons we lose our children.  


The word just doesn't seem to sit well with us.  When someone has called me brave I have never replied 'well yes I am', never.  For me it seems absurd.  I knew that there must be another word that would fit and Twitter provided it.

I read a tweet that talked about "Endurance is just not the ability to bear a hard thing but to turn it into glory." ~ William Barclay
La Fortuna, Costa Rica. June 2012

Endurance, for me this is a fit, I feel like it is what I am doing.  I endure.  I appreciate that this takes courage, there is no doubt, but it is not being brave but enduring what is now in the hope that things will turn out differently in the future.

The Endurance Race.  Trying to be a Mum, puts all the rest of those fund-raising events in second place.  This is the real thing, I have chosen to run in the race and am not sure where the finish line is.  I know the realistically one of these days I will either get to it or quit the race.  Those are the choices and for now I run.  


I keep going through Doctors who don't know what to do with their conflicting prognoses and treatment plans.  I run past disappointment and pain and push past people who think that I am mad to keep going.  I need to run this.  So please, just let me run.......


Thursday, 14 June 2012

Fear is a Funny Thing

Playa Cocoles, Puerto Viejo. Costa Rica. June 2012
Feeling afraid again, but quite frankly you have to take the bull by the horns, then try and run with it.  It is the only approach I think that works, well not the only approach, but the best approach to stem the panic that wells if I don't do something, anything.


Fear when you do try again, fear when you don't - how silly is that?  Then you worry about the fear.  That is why fear and worrying about the fear is normal and should be acknowledged.  A saying I always remember from Seven Years in Tibet (I do enjoy Brad Pitt in small doses, but that is another story) is: 


"If the problem can be solved, there is no use worrying 
about it. If the problem can't be solved, worrying will do 
no good." ~ Buddhist Saying 

Baby Hummingbird being fed by Mum.
Puerto Viejo, Costa Rica
So, with that said I feel that I am somewhere in the middle of these two scenarios, which no doubt would lead to the same conclusion.  Acknowledging and not worrying about the fear is not being brave.  I never feel brave and nor do I want to be as I believe that in order to be brave you have to make a conscious choice as to whether you want to be brave or not.   I feel that there is no choice, that I am just doing what needs to be done. 

That, I think, is all the bits rounding around my head for today.  I can also tell you about the crazy dream I had the other night where I dreamt I was heavily pregnant and woke up in the worse mood imaginable.  Annoyed with myself mainly for playing cruel jokes and reminding me of that feeling which I have been comfortably enjoying not remembering at all.  

These are all the things I write down here, that I have no one else to tell, but where you can read them.  Where someone might hear them and let me know what they think about that.

And that's all I have to say for now......




Thursday, 31 May 2012

New Meaning to Names Out Loud

Some days I want to say their names out loud, but I can't. For me doing something 'out loud' doesn't always involve your voice.  I write their names whenever I can as big as I can, facing the sky so that they can look down and know that their Mum is here, thinking about them, always. Last time I felt I needed to I was in Paris, in the snow.  


This time was the big time, a deserted beach called Punta Leona, Costa Rica......I ran up and down writing their names over and over and there they stayed all day in the glorious sunshine for all to see.  You can't get more out loud than that.












Saturday, 26 May 2012

Right Where I Am.....1yr, 4mths, 2wks and 5 days followed by 7 months, 2 weeks and 3 days

Wow....that title is so long I am not sure how it will render.  I don't often linger on dates as part of progression and moving forward measuring time between the present and the past I have found for me to be not helpful.....it accumulates to a kind of dwelling that is not conducive to moving forward.  Really, that is where I am now, if you had asked me this time last year, last May I would have been in the early stages of pregnancy with Gabriele and desperately nervous with hope.  


Now I have the hope, I cut the desperate, another thing that I had to let loose, let go of.  A sacrifice that Mums like me need to do in order to go on.  


Now, right now I am ready.  I picked myself up, dusted myself down, picked up all the emotional baggage I now get to carry around and made a decision.


I stand firm and I stand proud.  No regrets and a whole lot of pride and self respect.  I have more than most and less than others but that makes me no more and no less special than anyone here.  


Hummingbird in flight. Costa Rica. May 2012
I look around and still see people in a way worse position that us and am thankful every day for what I have not what I have lost.  Yet what I have lost is great and vast and never ending.  The spot it leaves behind empty and lingering.    The love I keep on giving in their names plentiful.


So I take what I have learnt, now that I found the smile I had lost and look towards the sun again.  Just like the hummingbird in my picture this is a snapshot of me in flight and any minute I may fall, swerve or stumble but I will always be back.  


Right where I am.  Today. 2012.  

Monday, 14 May 2012

Cautious or Reckless?

When you are young you have the ignorance of youth behind you and are generally reckless, carefree, ignorant and often appear uncaring and unsympathetic to others. I don't think that is the case. Ignorance protects us and there is lots of stuff that I wish I did not know but am grateful for knowing all the same, if that makes sense.


In the spirit of 'Pura Vida' culture, Costa Rica May 2012
Recklessness is born from ignorance because if we do not know and understand the true dangers, cannot understand what might happen, or simply choose not to believe that it will happen then we are still able to turn and simply ignore what don't know or we don't want to believe. 


This applies to all areas of life but holds so true for babyloss Mums. A loss brings to fruition and makes us feel punished for all the things we feel that we chose to ignore or didn't want to see. We put ourselves in the 'what if' scenario where a million things playback to us and we wonder if we hadn't done them if things would have turned out differently. 


A terrible burden of blame that weighs heavily on top of the loss and feeling of failure we are already suffering as Mothers. This is of course all natural as we grow older, the more 'stuff' we read, the more we learn, regardless as to whether in our particular situations we have any pre-existing conditions or any of the other million things that can interfere with a successful pregnancy and childbirth we probably still would not chose a bungy jump or would steer away from passive smoke in a room (just in case). 


I believe that we need to remember these things but also to accept the unknown. So rather than a question of reckless or cautious I think this needs to be more a balance between being aware and knowledgeable and the acceptance that a certain amount of chance remains a big part. To also be aware of our own ability to be accepting of all the things we cannot control and not become paranoid over the little things that we can. 


Most of all when we forget to look around and instead of being scornful of all those that will never know all the nasty things we do and sad things we have seen use those moments to remind ourselves how their lack of knowledge protects them and take those moments to remind ourselves of the importance of finding our own balance.  

Sunday, 6 May 2012

Little Quiet Words for a Special Day

So today is International Bereaved Mother's Day (was called International Babyloss Mother's Day).  A special day for mums who can't share it with their children, like me.  

I never expect any rough little handmade cards with the scrawled words of a child on them telling me how much they love me.  No serviced station flowers that Daddy has to hastily buy because 'he forgot'.  No chocolates, no breakfast in bed.  

I have never experienced any of these things only intense loss and the utter feeling of loneliness no matter how many people are around you.

That is my reality and my life at the moment.  To simply miss my children and feel that pain in my heart when I look around and see, one by one, my friends have their own children and distance themselves from me, after all we no longer have anything in common, we can't even share the same Mother's Day.

Hurt, and pain and loneliness yet an undeniable, unfaltering solid strength and determination to carry on.

Sun sets on another day without. 

Villa Caletas - Costa Rica

So for all babyloss mother's those who have and haven't achieved their Rainbow baby yet I send my best wishes and love to them today xxx

Thursday, 19 April 2012

Postive Mental Attitude - Where did it Go? How Can I find it Again?

I don't know why I haven't written, I guess not much to say.  Lots of thinking going on up there in my head though as I ponder on TTC again.  I feel it is nearly time and I have decided on a  plan.  

Doctors are behind me it just rests on my shoulders to get to the happy and healthy mental and physical state before I dive right in again, head first.

How do I stay positive, well I am not always happy.  I am grumpy lots but below are some dos and don'ts for trying to claw back to a positive place.  So in order to achieve the aforementioned there are things that I must remember to do or not do, they are as follows:

DO NOT - do not save the songs you played at the funeral on your ipod so that they start playing just when you are on that final 1km of your 5km run in the gym.  It makes for teary eyes which is just weird in a gym.
DO NOT - weighing yourself twice a day in kgs, choose either the morning or the night.  I choose the morning as it shows me over a kilo lighter than the evening which is MUCH better for mental well-being.
DO NOT - dwell.  Dwelling on their cute eyes, feet, hands.  The warm soft skin before it cooled or their tiny little toes and fingers.  It was what it was.  I cannot get it back and reminiscing, whilst nice must be restricted to short periods.  Dwelling and especially wallowing is not allowed.  Not now. Not if we are going to go forward.
DO NOT - read blogs, get stuck on support sites and groups (including this one).  At first seeking solace and running to others that have been there is an absolute must.  Putting together a support network and relying on it to keep you going short term is necessity but there will come a time when it may become unhealthy.  Misery loves company - fact.  So as supportive as these sites are give yourself a break from them every once in a while.

One of those perfect sunsets before beautiful days. San Jose, Costa Rica- April 2012
























Now the DOs
DO - run to upbeat music.  Well fast walking with a little jogging if I am being honest but whatever you can manage do it.  Push yourself to pull on those trainers and speed walk to 'Titanium' or another such dance tune.  20 minutes, that is all it takes and little by little not only do you look a little like before but your head feels better, mentally I mean. 
DO - I try my best to remember that what has happened to us is bad but there are worse things.  Really there are.  But don't dwell on those worse things or you go back to feeling life is hopeless.
DO - say thank you for three things you have and that you are grateful for.  Do this everyday and try to find new things.
DO - help other people.  It costs nothing to be nice and there is only one planet Earth we should be far nicer to people.  Charities in particular are a good way to make you feel less worthless, you may have read my previous post about sponsoring a child with SOS Children's Villages, seeing her delighted every time I send her something makes me smile.
DO - hang out with strangers. Suppress the need to blurt out the sad story (happens to me all the time).  I think this is a tactic that guys use and I can understand why, it won't work if you are going to see the people for any lengthy period but sometimes or at least initially, for a little while, enjoy the fact that people don't know.  For that short while you can be normal and it is as great as playing 'let's pretend' when we were children - honestly!
DO - smile, it is allowed.
DO - give yourself a break.  Because that is allowed too.

There, I feel better just writing that and that is also ok. 

Friday, 30 March 2012

Nothing to Say except Massive Perivillous Fibrin Deposition (MFD)

I didn't write for a while, I realise that it has been almost a month and when I was looking back at my posts last night and having a think about why I hadn't posted all I could boil it down to was that I haven't felt I needed to.

This isn't a bad thing, actually I am still feeling a whole lot better.  Comfortable with phase Me Version 1.2, some days are still rough, those little tears still come but I don't get the overwhelming urge to chuck myself off a very high something somewhere.

A Cat.  Malta, March 2012
So blogging is the safety blanket that I haven't been clinging to quite as much.  Having said that a couple of days ago I was contacted by another silent Mum, someone who I have never met.  She told me that at 16 weeks pregnancy she is going to also have to say goodbye to her Rainbow baby.

When I asked her what happened in her first pregnancy she said 'Massive Perivillous Fibrin Deposition (MFD)'.  My heart stopped.  You see, they detect this in the placentas of my pregnancies as well, I quote:  

"The placenta has shown massive Massive Perivillious Fibrin Desposition (MPFD), a condition that has a well recognised association between poor fetal outcome with growth restriction and fetal death. It may be recurrent. The clinical characteristics of MPFD and chronic histiocytic intervillositis (CHI) seen in the placenta of the previous lost to this mother are remarkably similar."


So I am posting this as well, because I am kicking myself.  I didn't realise that MPFD is just as devastating, I have been left annoyed with myself, that I didn't manage to stop this happening to someone else again.  

So by posting the above I now make a footprint about MPFD online as well and also realise that my allergic reaction creates two horrible things. Eurgh!







Friday, 2 March 2012

Whole lot of cuddly, huggly bears.....a whole of of thank you

Evie May Bear from Aching Arms
Aching Arms sent me bear, actually the bear was from Evie May's Mum.  It was perfect timing as I have just finished transferring the boys' ashes from the cardboard tubes to lovely handturned wooden pots that I purchased in Costa Rica.

Handmade Urns I brought in Costa Rica.
Not only do I think that the urns are lovely but putting the bear with the urns brought a smile to my face.  The bear is very cuddly and the urns are so very perfect.

Guardians of the Urns

3 little Barely There Bears
I also wanted to show you some other presents I have received, some of you might have seen my first post about Barely There Bears back in April 2011.  Well my very good friend out of the blue, made me a Gabriele bear as well.  

Also a praying Beanie Bear called Hope was sent after I lost Gabriele........these are just some of the things I received, and that I keep receiving, you can see more here Ways I remember
Praying Beanie bear in the Boys Corner

All of these things have kept me going through this, the most difficult time of my life.  Thank you. x

Wednesday, 29 February 2012

Hang in There

Sometimes the things that keep you hanging on come from complete strangers.  This was a gift sent to me after I lost Gab.  I have it posted on my fridge where I can see it every day, some days I need it more than others but whenever I do need to read it, its there.
My fridge Mantra, a little reminder......to hang in there its far from over!
For the last few days I've really needed it.  I've been thinking a lot maybe a little too much as for now thinking isn't going to change anything.  Then I heard something else:

"Everything will be alright in the end, if it is not yet alright, then it cannot be the end....."

and as nothing is alright at the moment I can only conclude that this is far away from being anywhere near the end

Wednesday, 15 February 2012

Why are we waiting......

....And so we are! So you may be following this blog closely (I can only imagine due to there being now much else to do, however I hope it has kept you entertained and not too depressed) wondering why my wonderful husband and I have not managed to perform the same magic as last time three months after losing the twins.

Actually it is because we have been told to wait. Refrain is probably a better word, I call it reverse Engineering as the art of egg dodging is what we are currently practising the complete opposite of this time last year.

Why? Who are 'they'? 'They', dear readers are the Doctors that now command our lives, Masters of the Universe with no magic sword. My tricky situation has resulted in a lot of thinking by the medical community and I have almost been issued a charity belt while they have assured me that they will deliver a plan if I can just lay off striking at a fertile time for just a little while longer.

So far I have waited four long months and 6kg in lost weight to be exact.  I was told at the beginning of this week I need to give them "another month or so", I responded by saying they have another 10kgs or so actually but then I can't guarantee I can be bothered with Natural Birth Control Calculator any longer.

What are they doing???!! Trying to make a move on the Engima that is CHI.  The stakes are high I am being told and there is a real sense that they are trying to do the absolute best this time.  So I best be grateful.  In the meantime, I think about my boys and everything that this year hasn't been so far as well as everything I hope it will be.

Their names in the snow at La Louvre, Paris 5 Feb 12
I'm off for a bath, keep watching this space people today I am definitely of the belief that this is where the miracle will happen ;) 

P.S.  Adding a post script as many ladies have asked me about NK (Natural Killer) Cell testing.  The answer is yes I had these, and thyroid testing and hidden chlamydia as well.  All done privately, all came back clear.  NK cell levels are low.


Monday, 30 January 2012

Dark Clouds Roll In

I write, I blog, I heal, I hurt but still.....even now......I cry. 
At the most unexpected moments, the dark clouds roll in and that dark, sad feeling wells and overwhelms. 
Time stops. 
At that exact moment I miss them and it is too much. 
I miss them too much again, I miss them all, for everything that will never be and for never holding them and when I think of them I also cry in frustration at myself, with self-pity I flounder at my own ridiculous inadequacy at being able to do the most basic of female tasks.

But then the breeze stirs and the clouds clear, time starts to move again and so do I. Until next time.

Two birds loving each other
 Sydney, Australia November 2011
During those particular moments go back to being filled with that raw, coarse, despairing sort of pain, the same as just after the twins died.  But as last year progressed and before it got bad again I remind myself that I started not to mind those moments as they eased.  I am still waiting for them to settle down this time, it is taking longer.  I think a healing scar that gets reopened takes longer to heal so I am being ever so patient. 

 However this evening when I was discussing these spontaneous moments of crying on a FB group I remembered something that I almost forgot I used to look for during that manageable stage last year.  That when when those moments become less raw, less all consuming bitter, heart wrenching pain and frustration, I know I won't want them to go away completely.  They are like magic.  It is at those moments I think my boys are with me and it is them stopping time and pushing through, reaching out and touching me from wherever they are now.  As soon as it stops hurting so much and I can focus on the moment I will feel them again and it is then that the sorrow turns to comfort....

Saturday, 28 January 2012

Bupa turnaround!

Gerbers. San Jose, Costa Rica. Jan 2012
So following on from my rant last week I received a surprise telephone call yesterday afternoon from (drum roll please) a lady in the customer relations department at Bupa.  At first she started reciting an obviously, carefully worded script about how they simply couldn't cover me and all the reasons why.

I stopped and asked that for just one moment if Bupa could just stop and listen to me.  If I had had the time to prepare I would have worded it better, but instead I reiterated what I had asked for, how and why I felt I hadn't been treated well and what my expectations were.  

My objective: I just wanted to know if Bupa could pick up the costs for a private diagnostic consultation with a recurrent miscarriage specialist plus if there was anything else that they might be able to cover.

She responded "Really?  Is that all you were asking?" I reiterated "Yes, from the day I called you last year until now, that was all I was honestly expecting, a little bit of help, anything more you could manage would be a bonus but even that would be a massive help."  I offered again to send the debriefing summary letter which I received explaining the very complicated detection of CHI and what it meant after I lost the twins, she was the first person to say that "yes, she wanted to read it."

She went away and called me back 20 minutes later with an authorisation number for that private diagnostic, consultation and also advised that if any tests were required as a result of that consultation that they may also be able to pick up the cost of those, depending on what they were and how much they cost, but to let them know all the same. 

She said she read the letter and was so very, terribly sorry for what I had to go through.  I responded that the letter was only after my first loss.  Could she even begin to imagine what I felt like after it happened a second time?  I could hear on the line she was teary.  That is empathy, because sadly if my story doesn't make someone have that reaction I know they aren't getting it.

WOW, 10 months, 8 telephone calls and countless emails.  10 months of very persistent, tough-skin, resilient but calm (if not teary) conversations with Bupa.  I was determined to make myself be heard, not just for me but for any other poor silent Mum that turns to them, I want them to understand.

"Dear Bupa, 
If I you learn anything from this complaint for me please let it be that when a mother calls and her baby has been stillborn she is not looking for Bupa to be the miracle, she is looking for support and help.  

Silent Mums appreciate that they can no longer have everything, in fact we are coming to terms with living the rest of our lives knowing that something will always be missing, and a significant amount of the immediate future feeling like we have nothing at all to live for, so if we are calling we are looking for your charity.  

We won't know the words, we don't know what we need. We can't think, our heads are full of self-loathing words for our own failure and the word 'WHY?' shouting very loudly, it overpowers all ability for rational thought and coherent sentences.  

Listen to our story and please help us, don't tell us what you can't do.  Take a look at our cover and see what you can do.  This might be a little counselling or to cover the price of a private specialist consultation.  Whatever you can give us that might help us as we attempt to scrape the tattered strands of hopes and dreams back together is all we are looking for.  So please do whatever you can and never ever a simple 'no'"

Oh, and for all you other silent Mums out there also getting nowhere fast with exclusion 24 exception 2 of Bupa's policy the words they need are apparently 'payment reimbursement for a private, diagnostic consultation' with a Specialist.

Today is one year and three weeks since I lost my beautiful twin boys and three months since I lost my beloved Gabriele.  It will be a long, long time until I see any of them again, still coming to terms living with living without them.