Louise: What not to say or do...

This post comes from Louise's blog Team Lloyd. Thanks to Louise for allowing us to publish this here also...

I have over the course of the last couple of months made light references to some inappropriate ways that people have spoken to or behaved to Daddy Lloyd and I since Harry Lloyd was stillborn, the problem being that these have in no way been taking lightly by us. In fact the thoughtless acts have caused so much more hurt and pain it has made dealing with our terrible loss even harder. It makes us question ourselves, each other and who we can call our friends and family.

I have in moments of anger, anguish and turmoil turned to this space to be able to type out my feelings and it does in some small way help me understand how I am feeling. I guess understand is maybe not quite the right definition. It allows me to give voice to a part of me that is unable to speak up for itself at the moment.

I have been drafting this post for weeks now and to be completely true to myself I think it’s time to publish it. In some small way it may help me to not be so polite to these people when things are said that upset or hurt us. And when I say polite, I mean that when insensitive things have been said or asked I have found myself to either actually answer the question, defend myself, or have to justify why I am still not over, turned any corners, getting on with, or moving on from the loss of my son.

Through my career as a nurse I have been sent on many training courses which have focused on how to talk to parents going through a bereavement, through tragic circumstances and/or the time it takes to process this and the journey that an individuals grief may take. I remember being sat in a classroom and thinking to myself, how can people not know instinctively what to say. Surely you can just imagine yourself in that situation, know how you would feel and speak appropriately from your own emotions and if you can’t do that tell people how sorry you are, how you just don’t think you have the words. From my previous experience parents have always appreciated the honesty.

It is therefore shocking to be on the other side of this now, we are suddenly “The Parents” that have suffered the loss. It’s even more shocking to realise that people can say some of the most hurtful things whether they intended them or not. What is more frightening is if someone has made a mistake in how to say or show us their sorrow that they then have either needed us to point out how that act has made us crumble into waves of grief or they haven’t even realised how inappropriate and insensitive they have been even when it has been pointed out to them.  So incase you ever find yourself in this situation where you are not sure what to say to a friend, a colleague, a patient, a client, a sister, a brother, a daughter, a son, a mother, or a father then please try your upmost not to say these because the recipient may not be as nice as I have been up to now.

1) “I am here to do the horrible bit – you know the heal prick test” Yes it really happened. A midwife came into our house just days after Harry was stillborn carrying scales and telling us she was here to perform the heal prick test. We literally had no words.

2) “The labour? It can’t have been as painful as a real labour can it? I mean like the contractions you get if you have a full term labour” Scarily I actually started to answer this question, with my heart on my sleeve I tried to justify that my labour was very much as real as anyones.

3) “Are you still upset about that?” Yes. Yes I am still devastated and no we don’t know when this grief will end. If it ever will.

4) “It’s best I don’t see you right now because I’m heavily pregnant” If you are pregnant considering our feelings is great, it really is. But please be consistent don’t use this as a reason not to upset us then send an invite to meet up a day and a half later. We are likely to still be upset.

5) “You must have turned a corner by now?” Really? Are you the judge of how we must be feeling now, is there a limit on our grief? Is there a timeframe that you have in your head that we must conform too?

6) “Are you going to try again?” I can, to be honest even start to understand why this is asked, but honestly its a bit like asking a post partum mum “when are you going to have sex again?” – You wouldn’t would you because it’s so personal. Having to answer this question has made me cry, I honestly do not know and it’s far to early for us to even be able to start thinking about it.

7) “Was it because you had an amniocentesis?” Why because if we did it would be our fault we lost Harry? If we had been able to go through an amniocentesis we would have, to have gained a full understanding of Harry’s quality of life. We will never know when Harry’s heart stopped beating, but I know the last time I felt him move, really move.

8) “So what happened? There has been loads of gossip about you” I lowered my head and said there isn’t a lot I can say really. It’s never nice to know you are the centre of playground gossip. To be told that you are over losing your son hurts. I made B Lloyds and mine excuses and we swiftly left.

9) “You seem to have moved on” I particularly resent this remark. We do have to get up every day, and we do have to function, and breath and carry out all those mundane day to day life things. Just because I am pulling myself through each day, making it to the end of each day does not mean that I am not constantly thinking about Harry, remembering what we have lost, coping with not having our baby in our arms, discussing with B Lloyd what her brother would have been like, looking down at my post partum body and reliving the nightmare of the past 8 months. Just because you may have seen me laugh or smile, or write about cooking myself dinner most definitely does not mean I have moved on. We doubt we ever will. Life has a uncanny way of continuing we are painfully aware of that, understand that, but don’t assume that Harry will ever leave us, or be forgotten by us. Because he won’t.

The next set of please don’t do’s are harder to explain. These acts have happened and been directed towards us and have been as hurtful as the said word.  So I urge you to just think about what you might be doing and how it might be interpreted by a family going through something devastating like losing a child.

10) Don’t send a text/email reporting your own healthy 20 week scan - try a bit more of a personal touch with this one maybe a phone call to see how we are doing, and consider the amount of time it has been since the stillbirth. Consider a week to early.

11) Don’t hear devastating news, a life changing diagnosis and then less than 48 hours later forget that these parents, are returning to the hospital for further tests and ask them why on earth they are not at work.

12) Don’t comment on “wasting £40 on balloons” for the parents memorial to their baby.

13) Don’t ignore the huge elephant in the room if it is the first, second, third or twenty third time you have seen the parents. In all likelihood although your life has moved on their’s hasn’t.

14) Don’t say “Oh well I’m sure you will feel better tomorrow” Expect parents to be less inclined to be happy on their birthdays, anniversary days, or just any general day.  They probably won’t want to hear you will feel better tomorrow, because they probably won’t.

15) Don’t tell parents they will never have another chance of baby. Especially if there has been a genetic finding. The parents are unlikely to know the full implications for themselves at this point, you most certainly do not know this.

But at the same time there are many many things that you can say or do that although cannot change what we have and are going through, can show that you are reaching out and touching our hands metaphorically or physically. You can see the pain, understand the pain we are experiencing. That you love and support us. There has been so many little things that have helped Daddy Lloyd and I, things so simple that often friends or family will never quite understand how much they have helped or supported us. Acts that we cannot ever find the right amount of words to express our thanks and gratitude for.

So Do Say...

1) I’m so so sorry.

2) Admit if you do not know what to say.

3) It is ok to cry, in all likelihood so will we. Don’t be scared of our tears, it’s a release and we just don’t know when we will cry. It can happen at any moment, even after laughter. It can even happen on days I consider myself to be doing ‘alright’.

4) Do ask questions about Harry. One of the nicest questions I have been asked is “Did you get to spend time with Harry” I love answering that question because yes, yes we did and it was the most wonderful 24 hours. He is our son, our baby and it was the worst thing imaginable not to bring him home but as his mummy I loved those very special cuddles. That was our time with Harry and I want to be able to talk about it.

5) Do talk about random stuff, once that great elephant has been removed from the room we do still want to hear about this and that.

6) Do expect us to not want to look at/hear news of a friends/relatives baby being born. Ask us how we feel about hearing about so and so. Some days we might be happy to hear details other days we might want to decline. But we appreciate you asking us first.

7) Do ask to see us, but we may suggest you make the arrangements. Decisions are hard enough so taking some of that strain away is a relief for us. Make the most of the local Starbucks. It does coffee and cake and it just might make us smile.

8) Do just send random text messages/tweets/messages asking how we are doing.

9) Do simple things, like we were brought a LOT of M&S food just after we were home from the hospital, it meant we didn’t have to think about what to cook we just had food readily available.

10) Do hug us for that split second longer than you would usually, we will appreciate it, sometimes a hug can just lift us!

11) Do mad things like run half a marathon in Harry’s memory, donate money to Cystic Fibrosis, ask to see our pictures of Harry, plant roses in his memory. Talk about Harry, because we want to talk about him and we would love to talk about him with you.

I have now rewritten, reread, rephrased this post more times than I can remember. I really hope it is read and reread, and somewhere it helps someone know how to speak and act with a loved one going through something similar, it helps people to understand just some of the pain we feel daily, it helps me to get all of these feelings of my chest and above all it helps make the subject of loss and grief a more open subject so that when you are faced with not knowing what to say to someone you might be able to say or do the right thing.

Fiona: 'Capture Your Grief' Photography Project

The Capture Your Grief project was started on the Carly Marie Project Heal website to raise awareness of pregnancy and infant loss during October’s month of awareness. It is also a creative tool that can by used by those going through the journey of grief after the loss of a child to express, heal and share feelings. Each day has a theme and photos are shared as privately or publicly as people want.

I decided to take part for a number of reasons… I haven’t done a creative project for a while or used the lovely camera my husband bought me for our first (and much sadder than it should have been) wedding anniversary.  I’m reaching the end of the house renovation project that has kept me busy for the last 4 months and I am reaching the 6 month anniversary of the death and birth of our firstborn son Max.  I put death and birth in that order as that was how they happened. At 39 weeks and 1 day pregnant, my baby stopped moving because his little heart had stopped beating and 3 days later I gave birth to him.

At the moment my grief is capturing me, it is enveloping me in shroud of sadness and tears that are beyond my control or management, it is leaving me crumpled and broken on a daily basis.  Capturing some of these feelings in photographs and sharing them has been a mixed experience.  It has given me the opportunity to take more time to think and look back at Max’s story.  Getting out all the cards that we received and reading again people's kind words was a powerful reminder of how loved we are, but also that I have not heard from many of those people since and that I don’t really want to.

I had very little to add to the “what not to say” day as we have been so fortunate to have such lovely people around us.  Even our neighbours have managed to say the right things at the right time.  Lighting our candles together on the 15^th October brought home to me how much closer my Mum and I have become and how much I need her. But at the project goes on I am realising how near the beginning of my grief I am.

I have so many plans of things I’d like to do to remember him but have had time to do so few.  Sadly I know that I have the rest of my life to do these things and trying to rush through them is neither going to bring him back or take me to some imaginary end of grieving.

So maybe each October I will be able to add a picture or two to the album as I make more memorials and get through more milestones, and maybe one day I’ll feel that I have captured my grief and, whilst always being part of me, it will no longer define me.

Fliss: Letter to my Ayla

19^th September 2012 

My darling, beautiful Ayla,

A year ago today I was hoping that you would be facing a heart operation when you were only one month old.  What sort of a wish is that? One where you would still be here, you would have had a chance, a good chance, at life.  A year ago today I had no idea, absolutely not a clue, of the horror, the heartbreak and life and soul changing devastation we were about to go through.  From the moment that test showed two lines I felt so different than I did with your big brother.  There wasn’t the excitement I had with him.  Happiness – yes, I was very happy but I couldn’t shake this feeling that something wasn’t right.  I didn’t dread miscarrying, I expected it and was almost surprised that every week you were still there.  I didn’t want to miscarry sweetheart but maybe I knew that I would lose you in some way?

We had an early scan and again I expected to be told that the pregnancy wasn’t viable, there was no heartbeat, something.  The 12 week scan I expected bad news again but there you were waving at us.  But not moving, not like your brother did.  Your Daddy questioned it but the lady said it was fine, our first sign? She couldn’t do the nuchal measurement because you wouldn’t change position, the first sign you would be doing things your way.  I didn’t mind because I knew termination would not have been an option for us.  Even those scans didn’t relieve that worry deep in my heart.  Please sweetheart, don’t think I didn’t want you, I did, I do, so so much.  I knew you would be a girl but I also knew that you were poorly, on some level at least.  I never, not once expected you to be as poorly as you were but I knew something wasn’t right.

We sat outside the room where we were to have your 20 week scan.  The scan that people normally get all excited about, seeing their baby looking more like a baby, finding out girl or boy.  I didn’t I felt sick with fear, I sat there rocking back and forth, looking back now I knew so much more than I realised at the time.  That scan was the start, the real start of your story.  Your miraculous battle to make it into the world.

A year ago tomorrow we heard the words ‘Your daughter has Edwards Syndrome’.  We had no idea what that meant, how big it was. I hoped it would mean you would be disabled, need special care, have special needs, I never imagined, never, that it actually meant we didn’t get to keep you.  Babies don’t just die because their genes aren’t right, there must be something that can be done, surely? How little I knew then, how little I understood.  How much I know now.  Its hard to remember ever being that ignorant, that naïve.  Before we had that phone call, whilst waiting for the results I remember standing at the fridge thinking about the possible dilemma we could be facing, let nature take its course – give you a chance, or end your story prematurely.  Live with that the rest of our lives.  I stood there thinking this all through, round and round and you, you flipped inside me and gave me the biggest series of kicks and movements as if you were saying, no, shouting at me ‘GIVE ME A CHANCE, I’M HERE, I’M FIGHTING, GIVE ME A CHANCE!!’ and that’s when I knew without a doubt that there was no way, no matter what the diagnosis, there was no other option for us but to carry on, give you a chance, let nature do what it needed to.

It led to the hardest, loneliest time of my life.  I didn’t want to be pregnant anymore; I just wanted it all to go away.  Go to sleep and wake up when it was all over.  But I loved you, oh I loved you so much by then, I was, am, your mummy and I would do anything for you.  I do not regret giving you that chance, not at all and I never ever will.  My love for you is overwhelming, all consuming and everlasting, just like my love for your brother, because I am your mummy.  I can no longer do anything for you so for those 5 months I am glad I did everything I could for you.  I do things to keep your memory alive, show my love for you to the world but it’s not the same, you are free now, you don’t need me.

The guilt I felt and still do in some ways at not being able to protect you, make you better engulfed me for months.  Why couldn’t I make you better? That’s what mummies do, give magic kisses and cuddles, go to the doctor, whatever it takes to make their children better.  But I couldn’t, no matter how much I wanted, wished, begged, I couldn’t.  There was nothing I could do but give you a chance and hope, every decision I made I did what I felt was best for you and I hope you know that my darling and could feel my love for you every second of every day you were here and every second since you went, since we had to say goodbye and give you no more cuddles and kisses.  When I broke inside, never to be completely fixed again, to always have a hole in my heart, a piece of me missing.  Every happy occasion, smile, laugh tainted with the pain and sadness of you not being here, someone missing from our family forever.

So what do we do now? We miss you every day, we light candles, we send you balloons, we talk about you, to you, we see rainbows, sunflowers, butterflies, stars, blow bubbles and think of you.  We use you to drive us in our new perspective on life, we hold you in our hearts as we try to move forward, sometimes stumbling, sometimes slipping back and sometimes falling flat on our faces, but we get back up and carry you with us in everything we do.  Because we love you, forever and always,

Watch over us baby girl and know you’re always with us, 

All my love, 

Mummy xXx

Clara: Wave of Light 2012

As part of Pregnancy and Infant Loss awareness month, October 15th saw an international Wave of Light around the globe in memory of all the little ones gone too soon from our lives. People were asked to light candles at 7pm and leave them burning for one hour in the hope that, as different timezones hit the 7pm mark, a continuous wave of light would move around the world. This also coincided with CarlyMarie's 'Capture Your Grief' photography project where Day 15's subject was this event.

We took part in this event last year in memory of Molly and had a lovely night with our family, lighting candles and trying (but spectacularly failing) to set off a lantern.

Wave of Light 2012 has completely blew me away. Hundreds of people advertised the event on social networking sites and the response was fantastic.

This year we remembered both Molly and Grace and also two little stars we never got to meet. I change my profile picture and cover photo on Facebook. The amount of family and friends who also shared these pictures and used them as their own profile/cover photos for the event was overwhelming. We are truly blessed to have such a wonderful support network who continue to keep the memory of our girls alive.

We bought personalised Wave of Light candle holders from The Memory Tree and lit these out in the garden at my parents' house along with a numerous collection of tea-lights spelling out the girls' names (thankfully the wind all but disappeared and we managed to get them all lit for photos). My dad and niece also made homemade butterflies which had a candle attached to the back.

This year we also managed to successfully release some lanterns. One of the lanterns did not just have Molly and Grace's names on but the names of lots of other little ones gone too soon. I felt so sad writing all these names - far too many, and yet only a tiny tiny number of them. These names included those of my Aunt who was stillborn at 40 weeks over 50 years ago and children and babies of friends new and old.

As we released the lantern, shooting stars appeared in the sky. A wee sign perhaps? I like to think so.

Later on that night, we returned home and I logged onto Facebook. I was faced with over 100 notifications! So many of our friends and family had lit candles for the girls and posted these pictures for us to see. The girls were also remembered by lots of other mummies who were lighting candles in honour of their own children.

The response to Wave of Light this year has been amazing and overwhelming and I am grateful to everyone who took the time to think of our girls.

I have shared many of our photos in this post and I would now like to share some more from some of the girls I have met on this journey…

In memory of Melody Caitlyn and her friends:

In memory of Ayla Tia Baker:

Dedicated to Ayla Hope Reading:

In memory of Emily Smith born sleeping 14/2/11 and Beth Smith born sleeping 5/9/11 and remembering all our angels:

In memory of Ruaridh:

In memory of Holly:

In memory of Max Charles:

In memory of Olivia Louise Million,
Mummy & Daddy miss you so much princess,
What we would give for just one more kiss and cuddle,
Love you always & forever xxxxxx

In memory of our lovely little Laura, 20/04/2012-22/04/2012:

If anyone else would like to submit their photos for inclusion in this post, please email them to lossthroughthelookingglass@gmail.com and I will update the post to include them.

Helen: Missing

Driving this morning to my best friends house, a voice on the radio spoke of October 15th - Pregnancy and Infant Loss Remembrance Day. I did not know. How lucky I had the radio on. It stopped me in my tracks, as these things will always do - and for a short time shook again the settled peace of mind and positive demeanour of a normal day. She spoke of lighting a candle - at 7pm - to place in your window as a gesture of love and remembrance, for lost babes the world over. I will certainly do so. Five candles - and a time of our lives which became a recurring nightmare and hopeless situation for all involved.

My story is one of many, thousands, millions the globe around. A form of loss so cruel and commonplace, yet so taboo - even in today's open and liberal world - that there is no conventional way to grieve. Loss is a terrible thing, whenever it occurs - but the loss of a child, who we will never know, is the loss of a hope and a future. It is devastating in the cruelest possible way. My story has a happy end. I have a healthy boy and girl and I am luckier than many. But I know what loss is.

There are children who will not join me on the beach, who will not hear bedtime stories and who will never go to school. I love them none the less. A votive in my friends house bears the inscription, "Hope is eternal - all the darkness in the world can never extinguish the light of one small candle". If this story is your own, then October 15th will mean something special to you. Never lose hope of a happy end for it was precisely on the point of giving up that our luck changed. We have a son and a daughter who are strong, who are growing up.

Life moves on. But I will not forget. And neither will the rest. In your thousands - I extend my hand to you. Because you are not alone. Your neighbour, your friend or the woman on the street, knows a little of your pain. She knows loss of her own, and today I light a candle for you all - heartbroken families, missing babes and the healthy, living children you are yet to love and enjoy... x

You can read more about Helen via her blog All At Sea

Fliss: Baby loss aware?

Two years ago, would I have had any idea there was such a day? No, I don’t think I did, maybe a ‘ah, how awful’ and then immediate dismissal, I went back to my life.  My awareness was the bare minimum really.  I knew babies died, I think.  Not babies in this country though, not unless somebody hurt them surely? Then it was murder and we all know how wrong that is.  Or there was something so rare wrong with them that it happened to a handful of people a year maximum.  Babies wouldn’t die because the cord was round their neck, the mother had caught an infection somehow, that their chromosomes were wrong and there was too much information in their little bodies for them to grow up and most definitely not through doctors and nurses making a mistake so monumentally tragic that it took the life of a baby and the hope and joy of their parents.  That would never happen, would it?

Even last year I’m not sure how aware I was of baby loss and how common it actually is.  I knew then that our baby; the beautiful girl growing inside me was destined to leave us.  But I still lived in perpetual hope that she’d be ok, the results were wrong.  I knew deep down they weren’t, but when you’ve heard the words ‘Edwards Syndrome’ and ‘Trisomy 18’ for the first time and don’t truly understand the devastation that will come with them then all you can do is hope.

Hope, sometimes is the only way to keep going, keep functioning, to survive.  Every step we received more bad news, we lived in ‘worse case scenario’. Anticipatory grief they called it. I felt it was more suspended animation.  I watched the world carry on, happy times, sad times happening in other people’s lives and I felt nothing.  I was in a glass box that I couldn’t get out of but I could see it all.  Detached from reality, from the world, never to be the same again.

So no, I don’t think the day even registered with me, I wouldn’t have been able to acknowledge Ayla if I had, because she was there, but not there.  I hadn’t lost a baby at that point, what was happening to me had no name.

A week before Ayla was due I stumbled across something on the Internet that would turn out to be on of my biggest saviours.  Finding the Pregnancy and Infant Loss online forum and connecting with so many amazing women on there saved my sanity at times I am sure.  To be told ‘It’s ok, that’s normal’, ‘we’re here for you’ and simply ‘I know’ brought more comfort that I can ever express and I will be forever grateful to all who held out a virtual hand of support and comfort to me.

This year today has had so much more meaning to me.  My awareness has increased dramatically; my knowledge is overwhelmingly scary at times.  I fear for pregnant friends and I am cross with people’s naivety which borderlines stupidity at times.  But am I cross or am I envious? I will never feel that again, I can no longer convince myself that babies dying only happens in other, poor countries, in magazines or at the most never to people I know.

I do know now, I AM one of those people.  I now get to live in the altered world that others don’t understand, where I can only speak completely freely to the ones who live here too.  Never to return but to find a new way forwards a new ‘normal’.

Yes, the awareness of baby loss has quite substantially slapped me in the face.

Gemma: One step forward and two steps back...

I thought my loss had finished, that I had reached a neat place at the end of my first year of loss to finish my book, to finish my story. I didn’t want to write a long drawn out book that was massive and a chore to wade through, I wanted to write a little book of my experience so that my gift and loss of Isaac and the feelings and emotions that I lived through each day were not wasted and served to help another grieving parent in the wake of a baby loss.

I intended to start my next journey of my next pregnancy in another book – a lighter book filled with tentative hope and expectation, sharing my worries for my rainbow baby throughout the 9 months of pregnancy and on into a live birth, a happy celebration of the gift that the love my husband and I shared resulting in a baby that finally I could bring home and nurture; A child that would keep me up all night crying instead of lying awake listening to the silence that my little lost boy left behind.

My journey of loss has not ended at Isaac, and I feel that it is important to share this here because its something that has happened; a missed opportunity for another child.

I remember writing about starting my medication for my pro-lactinoma and I think that somewhere deep down I had relaxed about getting pregnant. I still wanted to do so desperately; with every single fibre of my being I wanted to be pregnant again and yet I knew that it would take time for the medication to kick in and have an effect.

Little did I know that actually it must have worked straight away; I was pregnant – unknowingly without a single thought that it may be true. I waited impatiently for my period to come, writing a formal angry letter to my consultant explaining that after a year I felt that enough was enough; too little was being done. My close friends tentatively talked about feeling hopeful for me, that the possibility was there and yet I felt an urgency to have another child in my womb that I couldn’t explain to myself and yet somewhere I had resigned myself to waiting; waiting to get the dose of medication right, waiting to get my pro-lactin levels down and waiting to ovulate again.

It came as quite a shock therefore when my husband asked me to do a test; I remember looking at him suspiciously. Andy never wants me to do a pregnancy test as it is him that has to deal with the heartbreak each time that a line fails to appear; he bears the emotional scars from each time he has watched his strong wife crumple to the floor in despair. I know that it has hurt him, more than he has ever shown each time I had talked to him about failing him, letting him down and so I quite willingly took the test; quite prepared for the first time to get a negative.

It was never going to be a simple thing with me as I managed to wee all over the stick and I was convinced that this invalidated the test and so when a second blue line came up I was fairly certain that that was my fault for being a total plonker and I was aware that I would pay for that stupidity later when the next test came up negative.

I remember feeling the hope creep in as we wandered around the town; I was impatient to get the test and get home. I could see Andy watching me and I knew that I was getting giddy; “could I be? Is it possible?”

We got home and several tests later we had three positive pregnancy tests and I cried; I cried huge tears of relief that my body had not failed me. That I was pregnant, that we had managed it again. Suddenly everything looked brighter; the sun seemed to recover the shine it had long ago lost.

I hadn’t realised until that point how the colour had seemed to seep out of my life; I could still see colours but they had lacked beauty. We hurried to get a doctor’s appointment and also a midwife appointment; this time we saw a wonderful midwife who was bright and chirpy and seemed to be just what we needed and we booked into an early scan for peace of mind.

I did another pregnancy test for comfort expecting the date to show 3+ and it didn’t, it remained on 2-3 weeks and I was filled with a sense of doubt right from the start.

On the day of the scan we were anxious and yet I felt stronger walking back into the antenatal clinic, the last time that I was there I had learned that I had lost my Isaac, and yet I felt like he was with me again as I carried his baby brother or sister.

I have tried to visualise positive things as I moved forward with my grief; trying to believe that if you visualise and believe you get what you want that it will happen and yet I had worried all the way through about a miscarriage; the scan showed no baby we had a sac but nothing else and the hospital diagnosed a blighted Ovum; where everything forms except the baby so all the pregnancy symptoms are there; the morning sickness and the increased smell and feeling hot.

There was a chance they told us, that we were too early and we had our dates wrong so we had a two week wait while we prepared for the worst. I remember the woman being so sympathetic and sad that I was forced to take control of the situation. I remember saying to her “This is not the worst thing that can happen to me, that has already happened and if I can live through that I can live through anything” and yet she still gave me the sympathetic look that makes me angry and frustrated. I have never wanted people to feel sorry for me, I have never felt I deserved that; I don’t want pity. At times I have yearned for understanding and support but never pity; whether I respond differently following Isaac’s death I don’t know. Perhaps I feel less; I certainly have not cried over the loss of this pregnancy as much as I expected to, I have wanted people to treat me as normal and despite waiting for the breakdown the flood has never come.

The two weeks were cruel, we had shared our news with a few close friends and family and we had to tell them that again it looked like no baby would be coming home. We tried to be positive, I still referred to sticky bun as a baby and I made plans to drive at the Christmas party.

I knew deep down that there would be no baby at the second scan and so the news didn’t quite take my breath away as I had expected it to; instead I have been thrown into turmoil at reliving Isaac’s death – the decisions that had to be made – waiting for a natural miscarriage with my high prolactin levels didn’t look to be an option and I wanted to avoid any surgery if possible and so I had to opt for a medically managed miscarriage; the first tablet we took bought back the day Isaac died so clearly I thought I would pass out. The consultant was asking if we had any questions and I had none, “we’ve been through this before in a much more painful way” I told her “I’m disappointed more than anything” and it is true.

I have cried; I must have but the only times that I can remember have been tears for Isaac; I cried when I went back to the hospital on the day of the miscarriage because it made me ache for my boy so strongly that I thought I would fall apart again. I miss what he would have been, though with no children I am not sure what stage he would have reached – would I have been pregnant with a tottering baby keeping me rushing around as little grubby hands grabbed at the cat, the dog and everything he shouldn’t have.

I feel the hole left inside of me opening again, he doesn’t say Mummy or daddy and squeal with joy.

With a medically induced miscarriage I had to collect anything I passed to show the doctor, so I was aware that there was never any fetus, and I think this has helped. More than anything I miss the opportunity I have missed rather than craving for a baby which never was, I think until I see a baby and a heartbeat on a scan I’m going to struggle to have any expectations again and yet I still feel better; I feel a bit more myself again and a little lost all together, lost without a baby to fill my arms.

I am sad that my sticky bun never had the chance to be a baby; and is a little star somewhere looking own on what might have been and I’m sad that Andy still has not had the chance to be a father; I swing from wanting to rage that I have had my share of grief and why has this needed to happen to me and yet I know that there is no answer to the question of why me other than why not me? I am lonely again in part because I feel a strange creature, I feel distant from my friends and family and the want to be closer to people after Isaac died has not returned as it should have, instead I am careful; keeping my distance to protect myself from further hurt.

I am aware also that my attitude to the recent events have proved incomprehensible to some friends, I went into work all through the miscarriage apart from on the days that I needed to be in hospital; I have talked about it openly and honestly but I always draw back to the comfort that there was no baby, no child that was born forever sleeping; just a short burst of hope appearing in my life again and I was glad to see her; I keep waiting for her to leave again and for despair to pour into me once again and yet it doesn’t, hope is still here. She isn’t with me as she always used to be, but I can see her in the distance and I feel finally that I am going to get there I can see that if we had made it to our 12 week scan and discovered the absence of a baby that there would have been more time to build hopes and expectations and yet for me this miscarriage was a tiny drop in the ocean, perhaps if there had never been Isaac this would have been worse; but the difference is huge for me – incomparable really and I feel bad for that, like I am abnormal. For me the difference is like stubbing your toe compared to breaking a limb; and I look at women who have battled to overcome an early miscarriage and feel perhaps that I am shallow that I have not grieved; my womb is empty again and I certainly feel it; and yet I feel that it is a small success in truth; even to have gotten pregnant after 14 months of hoping is a step forwards for me, it’s a step towards the future and is my body telling me “hang on in there, I haven’t given up!”

Nicole: Sometimes, I Just Miss Him

Losing my son has brought all sorts of feelings.  There's sadness, and lots of it. Sometimes it's a gentle thought about how he should be here, sometimes it's a bigger rush of grief - a tidal wave that threatens to overwhelm me.  There's guilt too - oh, masses of guilt.  All the things I should have done, would have done, if I'd known what was about to happen.  If I hadn't been so pliable, so calm and willing to believe the medical staff.  There's anger too - at the hospital, at myself, and (unfairly, probably) at the people who say truly stupid things in their attempt to make me feel better.  At the people who won't talk about him at all, and those who haven't supported me.

But sometimes, I just miss him.  It's there in the background all the time of course.  A nagging feeling of something missing - the things I can do because he's not here, and the things I don't do and never will. Sometimes the missing him is huge, like I could drown in it.  It can be sparked by walking into the room that was all decked out ready for him, now crammed with junk.  By seeing a friend's child who would be the same age, an age  Xander will never reach.  By spotting that cool superhero top his dad would have wanted to buy for him. 

Sometimes, there's no catalyst.  The missing him hits me like a bolt out of the blue.  I feel suspended in it, and it can last minutes, hours or days.  I've come to accept that missing him will last all of my life - whatever turns my life takes, whatever else I gain or lose, the feeling of missing him will never stop.  It's been hard to accept that, but I now know that the amount I miss him is equal to the love I feel for him.  Huge.  Universe-sized. Limitless. Infinite.