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!”