melody and me

The Last Goodbye…Part One

2012

 

Thursday 12th April 2012 I had to make a decision, a decision I had no idea whether I would regret or not. What was right, or wrong?

A painful decision either way to make.

We walked over to the chapel of rest our hands held tight, my husband had already made his choice and was set.

Yet to me, it felt impossible. But in truth it shouldn’t have been difficult; I should have known instantly, whether or not I would see my baby one last time.

Our names were called, and in that moment my decision had been made, I had changed a million times. We rose to our feet I took my husband’s hand; we kept close together and slowly followed the smartly dressed man…

The room was small, softly lit with candles to add to the effect.

A small table in the centre of the room, it was painfully obvious what was stood in front of us. It looked no bigger than a memory box, but definitely bigger than a shoe box.

The next question “Are you ready?” I know took us by surprise. I had almost forgotten that there was another person in the room.

Were we ever ready?

But this was not something we could put off, because we knew that the next day would be too late.

We nodded, holding each other tight, tighter than we felt strong enough for.

Terrified we had made a wrong choice.

The crochet blanket was gently pulled back, the smartly dressed man left.

“Have as long as you need”

But we needed forever, he couldn’t give us that.

We stepped forward slowly, peeking in not knowing what to expect.

A warning, a guide but nobody is ever the same.

There she lay peaceful, make up made her look perfect.

Almost like there was no reason for her to be there, if only.

Surgical tape had slightly embedded into her baby face, and the stillness that was blindingly obvious, no breath sounds no delicate baby snore, just the deafening silence.

We exchanged glances, and questioned

“How was this fair?”

“Why the hell us?”

“What had we done?”

“Was this all my fault?”

We didn’t know if we were allowed to touch her or get too close.

I wanted to cuddle her, but was afraid I would hurt her, although I knew that was now impossible.

We placed our photos and drawings the children had asked us to take, I stroked her face, suddenly remembering that her warmth had long gone, it had been replaced with an icy cold glow. It caught me off guard.

We still hoped that somehow she would open her eyes.

We were willing her to breathe. I held my breath in case I missed her chest rise and fall, in case she was moving. But that rise and fall didn’t appear, stillness replaced that wish.

Talking to her, telling her how much we loved her, how much we missed her already, wanting everything to be just an awful nightmare.

We felt lost, we held on to each other’s gaze, it was then we knew the time had come to tuck her in to her blanket for the final time, to kiss her good night for the final time.

Knowing we would need to remember how she smelt, how she felt, all in one movement.

It was our one chance.

It was our one final chance.

I can’t remember whether her coffin had a plaque, and if it did I don’t know what it said.

 

We lifted the blanket a corner in each hand, tears rolling down our faces we covered her, tucking her in replacing the blanket with each other’s hands walking back wards giving her a lasting Good Bye.

 

For the next day it would be the last……

 

 

melody and me

Day 35. And Then She Was Gone.

Her Dad phoned in as he always did. I don’t know why; but I never liked phoning in, he was far braver than me. She wasn’t feeling herself at 11pm the night before, but after the past week, it was kind of expected. They were going to wait and see for the Dr at 2am.

I was just waking up when he came into the room to wake me to say that Melody was feeling a little poorly over night – they were considering placing her on to ventilation. To me that wasn’t feeling a little poorly; this was something more.

I leapt from my bed and we tried to decide what we would do. We had my older two children; we had plans to visit just me and my eldest daughter. It was then we decided to get their Dad to have them while we went to see what was happening. We fully intended on returning to collect them to go and visit her.

We had a phone call asking if we were going to make our way over to the hospital, we said yes.

Dropping the children off as soon as we could, ensuring them that we’d be back soon, we would all get to see her later. Another phone call came; asked us how long we would be.

My husband and I talked on the way there, we were fully expecting them to tell us that they were going to transfer her to another hospital; they were just waiting for us to maybe sign forms. That is all we were expecting.

Reached the car park, where I placed a Facebook status, asking for positive vibes and wishes for this little girl, who we thought was going to be moved.

We buzzed ourselves in, the atmosphere was different; even before we had walked into the actual unit – something was off. We entered the room, saw boards around one bed; then headed the opposite direction to where she had been the day before. She wasn’t there. Where was she?

She was indeed in the bed space behind the boards. There were no other parents, there seemed minimal staff; we stood by the nurses’ station and was greeted by her paediatrician.

“Melody became very unwell overnight. It is expected that she won’t survive.”

What the actual fuck?!!

My legs turned to jelly, I hit the ground but I remained upright – somehow. She was still talking, I couldn’t quite tell what she was saying; I just looked towards the screens. She was in a bed space that she was never in, even when she was first born – she was now in the highest of point of intensive care.

I couldn’t stand the sound of her voice any longer, I wanted to slap her, grab her and scream in her face to tell her to stop – to stop lying, to just shut up.  I needed us to be with Melody. We walked behind the screens, to find a nurse performing chest compressions. She’d had her heart restarted five times in the final hours.

“Do you want to hold her?”

Of course, I did  – I didn’t want to let her go. How was I supposed to let her go? How exactly was my heart supposed to beat?

They gently lifted her from the incubator, leads and tubes covered her tiny little body; this tiny little ventilator up against her face. How were we supposed to do this?

Melody was gently placed in my arms. She was so peaceful, she didn’t look like she was dying.

I asked, begged, in fact, to be told that it would be some sick April Fool’s Joke. I looked around at each of the faces, none could make eye contact – none could tell me that they were lying; nobody could tell me that it was all going to be okay. Nobody. How was it ever going to be okay again?

I passed her to my husband, I couldn’t hold her; I am her Mum I was meant to protect her, I was supposed to do everything in my power to keep her safe; it was my one job. I couldn’t just sit and feel her life leave me, I couldn’t just watch helplessly as her restless body took its final breath.

The ventilator was removed, they were pressing the end, watching as we nodded to say stop. I didn’t want them to stop, how were we meant to say stop?! I knew I needed to hold her; I asked for her back, I whispered in her ears, desperately hoping it would help or that she would hear me. Begging her to stay, promising that I loved her, if I loved her more would she stay. Begged hard until I could no longer find the words.

They stopped, the little piece of plastic was removed; we held her together. We cried; they cried. She remained silent and peaceful. I could hear them whisper that she was gone – but she wasn’t she was still in our arms, she was STILL in our arms; she hadn’t gone anywhere.

Her heart stopped and everything changed.

She was meant to be our Rainbow Baby; our honeymoon baby. Instead, she became the baby who never grew up. Our missing note.

The start of something new.

Decode – My Life Before

Decode; is possibly a strange one if I am honest. Decode if you don’t know is a Paramore song, it was part of a soundtrack to the first Twilight film.

Different Life

 

I remember picking up the book, just before my first marriage ended – I can’t even remember why I was drawn to it. It wasn’t long after that my marriage broke down that I needed to rediscover who I was. I found it hard, of course then I didn’t really know what a broken heart felt like – I just thought I did. While I scrabbled about to suss out where I would go in life I found comfort in the form of reading, then friends introduced me to the films. I became lost in the hype of the fandom, lost in this new thing that wasn’t associated with my now new life, at a point where I found it really hard to ever believe that anyone would want me. Then he did.

 

Perfection

Once we’d found each other we had that amazing love (we still do, of course). Life seemed relatively uncomplicated; getting to know each other, holding hands all of the time, lots of public display of affection. We found that stereotypical old fashioned love, everything was perfect. We had a new life ahead of us, a fresh start.

 

Decode

Where I think, I am going with this. Today I came across the song again; not heard it in years an in instant it took me back to when we first started dating; to when we were just a normal couple. I had the two children from the marriage before; we’d spend our evenings either together planning a future of marriage and children, or enjoying a social life. Everything about that song reminds me of how our life was before.

That is how I see my life now, before and after Melody. We spent a measly eleven months of our marriage, wrapped up in honeymoon bliss of promise and hope to our new addition to our new life together. Just eleven months, before the people who lovingly took their vows changed forever. Something as simple as a song, can take you back to somewhere completely different from where we are now. When I played this over and over again, or obsessed over the films and the books; I never expected to have this innocent bubble burst. It may sound silly – it probably is – but it was all a completely different time.

 

My Love

I think I will always worry about the impact the death of our daughter has on our marriage, we really were newlyweds; I have never been able to even enjoy looking back at our album or talking about the celebrations (she was conceived at our blessing, which was held three months after our official wedding day); a big black cloud forever lingers around the thoughts of our special days. We have discussed vow renewal maybe one day, but I guess it wouldn’t change a thing – new memories maybe. I am mostly glad we have each other.

 

Walking down memory lane, listening to the songs that take you right there wishing for that life again, the care free with a hopeful new life – it was easy to have that innocence; that bubble.

I just want us not to have been bereaved parents for most of our married life so far; it is what it is. I wish Melody would have survived, that Decode was part of a love story and not that of a soundtrack of our “before” life.

“I chose the title “Decode” because the song is about the building tension, awkwardness and confusion between Bella and Edward. Bella’s mind is the only one which Edward can’t read and I feel like that’s a big part of the first book and one of the obstacles for them to overcome. It’s one added tension that makes the story even better.”

 

— Hayley Wiliams, in a statement posted by Stephanie Meyer.

 

 

melody and me

Dream Sequence

I met her in my dreams the other night; this is something which I have not done in a very long time.

As much as you’d imagine a dream to have a happier ending it didn’t, but it also wasn’t a nightmare either – at least not the ones I had come to known in the beginning. Death had still found her, but the dream brought me a second chance.

The Dream

A phone call came. I don’t like phone calls; no idea why I am just one of those who just isn’t keen. It was the hospital, a voice I recognised with a background of an echoed reception area –  I knew the sound well; behind the voice, I could hear the long beeps from machines, the long beep which used to tell us she was on too much oxygen – that sound seems to stay.

There had been a mistake, she had somehow been left behind at the hospital; forgotten maybe and that the funeral we thought we’d had for her was just an empty box. Nobody knew how or why it had happened; I was then asked whether we’d like to see her. It was hard to know what to decide; I guess even in my dream it had been years – but we agreed, surely they wouldn’t have offered if there was nothing to see.

When we arrived the people who stood before us seemed shocked; they began to explain that she was somehow perfectly preserved like no time had passed since she had. I wanted to see. The people parted ways to reveal a baby, laid in a cot – peaceful and unmoving. I looked at her Dad and he me; I had to pick her up. As I held her she seemed a little bigger than I had remembered, but it was her, the slight tape embellishments on her cheeks, her little nose much like her siblings, and her fine strawberry blonde hair that covered her head.

Never Let Go.

When she died, we didn’t know that we could have spent more time with her or that there were still more memories to make. I knew this dream would end, but I also knew I had to make the most of it, of her. We bathed her, not once putting her down, kissed her forehead – knowing that her temperature wasn’t right, only made me feel more determined to warm her with love and kisses. I was able to snuggle her in bed, which I never got to do. To sit and choose a coffin whilst holding her in my arms – morbid I know, but it is what is meant to be done when it is one of the last things to do for your baby, we never knew about the choice of tiny coffins. Everything was to happen quickly, I didn’t once put her down. the weight of her felt comfortable in my arm – I didn’t want to let her go again.

But I did. I was able to place her into her new pink coffin, placing her gently on to cotton sheet we had placed for her. It felt all so different.

I got to hold her longer and kiss her more, her eyes remained closed.

As my eyes opened.

 

 

Dreams.

I think I speak of her so much (when I can), during my awake time; that I guess I don’t need to be searching for her in my sleep too. My brain has become so accustomed to knowing that she isn’t with me, that I guess my sleeping mind doesn’t need to search for something my awake mind has gotten used to. I have never dreamed of her as a growing child, again maybe because my brain knows she has gone. I simply can’t imagine what she would have been like.

In the beginning, the nightmares came, mistakes before she died, the most obvious one about – were they 100% sure that she had died. Those dreams faded into nothing, they all stopped. I am glad in a way that I don’t have dreams about who she could have been. I’m as comfortable as I can be with not imagining that.

 

I don’t know why I suddenly had this dream after all this time; I know there is probably the message of regret and things we weren’t able to do with her. For that night, those fictional moments I was able to hold her again.

 

dreams

Melody and Me

Memories. The Weather

The weather is always a big conversation opener, particularly at the moment whilst we have the snow – being in the South West of England, it is the first time since 2013 that we have had any snow to actually speak of. I was pregnant then, with Melody’s little sister, the year before I was pregnant with Melody.

There was snow annually; I remember not wanting to go out in case I slipped – something I have done a lot in the snow; I didn’t want to risk hurting my unborn baby. I remember looking forward to our new baby’s first experience of snow how she would react, lots of wonder.
She never got to see the snow, but the following year I was pregnant again unable to risk the snow again; fearful of making those magical snowy plans.

The winter always reminds me of her, as she was alive and a fully expected baby; it was exciting; which is exactly how it should be when you have a growing bump.
We do obsess with the weather as a nation, most often it does bring people together; where the snow reminds me of her pregnancy; it also brings some memories of her life on the opposite scale.

Heatwave

In the year that she was born – 2012, the whole time she was born we had the most amazing weather, an unusual weather for the time of year (February-April). It would be the hottest March on record. The day she was born was a glorious sunny day, I could remember just being able to see what the weather was doing through the window from my bed; I wish I had taken pictures of our surroundings that day; it makes up part of her life.

The Spring had come early that year; I guess that is why we associate Daffodils as her flower.
There were days when we had to be away from the hospital – often at their request, we’d walk into town which is a fair walk away, particularly when you have had major surgery, often without a cloud in the sky it was beautiful blue skies for days on end, we could sit in the hospital grounds to enjoy the sunshine. I wore vest tops and flip-flops; whilst my husband had his sandals; it was hard to imagine that I even got sunburnt in March.

Apparently, it is such a rare occurrence (at least according to weather records); I always enjoy associating the heat wave with her life, she was able to feel the sun on her face a couple of times too whilst she was out having a cuddle; I am glad she did. It made our visits easier; it helped us to be able to find space away from the building.

It rained on the day of her funeral, just as we began her celebration – it then became the wettest Summer on record.
These little memories are a big deal; these are the nicer ones.

memories the weather

Then she was six.

Then She Was Six.

Today is her birthday, a day where I am meant to share little things about her – a before and after picture, a celebration of life and of growth. I thought about sharing her birth story to give more words; but it is one I have told so many times, people are bored. People expect me to have moved on, grief is boring it is ugly – nobody ever knows what to say – I am so open I guess that, I assume people are okay with me speaking her name; I mean I am. But they’re not, not really; especially as it is six years. But to me, each birthday, each day that leads to her birthday and then those days which lead to the anniversary – they feel like six weeks; to everyone else, six years is a bloody long time ago – for that I am painfully aware.

It is six years today since she was born in a rush; I remember every single minute – I try hard to savour it, just as I do my other children’s births. It is what we Mums do; her birth story should not be any different. But it is.

I probably should have moved on, and I have to some degree, of course I have it isn’t as dark as it used to be; but I am still allowed to feel like shit – not all the time (even if it were all the time that is okay too); the hardest thing to process, something I will never truly understand, is why our seemingly healthy baby died.  I’m allowed to feel pissed about that. About why our baby had the best odds, why being a girl meant she should have come home, why every bloody thing was just a little too late – she never got to come home.

I do wish sometimes that I could be understood; just a little about why I continue to talk, to mention her name, to be angry even all these years later. I guess it is that unimaginable, that it makes it easier for people looking in to move forward, to forget; to tire of the baby who never even came home who died years ago. “She should be over that.”

 

Everything about the 26th February should have been different; for so many reasons. Yet today no candles will be blown out, on the cake which we have all eaten that she will never get to taste; no presents to open or badges worn to school. An empty space in the classroom, yet nobody would even notice.

birthday

But we do, we know that there should have been a girl today turning 6.

If Only.

Her Birthdays

One

Two

Three

Four

Five

 

The Waiting Game

Melody and Me

A Photograph. Infant Loss

In parenting there is such constant competition.  
My baby took their steps before yours.  
My child read a whole book before yours. 
I’ve done so much more as a parent than you. 

 

It is hard to know that even in the devastating community of baby and child loss that even then there is some kind of competition.
There shouldn’t be.

I remember feeling particularly bad because all other baby loss mums had a shelf or something in their home to remember their babies with, I didn’t.. But now I have and I don’t really like it.
Over the course of the years there’s been a lot of mention about the quantity of photographs I have for our daughter, the clothes, the memories we were able to build.
How I’m lucky I got to spend time with her.
How lucky to have a “million” photographs of her.
(of course it isn’t a million, maybe just about 50).
I know it is 50 more than other parents, but it also 50 less than others too.
I feel sad that I am made to feel less because I have these photographs, these photos like I said others may not have.
When the first photograph was taken, not by me but some random nurse, I’d not even met her, I didn’t know that the photograph that arrived in my room was the only photograph I would have knowing she was alive at that point.
I was stuck to the bed on drips, body still numb, still really poorly and I was desperate to see her, to know she was OK.
John went to see her, midwives went to see her EVERYONE went to see her, they returned with photographs and even a video.
They’re precious to me.  The first few photographs at that point were the only things keeping me going.
Once she’d come off the ventilation, I knew then I needed to document everything about her journey.
Her life, because at one point, she was coming home, these photographs were meant to be her story to tell her at her 18th birthday.  They were never meant to be.

“In Memory of.. “

I have empty folders of days I’d not photographed or days where I wasn’t allowed to visit.  To me now that kills me that I don’t have every single day of her short life.
She was not meant to die.
I don’t have cuddle cot photos, or bed sharing photographs, we didn’t get chance to spend extra time after she died, we didn’t get that option.
So when I share the photos I have it isn’t to hurt anyone else, for attention,  it is because it is all I have, I don’t expect other people to comment on “how lucky I am to have these photographs”.
I hear this often, as well as “at least you got time to with her”.  Same with everyone else it was never enough.
Well because if I had a choice, the same choice anyone in our situation would have, I’d swap the photographs for her any day.

Every single baby/child loss parent is in this shitty time together. Nobody’s journey is worth less than someone else’s because of how different the situation is.
I’m not lucky I got to spend time with her.
I’m lucky because I GET to be Melody’s Mum, no matter how long she lived.
This photo is her second photograph, (her first she is completely naked flat out in her incubator).
Here she is Two Hours and Fifteen Minutes old. There are a few taken close together.
At these moments I did not know how many more pictures I’d get.
Whether this would be the only way I’d have seen her alive,
I didn’t know a thing, apart from she was stable.
But to me it could have meant anything.

 

 melody and me
This is her second from last alive, (her last is with the three of us broken beyond repair, watching the vent being removed from our precious daughter).
When this photograph was taken, she was 34 days One Hour and Ten minutes old.
We had no idea that she would die.
We had no idea that this photograph was going to be the final one of our then normality.
We had no idea that this photograph would turn into a part of a memorial.
We had no idea that LESS than 24 hours after this photograph was taken she’d be dead.
We have photos of her after her heart stopped beating, and in the chapel of rest, only but a few have seen that one (the hospital ones only myself and John have seen those).
I cannot bear to look at them, this may sound particularly ungrateful to anyone who hasn’t got photographs,
I can’t imagine that loss, that feeling.
But to me Melody is so like her sisters, and even her brother at times, seeing her in such a devastating way, only reminds me, not just of the loss of Melody, but the unimaginable anxieties that come with being a bereaved parent.
I don’t just see her, I see them too.
I cannot imagine ever not having photos, or for the parents that couldn’t have a footprint…because there are footprints just too small.
But please don’t make my memories, my pain any less because I do have the photos.
Because if I could choose to have any of this shit, I’d have chosen not photos and no footprints just to give her one last cuddle and one last kiss.
I’d have never let go.
Melody and Me

Different Year – Please Bear With Me

When I woke up with my pregnant bump on January 2012; I never imagined that we’d have a funeral rather than a baby. And since then January has always been different.

I like January, my son is a January baby; there are lots of magical New Year’s resolutions and plans for the year ahead. Some see it as just a day while others see it as an opportunity for a fresh start. January 2012 gave me her 20 week scan photo, and a birth date to plan for, even a start of a birth plan, with a growth scan date to break the wait up; that January we were so excited celebrating the fact we’d be having a baby *that* year. I remember it so clearly – well, almost.

The New Year brings us to that step onto the uphill climb to her birthday in February; March the month she was alive and the crash of April remembering her death, and the aftermath.

Each year I say to myself I will be okay; I will talk less, I will try to forget a little; make it easier on myself on other people around us. But I can’t. I try to keep busy – this year I have already made plans of redecorating and throwing myself into birthdays, her siblings’.

Believe me I have tried to be “over it”, to move on “I hate to see you hurting.” I don’t want or need treatment to forget her; that is definitely not something I want (at least right now).

We’re coming up to the 6th year, and this time of year for me sucks. No matter how busy I make myself; how much fun and laughter I have – it sucks. 80% of the time I think I am ok, I do just fine; but then there are other parts where I don’t and can’t cope; it is hard for people who haven’t switched their child’s life support off to really understand why six years down the line and I find certain times of the year shit.

I can be a bitch, over emotional, quieter than normal. But I can also laugh until I cry, until it hurts to breathe. It is hard.

With it being six years I can also know when people are fed up of me; they’re not too obvious, to give them the benefit of the doubt they may not even realise they are doing it but I know; like when the messages of comfort are less, people stop mentioning her, or squirm and fidget when I do – the eye rolls.

Because that’s enough now isn’t it? I have told her story so many times, shared her a lot, I have been open.

While I am being a bitch, over emotional, quieter than normal, who also laughs until I can’t breathe, I am trying to hold on the only memories I have, the only timescale of months that I can connect with her. The scan, her birth; her discharge date and cuddles, her death, her funeral and the May due date she never reached. They are all I have on repeat; I have nothing new to say – to most they must be boring.

But it is all we have.

I don’t always bring her up to the people I meet, in fear of scaring them off; but I am not strange because later down the line it is discovered that our one of our daughters died.

So please bear with me, while I wade through these next few months coping the only way I know how to by winging it and remembering to breathe.

Just don’t walk away. Please.

 

We’re not ill. 

Melody and Me

Grief Timescale – We’re Not Ill

My grandparents are in a cemetery; my Dad is in the same one, burial spaces decades old. I don’t visit them often, not because I have forgotten them, or I am finished missing them; their cemetery is just outside of our town, it is not always easy to pop out to visit them.

I talk about them; share memories. People listen and they too share memories of their missed loved ones.

In the years since I have lost my grandparents, since I lost my dad, since my mother lost her husband; it never ever occurred to me that there was a time limit of how we grieve.

Of course the loss of these people, were – are very different to losing our daughter. Losing her and watching others go through the loss of theirs; the way in which society brushes off our losses.

When we visit our daughter, which we don’t very often these days; we do at least for special occasions; like her birthday, anniversary and Christmas; more often than not carnival and Halloween too. As we walk through the cemetery and see beautiful fresh wreaths places onto graves whose names have faded, or are decades old; still loved and still very much a part of whoever tends to said graves. I would never judge, or have ever thought of this as an odd thing to do.

I certainly would never question their grief, or that they still tend or speak of them. Every single person’s grief is individual, we all wear it differently.

What has led me to here? Well I came across a news article about a Mum wanting to decorate her baby’s grave. This isn’t an issue to me, or to anyone other than the family. But I made the mistake of reading the comments from the general public – our society; whilst I have no idea who the family involved are I think it effects every single bereaved parent.

There were comments after comments about the Mum needing help, counselling; how she should concentrate on the children she does have. That seven years is too long to be grieving or visiting a grave.

I don’t think it is because I am a Mum who has buried her child; but it would never, ever cross my mind to question the grief of anyone – to judge another person visiting a lost loved one.

Can you imagine going to someone and passing comment about how they visit their husband too much? Or that they talk about them too much now that they’re not here.

I genuinely cannot understand why society feels the need to judge on such a personal thing, an emotion often raw. I am five years down the line – almost six; but there are some moments that will catch me off guard and take me back to that raw emotion of hearing the words. “She isn’t going to survive.”

With me being five years down the line, I have questioned myself about whether I talk about her too often; whether I visit “too much.” I have also often wished this had never happened, that she wasn’t my daughter; I have also debated about never visiting her grave.

But I can’t simply block her out; and I am no one of those people who doesn’t believe she lives within us, if you have followed over the years; you will know this is something I have always battled with myself about.

Letter M in a garden.

When I don’t visit I get that huge guilty feeling, especially if it has been weeks on end; I also feel guilty if I don’t take her something; I know she doesn’t know any difference –  and I am painfully aware that she is dead. But I am her Mother; just as I feel guilty when I can’t watch my son’s choir concert, or forget his University show.

The times when I can’t afford to buy my eldest the latest Now album; or the days when I accidently don’t treat them all the same.

So, when I read how society believes I should be how they think I should be over her by now; how visiting however many years is unhealthy. Let me tell you, the only thing that is wrong here; is not that I cry for her occasionally; that I miss and talk of her.  Please help me to understand.

It is that she IS dead; there is absolutely nothing I can do about that; but I will forever be her Mum. I can’t cuddle her or tuck her in to bed, I can’t see her walk across a stage ready for her Nativity; or hear her sing out of tune.

I can’t have a school report; or see Christmas Cards for her from her friends. I’ve never held her hand to walk across the road; just like she will never have a sleep over or taste ice cream.

She, we will have never experienced any of these things.

So if I am still visiting her grave; or including her this year – five years on or in 25 years; please don’t judge; be kind; don’t assume that I am ill.

I am her Mum; the only thing that is wrong about this is that she died.

M in forest

Post-Neonatal. Fight or Flight

When we walked out of the hospital after the death of our daughter – Post-neonatal death; I never expected to spend the years afterwards in what feels like a fight or flight mode. Nearly everywhere we turned there was nothing, and I have said this many, many times. I think I have repeated this, because I cannot get my head around how little support there is for babies who lived, then died, the ones who never came home.

Fitting In

I have searched for statistics, for facts for something for us to fit in. Yet there’s almost nothing. It is bloody lonely.

 

Where exactly is it we fit in? I know people can’t help it, because I guess babies who are older than 28 days are more than likely to live – or are they?

I feel as though I am on a losing battle, talking about her. Even if I screamed in my biggest voice, would I ever get listened to? I know I do in a way; because people tell me so. But in a way to make change, to make neonatal and post-neonatal losses heard, to make their statistics drop.

If I have to be a bereaved Mum I at least want to fit in, to feel less alone. Can you imagine what it feels like to be told that when your baby dies, there seems to be a cut off for support, because she was too old? Or that we were bumped off or down the list? To have a session where not only was it in the G.U.M clinic (sexual health), but the person listening wasn’t massively interested in talking about our loss; but had an opinion about falling pregnant again afterwards.

Breathe.

Awareness

I have so much I feel I want to achieve. I have let fear get in my way for almost six years now.

Our daughter was born due to HELLP syndrome, a severe form of Pre-Eclampsia, a condition that is quite clearly STILL under researched – When I say clearly I mean being told by two different midwives that you don’t get pre-eclampsia before 28 weeks, the second time being after the death of our daughter (she also stated that you don’t get it twice). It can kill.

I want to help. (There have been in talks about case studies).

I suffered Hyperemesis throughout each of my pregnancies, each getting worse the more babies I had. Another under supported condition, a condition that leads women to abort, commit suicide or die from malnutrition, (a contributing factor to the death of Charlotte Bronte). That and living with mental and health issues afterwards

I will help.

Melody died at 35 days old, she died from overwhelming sepsis. 35 days. Post-Neonatal Death.

She had a good chance of coming home, but she didn’t.

I want to help lower the mortality rates of these babies. I want to show their parents that they really do matter; to be recognised more.

I hoped by setting up Little Daffodils that I helped a little in making that step towards supporting people, making sure people are never left alone.

Post-Neonatal

There is so much I want to do, but have no idea where to begin. I want to change so much, the maternity services, the bereavement services. I would like throw the text books out of the windows and burn them, because no BODY is the same. Women and families should not be treated as such.

Tonight I feel a little angry at the world, and how cruel it is to feel essentially thrown out into the cold, when all we ever wanted was the warmth that we watched others have*.

I need to now figure out the next step.

But maybe when I feel less angry.

Ideas are welcome, links to places I can contact. I want to do more.

*I was lucky to have online forums, people slate the online community a lot, but if I hadn’t had them I honestly do not know where I would have been.

 

Thank you for reading.

Post-Neonatal awareness

 

Clear and Let Go