Category Archives: Post neonatal death

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

A Line of school shoes, with an obvious gap.

A Missing Future, An Empty Shoe Box

Back to school

As the whole nation prepares for the return to school, including myself. There remains the large hole of a missing child.

Helping Melody’s little sister get ready for her new adventures in big school; the preparation of shoes, and uniform; making sure book bags and P.E bags are ready.

Missing

When we missed reception in 2016, I thought it would have been one of the last big milestones. But it isn’t, not really. It is never going to be about losing “just” a baby. You lose not only yourself, but a future, dreams. There’s a personality missing, a child whose name will never get called in a register, a child who is never spoke of by another child, or wanting them to come to play. These children who stand in the playground, who sit in the classroom, will never know that there is a girl who should have been there. A girl who should have been friends with them. To them, to their parents she never existed. Our daughter to the class of 2028 will never have existed. In the playground I’ll never be Melody’s Mum.

The Shoe Box

A show box with the letter M in it.

There’s one extra thing we’re having to sort for the first few days of school, a shoe box to fill with memories their favourite things to let their class learn a little bit about them outside of school.

Melody lived in a box, she sleeps in a box, and has two memory boxes full of things to help us remember her.

She doesn’t have a box of her favourite things, of her hobbies. It has nothing inside. No stories to tell of her family members, no adventures to share. Photos of her growing from a tiny baby to a girl entering into year 1 are missing, they will always be…missing. I don’t know her.

 

As if she never existed

I’ll fight to keep her memory alive, continually retelling the one story I have, the short story of her life. It’s all I have but for the children and parents going into year one this week, for the children who become the students of the class of 2028. To the men (or women) she could have met to one day marry. An aisle she once stood at, will never be the aisle she could have chosen as a step towards her future.  To the adults of the future. Melody never existed.

Not just the baby

She is not just the baby we have lost, we lost her whole life. Everything she could have been – gone.

 

Family Holiday Minus One

We always knew that anything we would ever do as a family, would be filled with bitter-sweet emotions that come with knowing that there is a tiny human missing; nothing will ever fill that gap, I guess that part we didn’t really expect, but there is and we cope with that permanent void.

I’m not really wanting to talk gaps, I’m wanting to share a little moment whilst on holiday, which had us all chuckling.

I’ve begun taking a collection of photos to use when I write for Still Standing and for this blog too, something for Melody but without using her photos all the time. Whilst I am “lucky” (definitely wanting a better word), to have so many of them, I worry about repeating them too frequently, especially with the two areas I write in. I don’t have aging photos, so I’ve a prop in the hope I can include her a little more.

We went camping in Oxfordshire, days out – making memories, what better way to begin this project than to start while on holiday.

This one in particular I had placed my prop, ‘M’ onto this rather pretty looking Wishing Well, I have spent many times wishing that things were different, I know nothing will change, wishing is all I have.

I took a step back to capture this frame, as I looked into my camera my youngest daughter – Melody’s sister runs into the shot, she grabs the ‘M’ and throws it straight into the Well, fortunately it wasn’t deep, there was a grate covering the bottom, all the children yelled baby’s name, the prop was retrieved but it made us all laugh, it got me thinking; imagining this prop was replaced with her (I don’t think this by the way, ‘M’ is not Melody, I know I don’t have to justify myself – but still).

I closed my eyes and everything was different.

I imagined this five year old strawberry blonde haired girl, sitting on the wall of the well waiting for her siblings to crowd around her for yet another photo opportunity, only for her little sister to push her in the well. She wouldn’t have been hurt, she’d have been embarrassed, and annoyed for a few minutes, would have shouted at her sister, then the laughing would have begun, the whole picture would have been different, five laughing children, no props just them. It would have been a moment that would have been brought up in conversation about our break away.

But of course, I am here Day Dreaming, it isn’t okay, it is what it is, a day dream. While there is no changing what has happened, and that Melody isn’t here; but I can share this moment of laughter that included all of my children, for the very first time in 5 years 4 months and 23 days I actually felt her with us, I felt like I had five children that day.

I always say I have five children, I have never shied away from having five but the truth in my head has always felt there to be just the four of them, which to anyone looking at us can see. It felt so wonderful, to feel her there with us, it has been something I thought would never come; it is strange trying to bond with someone who isn’t here, to bond with a child who never properly felt like ours in life or even in death over the years. Very difficult to explain fully, because even I can’t quite understand that part.

DSCF3473

Not only was a new memory made but I finally feel like Melody’s Mummy.

 

Melody and Me.

xx

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Melody – Remembering Our Daughter.

I love taking photographs; even more so since Melody died. We have few photos of her, but we do have them, but in her albums there are days missing. Days which I can’t piece together what she did, moments of her life missing, memories which have faded for me.

Photographs now are of great importance to me. I try to take them of my growing children as often as I can, but I always try to capture a moment in every day, albeit small or something huge.

I don’t want to miss a thing.

In the weeks which followed the death of our daughter, we began to find comfort in seeing her name. I have always struggled with signs from her, struggled with the thought that “she is all around us”. I have worked on this over the five years, it isn’t something that has really changed, and I don’t think it will.

So, I love seeing her name, it kind of began with our memory box which my online birth group friends brought for us; her name as clear as day on the front of the box, inside the box is a tiny cushion with her name on too, it gave her presence.

Various social media pages began offering personalised graphic pictures, where they put your baby’s name on a picture, so I began “collecting” these, different designs – some were themed like for Christmas or Easter, some just had a nice or meaningful background; each included Melody.  

I can’t quite remember which picture started it off, but I remember we visited a place in Devon the first summer we were without her, there’s a section named “Melody Close”, seeing her name felt like she had been included in our day out. 

From then we began writing her name in the sand. Every beach we visited we wrote her name, close friends began to follow suit, places we had never heard of or would dream of visiting. Having the imagination I have, it is almost like she is having her own adventures, traveling the world, going to places we’d never dream or afford of going.

By our first October, Melody was soon included in the Pregnancy and Infant Loss Awareness Wave of Light, her name placed by candles alongside many, many other babies’ names. I was a beautiful thing to know she was remembered in this event. The following summer I placed a status on my Facebook, asking if people would write her name in the sand at the beaches they visited, it was a way of giving her a footprint to walk in the sand; she never had the chance to feel sand between her toes, this would have been the only way.

Many pictures came through; it was touching to see the many places she was being remembered, for the moments her name was being written, she was being thought of. Sad as it is as time as moved forward, the moments of thought can lessen. As her second birthday approached, we didn’t know how we would ‘celebrate’, we found the second birthday harder than the first; from a friend’s idea from her daughter’s birthday the year before, we asked people to write her name, not just in the sand, but in any kind of way they could think of. There would be no cards, no party or her choosing a birthday cake. Our friends and family came up with the most wonderful designs and ideas – there were so many and no two were the same. It meant so much to see people had taken a moment out of their day to do a little something for her.

We are five years into this journey, and over the course of the years the photos don’t come as often. But the ones which arrive mean so much to us. We can’t physically make memories with her, but we can somehow make her memory last. When the days in which is feels all is fading her name appears, someone has taken the time to remember her.

We fill scrap books when we have time, rather than photo albums.

We have several which we love; the children are often the first to want to include her name in a place we were visiting.

She has been taken to Florida, Indiana, France, Cornwall, Australia, Scotland, and Devon to name a few.

She was remembered by a couple we have never met on their wedding day, this one landed a spot on our wall in our living room.

Here are just a few.

We named her after a character in the Doctor Who series, when she was born we knew we had picked the right name. 

We just didn’t know she would end up traveling on her own. 

I don’t want the only place her name is written is on her headstone. 

Her name should be surrounded the beauty she deserves. 

Why I don’t like to Visit

I must admit I have visited her on a weekly basis during the past few weeks, more because I would be walking passed the cemetery, so it wouldn’t have been right if I didn’t pop in to see her.
But generally, it isn’t a place I like to be.

Visiting

We go to visit around her birthday, her anniversary; we give her a carnival theme in September, which changes to Halloween and then Christmas.
We visited her a lot in the beginning, at the time it felt right, it felt like it was something we needed to do; like a guilty feeling for not spending time with our daughter. But as time moved on, the more difficult it became to visit; I’ve never found the spiritual side of this loss, I never felt that she was always around me… I’d completely lost her. To me she had literally moved from one box to another, only her new box was this ugly thing that is now buried 3ft underground.
I don’t like visiting her because I know where she is; I know and can imagine where she is lying. No amount of what people tell me, that she isn’t there, I know she is….I watched them lower her into the ground.

Ugly

It probably is a form of torture, imagining the totally ugly side of death, of her death. But there isn’t anything exactly beautiful about having a funeral, a burial for your child.
I used to feel guilty about so many things, about how I chose to repair myself; not visiting on a daily basis or talking to her for hours on end. She could once hear me, when I spoke to her she would respond to me, now – well you know.
I’d have nightmares in the beginning about her final resting place, awful horrible nightmares; most rarely appear now, I don’t think they will ever go away.

Good bye

When she was alive the word ‘Goodbye’, couldn’t get past my tongue, it was a word in my head that felt so powerful, that I felt scared to use it, every evening when we left the unit, or every tie during the day, I’d say “See you later.” Or “See you tomorrow.” Goodbye always seems so final, her time spent in the unit she was doing well, so I never really knew why I was so frightened to use it.
Then I had to say it, I had to say this final word, as she slipped away I had to say it, amongst the “I love you.” And “please don’t go”. Goodbye had to now roll off the tongue.
When I, we visit her at the cemetery, I now have to say it, I have to say goodbye to her, I have to walk away, to leave her there, to turn my back on her every single time.
It isn’t how it was meant to be, walking away each time, even now still hurts, she’s still dead, she still should have been here.

Love

Visiting her on the surface, it seems okay, I take photos of her flowers, of her new toys…I still like to buy her things. But the inside it kills me. This wasn’t supposed to be our life. But it is – she is where she is. I don’t have to visit her to show that I am her Mum. Doesn’t mean I love her any less, I just have to try and live every day for her, make each day count, even the ones where we have Pyjama days.

Inside Out.

I originally shared this post here a year ago. Working on this year’s Guest Post, I wondered what I had written for this annual project. I don’t think this feeling will ever differ…

Right Where I am 2016 


Inside Out. It’s a Disney film, about emotions from the emotions themselves.

Joy, Sadness, Anger, Fear and Disgust.
All important roles in how our moods take us. Most importantly how we cope with things that change our lives, and almost break us.
Having seen the film, several times over now, I can understand the feeling of losing one’s marbles.

My personality islands collapsed, the day she died. No warning, I couldn’t stop them. Lost, forever.

For me, 4 years into this journey, I can associate myself with all 5 of the emotions. Some less than others.

Disgust, I guess how some parents take their precious children for granted. I feel disgusted in myself sometimes. When I have days, where I’m not quite coping. I shout, I snap. I somewhat alienate myself.

Fear. It goes without saying, the fear of not only losing my other children, but my husband, my friends. Fear paralyses me at times. I have to control it. It can take over, but it isn’t allowed.

Anger. I don’t get that raw anger very often any more. Because we should have had a different outcome, the anger was eating me, tearing me apart bit by bit, as if the bigger picture of our daughter dying wasn’t enough, but the anger, drilling through my very being. Don’t get me wrong, I get angry, really bloody angry at the whole having a dead child, I’m allowed, but it’s far more contained. I’m lucky to have a husband who will let me release it, by talking, crying. It’s not often any more.

Joy and Sadness.
Together? In the head of a bereaved mum.
Maybe.
As above I said my personality islands collapsed, fell silently away, as she died in our arms. There were no controls, no brakes. It happened.
I’ve had to start again.
New hobbies, new train of thought, new friendship circles, and how I spent my time with those friends, family. The shape of our family changed.
I never expected joy to be part of my emotions again, ever.
But I refuse to have Melody be the little blue person.

This time of year, I find just as hard as the part of the year my brain associates her with.
September to May. There is always something attached to her, from a positive pregnancy test, to her birth, her anniversary, discharge date and due date. I no longer make a big deal over the smaller dates, I always will for her birthday and anniversary. But they’re all still related in some way.
So, when June arrives, it’s like a strange come down. Every thing I do gets touched by sadness, core memory after core memory affected by sadness.
It shouldn’t be. I’ve, we’ve been punished enough.
I do believe joy and sadness can coexist. There’s a balance.
But people have to remember everyone grieves differently.
If I want to ball my eyes out 4 years after my daughter dying. I will. I don’t need therapy or medicine.
But laughing doesn’t mean I’m over her either.
I’ve found a good balance, albeit right or wrong. It is right for me.

Right now. I’m missing Melody. That will never change.

She is my bundle of joy, cuddled in a blanket of sadness.



April Fools Day. Why We Still Grieve the Life We Lost.

Bliss.
Everything about the life we led was normal. My second marriage, had led us to our honeymoon baby, our first together, even our rainbow baby after our two miscarriages. It wasn’t an easy pregnancy, but this was nothing new, I didn’t “do” easy pregnancies, but my babies came home.
I passed the “magical” gestations, the 12 weeks, the 20 week scan. Once we hit 24 weeks I discovered this thing in which many pregnant women celebrate, a milestone to the name of Viability Day or “V” Day. I’d hit this, and passed it, once I had passed this, we were on the home straight..right?
It’ll never happen to me.
But it did.
Everything will be fine
When she was born she fought to the best she could, the best her little body could cope with. She defied what the doctors had warned us about.
Feisty, strong willed tiniest of beings, with a huge personality, who wanted to be in the 80% survival rate. She never spoke, we didn’t spend much time with her, but I knew she wanted to come home with us. She loved a cuddle, she loved her family’s voices, her brother and sister were her people.
She wanted to join us.
As I documented her progress, announced her discharge date, jumped for joy as she hit 2lb, celebrated as my milk had arrived to feed her.
Everyone, on a daily basis would tell us, she’d be fine, she’d be home in no time.
That their baby, or their friend’s neighbours’ baby was born with less odds, they were fine.
She was a girl, she had the better odds.
Everything went in her favour.
But the odds failed her.
She died.
I relaxed.
I had allowed myself to breathe a little.
To love this tiny little miracle, who had greeted us well before her due date.
Listened to people tell me they wouldn’t buy her gifts because they’d jinx her.
We watched as people turned their heads away in disgust at her early birth photos.
The bond hadn’t come in the theatre surrounded by a sea of blue people,it hadn’t really come whilst she was inside my womb.
There was always something different about the bond I had with her, whilst I was pregnant with her.
But as the reality had begun to sink in, that our micro premature baby would come home, it was then I allowed myself to love her.
To truly know she was mine.
This tiny little person, a whole 9 inches of her was – is ours.
I fell in love with her.
Through this clear plastic box, blanketed with wires, rather than Brahms Lullaby, there was a tune of beeps, and alarms that made Melody, her.
Made her real.
I allowed myself to get excited, for the future, a fresh start.
The longing to leave the NICU behind us.
This wasn’t how we wanted to leave the NICU.  
Dying wasn’t part of the plan.
Sepsis Stole Our Baby.
April 1st 2012
We walked into NICU, parents of a five week old premature baby, a feisty, full of character little (tiny) girl.
Left heartbroken, lost and confused.
We were (are) still her parents, only we left the hospital as bereaved parents.
It wasn’t supposed to be like that.
I slammed my breast pump and hard pumped milk into the bin, defeated with no idea what the hell to do next.
I cannot even begin to describe the true feelings that appeared that day.
When people use the cliché, “there are no words”.
There isn’t.
I’ve spoken about our loss so much, how I could describe it. But I can’t.
Not the cold harsh truth, because I can’t even make sense of it, of any of it.
I cannot put into words.
I think if I tried, it would only belittle it.
The extreme pain, the intense loss.
Everything should have been different.
It really should have been.
Sepsis, snatched her.
She had a chance, but it took her.
We lost her.
Aren’t you over that now? 
Why I Still Grieve The Loss of Our Daughter.
It has been long enough.
Why do you keep torturing yourself?
Why do you keep boring us?
Stop being so morbid?
You didn’t know her very long, 
hell you didn’t get to know her at all, it wasn’t as if she came home.
She’s our daughter.
I lost the opportunity to co-sleep.
To breast feed without a tube (she actually did try to latch on, but was too little).
No chance of tasting food.
She never got the chance to leave the hospital. 
Well of course she did, just not the way we wanted.
She did have the sun on her face a couple of times, but she never felt the breeze fluff her hair or brush her cheek.
We never got to hear her voice, or an attempt at a laugh.
I cannot remember if I told her I loved her, I did when she was dying.
But when we had the best times with her, I cannot remember.
I’ll never hear the words from her, or watch her face light up as I walk in to the room. Or watch as she raised her arms for a cuddle.
I’ll never know if she would have been a Mummy or a Daddy’s girl.
Her brain scans had come back clear, but we could never have known how clear until she reached a certain age.
We saw a smile, maybe even two.
I can’t remember if I kissed her nose, my favourite place to kiss her siblings.
She never heard the Gruffalo.
Her first steps were never taken, her first words never spoken.
An empty chair in the dinner hall at school.
The missing friends.
As I spend time with children her age, I’m no longer filled with pain, but wonder; wonder who she would have been.
I grieve the life, the future we have lost.
Gone.
I grieve the 5 week old baby, who should have turned into a toddler, and an infant, into a reception child.
I grieve because I cannot comprehend what has happened, why it happened to us. 
I’m allowed.
How has it been 1826 days, since I last held her, felt her breath, her warmth?
How has it been 1815 days since we last saw her and gave her a kiss good night?
I’m allowed to be in the dark, because losing a baby, a child who we had come to love isn’t fluff and rainbows, it is black.
Time doesn’t heal, and there isn’t a reason for everything.
I’m allowed to be happy, excited about life.
But I am also allowed to scream and cry, without question or the need to be offered medication.
There is no cure.
Be patient.
Be our friend.
Be kind.
It may be 5 years, it’ll be the same in 50.
She’ll always be our baby.
We’ll always be minus one.
I never wanted to say goodbye. 

A photograph.

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 photos 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” photos 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 photos, these photos like I said others may not have. 
When the first photo was taken, not by me but some random nurse, I’d not even met her, I didn’t know that the photo that arrived in my room was the only photo 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 photos and even a video. 
They’re precious to me.  The first few photos 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 photos 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 photos, 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 photos”.
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 photos 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 photo, (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. 

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 photo 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 photo was going to be the final one of our then normality. 
We had no idea that this photo would turn into a part of a memorial. 
We had no idea that LESS than 24 hours after this photo 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 photos, 
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. 

What If

On their own what and if are insignificant, tiny little words.
But together are heavy reminders of things that might have been. 
What If. 
What if is something that is engraved into a person when they lose someone they love, of course not just a baby, so many missed opportunities, occasional regrets. 
What If. 
When I lost Grandparents, a parent there were many what ifs but over time for me they have passed, my Nan had Alzheimer’s Disease, so sadly inevitable that we’d lose her at some point. She had days where we visited her, spent time with her thinking, that would her last day, but when it came her final moments she sent alone, I missed her last breath by moments. But in all honesty because the disease hadn’t taken hold for me there wasn’t really any what ifs. 
When my Dad passed, it was sudden, for a time there were the usual, What if he hadn’t taken my brother out? What if he’d been at home, or surrounded by people? Would there have been a chance for him?What if my relationship with him was better? So many what ifs, but in time they have faded, occasionally they creep up, but they never feel like a punch in the gut; like the What Ifs that come with losing Melody. It doesn’t mean I loved my Nan or my Dad any less, it just really means that the grief over the three are so different, for me incomparable. 
Even almost five years down the line, the What ifs, the questions are still as clear and as painful as the first days after she died. 
For me even her birth presents these questions in my mind.
I was ill, I felt terrible but I often question whether there was more, to go through the events leading to her birth, of course these were answered with just how seriously ill I was, moments from seizing, but still; 
What if there could have been more to be done?
What if I hadn’t had a peanut butter craving?
What if I hadn’t brought the pram in the house?
She was the only one I ate peanut butter with (or peanuts in general), 
she was the only one we had the pram in the house. 
Of course those are silly ones, to you maybe but to me they’re huge.
What if I hadn’t had the car accident in the beginning? 
I was about 10 weeks pregnant when I wrote off my car, I still see the man who caused the accident, and still wonder if that was the start of it all.
What if we had been phoned sooner? 
There were little things that we noticed that the nurses hadn’t, not all bad, not because they weren’t doing their jobs, but as her parents we saw things that they didn’t always notice, maybe we could have spotted something that night. 
What if there had been more staff?
What if we had been asked about the eye procedure? 
What if we’d refused?
These are just a few. 
So many questions that are still as clear as the day she left, some answered, some not. 
Some still cause our hearts to skip a beat at how different the outcome should have been had things been done differently. 
What If I had done more?

Why do I keep on, keep punishing myself? 
The simple answer is I’m not. 
For me it is part of my love, my journey I have with the girl who couldn’t stay. 
Our Daughter. 

I Never Wanted Just Memories.

Have you ever watched Grey’s Anatomy? 
I don’t want to say too much, for anyone who hasn’t yet watched any of the series. One of the Doctors as part of an ending to a season lost her beloved fiancee. She didn’t want to leave him at the hospital, torn away from the person she loved so much, she had to eventually say goodbye.

Once home, she placed herself on the floor, in her clothes, there she stayed, unmoved, unwashed mainly unspoken for days…


I never did the wallow, lie on the floor shut everything out thing. I couldn’t stay in bed, I didn’t want to stay in bed, I have other children. And I am thankful.
Right now as we’re nearing her 5th birthday, constant countdowns. The one thing I actually want to do is to just lie on the floor, stare at the ceiling, say nothing, do nothing. 
Shut myself away. 
My whole body feels heavy, I can at times feel myself falling, lower and lower, the strength that people assume I have is going. It is tired, it is weak.
It is meant to get easier.
Or so I am told.
I cannot help the way I feel, no pill is going to change that she died.
I’m not ill.
I know each year the run up is always the worst part. 
Those who understand know just how hard the lead up is.
I thought it would get easier.

This time 5 years ago we we’d had our 20 week scan, we knew our baby was healthy,and of course the gender. Wow, pink or blue, how exciting?! Baby’s legs were crossed. We had another 19 weeks to find out.
Five years is knocking me on my ass.  I am drowning. 
How the hell can it possibly be this long?

“Shouldn’t I be over that by now?”  
” Don’t think about it. “

I can’t erase her, I can’t forget her, forget what has happened.  
In desperation believe me I have tried.  
Only makes me feel worse for trying to forget she ever existed. 
Guilt.
Times where I have wished that I never met her, or had hope.
But at the same time, I still would have chosen her.

Times where I wished she was “the Angel in the clouds”.
Because it is easier.

I know I’m OK, I know this is normal, well as normal as speaking to other mums who are also 5 years old this year.  
So before you think in your head, I need help.  I don’t.  Empty pities.  Empty words. 

This here is all the therapy I need. It helps me. 
This year, right now I feel as raw as I did back then.
I am allowed to feel unbelievably sad.
I still never expected this.
I expected to feel OK. 
It is after all nearly five years. 
How the fuck is it five years? 
Still have 6 weeks plus another 5 weeks to go.  
So forgive me if right now I don’t have the strength in me to be OK, the mask has broken.  
To want to lie on the floor, unmoved, untouched.  
To scream until my throat hurts.  
To cry until the tears can no longer fall.  
I have no more fight left in me. 
Because this February she should have been 5. 
It is such a significant number.
She should have come home.
Her outcome should have been so different.

(Her Nanny brought this lamb, along with a balloon to congratulate us whilst we were still in the hospital. This lamb signifies her birth. A New Life, but not necessarily the one we expected).

If I just lay here, would you lie with me and just forget the world?