Category Archives: Post neonatal death

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.
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

baby loss awareness

No Back To School – Missing

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 next adventures in 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 spoken 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 rests 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 another year 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 another school year 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 she’ll never be. All in a moment – gone.

 

baby loss awareness

I Tried To Keep Her Safe

Decisions

We chose to not have a Post Mortem right from the beginning, we felt she had been poked and prodded enough, particularly her final few hours; we wanted her to be left.

Do we regret this decision?

Sometimes, yes.

It was initially thought that a condition called Necrotizing Enterocolitis – N.E.C, had taken her from us, that being premature could have been a probable cause, so these reasons swayed us against having a PM. It wasn’t until meetings and then a Child Death Review months later we questioned.

Did we make the right decision?

August 2012

In August 2012, a group of health care professionals gathered together in a room, a room we weren’t allowed to go, all we knew was the date, which she would be discussed in great detail.  Some of these health care professionals had never met her; they had records of words and figures, a timeline of events but had never met her. Talking about her whole life, in a clinical way, she was down as a number.

Only she’s not really a number, she barely makes any statistics. Statistics for me are important, it gives her some kind of inclusion, even if it is something we didn’t want her to be a part of.

Back to the meeting, I remember we spent the day clock watching, wondering how she did; almost like an exam or something she needed to pass, we had no idea on what we were expecting, answers to help with closure I guess, although five years down the line I don’t think closure is really ever that easy, nothing about this would ever bolt shut.

An email arrived, the words gently filtered through, how they discussed her life, how they discussed her death. It took approximately two hours.

Processing

Less time we got to process the fact that she was going to die; less than the time it took for the infection to spread which killed her.

The infection which we learned was Sepsis swamped her body, her CRP was of a level that was far too high for even an adult to have coped with (or at least that was what we were told).

She’d had a couple of blips leading up to her death, she’d had these previously but she always, always recovered.

It was this that gave the factor, that had antibiotics been administered sooner, the outcome could have been so much better. Everything could have been so different.

Tiny things, which we’ll never know if it would have saved her life.

Something that made her death preventable.

Keeping her safe

We did –  I did everything I could to make her safe, I did all what the guidelines told me to, reported movement changes, reported changes in my own body. I rested when I was told; I remained in hospital when I was told.

I expressed milk, we visited, we spent time with her, we stayed away when we were asked, we did everything we were supposed to. We listened and got excited about the discharge date,

Yet somehow, five years from having my third child I am writing in memory of her.

Everything I did to make her safe just wasn’t enough. I’ve stopped beating myself up, and focusing the blame on me. But closure is harder to find. I’ll always search for the what ifs, I know it’ll never change anything, I am not hurting myself –  maybe I am, but I’m not hurting anyone else.

Changes

Her death meant changes to the Neonatal Eye Exam which made her poorly.

Her death meant that there should be more staff on, especially a lead nurse on in the PM shift.

Her death has meant looking into timescales around Sepsis and when to treat, to empower staff to contact other members of staff in shorter timescales.

I just wish it hadn’t been her to have made these changes.

I just hope she has been able to save at least one family from the heartache we are living with.

 

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. 

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?

Another New Year

New Year
Another year ticking over since I last held her, smelt her, kissed her. 
Coming up 5 years since.  Five seems such a large number.  So significant. So far away. 
At times it all feels like a dream,  that she was never here, not real. 
This Christmas was the first we didn’t visit over Christmas Eve or Christmas Day. Besides being poorly,  not visiting her was actually a really difficult decision.  This year I felt unbelievably torn.  Between the love, the lives of the children who are with me and her. 
The thought of the cold and the rain, standing there blowing kisses to the air. 
Leaving her behind in the cold and the rain pains me every single time. 
That is where she is, cold in the open air.  Alone and away from her family.
This year I couldn’t face the trip.
Another guilty feeling in this shitty situation. 
It’s been almost 5 years, I’ve had enough now. What ever bad shit I have done, I’ve paid. I want her home, to complete the family we had planned.
I’m done. 
Five years of trying to keep her memory alive.
Five years of family and friends turning their backs on us.
Five years of justifying why she still mention her. 
She may have only been here 5 weeks, 35 days. But she is still our daughter.  She never had the chance to become the woman she could have been.  No celebrity status, no chance at life, just a hope taken. 
This year as we tick over into 2017, I feel confused, hurt I guess, almost raw again.
This time five years ago I was pregnant and looking forward to the following Christmas, her first. 
Why can’t I just get over her?
Because I don’t want to. 

Christmas 2016

Here once more, another year without our girl, of course that will never change.
I get so far into December thinking I’ve cracked this, that it is getting better.
But truth be told, this year is exactly as it was the first Christmas we had where in order to spend some time “with” her, is to venture in the chilly air, decorate a headstone.
This shit does not get any easier. It is kind of static, but at the very same time it feels worse.
One less set of presents to wrap, although we do buy her gifts, but not in a way other people buy their 4 year old gifts. An ornamental garden snail, or a candle on a metal stake.
I can’t even tell you if she wanted the latest toy this year.
I hate not knowing the sort of person she could have been growing in to.
Once again, just as we have since 2012 braved the cold, we’ve had to pick the right time, to escape the wind and the rain.
It isn’t a place I like to go, it isn’t a place where I want Melody to be either.
Every year I contemplate whether to go or not, but I would feel awful if I didn’t.
Just as I feel like shit when I do.
Her siblings also like to decorate her ready for Christmas.
I wouldn’t force them if they chose not to.
As tradition we like to include her the same week we do our own at home.
Making our way to the cemetery, keeping good spirits, a much as I can.
Feels me with dread, because every single time we go, I have to say hello and good bye really quickly, it’s the goodbyes, the leaving her out in the cold.

Slowly walking around the corner of the chapel, careful of her neighbour, but cautious in case someone else has moved in too. Thankfully not.

Carefully we remove her Halloween decorations, I know how poor of us for not visiting.
Don’t judge.
Tidy her up, a daffodil plant pot hasn’t survived.
The weather no doubt.
It sucks.
Her toys have remained in place.
In the bitter part of my brain, deep, deep within, I wonder why we bother, it isn’t as if she can play with them.
She died.
 She died before she ever had chance to play.

Sellotaping tinsel, placing a tiny Christmas Tree covered in fake snow.

That’s her Christmas.

Is it enough?

We cut back on how much we decorate her this year,
it effects us more than the groundsmen or silly kids will ever know,
when things get moved or tossed aside.
Photos of the children together, the only way I can. Of course They don’t all co-operate, but that’s what happens when you have five children right?

Step back and take a moment, and prepare to leave; to once again say Goodbye.
I never could say goodbye to her when she was in the NICU, the word scared me.
It is so final.

As my heart is heavy, we finish our photos, something happened.
A couple visiting a relative of their own, had walked by clutching a reef.
Moments later walked by again to return to their car,
told us how beautiful our girl’s forever bed looks.
To carry on as we are.
The Gentleman offers to take a photo for us, of us all. He didn’t judge, he was insistent on helping us to get a family portrait.
I love pictures, creating lasting memories.
It is important.

It isn’t something we have ever been able to achieve, without one of us lost behind the camera.
Totally grateful to the kind couple’s gestures, we parted ways, and once again we began our goodbyes, our waves and blowing kisses.

Making our way through the tunnel back to our car, the couple were in their car waiting to reverse.
When the lady stepped out of the car, rushed over to us, tears in her eyes, pressed something in my hand.
“Please buy your lovely children some sweets, please don’t say no. What you do is lovely.”
Trying to say thank you, but to not let her, she rushed back to their car, driving off.
Tears rolling down my face.
Strangers, so kind, so thoughtful.
Not only helped to fulfil a rare photo opportunity, but put slight smiles on the children’s faces.
Even they were speechless.
I feel as if I could never thank them enough.
We popped to the shop and brought some flowers, and returned to the cemetery in the hope I could find where they had visited, but for the length of time the had disappeared to when they returned to their car, there were several graves with reefs.
I loosely placed them onto Melody’s grave and asked her to look after them.

No idea if they themselves are bereaved parents,
(our Cemetery is for everyone and not a baby garden)
or simply genuinely kind-hearted human beings.

I, we will be forever grateful, wish we could thank them more.
They’ll never know just how much those moments have meant to us.

* * *

As mentioned we decided not to decorate her forever bed as much as we usually do.
Instead we have been able to make her garden space festive, the space itself is very much a work in progress, we’re really pleased with how it looks this year.

The photos don’t give it justice. 
Still very much unfinished, soon I hope. 

Christmas without her, I have come to realise it’ll never get easier,
and we certainly won’t ever “get over her”.
I don’t want to.
Don’t expect me to.

I Miss Her So Much.

#captureyourgrief My Promise To You

I was going to go, all inspirational, how I want to change the state of the taboo, promise to help others.
But I hope I do help others, so many wonderful things in her memory.

But actually, here’s something a little different.
I have always loved Christmas. The magic, the run up, the smells, the lights…everything.
The year before she was born, we were making plans of how much our lives would change with a new baby, had she’d been born in the May like she was meant to, we’d have had a 7 month old.
The usual questions; How would she have reacted? Would she have pulled down the tree? Would she have enjoyed Brussel Sprouts? We were all so terribly excited.

Only the following year I was pregnant again, desperately hoping we could have that “First Christmas” the following year, I was sick, I was angry, sad, hormonal I wanted it all to be over. Our cards which were signed from bump, were now carefully chosen, on who we’d include our special “M” cloud.
How was I ever supposed to love Christmas again? In the beginning I hated it, when I desperately wanted to love it, if not for me, but my children..that’s who they are, children.
Christmas had, and needed to be magical, the idea they had their hearts broken, a little bit of innocence stolen from them I couldn’t take that magic away from them.

So as we’ve gone through the years, I have tried my best to make it the most magical time for them.
We’ve had Christmas Characters come to stay (much like Elf on the shelf, but Elves aren’t the only ones part of the Christmas story). First one I turned into a book. (Ralph’s Christmas Adventure).
We do Bookmas,24 books for advent to open daily, brought by our Christmas Helper.

We give them magic for the whole of December (to the best of our abilities and finances).
Of course we want to give them magic the whole year round.
But for most people, Christmas during their childhood is the most remembered. I want them to remember, love,fun, laughter…magic.

It is unbelievably difficult knowing we do have her missing, we include her in our celebrations..candles, she has decorations for the tree and a Christmas Village, illuminated houses we add to each year since she died.

She was alive Christmas 2011, she may have been in utero but she was alive, a heartbeat, hands, feet. We picked her name at Christmas too, thanks to Dr Who Christmas episodes.

My Promise would be to give them the magical childhood they deserve.
If it means going crazy at Christmas, spoiling them for birthdays, days out when we can. Then that is what it takes.
I hate I couldn’t protect them from losing her, but I’ll spend the rest of my life making it up to them.

Believing in the magic.