Tag Archives: infant loss

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.

Children’s Grief Awareness

Children’s Grief Awareness.
People struggle with talking about death, and in particular when it involves children’s grief.
I was a child when I lost my grandfathers.
One it was all terribly hushed, there was rarely any mention. When the other died I was told he’d gone to sleep. For me it made a natural thing difficult, would I sleep and never wake up? There was never any real openness about it, which in my mind, even now made it terrifying.

Sibling Grief

sibling grief

When our five week old daughter died it wasn’t me who told her siblings, it is definitely something I wish I had. But I couldn’t process what on earth had happened.
It certainly wasn’t something I could hide from them.
Unfortunately when it comes to the loss of a baby, of a child, society wants you to be silent; there’s a need to stop talking about the tiny person, to forget.

For us as a family Melody’s immediate family, made the decision to be open with her siblings.
A week after she died it was my oldest daughter’s birthday; there was no locking ourselves away, we had to return to normality. We’d already brought presents for her; in our minds we knew who was giving her what; which included a present from Melody – she wasn’t expected to die. My husband and I chatted between us made the decision that the presents would still be from Melody.
To outsiders this seemed strange, it probably was but there is no text book, no right or wrong when it came to early grief of our daughter.

Criticism

As bereaved parents, we are often faced with lots of criticism from people who quite frankly don’t understand. They’re lucky they don’t.
We needed to be grateful for having our living children; or being over the death of our daughter.
We know she wasn’t here long, we are reminded of that daily.
“At least you have other children”
“At least she never came home.”

Emotion

Watching my children cry, sob because they had to learn the hard way that babies die, feeling not only helpless but guilty too…I’ve been made to feel like that many times.
Having to tell the children that she wouldn’t be coming home like she was supposed to.
Seeing a tiny coffin in the church; this was then placed in the ground.

We didn’t know if we wanted them at the funeral; but I guess we were selfish maybe in wanting to break without the children being there; we had no idea how we would be. But they did go, my daughter read a story.
There’s nothing least about any of it.
So, having made the decision to be open, we chose to be led by them.
Of course it was hard; we were never able to let grief grip us, there were no days in bed, no crying on the sofa for days on end.
Of course we cried, it wasn’t something we could control, we didn’t want to. Crying is normal and healthy thing to do.

They needed to know that they could cry.
They chose to be as open as they wished, we literally followed their lead. Things like talking about her or visiting her grave.
For me her grave is full of horror, I hate it. I visit because I’m her mum, but rarely.
But if the children want to, then that’s what we do. They’ve taken the role of tidying her, if my husband or I place items; they move them to a spot they prefer. They look out for her.

Off Days

 

But there is also the other way too; where just recently one of them didn’t want to talk about her. He was having a moment where he preferred he didn’t have a sister who died. From an adult point of view, from my own grief I quite often agree with him. There are days when people ask me how many children I have; and I lie or simply the days where I just don’t think about her. That is okay. He fears he would be bullied from his experience. But that is possibly down to the fact that there aren’t many of us in this situation. And society as a whole would rather we keep it quiet. Truth is told he is probably not the only one in his class who has lost a sibling, either through pregnancy or after.

Yet today he is asking to buy her an “M” ready for our crafting session this weekend.

Individual Grief

 

Grief is incredibly individual especially a child’s grief; there certainly are no hard rules.

Grief and death as a whole are both so taboo, yet it sadly affects everyone in their lifetime.

The taboo is even more so when it involves baby and infant death, it shouldn’t. To talk openly and freely helps those who are in the grips of grief. It helps spread awareness, often helps save others too.  Time is no way a healer; I wish that things were different, I wish that she hadn’t died; biggest wish is that I wish my children hadn’t lost their sister.

We are nearly six years down the line, I really am so proud of everything they have done since; how well they have coped. They have two new sisters, they now educate them of their sister “who lives in the clouds.”

Sibling grief

 

Neonatal Loss Awareness

Infant Loss Awareness – Kate’s Story

Tilly

On the 22nd of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24th of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

infant and teddy

 

Kate’s Story from Tilly’s Marathon

Thank you for joining us on this awareness series. 

Thank you to Warren, Marissa, Beth, Kate and John for letting me include your beautiful babies.

Melody and Me

Stages of Grief

The stages that once all are completed, everything is better.
 

 Denial.

Anger.

Bargaining.

Depression.

Acceptance.

 

 The Stages of Grief.

Since 2012 when our daughter died,  I have stepped and paused on each and every one of these stages.  Several times in fact, and in no order, but they’ve all been met and fought with on a number of occasions.
Most people know the stages,  and in the beginning in my head, with repeatedly being told that time heals,  the obsession with time I had as the weeks rolled by I would attempt to tick the words off the list in my head.
Denial – ✅ 
Anger –  ✅ 
Bargaining –  ✅ 
Depression – ✅ 
Acceptance – ✅

 All completed.  

But then, something would happen; a trigger, a thought, then one of the stages will hit again.  Not all at once or even in any order.

 

The Limbo Months

I’m currently in yet another run up to a birthday without the birthday girl, the remembrance weeks of when she was alive and felt real, then the anniversary.
Each of the above arrives in waves, each wave named after each of the grief sections.
Looking through photos of her, which isn’t something I do often, maybe for a project, or – well I don’t really need to justify myself the times that I do. I can’t quite get to grips with how she died, this baby, our tiny little baby who gave us a smile, fed, pooed..how she just died.
It isn’t about acceptance or a denial thing, let’s face it none of the five titles really are equipped to be included in baby/child loss.
I am painfully aware that she isn’t ever coming home; that she is dead, we all wish that wasn’t true. It is comprehending such a thing happening.
Even now, looking at her photos, I still cannot believe this happened to us.
Yet you still get people say “It happens for a reason.”
I think this is probably where the anger part comes in to play.

Waves

Each year the run-up to dates bring the waves, since the turn of the year, I’ve hit a couple of them, I’ve now come to realise that this time of year is difficult, how can it be anything but?
Some waves are rougher than others, nothing it seems is going to change that.
For me, the firsts were extremely painful, full of overwhelming ‘What the fuck just happened’s’?
The firsts are the worst bit. But then it turns into the seconds, when you can no longer include them in the year, or say “This time last year.”
The moving on of folk who offered mere condolences, life goes on.
The stages for those who don’t feel the full ripple effects can be ticked off the list.
It is time to move on, “it’ll only make you sad…”
Another of those beautiful quotes.
I’ve found time hasn’t healed a thing, having spoken to others they feel the same too. It is hard to imagine these years getting worse.
Then I find myself back to the feelings of
 Denial. 
Anger.
Bargaining.
Depression.
Acceptance.
Stroppy Bitch Syndrome.

Too many time limits.  Too many tick lists.
I’ve added one…
That’s me, around the same time each year, I guess there comes a point where I just can’t tolerate, little annoyances, which are probably not even that annoying.
Patience is incredibly thin.

Emotions

It is such a hard thing to explain why.  Watching friends’ children turn the age ours should have done, it is such a happy event,  but it is so bittersweet,  filled with many emotions and thoughts.
Buying flowers for a child,  cards that will never be read.
It isn’t surprising that I end up with stroppy bitch syndrome.
But I do hate the feeling too, I really don’t mean to be but I know once the heaviness of the next few months lightens, then my patience expands more.

There is certainly no black and white when it comes to the stages of grief, they certainly don’t disappear once you’ve completed them.  Let’s be honest they’re not exactly an accurate guide, or at least for me, I don’t think it is.
These waves are crushing don’t let me paddle alone.  I don’t want to drown. Stages of Grief