Monthly Archives: August 2017

Please Help Me To Understand. The Taboo

A taboo…In the grand scheme of things I am still really new to being a bereaved Mum, I’m still learning. Five years and five months since she took her last breath. Death lasts forever, it happened before her and of course since. In the bigger picture of being a bereaved Mum I am only an infant.

Society

I struggle to make sense of how society is a round baby (child) bereavement. The poor support, the boredom from people who don’t fully understand; the minimal timescale that society thinks a bereaved parent should be over it. If I were to say to a widow, “Isn’t it about time you were over that by now.” Or if someone had said to me, “At least you have your Mother, she can always marry again…” In response to the death of my Dad, I’d most likely have shouted them down if they had.

Disrespectful, downright rude. Yet if you lose a baby, in any way; the babies who never get to stay, I had to hear “At least she didn’t come home.” Or “At least you have other children.” People can be very unkind.

Why did all become such a taboo?

When did is become acceptable to attack a grieving parent? In history the dead (BBC website)-  ESPECIALLY children were remembered and respected in these photos. Staged photo with the dead to make memories, before the final goodbyes were seen as a mark of respect. Infant morality was a lot higher then too.

But why the change?

Friends share their babies who have never take a breath, photos are all the memories they have; but are then told to hide them away in inappropriate ways.

Acceptable behaviour

But in today’s society this behaviour is deemed acceptable. The attitudes of “We don’t want to see or hear about that.” It’s harmful. My own photos have been attacked by strangers, my photos only included her in life. It is harmful to the parents, harmful to the parents who want to make a change, harmful to medical research to try and change the mortality statistics. Because let’s face it there are still far too many babies and children dying who shouldn’t be.

I have donated to many charities in my lifetime from health related ones, animal welfare, refugees. If I can I will. The community spirit in all of the above is how it should be. But you mention baby loss people may as well run for the hills, just recently an acquaintance had a lip curl and even a slight snarl because I had mentioned my daughter, my dead daughter.

We do notice the awkward fidgets by the way.

Awareness

Talking about these babies, children not only make parents feel less alone but it brings awareness, can ultimately save babies lives or simply open up opportunities for people to be properly supported.

Millie’s Trust came about because Millie died, her parents using her memory have gone on to save hundreds of other from the heart ache they endure.

Maison’s Memory because a little boy died from an accident, now his parents work closely to help with safety measures to keep other babies and children safe.

Towards Tomorrow Together, again because a baby died, and now his parents help give resources to other parents going through the same.

These are just a few reasons why Baby Loss should never be a taboo. I know people get really annoyed and fed up with me speaking openly about you girl, about her death.

It is how I chose to deal with our loss. But most importantly it is because she is MY GIRL, our daughter.

Melody, herself has changed a procedure at the hospital, the R.O.P test, she has changed how quickly sepsis should be treated, and making sure extra staff or more appropriate staff are on in the evenings. The death of my girl did this, talking about our girl did this.

Understanding

So, please tell me.

Why is it so disgusting to speak and share about our babies?

Why do people think it is okay to be so insensitive to bereaved parents; to insult our babies?

I do understand that it is difficult to speak to someone who is going through such a loss but if you don’t find it acceptable to question a widow, or someone who has lost a parent or even a pet, particularly about replacements and moving on.

Then it isn’t acceptable to do it ao a bereaved parent either.

 

We need to break this taboo.

We need to keep talking.

It isn’t catching, but it will save a life.

 

Melody and Me

Melody and me logo, which is a heart with an adult and child hand,

 

Melody and Me – The Switch.

The Switch

This last week I have made the decision to switch my family blog from normal blogging; to self hosting. As I was trying to make the final decision it dawned on me that I really needed to self host for Melody and Me too.

There is so much awareness her legacy is leaving behind, it only felt right that she had her own space, dropping any other words from the address. My relationship with grief is such a unique experience, I want to share it freely. I have some things planned in the form of books to follow on from A Mayflower’s Rainbow, which I am very looking forward to.

There is so much more I need to do; to bring the awareness of losing a baby so that it is no longer stigmatized, no longer the taboo that it is. These little children were meant to be our future, they were meant to take our legacy with them, not the other way around. So for me it felt really important to switch over, and teach the world about our little girl who only stayed for 35 days.

Learning

The switch has been a complete headache. I am sure there are still adjustments to be made…please point me in the right direction. I have learned so much within the switching process, that I can’t say how I ever managed before; it has certainly been an eye opener. There were many, many times I asked my husband, why the hell am I doing this? Is it really worth it?

I guess only time will tell.

Thank you so much for your patience with all the swapping around..writing service will resume soon.

 

 

Lots of Love

Julz

Melody’s Mummy

xx

Melody and me logo

(New Logo too).

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.

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

 

Melody and Me.

xx

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Day Of Hope 2017

Day of Hope

Since 2012 I have always had a try at joining in with the Day of Hope project. A day of thought towards Melody, hope for the future of my grief. A peaceful and gentle way to acknowledge little lives lost.

I’m not religious, and I am most definitely not artistic or creative to be able to make such beautiful flags, but I have enjoyed joining in.

This year, as you can see I am late with my efforts, we were away but even in previous years I have at least attempted something for this healing project. But I felt distant towards it, may be even towards my grief.

 

Phases

I go through them every now and again, particularly as I’d felt very emotional last week. This fifth year has really knocked me on my arse; at this point, I am not even sure it’ll get better,  it isn’t constant, like the every day rawness or anything like it was in the beginning, but there is an obvious gap, that is making hurt just that little bit more.

I wasn’t going to join in with the project at all, in all fairness I wasn’t sure the project was even going ahead; so I guess in my head I had already made my mind up that I wouldn’t do it.  Then the event release came, which was good as I know it really does help many, many families, it’s certainly helped me.

I hadn’t given much thought into what I would do; I’d brought something to iron on and some fabric.

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I chucked it on my desk and forgot about it, lost the iron on patch and was left with this fabric, thought I am not going to do it this year, I don’t need to be doing this now, I am in a place where I am comfortable in my grieving skin.

But then the date remained in the back of my mind, we headed towards it, then passed through it, I had a sudden guilt, a feeling of something I had missed, something I needed to do.

I felt really bad for not doing this project, for Melody; it really hasn’t felt right not doing it as I have the previous years, this year has made me feel very torn. I guess I am so used to doing these little things for her, I just can’t bring myself to no not do them.

So this is my 2017 attempt at a prayer flag. Nothing greatly artistic, I used a blank canvas bag, wrote things which remind us of her.

 

Melody and Me

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. 

Cry

I don’t cry for Melody a lot these days; I certainly don’t when amongst people. I’m open about our loss, about my grief; but the tears for me I prefer they fall in private, more I think because often society gets frightened by tears, by emotion.

When tears particularly of sadness show, head tilts and the comments of worry.

“They’ve been crying again.”

“I’m sure they should be over all that now.”

“They’re obviously not coping.”

“They should get help.”

 

Crying is okay, sadness is okay. They’re both more than okay to happen.

There was a charity event in aid of two charities; one of course is very close to my heart, involving Melody, out of nowhere the day made me feel incredibly emotional, it was an overwhelming feeling on how well the day was going.

I never expected to begin crying, I never expected it to remain like a cloud hovering over me for the rest of the day. I hadn’t felt that way in such a long time.

I get a tap on my shoulder to tell me my son was also in tears. As I did my best to remove him from the eyes looking at him, at us his tears turn to sobs; I knew then they for him were a release. They were loud, and so perfectly natural.

My children also rarely cry over their sister, they speak of her always, but never with sadness. He just let go so much, I could see in his face it was such a relief for him. He loved his sister dearly, although together for such a short time they were close. He, along with his older sister and us we all hurt over the loss over this girl, a loss which is incredibly complex, and so terribly misunderstood.

Having these overwhelming bursts of emotion means nothing of being strong or of signs of weakness. But of just how consuming the loss of baby, a child can be. Grief can pull you under, making it incredibly hard to breathe; I now know it will pull me back to the questions, to the complete brain fog of wondering how the hell we got from this tiny cuddly baby, to doing things for her in memory of.

People have often said they’re always worried about bringing up the name, or a memory of a loved one; this is very much the case where baby loss is concerned, for fear of making them cry. We’ll never forget who we’ve lost.

But there is nothing to be feared in crying, there’s nothing to be feared in mentioning a name.

Crying is good, whilst the reasons can be the ugliest things in the world, watching pure sobs, as I did with my son at this event, as I held him tight to my chest, I found it can be the most beautiful and uplifting thing to see, the release is empowering.

Children are incredibly versatile, I know today for him is a far better day. For me it’ll take a few days to get my head around things, I find the strength of these emotions very draining. But I will be okay.

I always am.

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.

 

Guest Post Request. A Voice.

So, I’m thinking of opening up Melody and Me for a month for parents who have lost babies AFTER birth..

Neonatal, post natal, babies who came home but didn’t stay, preemies who couldn’t stay.

During our journey it has always been difficult to find decent stats for how our daughter died, and her age. Sometimes I feel like fighting to make her matter.

A lot of awareness can be centred around stillbirth and miscarriage, which is amazing; but I’d like to raise awareness of the babies who don’t fit the above, who were here for such a short time, leaving behind often many questions.

Maybe you could talk about the reasons for prematurity, or raise some awareness about how/why they died.

Maybe you’d just like to tell us who your baby is.

You don’t have to be a blogger, you can be anonymous. I’d just like to give them a voice. I’m hoping to get enough so I can share one daily, if not every other day.

Awareness for ALL baby loss is so important,particularly the things that take them from us.

You don’t have to include photos and Dad’s are welcome too. 

Message for more details.

julz@melodyandme.co.uk

 

Melody and Me

 

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.