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.
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
(New Logo too).
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.
Not only was a new memory made but I finally feel like Melody’s Mummy.
Melody and Me.
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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.
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.
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
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.
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?
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?
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.
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.
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.
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…
Inside Out. It’s a Disney film, about emotions from the emotions themselves.
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.
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.
I’m lucky because I GET to be Melody’s Mum, no matter how long she lived.