Category Archives: Baby loss

Decode – My Life Before

Decode; is possibly a strange one if I am honest. Decode if you don’t know is a Paramore song, it was part of a soundtrack to the first Twilight film.

Different Life

 

I remember picking up the book, just before my first marriage ended – I can’t even remember why I was drawn to it. It wasn’t long after that my marriage broke down that I needed to rediscover who I was. I found it hard, of course then I didn’t really know what a broken heart felt like – I just thought I did. While I scrabbled about to suss out where I would go in life I found comfort in the form of reading, then friends introduced me to the films. I became lost in the hype of the fandom, lost in this new thing that wasn’t associated with my now new life, at a point where I found it really hard to ever believe that anyone would want me. Then he did.

 

Perfection

Once we’d found each other we had that amazing love (we still do, of course). Life seemed relatively uncomplicated; getting to know each other, holding hands all of the time, lots of public display of affection. We found that stereotypical old fashioned love, everything was perfect. We had a new life ahead of us, a fresh start.

 

Decode

Where I think, I am going with this. Today I came across the song again; not heard it in years an in instant it took me back to when we first started dating; to when we were just a normal couple. I had the two children from the marriage before; we’d spend our evenings either together planning a future of marriage and children, or enjoying a social life. Everything about that song reminds me of how our life was before.

That is how I see my life now, before and after Melody. We spent a measly eleven months of our marriage, wrapped up in honeymoon bliss of promise and hope to our new addition to our new life together. Just eleven months, before the people who lovingly took their vows changed forever. Something as simple as a song, can take you back to somewhere completely different from where we are now. When I played this over and over again, or obsessed over the films and the books; I never expected to have this innocent bubble burst. It may sound silly – it probably is – but it was all a completely different time.

 

My Love

I think I will always worry about the impact the death of our daughter has on our marriage, we really were newlyweds; I have never been able to even enjoy looking back at our album or talking about the celebrations (she was conceived at our blessing, which was held three months after our official wedding day); a big black cloud forever lingers around the thoughts of our special days. We have discussed vow renewal maybe one day, but I guess it wouldn’t change a thing – new memories maybe. I am mostly glad we have each other.

 

Walking down memory lane, listening to the songs that take you right there wishing for that life again, the care free with a hopeful new life – it was easy to have that innocence; that bubble.

I just want us not to have been bereaved parents for most of our married life so far; it is what it is. I wish Melody would have survived, that Decode was part of a love story and not that of a soundtrack of our “before” life.

“I chose the title “Decode” because the song is about the building tension, awkwardness and confusion between Bella and Edward. Bella’s mind is the only one which Edward can’t read and I feel like that’s a big part of the first book and one of the obstacles for them to overcome. It’s one added tension that makes the story even better.”

 

— Hayley Wiliams, in a statement posted by Stephanie Meyer.

 

 

melody and me

Rainbow Baby – An Interview

I’d never heard of the term Rainbow Baby until I was pregnant with one of my rainbows. I’d had three miscarriages in the past, plus two healthy children. It was when I fell pregnant after my third miscarriage did I learn of this term. I assumed, that the term meant everything would be fine and happy.

Then this particular rainbow died. After being born at almost 27 weeks, she did really well in hr first few weeks of life, but at five weeks old the baby who we had come to know as our rainbow baby – died. She changed our story.

 

When did you decide to try again?

We were actually planning another baby, whilst our daughter was still alive, only we thought we’d wait until she had come home for a while. Once she had died I was keen to try again as soon as possible, but at the same time I, we were terrified.

What was TTC like?

Luckily for us the TTC journey after our daughter was short, but was long enough to get the jealous pang in the pit of my stomach each time someone I knew fell pregnant. We were advised to wait six months for healing and for grieving, I knew from early on there’s be no healing for grief. We were lucky to have conceived just over three months after our daughter died.

Did you have any support TTC?

No, we didn’t tell anyone we even wanted another baby, let alone tell people we were trying again. We had many comments stating how we could always have another baby, we felt by telling people it would mean they could forget what we were going through. So no it was just us.

First Trimester

Positive pregnancy test.

How did you feel when you found out you were expecting?

Well, I only tested because I had gotten really frustrated by yet another pregnancy announcement, I felt I had spent a fortune on time and pregnancy tests, although it was a short time, I was also very impatient for it to begin. We had so many mixed emotions; although we were trying we were still surprised that it happened so quickly.

The feelings of guilt also came, that we had a new baby coming, yet our baby before hadn’t even had a headstone, or her six month birthday, it was incredibly surreal and frightening.

 

Did you tell anyone?

Professionals and a very few close friends and family. I wanted to get the right medication for me ASAP, get the care that I had been promised at an earlier meeting. My GP was reluctant to give the Aspirin, although it was in my notes, so I saw my consultant at six weeks – where I had my first scan.

 

How did you announce it?

We were terrified to tell anyone, we were scared that we would jinx the pregnancy. But due to health reasons, we announced via Facebook at around 14 weeks, with a simple Rainbow quote, it was nice to give people from a distance the news, after they had supported us through our devastating weeks.

 

What support did you have from professionals/friends/family?

We had some support initially, but it wasn’t until the next trimester that it increased; I had a second scan at 10 weeks, then at 13. This was all just the beginning. Family seemed to assume that we were all better now we had the new baby on its way.

 

Did you have any tests/scans?

Didn’t have any extra tests, just the usual booking in bloods, and I also had a PET one done, although that is a rare one to have in the first trimester, because of previous history, professionals wanted a baseline to work with should they have needed it at any time further along.

As I said I had scans at six weeks, ten weeks and thirteen weeks.

 

Were there any surprising milestones?

Not really at this stage, not for us. I guess seeing a new heartbeat after only so recently losing our daughter felt incredibly surreal.

 

 

2nd Trimester

How did you feel as you started to show?

Nervous, for me it was this trimester when things began to go wrong, I guess I ignored my bump somewhat, trying to concentrate on one day at a time.

 

Did you have any scans or appointments?

Yes I had them fortnightly to begin with starting from 15 weeks, but from twenty weeks I had weekly scans and appointments with the midwife, and fortnightly with the consultant right up until the end. I was very well looked after, but it was so much more than being a baby loss mum, I didn’t do pregnancy well either. Although my Midwife and Consultant were very kind and understanding with all the appointments I had – none of which I asked for, they were what the consultant had put in place. But other professionals I would come in to contact with like sonographers weren’t always that empathetic to my being there, and few times I’d come away in tears or disheartened. A lot of their issues were me having the weekly scans; it seemed to bother them somewhat.

 

Were you well physically?

Not massively, no. I had Hyperemesis Gravardium and SPD to contend with. It was often a struggle to make my appointments due to being so sick.

 

How did you feel emotionally?

This is closely linked with the previous question, aside from the scans and antenatal appointments, there were the need to have an IV every now and again, there were times where they wanted me to stay overnight, but I just couldn’t the whole ward, the area made me feel so much worse, the area in which she did was very close, and on quieter evenings if windows were slightly open, I could hear the faint beeps coming from there, they’re a massive trigger for me. Possibly because it isn’t something I come across in everyday life, it affects me more when I do hear them on the odd occasion. I was a wreck.

 

What Milestones did you pass?

The gestations in this trimester were the ones that I felt like were a massive mountain to climb before I had passed them. Week 23, because that was when I became ill, it was then later discovered this was the gestation that she had probably had stopped growing at. 26+6 was the biggest one in this trimester, because that was when she was born. I was a complete wreck leading up to these milestones, but became lighter I guess once they had passed, but it still didn’t make everything easier.

 

3rd Trimester

Did you have any additional appointments?

Aside from the normal ones, yes I continued throughout the rest of my pregnancy seeing the midwife regularly, the consultant weekly and additional in between CTG monitoring and IV drips.

Scans what did you plan for the labour and birth?

Scans I had a total of 22 throughout this pregnancy right up until about five days until my C-section date. It did help with my anxieties, it felt like I had my eye on the baby all the time, I couldn’t trust my body any more, I couldn’t trust anyone.

I had a planned section due to how many previous ones I’d had.

 

How did you feel about this?

Nervous, I had originally been offered to have the baby at 38 weeks, but I refused and said I would prefer 39, to give baby as much chance to avoid Special Care as we could. But as the dates neared we brought it back to 38 weeks and I am pleased we did. The main thing in my birth plan was to leave with a live baby, a sibling for my other children, and to leave as soon as I was able, there was no way I wanted to stay there longer than necessary.

Did you buy anything for the baby/prepare the nursery?

We didn’t have a nursery, no space, but we didn’t really give the baby a space either. I was too scared, we had brought a cot from eBay (new), but we never opened it until she had hit about six weeks old. We had very basic items, enough to cover what a baby would need. We soon learned that we were missing a fair bit, but we just couldn’t do it. There were times where I had filled a basket and then abandoned it, we kept putting it off, or double/triple checking before we bought anything. It certainly wasn’t relaxed or exciting.

 

How did you feel?

I loved shopping for baby things with my first two, and even the few bits we had brought for our daughter was still really exciting, getting prepared was fun, the imagining the new life that would wear the items or sleep in them.

But with the rainbow, the only things I could think about was making sure I kept a receipt. To not open packaging to ignore the things we had brought. It was a chore, a horrible chore. To remember exactly where I’d put the items and where they had come from. I needed to know we could return them should we need to. It was far from fun. It was never meant to be like that.

 

Was there any milestones?

Getting past the weeks in which the baby would need intervention or procedures should they were born at a certain time. Getting to 37 weeks to me didn’t mean full term, it meant a week until I could meet and take home our baby. There was a point at 34 weeks where they thought delivery would happen, but I was lucky that my consultant knew my history well and sent me home before anything was booked.

 

Labour and birth

Tell us about the labour and birth

I had an elective caesarean.

How did you feel?

Terrified, although our baby had lived but then died, I had lost my innocence, not all babies survive pregnancy, birth is so unpredictable, even when they listened to the baby just before the operation started, it was a long time between that CTG and the moment of first cry.

How long was it?

I of course didn’t labour, but the waiting around in the morning, was not something that we felt comfortable with. We were first on the list, but there was an emergency, luckily for us our consultant wanted us in and out as soon as possible too, so he went and helped with the couple before us. It felt like an age until we were called on to go in. The SPD made it a very slow shuffle to theatre.

 

What was birth like?

It was peaceful, well a lot more peaceful than our daughter’s birth. I couldn’t relax until the moment I saw her, until she was safely in our arms. She was born to Blame it on the Boogie by Jackson five and I was stitched back together to Love Train.

 

How did you feel meeting your Rainbow baby?

We felt relieved upon hearing that cry. Relief once she had been handed over to us. It was incredibly emotional, the need to hurry up and recover, to leave the theatre and hospital was overwhelming, I felt very impatient to begin our rainbow journey, I was worried that every minute we were there, there was a chance for her to be taken. We didn’t want that to happen.

 

What were the early weeks like?

Not the dream I had set out for it to be. I assumed that I’d be ok; I would be healed in the way in which everyone said I would be with having a rainbow. Feeling like a complete wreck, everything was still terrifying. Nothing had changed except I had to rely on us to keep her alive and not a bunch of scans and appointments.

Any milestones?

Hitting five weeks old was our biggest milestone. I barely slept a wink the night before her fifth week, I was scared it would all change the next day, we’d had such a good day the day before our daughter died, it worried me that history would repeat itself.

Handing back the respiratory monitor too at six months felt like a huge milestone, although we didn’t use it a great deal it was a security blanket.

Breastfeeding? Bonding? Bringing baby home

Breastfeeding was a massive thing for me; it was something that was really important. Sometimes when our daughter was in NICU it felt as though decisions were would of our hands, particularly in regards to her feeding, she’d have a couple of top ups with different formula, and often I was made to feel inadequate in our feeding schedule.

I just felt that formula was too harsh; I didn’t want to do anything to make our new baby ill, so breastfeeding had to be a priority. She ended up losing a fair amount of weight, which we eventually realised that her birth weight may have been wrong. But there were a couple of times where health care professionals threatened us with a trip to the hospital; this certainly was something we didn’t want. But we pushed on and she was 100% breastfed until six months. It really helped our bond, I did struggle, because she reminded me of her sister, then she began doing things that her sister never got the chance to do. It wasn’t easy – far from it.

 

General what things helped?

 

We bed shared, I had already done this with my older children as part time measures, but with our new daughter, I felt I couldn’t let her out of my reach, out of my sight. I needed to be able to hear her breathe, and if there was anything to have taken her, that she would have known love 100% of the time.

It wasn’t easy.

I think being able to still speak about our daughter, to allow her to be included in conversation. We also didn’t allow visitors at the hospital. Time at home without visitors too, we had a slow and steady supply of visitors, we needed time to compose ourselves, to find ourselves as a family, who’d been through such a whirlwind of events, there were times we had no idea which way was up.

What things were hard?

The way our new baby looked like her sister, although not so much now, but every time I looked down at her I could see her sister. Telling people the number of children we had, I would stutter a lot, everything was so confusing. My head couldn’t get around having two pregnancies in thirteen months, yet one baby. It took a lot of getting used to.

What things didn’t help?

People’s words, expecting us to be better, and healed now there was a new baby. Actually I think it was worse, being a loss Mum has made me a lot more anxious at being a parent, because I now know that not even children are safe from dying. People expected us to move on. We were under the CONI scheme and I had a lovely health visitor, the best in fact. But her Boss told her at 18 months post death, we should be over the death. This is a health care professional, someone who is meant to support the most vulnerable, but could end up doing more harm than good. No bereaved parent should question how they grieve or the length they take. The loss of a baby, a child lasts a lifetime.

What would you have find helpful?

More empathetic health care professionals, to feel that you won’t get judged for crying the loss of your baby, actually people in general to be kinder towards parents who have lost a baby.

People expect us to forget, to never mention what we have gone through, but it is never that simple.

I wish someone had told me the truth about having a rainbow baby. I honestly thought that by having a rainbow baby it would make everything better. Reading other people’s views on how their rainbow made them better, that it would all be over, my expectations changed. That for me our daughter would never be that storm to pass over, to move away from. I desperately hoped the pain would go. Nobody told me I’d feel differently. I expected to be better.

 

 

Then..

I also went on to have another rainbow. We’d had a surprise positive pregnancy test, which resulted in miscarriage; and thought we would try once more, where we fell pregnant the next month. I once again developed HG, where it was incredibly tense and scary. Something I could never want to repeat.

My midwife was amazing during this pregnancy and saw me for home visits weekly due to being unable to leave the house a lot. I also had a different consultant who was lovely and supportive for the HG; but I did find it a lot harder to get through my concerns to people. With the severity of the HG it exacerbated my anxiety for bringing the baby home. I didn’t have as many scans, and my GP upon booking in (after asking for my aspirin and sickness medication); that he didn’t really deal with pregnant women; which was incredibly disheartening and left me with no confidence.

 

Hospital Trips

There were several trips to the hospital throughout this pregnancy; for sickness medication and IV fluids; my midwife would give me dip sticks at home to keep an eye on ketones; but upon phoning the wards I was told to suck a sweet. The biggest thing for me was at 24 weeks; I had upper bump pain, it was the only way I could describe it, it panicked me with my history; so I phoned the ward to be told that you don’t get pre-eclampsia before 28 week; you don’t get it twice; I could not be having upper bump pain, so I was unable to get seen.

Luckily on this occasion everything was okay. It then made me reluctant to want to phone in again, it just so happened that the HG was playing havoc on my body again. But I just felt the second rainbow people – health care professionals were even less sympathetic. I’m not sure why. Nothing had changed, I was still terrified that something awful would happen again.

The milestones remained the same.

I had my 5th and final caesarean, with a sterilisation at the same time.

 

Although I have been lucky enough to have four healthy children out of the five; losing our daughter will always be not just about losing her; but the level of anxiety that any pregnancy afterwards brings, has definitely put me off ever wanting more children; even if there was ever a chance to squeeze one more baby in.

I think it really doesn’t matter how any babies you go on to have after a loss; there will always be that huge sense of loss, of someone missing. No-one will ever replace or make up what we have lost.

 

 

My rainbows aren’t ones which come after a storm, because our storm will never be over; they add colour and light. They give Melody a little acknowledgment. Babies after loss.

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

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 – 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

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.

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

 

Melody and Me.

xx

 

What I have learned in Five Years

Five years in the scheme of things doesn’t seem a lot. 
A 5 year old human is still growing, learning and a long way to go before they’re ready to face the world as an individual. They’re so young.
A car which is 5 years old also has so much more going for it, more miles, more adventures. More places to be.
It just isn’t very long. 
But to me five years seems almost like a life time ago, far too long to remember everything about her. 
But if she’d still been here, she would have been almost ‘just’  five years old.
Since April 2012 I’ve learnt so many things, things I never would have imagined learning. 

1. I was told in the beginning I’d never be the same person again.  I didn’t want to believe it, she’d only been here 5 weeks how could she change me, us so much. 
But at the same time why wouldn’t it have all changed us.  You can’t expect anyone to grow a baby, a child love, bond, feed as you would any other baby, for the baby to then die.
To have to decide “what’s best” when removing a ventilator, to watch their life leave them, to organise an event that should only be set for the elderly,  a burial or a cremation for the child you bring into the world.  Tiny coffins and holes in the ground.
It isn’t not going to have lasting effect.  You can move forward to a degree, but you’re just not the same. 
I look at people differently, I have to pick conversations with people, so not to offend them, but mainly to not alienate myself. 
I have to pause when answering parenting questions like how many children I have.
I see the world differently. EVERYTHING changed. 
2. Time is not a healer.  It really isn’t. I’ve section scars that will never go, they will always be there.  We will always be minus one.  For me the further away the harder it seems,for me in particular this 5th year. So many missed milestones, never started school, or had birthday party invitations, not knowing what things she’d have liked, who her friends could have been.  Pictures made with love.  I’ll never be “better” because I wasn’t ill. Time has just added to the crap that goes with all of this. 
3. Grief Tourism exists. The rubber neckers.  The people who only want to know or speak to you due to their own personal nosiness. People who want the grief for themselves, it’s a bizarre thought I know, and I’ve seen it done for adults too,  but those who somehow want a piece of the action, which in turn the grieved ends up being the supporter.  Which isn’t right,it’s not how it should work. It isn’t a sightseeing trip. 
4. It is a complicated type of grief,as I have mentioned before, the grief I had for losing my Grandparents, losing my Dad is so different from the grief I have for Melody.  The first thing I can think of is I could breathe when they passed away, their deaths weren’t easy,  they were incredibly hard, I do think of them at birthdays and Christmas, but Melody’s death, is something, although I speak about so much is not something that is really easy to explain in perfect detail either.  We’ve lost a lot over the years, friends, relationships with family.  Not something you’d expect when you lose a baby, you’d have thought the opposite. But we have gained people too (which you’ll see in a moment).
There’s so many times when your brain wanders back to the time of life, of normality, there’s nothing to stop it, it is a nice time to remember; but then you get to the part where you think you could change things, but obviously you can’t your heart stops for a millisecond for a short moment you’re back to the beginning again.
Nobody truly understands, unless you have / are going through it.
As much awareness, with premature births,  causes people only listen so much.
It’s complicated.

5. Online Support is wonderful.  I’d met my husband online, but never imagined to meet lifelong friends via the Internet too.  Some were from Melody’s pregnancy, when I was suffering with HG unable to face the world, and people didn’t have patience with me either,  the friends behind the screen became my life line.  Together we went through so much, not just my own loss but others too,  then the pregnancies that came after.  When for me once again the HG took hold and they were there no matter what.  This included the women I’d met through bereavement forums too.  Without them I’d have no idea that what I felt was indeed normal, and actually I wasn’t alone in these thoughts.
I will always be grateful to these people,  I’ve met a couple of them, two are God parents to the littlest ones.
I never knew online people would become my people..

Five years is far too long to have last kissed her.
But not enough time to have healed.  Maybe not even forever.  

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.

Melody and Me

Little Daffodils. Pregnancy and Infant Loss Support

Little Daffodils
 

Legacy

After the death of our month old baby Melody in 2012, and receiving minimal support professionally, I knew from quite early on in this journey, I wanted to support others going through this rather unique experience, to not feel alone and unsupported.
Soon after her death I made online connections, gained support which in turn led to me giving the support too, six months later became an admin on a pregnancy loss forum, where I continue to do so now.

Plans

But I wanted to do more; late 2014, early 2015 I was approached with an offer of a venue within a new centre in Chard, where they wanted to include my Pregnancy and Infant Loss Support Group idea.
Being a little nervous about doing it alone, I contacted Mel Scott from baby loss charity Towards Tomorrow Together to see if they’d be interested in supporting the group, in May 2016 (Melody’s original due date month) my dream became a reality when Melody’s Voices was born.
Slow start, but is becoming something truly amazing to be a part of. I’m really proud of what Little Daffodils have achieved.

The Butterfly Awards

Little Daffodils became the new name after I returned from The Butterfly Awards in 2016, stunned by how minimal bereavement care is in the West Country, it shouldn’t be, it was then I realised that the future of this particular group needed to be a lot more than Melody, a legacy that one day once the group is well used and I may find a time to say enough – I’ll never stop talking about her – but the group, the support can carry on years down the line.
Daffodils are her flower but can be a symbol of short lives, which of course represent who we are.

Little Daffodils

The project as a whole is so much more than supporting sleeping babies (I, as well as some other bereaved parents, aren’t keen on the saying “sleeping babies). I’ve found there’s a lot of awareness about the babies who were born still ‘sleeping’ or miscarriages, that many types of loss get lost.  So like ours where we were given miscarriage and stillbirth leaflets rather than ‘post’ neonatal death leaflets.  Doors slamming in our faces because she was too old or too young, it was something I wanted to change, leave no-one out. I can’t have anyone being made to feel the way we have done during this journey. Days where I have questioned whether our daughter even mattered; that’s not right.

Lost

Life for many families change completely, loss of their baby also brings the loss of friends and family. Leaving families alone and incredibly confused.
As well as supplying memory boxes (which was another thing we missed), which are filled with items to make memories with a precious baby who can’t come home.
To offer group support, advocacy, information and advice.
We didn’t get a lot of information when we left the hospital; things like the baby section of the cemetery in the town close by, or that there is a huge range of coffins, or that cuddle cots existed or that actually parents. Families can take their time with their baby after their hearts have stopped.
All too soon, the last goodbye becomes forever.
Something to assist families with these early days; questions they never knew possible, for us most of our questions were too late.

Everything Else

We also support the work of the charity Tommy’s. Raising awareness through them, for research to reduce pregnancy complications.
We have a Facebook group (which is Private)
And a Page
Find out more about when we meet, and about the Family Session coming up.
So, this is Little Daffodils.
If you have been affected by the loss of your baby.
Know that you’re not alone.
Little Daffodils