Author Archives: Melody's Mummy

Challenging taboos

Challenging Taboos

Taboos surrounding baby loss will I think always be difficult to break, as generations change people’s attitudes differ too. When someone in their 80’s tells you they lost a baby but have no idea where they are; or people of the next generation telling us how they wished they could have spoken more about their losses. It is not only sad for these parents, these families who have gone through such losses only to be silenced; but for the babies too, buried alone or with strangers even placed in mass graves.

They’re simply forgotten only to be spoken about via secret journals, family trees even parents who suffer from ageing conditions like dementia will bring up babies they once carried but never got to keep. The stigma surrounding baby loss, has changed somewhat but still not enough to remove all taboos.

 

Why Is Baby Loss Silenced?

As much as we want to be able to speak about baby loss should we want to, people have a great fear of sadness, from themselves and within a conversation.

There’s a fear of having an innocence taken, or that the bereaved are contagious and will in some way infect infant death upon someone else. This is where it becomes lonely. It becomes a life split between knowing when to talk about your child, and when to hide them away, purely to save ourselves from being hurt further.

 

Why Do You Feel That People Are Unable To Talk About Their Experiences?

Firstly, nobody should ever feel they HAVE to share their experiences, not everyone is happy or comfortable with sharing about their loss – that is just as okay as being open. I have gone through many motions of sharing our story, from being very open to hiding her. I have to admit I have also felt some kind of shame, having a baby who died just changes everyone around you, so sometimes it is easier to just not say anything.

In fact, since losing Melody I very, very rarely mention the miscarriages, which is definitely down to shame, because I guess I blame my body for letting these babies down somehow, so many times too.

Because of the taboo, it is the fear of avoidance or upsetting the person you are talking to.

 

How Do You Deal With Uncomfortable Reactions?

They used to bother me, hurt me. But I have slowly learned that most people really don’t know how to react, or know what to say. You then find yourself telling them that it’s okay, which can be difficult, when you’re trying hard to keep yourself together. Over time, you do learn who you can talk to more about your loss, and who you can only brush over; this is more about protecting yourself from their tears, sighs and eye rolls. These expressions are the last things you want to see when you’re talking about your child.

It is hard not to get angry BUT if you need to, then do. Ask why they find it so uncomfortable, you could maybe find a way of helping each other. This is definitely something I wish I had done or at least had the courage to do.

 

How Do You Break The Silence?

For me, it’s talking or writing; sharing our little girl, this has been incredibly important to me to get her story out there. I have never felt as lonely as I have being a bereaved mother, especially for the type of loss. The conversation can discuss miscarriage and losses through pregnancy, but as soon as I mentioned that she died at a month old, the conversation stops. The support networks shrink. Doors closed in our faces; I wanted to change this, to speak out for these babies, for these parents because they matter too!

Breaking the silence to me means giving her a voice, and making her known. I can’t hide her away, I can’t let her death mean nothing, and this is why I am here writing this.

 

How Do you Answer The Question How Many Children Do You Have?

It depends on who is asking. If it is a stranger passing the time of day, then I tell them just of the children I have with me. I have once or twice twisted the truth and said the full amount of children, but not stated any deaths.

But now, mostly if I think they are going to be lifelong friends then I will be truthful, I admit I do brush over it a little to soften the blow a little; to protect me and them I guess. I have been bitten so many times, where I have let out the full story only for people to use it as gossip, or an ice breaker for other conversations. That’s not pleasant.

There is a lot of guilt with this question too, about sharing your child’s memory and protecting future friendships.  I am definitely more aware of the question and tend not to ask, simply because you don’t always know the full story.

 

What Advice Would You Give To Someone Who Is Struggling With These Feeling And Feels That They Have To Keep Things To Themselves?

I think once you can find the confidence to talk about your loss, then it does get a bit easier to share, it just comes naturally. But again nobody should ever feel that they HAVE to share anything.

I did find social media a great help, it helped me to get things out without being face to face with people; at the same time it helped people to understand more about how I was feeling and why. Writing became my saviour.

I would suggest even if you write things down and never show anyone; getting things out of your system will help a lot. It will give you a release; to help you breathe.

Having such a loss can be suffocating, you can feel trapped; if you can seek support find what is out there, what is right for you.

Never be afraid of talking about your child.

Opening Questions 

Understanding Emotions

Tommy’s #togetherforchange

Understanding Emotions. Exploring Grief.

Grief affects people in many ways, each in a unique way to themselves. There isn’t any right or wrong way to grieve the life you have lost. This includes losing a child; we all know it isn’t the right order of life, this is what makes child loss so complex; it is the unimaginable, the unthinkable. No two people’s experiences are the same.

 

What kinds of emotions might you feel after loss, and how do you deal with them?

I think it is hard to fully explain what emotions you feel. I could say I was sad and devastated, but I have felt sadness and what I thought was devastation during my lifetime, neither of them could be associated with the aftermath of our daughter’s death. Neither seemed to match up with the pain that rips through your entire body; yet at the same time leaves you barely standing, but somehow you find the strength to leave the hospital and begin to figure out what the hell happened, and what would be next. You just keep on breathing.

You have to deal with it; there isn’t a right or a wrong way of dealing with such a loss. Many people assume that bereaved parents curl up in a ball and cry all day – so what if they do, if trying to sleep away the pain is a way of making the early days easier, then let them be. This wasn’t something we did, we had to grieve not only for ourselves but for my older two children too; we weren’t free to break in the way people expected to, we had their feelings, their grief to take into consideration.

I know people expected us to hide our loss away, but they had met and spent time with their sister, she wasn’t going to just disappear one day.

Everything about the early days are raw and overwhelming.

 

What are the common triggers for these emotions?

In the beginning, the sheer thoughts and memories of what has happened can be a hard trigger. Going over and over the hours which led to her death and knowing that no matter what thoughts enter your head; there’s nothing that will ever change the outcome. That part takes your breath away – every time.

The milestones which followed her death, especially within the first year but even more so the second year dates too. These are hopes and dreams which had been taken away; a missing child from events or birthdays. Not knowing who they could have become, or how they’d have fitted in within the family setting.

 

How Do You Deal With Grief?

It is kind of like learning to walk again, I am a completely different person to how I was before. It has been the most difficult times I have ever experienced, and hope to never experience such things again. As mentioned before, having the older two children, I had to learn to deal with my grief very early on. I couldn’t break the way I truly felt I needed, even the funeral there was no real room to collapse in a heap and sob loud sobs, to let myself go. I wanted to be strong for them. But at the very same time, we have always followed their lead; allowed their tears, (don’t get me wrong, they have seen me cry on occasions too) allowing them to feel their grief for their sister.

Giving up was never an option.

 

What Effect Did Social Media Have On You?

It became my saviour; I was very poorly during pregnancy and had made friends with people who were due the same time. They supported me throughout the pregnancy, and then continued to do so when she died. Online loss forums were also a lifeline too, it helped me to feel less alone. I felt more comfortable being at home, it was easier than watching friends cross the street or people just completely ignoring you. Social media, made the early days a tiny bit more bearable.

 

What Advice Would You Give To Someone Who Is Experiencing The Complex Range Of Emotions?

Please remember your baby, infant, child has died, there is no at least. Such a loss simply cannot be belittled or swept away.

There is no rush to find the new normal; there is also no pressure to lose your old self either. Take one day at a time, take one hour at a time if you need to; rushing through the grief process can at times set you back. Sadly your baby will always be gone, but self-care is incredibly important to recover enough to function.

Don’t be ashamed to cry, let it out – scream; sob if you need to. It isn’t fair and it should never have happened, babies and children shouldn’t be dying. So, letting yourself go to the emotions is more than allowed.

Don’t give up, you will find peace. One day, maybe not straight away, but you will learn how to cope, you won’t heal; you’ll just know how to make the grief comfortable.

 

There is no timescale.

 

Opening Questions

Tommy’s Together For Change

Tommy's #togetherforchange

Opening Questions

 

 

In March 2018, I had the great honour of being invited to be part of a major charity campaign; involving baby loss awareness. We had lots of snow at the time, so we weren’t even sure we would be able to go ahead with it. But the charity helped to accommodate us for the night and we were able to complete a series of questions.

July 10th Kicks off the campaign put together by Tommy’s – Together For Change (hashtag); to overcome the taboo and to break the silence of baby loss, to show there is support out there. The more awareness that is raised, the more it will hopefully get people talking.

To compliment my part of the campaign, I will be sharing a few of the questions for which I was asked, and the answers. The campaign includes several well-known faces, I am almost like a duck out of water, but if it means I can share our daughter a little bit more; then I am proud to be part of what will hopefully be Tommy’s biggest campaign yet.

 

Can You Tell Me A Little Bit About Your Experience?

I’d sadly had miscarriages, and I knew of babies dying after birth. But I only had heard of the babies who’d died with a poor prognosis, either during or after birth. I’d naively thought that once you had passed through the twenty week scan, which the chances of fatalities reduced to almost nothing. I assumed that we would be okay, especially as I had already had two living children.

How could I have been so wrong? When she was born at 26+6 weeks, I again felt confident that all would be well, that she’d get through everything that she needed to; after all when babies hit 24 weeks, it is a magic number, right? She had survived the first few days of her life, not only did she survive it, she sailed through it mashing all the expectations of a micro-preemie; she did everything that she was meant to, and more.

She lived until she was exactly five weeks old, as quick as that, she was gone. Sepsis took a hold of her tiny little body, and stole her from us. Not just her but our innocence, hopes for her future. Everything just stopped; plans and future thoughts were over. Memories which were made were turned into remembrances.

This baby who had plans for going home to her family, died. Life changed.

 

How Did That Make You Feel?

 

We were heartbroken; we had absolutely no idea how we were going to move forward from that moment. We didn’t know what would happen to us as a couple, as a family. It is the most difficult thing we have ever had to cope with. But because each loss is unique and individual to the parents involved, there is no real way to explain exactly how it feels to watch the life of your child drain from them.

There are no words. With this in mind, it can be incredibly lonely too. The death of our baby is fairly unique too, with the many, many baby loss campaigns out there; at times our type of loss doesn’t get mentioned or is placed as an afterthought. Which then follows the loneliness, and the questions about whether our daughter ever really mattered?

For me, sharing her story and assisting with Tommy’s I hope, that this will break taboos around infant death.

 

Tommy’s Together For Change Campaign

planning music for your baby's funeral

Planning Music For A Baby’s Funeral

Music can be such an important part of life. We have a soundtrack of our childhood; remembering the moments we had with friends or the memories of songs when big things like our exams happened.

When we fall in love we have a song to remind us of our love, the songs which become the soundtrack to our weddings. Music has a way of bringing every emotion, just by sound.

I used to love rock music – I still do, but it was my go to genre of music. Marilyn Manson was one of them. In 2011 we were picking songs for our wedding, and then again for our blessing a few months later.

A year later we were deciding songs for a funeral. We decided almost straight away that we didn’t want her to have hymns; although I do wish I had sung her at least one lullaby. We felt that hymns were for older people.

Songs for her funeral

We took a little time to think and to decide; we didn’t really know what would be right, but we also knew that planning a baby’s funeral wasn’t right either. We just went with how we felt as her parents.

Amazing Grace via Bag Pipes (sadly not real ones)

My Love by Sia

Every Breath You Take – By Sting and the Police

Each were perfect for her.

 

Music Changed for Me

I still enjoy rock music, but I have opened myself up to a whole world of different genres. I deleted a lot of my Marilyn Manson collection. I won’t go into details but if you know his music, you will probably understand why.

Other songs I began to hate, while other songs reminded me of the split life – the before and the after. Like Paramore Decode; it reminded me of such an innocent time in our life. Before everything changed.

 

Songs Which Remind Me of Her

Coldplay – Yellow. ‘Her’ colour is yellow, being a spring baby and the yellow flowers.

Bruno Mars – It Will Rain. We had amazing weather during the time she was alive, glorious sunshine in March. But the afternoon of her wake it began to rain and it didn’t stop, making it one of the wettest summers on record!

Joshua Radin – Winter. This song was on a television show I was watching when I was pregnant, of course it was winter we had snow that year too.

The Wanted – Gold Forever. Back to the colour, but the lyrics too.

Ed Sheeran – Photograph.

Ed Sheeran – Castle on the Hill

Kate Havnevik – Grace

Ben Cocks – So Cold

Aron Wright – In the Sun

KT Tunstall – The Universe and U

Avril Lavigne – Slipped Away

Pink Floyd – Wish you were here.

 

 

 

Discovering Different Music.

Since her death, I have discovered the most amazing pieces of music. Some to bring the first smiles whilst some sends shivers through your whole body.

Lissie – Everywhere I go

Sia – Rainbow (Not because of rainbows after a storm, but community)

Adaline – Say Goodbye

Ingrid Michaelson – Without You

Anna Nalick – Breathe

One Two – Without You

Great Big World – Say Something

Ed Sheeran – Small Bump

Sia – Angel by the wings

P!nk – Beam Me Up

Nick Cave – O’ Children

Sara Jackson Holman – Freight Train

 

Finding any joy in music isn’t easy, because it has such an impact on our lives, some songs which are loved and reminded of wonderful memories can never be heard again.

Planning music for a baby’s funeral is not right. But it is one of the few things we have left to do for them.

melody and me

Nobody’s Army

There has been so much in the media about saving poorly children, the fight for their survival, the fight to do anything but have to bury them. I can’t imagine what these families have to go through; our daughter was only here for five weeks.

As I see the scores of angry messages, the protests, the army of people fighting for their very last rights. The media, social and otherwise are filled with these stories.

Makes me question… Did WE love our daughter enough? Did we fight or try hard enough?

We have always had questions surrounding her death – our baby had the best odds, death wasn’t in her plans, she WAS coming home, no brain damage, breathing without a ventilator, she burped, she even smiled; she had cuddles, she was fed via a tube simply because she was too tiny to have the sucking reflex, which she was fast learning.

She STILL died.

There was no time for an army, a brief message on Facebook asking for thoughts, no options of fighting when we arrived. Just the words “She won’t survive.”

I’ll always question and blame MYSELF about whether I did something wrong in my pregnancy, or had eaten something that may not have agrees with her expressed milk.

I don’t know if I loved her enough, it was hard to love someone through an incubator, did she know that we loved her?

Did we fight and beg hard enough that morning? Maybe I wasn’t strong enough to fight, I wanted to believe me, I needed them to tell me that it was just an April fool’s joke. I needed them to tell me they were wrong, but once those words had been said, like a dagger to the side, it killed me yet kept me alive at the same time. Why wasn’t I strong enough to fight for her? To keep her safe? She wasn’t meant to die.

When those fateful words of death came, the only thing I could think of doing was to hold her. To know that we loved her in her final minutes, it really was minutes, from the broken news to her final breath.

I just wish I’d held her longer, kissed her forehead. I wish I hadn’t taken our time together for granted, and took in her beauty, to remember her soft skin, the warmth of her breath, her fuzzy hair.

How were we supposed to say goodbye? We DID – DO love her. Always.

Wishes are all we have. Guarding the dreams that should have been. EVERYTHING should have been different.

Melody’s Memories – Keepsake Box

memory box

There are four different boxes on our house. My older two children have one each, which they chose to put together; they chose what was going into them. They look at them rarely, but when they do they always try to include their little sisters, the girls who never met Melody.

Days after her funeral we were very kindly gifted a wooden memory box, personalised to her to replace the hospitals offering. It is one of my favourite things. Although I love it, I have also hated it; it isn’t something we open often, but it has been made easier by splitting the box into two. Having a shoe box with the photos of her after we lost her and painful documents have been easier to look through her “main” memory box. Both boxes remain tucked away in our wardrobe.

I wanted to share with you her memory box; because it is one of my favourite things of her.

Picture One

memory box

  • In Loving Memory of Our Darling Daughter poetry card, this was one of the few items in the box we were given at the hospital.
  • Child’s Health Record – the famous Red Book; it has one or two entries inside. I’m glad she has one.
  • Inside the little box was a gift from the Mayflowers (the mums who gifted us the box), there is a locket that came in the box too with Melody’s picture inside.

 

Picture Two

memory box

This was her ‘thumby’. Basically it is a dummy which is shaped like a thumb. She wasn’t supposed to have had it at the age that she did due to not having the right sucking reflexes, but she found hers a little sooner than expected was given this as a comforter and a way to teach her to suck ready for when she could take milk orally.

 

Picture Three

memory box

Apologies for the DVD in the pictures, it just gives you an idea of the sizes of some of her items.

  • These are baby grows, each are from 3lb upwards so they each were still too big for her, but they did make her look cosy.
  • The nappy at the top, you can’t buy in the shops, they’re specially made for micro preemies, even this swamped her but she certainly filled them well!!
  • Her first ever hat. So tiny and a little bit stained she didn’t wear it for long.

 

Picture Four

Her siblings, especially her older sister would always write to her, or draw her pictures; this one was on the side of her cot.

“Dear Melody come home soon”

Picture Five

Little Miss Star was a Christmas gift, when her first Christmas was missed. The Goblet of Fire; I was reading this when I had my hospital stay(s) before she was born. The morning she was finally born, my consultant came in and said all he had to say, just before her left her said to us that he wouldn’t be delivering the baby until I had read The Deathly Hallows (the final book if you weren’t aware). I think it was his way of trying to reassure us of such a scary time. A few hours later she was born. I never finished that book.

 

Picture Six

The pink blanket is one she managed to use all the time she was there, it was one of the unit’s blankets. She always looked so snuggly underneath it. Also in this picture is another of her vests, and a teddy which had been attached to one of her balloons, yellow as always.

 

Picture Seven

The one of her certificates she received while in the unit. They give them to all micros who hit 1kg; she had just hit it during the week leading up to her death. Born 670g she struggled to gain weight, simply because she would burn more calories fidgeting than she took in, her weight went up and down a lot; until one day she finally hit her first kilo. In the top corner, I was very pleased to have received a Mother’s Day card from her, complete with her photo and a foot print. I wasn’t allowed to visit on the day of Mother’s Day that year; being told “there’s always next year”. I just wish now that I had visited her.

And finally a dress. This dress is identical to the one which she was buried in. A couple of years ago, as I was putting away my youngest daughter’s newborn clothes which included a coming home outfit. It occurred to me that we couldn’t have Melody’s; so I placed a Facebook message and within a matter of days one of my friends said she had the dress. It may never have been worn by our daughter, but it is just a reminder of what she will wear forever.

 

Picture Eight

Includes all of the above but also.

  • Booties we brought in the hospital while we waited for her arrival.
  • Congratulations cards (her sympathy ones are in the shoe box)
  • Order of Service
  • A baby made of icing
  • A muslin square
  • A baby-grow with monkeys on it, she never wore it but we couldn’t let her sisters wear it.
  • Hats from Australia – her uncle spent the whole time she was alive over there travelling and brought her hats.
  • A nursing bra – crazy I know but she always pouched in there when we had kangaroo care.
  • A baby loss brooch.
  • A gifted personalised keyring
  • Christmas decoration that her older sister made for her.
  • Name wristband, it was attached to her cot, ready for when she was big enough to wear it.
  • Number One Candle from the first missed birthday
  • Finally a PE top and tie, from the first year she should have started school.

There should never be any pressure to keep a memory box or special space within your home. I know I struggled not having a shelf in our house that is for her, but now I have one – I don’t like it, but I can’t take it down because I think I’d have some kind of guilt feeling. For now it will stay.

Having the options for these keepsakes are so important to families, some hospitals provide them it is such a lottery as to whether or not a family will receive one. I was lucky to have met some wonderful online friends who clubbed together to buy us one. We’ll never forget their kindness.

This box isn’t a shrine, just little pieces of her.

 

melody and me

The Lasting Goodbye…Part Two.

13th April 2012.

The alarm bounded out.

But we were already awake; sleep wasn’t one of the options.

We had been dreading this day.
The children were restless, chatting at breakfast eyes wide with wonder.
My husband and I paced silently.

Numb.
What would this day bring?
Flowers were arriving, was this really all for us?
The sun was shining exactly as it did on the day she arrived; now it shone for the day she would be…leaving.
Set on auto pilot, we washed we dressed.

We remained calm, following the children’s examples. How were we going to get through this day? Any day really?
We made our way to our car hand in hand, brightly dressed so she could see us clearly, desperately hoped she could now open her eyes without pain.
We were still too early, clock watching to the last moment, the final second time stood still.
We arrived at the church to a small line of people, I can’t remember the order but there were people.
My legs felt like jelly, like my bones had been removed, my chest felt tight and heavy; yet somehow I managed to keep up right to keep breathing. I wasn’t sure if I needed to be sick or not.

Again we had no choice.
We followed the smartly dressed man into the church. Hands tightly held the four of us, too scared to let go unless we lost one another.

I could just recall the haunting sound of Bagpipes playing Amazing Grace,

I could feel myself detaching.

We were here for someone else. This wasn’t our story.
We continued to walk closer to the front of the church, when we looked forward, there she was a little pink box on another little table.

Only now we wanted more than anything for it to be the big clear box that she had been in 2 weeks before.
One last chance, one last hope that this had all been a horrible mistake, her final chance to let us know everyone was wrong.

The book “Dragonflies and Water bugs” was read to us all, the children concentrated on every word.

My son clung to every word.

My daughter nervously waited to do her part.

She wanted to do something for her sister.
A picture she had drawn, a story she had written. She had a love for her sister that would grow with her forever.
Another song was played, instead of hymns, she was far too young to have hymns, the song had far more meaning.
“My Love” By Sia

The tears hit, the pain knocked like waves smashing into my already broken self.

Would they ever stop?

Would I ever be able to stand from this seat again?
We blew her a kiss and followed her as the smartly dressed man carried her out of the church, to her final journey to the song of Every Breath You Take.

We felt too weak to carry her; we were still too scared we would hurt her.

The blessing was a private moment between my husband, the children and I.

A candle lit as the blessing took place, when all we could think of was her baptism should never have been like this.
We knelt beside her, and gave her a blanket of daffodils, some extra warmth because we didn’t want her to get cold.
The rest of our guests came forward so they could say good bye, and send her some pink balloons.
We had prepared 35 balloons and 35 daffodils.

One per day she was with us, never enough days.

A decision we could never change.

The chance had gone.
11am we released the balloons watching them fly high some together, some drifted; the drifters would be as Melody is now.

We thought this was going to be the worst day of our lives, but really how could it have been. We had already done that part on the 1st.
Flying solo, while we as a family carry her in our hearts.

People may wonder why we continue to remember and share these dates.

Can you remember the age your child said their first word?

Melody never did that.

Can you remember when your child first walked?

Melody never did that either.

The dates of final moments, final memories are all we have of her.

We had no choice in how happy the memories would be this is what we have; we shall continue to build a lasting memory.

Because that is all we have.

We never wanted to say goodbye.

Xxxxx

 

melody and me

The Last Goodbye…Part One

2012

 

Thursday 12th April 2012 I had to make a decision, a decision I had no idea whether I would regret or not. What was right, or wrong?

A painful decision either way to make.

We walked over to the chapel of rest our hands held tight, my husband had already made his choice and was set.

Yet to me, it felt impossible. But in truth it shouldn’t have been difficult; I should have known instantly, whether or not I would see my baby one last time.

Our names were called, and in that moment my decision had been made, I had changed a million times. We rose to our feet I took my husband’s hand; we kept close together and slowly followed the smartly dressed man…

The room was small, softly lit with candles to add to the effect.

A small table in the centre of the room, it was painfully obvious what was stood in front of us. It looked no bigger than a memory box, but definitely bigger than a shoe box.

The next question “Are you ready?” I know took us by surprise. I had almost forgotten that there was another person in the room.

Were we ever ready?

But this was not something we could put off, because we knew that the next day would be too late.

We nodded, holding each other tight, tighter than we felt strong enough for.

Terrified we had made a wrong choice.

The crochet blanket was gently pulled back, the smartly dressed man left.

“Have as long as you need”

But we needed forever, he couldn’t give us that.

We stepped forward slowly, peeking in not knowing what to expect.

A warning, a guide but nobody is ever the same.

There she lay peaceful, make up made her look perfect.

Almost like there was no reason for her to be there, if only.

Surgical tape had slightly embedded into her baby face, and the stillness that was blindingly obvious, no breath sounds no delicate baby snore, just the deafening silence.

We exchanged glances, and questioned

“How was this fair?”

“Why the hell us?”

“What had we done?”

“Was this all my fault?”

We didn’t know if we were allowed to touch her or get too close.

I wanted to cuddle her, but was afraid I would hurt her, although I knew that was now impossible.

We placed our photos and drawings the children had asked us to take, I stroked her face, suddenly remembering that her warmth had long gone, it had been replaced with an icy cold glow. It caught me off guard.

We still hoped that somehow she would open her eyes.

We were willing her to breathe. I held my breath in case I missed her chest rise and fall, in case she was moving. But that rise and fall didn’t appear, stillness replaced that wish.

Talking to her, telling her how much we loved her, how much we missed her already, wanting everything to be just an awful nightmare.

We felt lost, we held on to each other’s gaze, it was then we knew the time had come to tuck her in to her blanket for the final time, to kiss her good night for the final time.

Knowing we would need to remember how she smelt, how she felt, all in one movement.

It was our one chance.

It was our one final chance.

I can’t remember whether her coffin had a plaque, and if it did I don’t know what it said.

 

We lifted the blanket a corner in each hand, tears rolling down our faces we covered her, tucking her in replacing the blanket with each other’s hands walking back wards giving her a lasting Good Bye.

 

For the next day it would be the last……

 

 

melody and me

Day 35. And Then She Was Gone.

Her Dad phoned in as he always did. I don’t know why; but I never liked phoning in, he was far braver than me. She wasn’t feeling herself at 11pm the night before, but after the past week, it was kind of expected. They were going to wait and see for the Dr at 2am.

I was just waking up when he came into the room to wake me to say that Melody was feeling a little poorly over night – they were considering placing her on to ventilation. To me that wasn’t feeling a little poorly; this was something more.

I leapt from my bed and we tried to decide what we would do. We had my older two children; we had plans to visit just me and my eldest daughter. It was then we decided to get their Dad to have them while we went to see what was happening. We fully intended on returning to collect them to go and visit her.

We had a phone call asking if we were going to make our way over to the hospital, we said yes.

Dropping the children off as soon as we could, ensuring them that we’d be back soon, we would all get to see her later. Another phone call came; asked us how long we would be.

My husband and I talked on the way there, we were fully expecting them to tell us that they were going to transfer her to another hospital; they were just waiting for us to maybe sign forms. That is all we were expecting.

Reached the car park, where I placed a Facebook status, asking for positive vibes and wishes for this little girl, who we thought was going to be moved.

We buzzed ourselves in, the atmosphere was different; even before we had walked into the actual unit – something was off. We entered the room, saw boards around one bed; then headed the opposite direction to where she had been the day before. She wasn’t there. Where was she?

She was indeed in the bed space behind the boards. There were no other parents, there seemed minimal staff; we stood by the nurses’ station and was greeted by her paediatrician.

“Melody became very unwell overnight. It is expected that she won’t survive.”

What the actual fuck?!!

My legs turned to jelly, I hit the ground but I remained upright – somehow. She was still talking, I couldn’t quite tell what she was saying; I just looked towards the screens. She was in a bed space that she was never in, even when she was first born – she was now in the highest of point of intensive care.

I couldn’t stand the sound of her voice any longer, I wanted to slap her, grab her and scream in her face to tell her to stop – to stop lying, to just shut up.  I needed us to be with Melody. We walked behind the screens, to find a nurse performing chest compressions. She’d had her heart restarted five times in the final hours.

“Do you want to hold her?”

Of course, I did  – I didn’t want to let her go. How was I supposed to let her go? How exactly was my heart supposed to beat?

They gently lifted her from the incubator, leads and tubes covered her tiny little body; this tiny little ventilator up against her face. How were we supposed to do this?

Melody was gently placed in my arms. She was so peaceful, she didn’t look like she was dying.

I asked, begged, in fact, to be told that it would be some sick April Fool’s Joke. I looked around at each of the faces, none could make eye contact – none could tell me that they were lying; nobody could tell me that it was all going to be okay. Nobody. How was it ever going to be okay again?

I passed her to my husband, I couldn’t hold her; I am her Mum I was meant to protect her, I was supposed to do everything in my power to keep her safe; it was my one job. I couldn’t just sit and feel her life leave me, I couldn’t just watch helplessly as her restless body took its final breath.

The ventilator was removed, they were pressing the end, watching as we nodded to say stop. I didn’t want them to stop, how were we meant to say stop?! I knew I needed to hold her; I asked for her back, I whispered in her ears, desperately hoping it would help or that she would hear me. Begging her to stay, promising that I loved her, if I loved her more would she stay. Begged hard until I could no longer find the words.

They stopped, the little piece of plastic was removed; we held her together. We cried; they cried. She remained silent and peaceful. I could hear them whisper that she was gone – but she wasn’t she was still in our arms, she was STILL in our arms; she hadn’t gone anywhere.

Her heart stopped and everything changed.

She was meant to be our Rainbow Baby; our honeymoon baby. Instead, she became the baby who never grew up. Our missing note.

The start of something new.

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.