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#captureyourgrief Beautiful Mysteries

I don’t believe, she is in a better place or that she’s all around us.

I know it is easier to think this way. I do wish I could. Occasionally I’ll say hello to a passing white butterfly, but I’ve struggled with this over the whole time.

I’ve had friends who would say, “Melody’s visiting their garden”. Or “Melody had sent good weather” for what ever occasion they’re preparing for.

It made me question a lot.
Well, why isn’t she visiting me? I’m her mum.
Why can’t I feel her? Does she hate me?

I went over and over this so many times. It just added to all the guilt and anger I was feeling anyway.
I feel envious sometimes of people who are aware of their babies.

My children have that comfort for their sister, their Cloud baby. So now I’m not bothered by what others “think” they feel in regards to Melody, as long as her siblings have found something.

I won’t take that away. It’s all cruel enough.

I, of course wonder all the time who she’d have been. The thing that bothers me the most is not knowing the colour of her eyes.
How I do not know the colour of my daughter’s eyes?
It is something we all,as parents take for granted.
Do they have mum or dad’s eyes? It’s a normal, topic.
Yet I don’t know hers.
My eldest two children were from a previous marriage, we all have blue eyes of some shade. Easy.
When her little sister was born she too had blue eyes, then around her first birthday, we suddenly noticed her eyes were like her dad’s… Brown.
This of course caught me off guard, I assumed she’d had the blue eyes for so long, she’d taken after me.
Bringing me to wish even more to know the colour of Melody’s eyes. Finally triggered once more, when Melody’s second little sister was born,after a year of waiting, her eyes stayed blue. One of each.
Who is Melody?

Okay, I know I’m rambling,but can you see?
It is impossible to imagine who she’d be. Her hair glistened blonde in the sunlight, yet we’re red heads.
She feet wiggled when she wanted to get cosy. Like me (and her siblings).
She had her dad’s nose.
She raised her eye brows when her eyes were still closed, just like her siblings.
She really is our beautiful mystery.
Our miniature hero, with secrets to hold, a super power no one could ever know..

Note: I am working on a project,have been for a while that does involve Melody, an adventure of her own.
By this project,I hope this will help with my spiritual relationship with her.

#captureyourgrief Myths

There are a couple that stand out for me.
First the most obvious. Time is a healer. It isn’t. Not in relation to losing her.
The hard core pain does lessen. But it’s there all the time.
I had my first c-section in 2005, between that and the next one there were times it hurt. Not all of the times,but certain times I’d get a reminder that I’d had major surgery.
Same in between all of my sections. I’ve had five. Time hasn’t necessarily healed a thing, I’ve a scar, actually I’ve two section scars. They’re there. Forever.
In the early days time played a huge part in my thoughts. I became obsessed. Time made everything worse. Life moved on, but our little girl’s didn’t. It’s a reminder of how people forget, so easily.
Walking slow motion with flashes of light speeding by me. That is what I envisage.

The Great support.
Don’t assume someone else is there for the people at the centre of grief.
There can be times when you could be surrounded by five thousand people, but they don’t see you, you can’t see them, but to the world looking in,it looks like a village.
There’s never too much support. Never too many offers to talk,to have tea. To have a shoulder too cry.
I have touched upon this before,because support in such a shit time is so important to a bereaved parents grief process.
People who should have been there for me weren’t, it has effected me almost as much as the loss itself. It shouldn’t have been that way,my grief should have only been for her. And not for the support that wasn’t there.
I can’t talk too much about this part. It has effected me that much, I’d rather talk about the raw pain of Melody’s goodbye,than speak openly about the hurt I feel.
My energy should not be wasted.

You won’t upset me by bringing her up,and I’m not over her if I say I have 4 children rather than 5. I choose my audience. (Please take note,because you must be important if I’m sharing her with you).
I won’t cry of you mention her name,okay maybe I will, bit only very occasionally, the few times where someone may have done something out of their way, most people would get emotional over that.

She wasn’t poorly, she was premature but she was not poorly. Please don’t think that because she was premature,that she didn’t come home,that’s it’s okay for her to have died.
I’ve heard “ah,well she was really early”. Not helpful,and not a reason to brush off her death, imagine saying to a cancer patient, ” well, you did smoke”.
Not acceptable.
I know people assume it is OK to find silver linings,to ease the blow. But this wasn’t the case and her life mattered.
Up until a few days before her death,and even less than 24 hours she was doing well, full of drama and diva ways as she has left behind in her baby sisters,and what she received from her big sister too.
After all,she had red hair…

Finally, I really am neither crazy or contagious, and neither am I going to snatch your child (like EastEnders would have you believe)! I can laugh hard, like you. I can have a good time, like you.
I am lovely really. I just have a daughter,who is no longer with us,who maybe one day may end up saving yours.

#captureyourgrief Empathy

Day Six

I don’t expect people to understand, because the only way you’d truly understand would be if you were a bereaved parent too.

That’s far from what any of us already here want.

To have more thought to those who have lost children.

I know that you find it hard to find the right words to say, but here’s the thing, a lot of what is said to a bereaved parent, you’d never think twice in saying it to a widow,or someone who has lost a parent.

“God needed another angel”. For someone who doesn’t call our girl an angel, it doesn’t sit right. ” Why mine?”

You take a moment to think about the words or actions you’ve used for condolences.

” At least you can have another baby.” Now change the words to “At least you can get another mother or husband.” How awful does that sound?

Be kind to one another, listen.
If and when I talk to you about Melody, don’t fidget, it’s really rude, you may think you’re hiding your awkwardness, but really it is terribly obvious.
Her death is sad,it’s bloody awful, if you can’t find anything nice to say offer a hug,sometimes actions really do speak louder than words, don’t add to the hurt.
I’m not something you can fix and actually I don’t want to be fixed.
I will talk about her,because she is my child. Listen. I’m not contagious.
My reality is different to yours. But don’t treat me like I’m crazy.

#captureyourgrief The Unspoken

Day Five

There are so many things I’d like to include today, but some of the aspects are needed for other days.
The anxieties, I wasn’t expecting.
Time doesn’t heal.

Before I begin,I need you to understand I love Melody.
She is my baby number three,she completes my five children.
No matter what,I’d still chose her.

However.

I hate being a mum to a baby who lived, for just over a month then died… A dead baby.
Yep I said the two words together.
She’s not an angel; my neighbour’s granddaughter is an angel,the school mums speak of their darling little angels.
They’re alive.
She’s dead.
When I miscarried my innocence remained, that only babies die before 12 weeks gestation. It was rare,I knew of babies dying. But it’s meant to be rare,unspoken.
The hospital never had death in their plan.
Melody dying means I no longer care about the tiny dots,we made but never made it passed hands or feet. I can’t think of them, the nicknames we gave to them for a simple identity, mean nothing.
I hate this side,because before Melody died these tiny dots of ours mattered. They’re included in statistics, they have a mention in awareness I don’t need to be aware too.
My most recent miscarriage in 2014, my 4th miscarriage, my 5th loss,was of course after Melody. As the process begun I felt nothing,aside from the chilled numb feeling… Not again.
They deserve better.
I felt more of an inclusion with the tiny dots. People could relate.
Losing Melody leaves me open to personal questions, “Was it something I’d done”. ” Well,she was obviously too tiny to survive”. From people who don’t understand.
To things being thrown around within the community.
“At least if baby had lived like with neonates,I’d have photos.”

Just because I was able to take 100 photos, or because we saw a tiny smile, neonatal death matters. Her life,her death matters.

This shouldn’t be our story.
We shouldn’t have a daughter who has died.

#CaptureYourGrief Support Circles

Day Four.
Much like the grief emotion,support comes in waves. From different people,at different times.
Some support continued, it grew from the broken pieces that appeared,brought something amazing. Washed up on the sea, diamonds, gems. Once the waves rolled back they sparkled, no matter how beaten the gems were,they still shone in the brightest of colours.
The sea foam remained for a while,making up beautiful pictures of hope, of friendship. But at times they faded back, within the water’s edge.

Much like the sea,support circles-humans can be unpredictable, some add to the storm, leaving an aftermath of their own destruction.
But there are circles, who pick up the pieces, twist them,throw them…yet still make a beautiful rainbow.

There have been many,many people who’ve supported,then stepped back,many have remained.
I am grateful to every single person who has been apart of this journey, beit just in the beginning, or now. Everyone has a place.

But.
My husband has been my sunshine. No matter the dark clouds,the rain he stays. He brightens the most darkest of days.

My support circle is this.

#Captureyourgrief What It Felt Like

Day Three.
This page should be empty,non existent.
Truth be told there aren’t any words,or pictures to describe what it felt like,or rather what it FEELS like, the feelings don’t end,they just change slightly.

I really cannot put into one post just exactly how it feels.

Walking into the unit,where only a day before our daughter was doing so well,then to be told she won’t survive.
The early days are a blur, I wrote my thoughts, I can’t read them.
It takes my breath away.

I can’t really explain the feelings,not properly. The only way to know would be if you were to lose Melody, to be the one to hold her as she died. As she slipped silently away from us, her parents.
I cannot get this post right,to get the words out to say exactly how it feels. I can tell you, you can listen and say you understand. Your words are kind. But I simply can’t tell you.
I don’t want you to know either. Because that would mean,it would mean you’re in this club.

I still would have chosen her.

It takes your breath away.

#CaptureYourGrief Who They Are

Day Two.

Melody Caitlyn born at 26+6 weeks weighing 1lb 5oz. 670g. She was the size of a 23weeker, 23 centimetres long. 9 inches.

I had developed a life threatening condition called HELLP  syndrome, rare complication of pre-eclampsia. I was minutes from fitting, we were giving a three minute notice that a c-section would be happening.

She was supposed to be born quietly, she was expected to be ventilated for at least 10 days.

Not her. No.
 She squeaked, she let us know she was alive, promptly kicked the doctor on her way out.

Came off of her life support machine at 24 hours and the CPAP machine removed at 48. She wasn’t giving up easily.

Feisty,nicknamed Little Miss Fidgety Pants by the nurses,pulling 12 feeding tubes out daily. One set causing her to faint,and to terrify us.

She had a PDA, (Patent Ductus Arteriosis), a slight murmur on her heart, which had almost sorted itself by the time she left us, a cardiologist came to assess her, placing the gel on her tiny chest, she smacked him,repeatedly until he’d completed it.
A scan on her brain showed no abnormalities at that point of assessment, meaning she was most likely not to have had cerebral palsy.
Once we had been given her discharge date,we were simply waiting for her to grow.
Being a girl she had amazing odds.
She was coming home.
But she didn’t.
The week she died she had a transfusion, she was a little anaemic-normal for micro preemies, they have a lot of blood tests,so blood needs replacing. She wasn’t 100% but she was OK. They’re normally unsettled, need minimal care and feeding halted.

They decided,unbeknown to us to perform a procedure,that is quite uncomfortable for the babies, has to be done at the right age,and weight. She wasn’t quite at either.
The R.O.P testing. Retinopathy Of Prematurity.. Eye Test.
It is fairly invasive, quite a nasty test, eye lids propped open,their eyes are anaesthetized to check for blindness, to see whether laser eye treatment is needed.
Babies do get ill from the testing, a couple did whilst we were there,there were thoughts of meningitis but it was down to the test.

It is an important test, that really should be a choice of parents. Stevie Wonder is blind due to ROP. He’s amazing. He’s alive.
She didn’t recover.
Her o2 requirements crept up. There was a brief mention of meningitis.
However the day before she died,she picked up,her o2 was still higher than we’d like but she came out for cuddles, her brother saw her out of her incubator for the first time.
The following day we made plans,plans where her big sister was going to help with a feed, watch nappy care there were even talks of a cuddle with her sister.
Melody loved her siblings, she even had a brief smile for them.
She was meant to come home.
Yet instead, as we were at home getting excited for the following day, Melody was changing.
We phoned that night as we do every night,they said she was feeling poorly,but not to worry.
The next morning we called to discover they were about to ventilate her and to get to the hospital.

Everything about her final hours was too late.
They waited to see. It was too late.

The outcome should have been different.
At exactly 5 weeks old.
A Sepsis similar to Meningitis stole our little girl.
Her death review,her dying has led to changes.
More on call doctors at the weekend.
The ROP test being less invasive.
I just wish it hadn’t have been ours (well or anyone else’s) baby to have died to make these changes.

Melody Caitlyn
26.2.2012-1.4.2012
Our Miniature Hero

Note: I’ve not shared this for sympathy, for attention.
The ending of Melody’s story is the awareness I want to achieve.
We’re shy,we were clueless in the NICU.
Most nurses were amazing, but some forgot that the babies weren’t theirs.
Ask questions. Get the answers you understand, if you don’t ask to explain it slower.
Not just the NICU but if this is the journey you’ve landed on,then make sure answers are explained in death.
When she was alive we didn’t know we were allowed to touch her more than we could have,we didn’t know about milk donors,we didn’t know we could simply say no.

Even after death,we never knew we could have had the extra time, to cuddle,to bed share. To make precious memories. We were scared we’d hurt her.

Ask,no matter how small the questions are,they could make a big difference in your story.

#Captureyourgrief Sunrise Dedication

Day One.
A new day.
A new month.
A sunrise.

Another year of my participating in this project.
Reflection.
I have,today walked this path for four years and six months.
Looking back I’d never have imagined this far.

As I begin this month, I hope to give more light, hope to anyone reading. To teach you about our girl,about our early losses.
That baby bereavement doesn’t come with a right or wrong instruction manual.
What I means to be here, learning to walk. That four years on,I’m still learning.

Skies are so unpredictable, individual in it’s day to day existence. There’s expectations, when it should rain, when the sun shines how much snow falls.
As humans, expectations beyond our control are high.
With baby bereavement it is even higher; the need for parents to get over their loss. Babies, children are replaceable,but only to those who’ve either never lost a child or for a generation who thinks it’s ok.
I’d like to change this.

Today the weather, the sunrise is…

Taken in Somerset, United Kingdom. 
7:13 am.
For the first time on this day,I thought I’d actually leave the house to get my picture.
The lane was so peaceful,calm incredible that not two hours previous it was thundering and lightening.
*

:5am, I was awake listening to the crazy storm we were having,not feeling hopeful for that perfect sunrise.

I am feeling positive.

Capture Your Grief A Recap..

I took part in the first CYG back in 2012. The project co-insides with Pregnancy and Infant Loss Awareness Month-October.
To break the taboo,that is infant death.

My Capture Your Grief 2012

When I joined in, I assumed that the first one I completed would be my only one. I was six months post death of daughter. I assumed that one year would be enough.
Enough to heal, because time does that.. Enough “to be over it all”.
But then the following year offered more prompts.

My Capture Your Grief 2013

This was the year I discovered how cruel humans can be to one another. The project set for peace and healing,brought hate and pain. Trauma to hundreds of families taking part, who had their babies,their children, their memories and stories attacked.
An innocent public event was shut down. Even my own photos were attacked,photos of my live daughter.. It set me back months. Beaten because our daughter didn’t make it.
But thankfully the following year continued..

My Capture Your Grief 2014
I wasn’t going to let 2013 beat me, I wasn’t going to end on a low. I’m pleased I joined in. Another early miscarriage that year meant I was in a different place,different thought process.

My Capture Your Grief 2015

When October arrived in 2015, I wasn’t even sure I’d complete it.
Melody’s new sister brought anxieties, I’d either suppressed or didn’t know about. Overwhelming hormones, exhaustion consumed me. My heart for Melody, for the project wasn’t there.
I’d felt like I was back to six months post death rather than the three years six months I had reached.

I did not want or need to be there again. Come the end of the month I decided I wasn’t going to participate in the 2016 Capture Your Grief.
Well, this year ahead of October I am in the place I wanted to be last year. Opportunities have arrived, things are different.
I’ve learned to walk.
At four years old,I know my shoes, I’m not dark.
So with this year’s subjects,I’m hoping to bring out a positive.
A comparison from my very first in 2012 to this year’s.

To make aware that this is part of me,who I am.
If by joining the project helps others then I know the positive outlook I’m looking for this year,will have been reached.

I hope any baby loss parent reading can find the strength to join in. Carly Marie is a remarkable woman.

Thoughts to everyone this October.

Capture Your Grief 2016

Butterfly Award Voting Open

The Butterfly awards voting links are now open. A chance for people if they would like, to vote for me to win a Butterfly Award.
Nominated and shortlisted for the blogger/author category.
Winning an award such as this would mean the world to me.
But let me tell you,it isn’t about the trophy itself. Or even keeping Melody’s memory alive.
Both are important.
But I want to help, I want to change the world,to change how people think and react to baby loss.
For me being so open, isn’t just about a form of therapy, but to let others know, it is okay to talk about it.
The feelings they may have are normal.

Yesterday I was doing a little fundraiser, a coffee morning. Sadly so few turned up,but we did raise money.
The one thing that has stuck with me,is a set of people came in, they placed an order and sat. One person asked what we were fundraising for.
As per usual,I jumped at the chance to speak about Towards Tomorrow Together, mentioning Melody’s Voices, what the charity has to offer,who we support.
My awareness given.
Only body language from a person I was speaking to.
That uncomfortable twitch, I recognise so well, you know when someone is really comfortable with what they hear or see.
The awkward nod, the gritted teeth grin.
The silent expression, which means “please stop”.

She probably didn’t realise I could tell. She probably doesn’t realise that most baby loss parents have seen these expressions, the uncomfortable fidgets.
She probably thought her acting skills were better than she imagined.
Greeted with a ” that’s nice” and a change of subject,I didn’t want to push further. She may of course have a reason behind her awkwardness.  But to an unknowing eye, a disappointed ear, for a brief moment it makes me question.
Why Do I Bother?
The answer is simple.
These babies,these children, they matter.
Their families matter.
It is sad, nothing about losing a child is about pink rainbow unicorns. There’s no comparison.
Speaking out,making it less of a taboo helps.
Helps the parents,the siblings,the families.
Hearing “it’s too sad,let’s not talk about it”. Helps nobody, it just breaks people more.

Coming together, reading,listening raising awareness and funds, support the heartbroken friends or family members.
The fidgeting and awkward body language,screams volumes.

By writing,by talking I’d like to change these views, or at least make non-bereaved parents, or even older generations who find it hard to speak about such loss realise we’re not contagious.
Just because it is ” too sad” it can and should still be spoken about.

If you think I deserve a chance of winning. To break the silence. For my family. And for Melody,please take the time to head over and vote for me.

Julie Scott Butterfly Awards

The ONLY thing wrong about baby loss, child death isn’t the talking, it is the dying.