Category Archives: Uncategorized

Cry

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

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

“They’ve been crying again.”

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

“They’re obviously not coping.”

“They should get help.”

 

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

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

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

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

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

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

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

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

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

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

I always am.

Guest Post Request. A Voice.

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

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

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

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

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

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

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

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

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

Message for more details.

julz@melodyandme.co.uk

 

Melody and Me

 

End of Term

The further away from the initial death you go, the less milestones you think you will come across. But truth be told, I think there will always be something which will connect your baby and the things they should have been doing. September 2016 should have been the year she started school, out of all the milestones to reach; I had assumed that would have been the last one – at least until secondary school starts. But there will always be something.

Sports Day

These next few weeks up and down the country (UK), parents are heading out to watch sports days, or eagerly waiting for the day to finish learning how the day went. The children from Reception classes excitedly taking to the field; looking out for their Mummies and Daddies, in the hope to catch a wave.  Fresh yellow P.E kits, tiny bean bags and hoops are spread around the area, ready for the games to begin, lines painted perfectly ready for the young runners to begin their races.  
Children’s names being called around the field, cheers echoing across as their child nears the finishing line, louder squeals for the ones who come first, encouraging voices for the ones who come last.
It dawns on me, that some of these children are at the age of which Melody should have been, the friends she could have made, the Sports Day she was meant to be at.
Another ‘first’ that she has not done; another event from which she is missing.
Another day where life just goes on, a day for quiet reflection, thoughts to how she would have been during the day.
Would she have been sporty? Which part would she have enjoyed? She was feisty during her time she was with us; would that have led her to be a determined winner in the field?
Would she have struggled with the courses?
Would she have been embarrassed by her parents calling her name?
Or would she have loved the attention?
Another missed photo opportunity, as she would have returned to her class room all wet from sweat, hair falling out of her hair band, happy to have finished or happy to have competed.

I never thought it would be such a big deal.

School Report

As the school year draws to a close, parents evenings are to be had, school plays performed, end of term parties, new teachers to be met, school work brought home, reports to read.
I have kept all of their reports and as many of their pictures as I have space for, there have been a lot over the years. No use to anyone but sentimental, in the hope that one day when they get to adulthood, they can giggle over the work they produced during their childhood, you know the pictures of their parents with huge heads and stick men bodies.

This has been another thing that has dawned on me. A missing school report; a document to prove that she would have been at school this year, a story of who she would have been at school. Information about what subjects she may have been good at, or ones that maybe she’d not really enjoyed. To know how much the prematurity would have affected her. As with all very premature babies there’s a risk of slow development, at least slower than their peers, but she never did follow any text book.
All the reports and meetings with professionals; a bit like parents evenings I guess but in the NICU were all great; she was doing above and beyond expectations. I’ll always wonder, or at least this time of year, whether her school reports would have followed suit.

“Melody is a lovely addition to the class; a little headstrong.”

As I wrote about my living children in their fantastic reports and end of term plans, I realise the only new photos of her I can share are of a headstone with new flowers; with the words.

Nothing to report.

Lost celebratory words.
No acknowledgement of a girl who should have been five.
Of a girl who should have almost completed her first year in Primary School.

Absent – Unauthorised. 

Due Dates

Due Dates are never set in stone, they’re estimated, a rough idea of when you get to meet your baby.

A countdown to meeting a brand new person, fresh and new, a person to watch and grow into their own. Made by you. It is I guess a blind date, you know you’re meeting your child, but have no idea on what they will look like, you may not even know the gender, a complete blind love. 
The date that could change your life. 
Not everyone remembers their baby’s due date years down the line, others use it a conversation starter, an ice breaker or something to giggle about at their son’s 18th birthday, when he is late for a party and he was 13 days over due, “He’s always been late, he’s never changed with his poor time keeping.”
I remember all of my children’s Due Dates, my eldest born 12 years ago, was due 29th April, but due to pregnancy issues, we made it to the 8th with an induction. My son had a due date of 19th January, but I had a c-section on the 14th, he was born on my husband’s due date, my husband born on his due date – they had switched.  Baby four, her due date was 1st April, but that too was changed for a c-section 15th March, baby five was due 4th July was born 15th June. The dates are all special, and a part of their life beginnings. 
Melody’s first Due date was 20th May, this is actually our wedding anniversary, but the date was put back to 28th May, a date which became our official due date, as the pregnancy progressed we were then given a c-section date. She was due to be evicted on the 22nd May, a Monday. 
We had everything planned, even a lift to the hospital as my husband wasn’t driving at the time, we wanted to keep the date secret to people around us, to keep it a surprise. 
Her life, her journey had begun and ended long before we ever reached May. 
We’ve hit that day today, yet it seems so long ago since we had her birthday, of course it is, nearly 13 weeks ago.
For me it is the last of the dates, where I feel I can remember her in her own right, it is a date I hold tightly on to, a day which is connected to her. 
Another date that in an ideal world should have been so very different, as with the other dates I hold on to dearly. 
Her birthday. 
Her Anniversary. 
Her burial date,
Her discharge date,
Her due date.

They’re so significant, and are what make her feel to me like she existed. 
These dates are somewhat official.
They’re recorded, they’re on paper, even in stone, they all prove that she existed. 
Because sometimes, very rarely, I am scared I am forgetting her, that she is just a part of my imagination, that sometimes aside from our family unit and occasionally other people who remember and speak of her, it can feel like she was never here. 
Forgotten.
These are the bad days, the days when it hits like I have lost her all over again. 
As if it was all just a dream. 
It has been far too long since I have seen her, and cuddled her. 
Since I breathed in her smell, stroked her soft hair and kissed her tiny head. 
Since I felt the warmth of her body against my skin, since I last told her I loved her. 
Since I said goodbye. 
Today is another of those, should have been days. 
Yet instead today is just another day. 
Another day without our little girl.
She was perfect, 
her tiny little fingers, 
her gorgeous little toes, 
she had strawberry blonde hair, 
and the cutest button nose.
She was so feisty during her 35 days, 
my only wish is
that she could have stayed and played.

Our little Mayflower

Please don’t forget her. 

When Your NICU Baby Doesn’t Come Home.

As I walk away from the cemetery once again, the place I have visited many, many times since 2012. As I look over to her resting place, saying goodbye to a baby who never grew; waving to a daughter who never had a chance to wave.
We don’t visit very often, it has never gotten easier, I don’t think it ever will, it isn’t something I will ever get used to.  I wouldn’t stop visiting either, it wouldn’t be right not to.
There are times as I walk away, it gets me thinking – about the bigger picture, so many what ifs and the whys. All these years have gone by, yet these feelings aren’t just something that has goes away.
Technology has come such a long way, in the news we’re told of the fantastic breakthroughs of babies surviving against the odds, more and more babies go home to lead normal lives, of course there are those who don’t quite sail through, but they do still get to go home and be with their families, to make the best of their memories, their lives together, which is fantastic.
I’d been aware of miscarriages (having had my own) and babies who die during or just before child birth, I had assumed once past certain stages of pregnancy and birth, hearing a tiny squeak from beneath the curtain I was free to breathe a sigh of relief, it was the start of our hopes building.
My first baby went into NICU for just over a week, she’d been a little early and on the small side, it was such a scary thing, pieces of machinery everywhere, these clear plastic boxes everywhere.  At nine days old we went home, our NICU journey was far behind us, it remains as part of her birth story, the beginning of her life it was how it was meant to be. Because of this amazing outcome, we were positive in our thoughts when baby number three was born just under 14 weeks early, given 80% odds in her favour. Everything looked so encouraging. I’d walked out of NICU before with a baby, for me there was no other option…
0From the moment Melody was born, she was on a journey to recovery, a journey that was going to take her home. Surpassing all expectations of what was expected of a Micro Preemie. Her heart lost its murmur, her brain showed nothing of the injuries we had been warned about, which can be common in babies of her size, she was active and mischievous. The worst case scenario for her, for us as her family was for her to come home with Home Oxygen, even then they said she may have come off of it on discharge day, we had that date set too. Everything was set; all she had to do was to put on weight.
 I had done everything I was told was right in my pregnancy, I trusted the professionals, I reported low movement, I reported the swelling (although I was told off for that), I stayed in the hospital to rest leaving my two other children at home, I tried to eat the best I could with HG. Once she was born I put her first, expressed around the clock, whilst the children were at school we visited and sat by her, talked to her, loved her. Watch her become the character in the NICU we expected her to be. I didn’t rest post HELLP, resulting in infections and severe headaches. I was terrified to say goodbye each evening. I did everything I could.

But she died.

Could I not have done more? Or kept her safe?
We discovered very painfully that not all premature or NICU babies get to go home. Sepsis similar to Meningitis took her, she never took a step outside, yet she contracted something I had only ever associated with being contagious in school children, not for our baby who had never felt the rain or ever took a step. She wasn’t even old enough to have vaccinations. Yet somehow we still lost her.  No amount of amazing new medical breakthroughs or training can bring all neonates home to their families.
We had allowed ourselves to love her, to make plans. The love and grief for a baby who had only lived for such a short time, who had never come home is so misunderstood, the confusion from people as to why we still love and continue to grieve for this baby. For someone so small, and we had only known for a short while, she turned our whole world upside down.
The hopes and dreams taken, everything changed.
I don’t really understand, even now how our daughter, our seemingly strong, premature baby who fought so hard to be here could just die. I don’t think it is something we will ever understand. Generally Post-Neonatal death isn’t spoken of a lot. Babies who stayed for a while but died, nobody wants to really make a connection, conversations or subjects changed to something else, maybe even to talks of miscarriage, it seems easier for people looking in to relate to sometimes; if it hasn’t affected them personally, they have most likely known someone who has been affected; sometime it can be easier for the listener to brush over our loss in such a way, maybe  it makes it easier on them, or because it isn’t something one can fully understand.
This is where it falls painfully hard for us, for me. I am incredibly open about the loss of our daughter, and will answer any question I am given if I can.
There are no comparison memories to look on. So many years ago this happened, or that happened, there are no tube photos and ones without – well there is but I can’t share those. Having photos doesn’t make it hurt any less. Having other children doesn’t make it better either.
The death of a baby was never ever part of the plan, bringing home our baby that was the deal.  
Instead you’re left with guilt, the flashbacks, the constant questioning. I am honestly not torturing myself; I am still trying to work out how it is possible that we ended up being parents to a baby who didn’t make it.
Barely a statistic.
Whilst we remember and speak about the babies lost in the womb, the ones who died just before they are born or shortly after birth. Never forget the older ones. Where hope was given but snatched away.
May should have been her due date. Middle of May then should have been her discharge date.

I still cannot believe it happened to us.

Annual Parish Meeting – Community Fund

On Tuesday 25th April, we were invited to attend our town’s Annual Parish Meeting. We applied for the local community fund, to enable Little Daffodils through Towards Tomorrow Together to provide a service locally for people who have experienced the loss of a baby during and after pregnancy.
We were very thrilled with the offer of this fund and the amount in which we have received. It will go towards much needed awareness raising for the charity, the group and of course to break the taboo barrier that is baby loss.
There were other community groups there too to receive funds, for their groups, it was nice to hear of other organisations which may not always get the awareness.
After the Mayor handed out outstanding awards, it as the turn of the community fund awards, I was first up. I am an incredibly nervous public speaker, and in all honesty was hoping I wouldn’t have had to speak…but I wasn’t that lucky. Mayor Dave Bulmer asked if I could do a short talk about what we do. This time, for the first time in all the times I have recently publicly spoken, I had no piece of paper to read instead I had to stumble my way through making a good impression. I think I may have pulled it off. I love talking about the charity and of course Little Daffodils and how it was born, I am incredibly passionate about trying to make a change in this community. People even came up to us and said what a wonderful thing to have put together; I was able to give our details to Chard First Responders too.
I thanked the Mayor and the people in the room for the opportunity for Little Daffodils to shine, told all those who listened that we support families who have lost their beloved baby through pregnancy and in infancy.
I must add that all through the existence of Little Daffodils (which began life as Melody’s Voices), the Mayor has been incredibly supportive when he can, attending our launch of our first group, donating the use of the guildhall for an event; Thank you.
I really hope the next Mayor whoever that may be will give us the same support, it has been slow, maybe even hard at times to get the backing needed for this local group, but it has been incredibly worthwhile. Even if we only help 1-2 people a year, it is 1-2 people who will feel less alone.  
A huge thank you to everyone involved in letting us have the community fund, because without these funds the community would end up lacking far more resources than they already do.
If you’re not already aware Little Daffodils meet on the first Tuesday of the month, from 730pm, upstairs of Eleos Café in the centre of Chard. Our Facebook Group is here.
Thank you for reading; I will keep you updated with our up and coming projects.

Now, to learn Public Speaking Confidence…

I Miss Her.

March is always a weird, limbo month which brings ups and downs. Waiting for that next anniversary, the date we’d love to miss, then the date that should have been, dates which mean nothing to anyone else, but to us who feel them, who feel lost and confused, these dates are at times hard to breathe through. 

It is all feeling particularly surreal this year. There have been moments where none of this is our story, unconnected to the whole thing. Then the days where it feels like new, the raw emotions as we joined this world; this I’ve hit this week, I found myself sobbing in the car on route to our weekly shop, something I hadn’t done for a long time, you know that cry where you can’t breathe tears roll down your cheeks, feeling broken and weak, feeling unsure on how the hell it has been five years since we last saw her, our daughter.

The thoughts of disbelief, which never seem to go away.

Most of the time it can feel as though no-one understands the way I feel; confused because I still get emotional over these weeks, avoidance is the key; at least that is how it feels.

There are times where I have no idea who I am any more.

We’re at the half way point of her living weeks. In less than two weeks it’ll be the anniversary, no more “on this day posts” for another year. 
Five years ago this week we’d been given a discharge date, all set to count down the days to come home, waiting for that all important weight gain. She was never meant to die. 



 Five years on I still cannot understand why. 
I can’t understand any of it. I don’t know where the time has gone, yet I stopped clock watching at the two year mark, it should come as no surprise that we’re here.
No matter how many posts I write, I will still wish that things were different, wish for her to be with us, adding to the chaos that is our house.

I cannot believe she is gone.

It is ok, not to be ok

Five

I’m actually fairly lost for words, I’ve already written a post for her anniversary in April.
But ultimately, her birthday I cannot comprehend that we have a 5 year old daughter, her birthday being today, yet we don’t have a 5 year old.
The years have move on, people have moved on. Everything changes. People you’d imagine would still be around aren’t, people you never expected to be now are. Seems such a long time, but it really is so short.
Time hasn’t healed a thing. it actually makes me watch it more.
I’m feeling particularly numb and cut off from everything this year.
Everything about this year is so similar to that of 2012 (bar the weather). Today is Sunday, her birthday; she was born on Sunday.
The day was glorious sunshine, it continued to get hotter the whole time she was alive, I even had sunburn in March, was wearing vest tops and flip flops.
I’ll always remember the day she was born, I remember all my children’s days of births, hers is no different.
But I wish things could have been different. I truly believed that once the first year was out of the way everything would have been back to normal, I would have healed, moved on and forgotten. But I have learned that isn’t going to happen, I’ve adjusted and adapted in a way I feel comfortable, unfortunately it hasn’t been understood the way I have found my coping mechanism, I’m open and honest, I’m still breathing. I never imagined I would be where I am today.
I still don’t understand how or why she died, the unfairness of it all, that emotion is as raw now as it was back then. The pain remains the same, simply because she is still not here, but she is still my daughter, no amount of eye rolls, back turning or conversation changes will stop her from being our little girl.
The little girl who is so beautiful. She had blonde hair with a hint of red, so maybe like her brother, but lighter, her eyes were a bluey colour but under the unnatural light of the unit it was hard to tell, I’ll never know what they would have been, that will always bother me, and I will always say that. She had the most delicate soft fingers, 8 fingers two thumbs, she was always fidgety, she was on the go most of the time Little Miss Fidgety Pants. She had character, she was her own little person, living inside a plastic box, in a blanket of wires. She burped milk out of her tube, pulled 12 feeding tubes out a day, smacked the cardiologist, kicked the doctor delivering her, and had a dummy weeks ahead of schedule, she was even trying to root the breast.

Little Diva. 
(The brightness of the photo shows just how sunny it was outside, her first bed was by the fire exit).

There is a well known quote in the baby loss community, about babies who die in the womb never feel pain only know love (something along those lines). It struck a chord with me.
I have no idea if she was in pain, particularly in her final hours, she went through so much in her final 6 hours, she didn’t have us. I cannot forgive them for not phoning us sooner. I can’t. I’m allowed that little bit of bitterness.
I worry she didn’t know that we were her parents, I was her Mummy, looking back I sometimes wish (had we known she was going to die one day, which we didn’t), that we’d not had so many visitors in, just grandparents, that we had kept her to ourselves our little unit, to not have let anyone else come to say goodbye. Too much went on that final day so many, many regrets that we can never ever change, but cannot ever be forgotten.

I bloody miss that girl so much, I just wish people would understand, or at least try to understand.
I am not the person I was. I am never going to be. You cannot expect us to.
I guess we cannot expect understanding either.

I’ll never be able to comprehend any of it. 
It feels like she is memory almost forgotten.

Rather than a party today, and a living room full of paper, we had lunch at a local pub which has some how become a traditional place to have her birthday lunch. We usually have a family and friend get together, today it was just us. It was perfect, we’d been to visit before hand took her some flowers.

Before the judgmental thoughts enter any heads, they always like to have a photo with her, it’s sweet

Today is her day. 
Her birthday. 
Today she should have been Five. 
Would have given anything to kiss those fingers again..

Stages

Denial. 
Anger. 
Bargaining. 
Depression. 
Acceptance.

The stages of grief.  
The stages that once all are completed, everything is better.

In almost 5 years since our daughter died,  I have stepped and paused on each and every stage. 
Several times. In no order, but they’ve all been met,fought with on occasions. 
Most people know the stages,  and in the beginning in my head, with all the time healing quotes,  the obsession of time I had as the weeks rolled by I would attempt to tick the words off the list in my head.
Denial – ✅ 
Anger –  ✅ 
Bargaining –  ✅ 
Depression – ✅ 
Acceptance – ✅

All completed.  

Only something would happen, a trigger, a thought; then one of the stages would hit again.  Not all at once or again in any order. 

I’m currently in yet another run up to a birthday without the birthday girl, the remembrance weeks of when she was alive, and real, then of course the anniversary. 
Each of the above arrive in waves, each wave named after each of the grief sections. 
Looking through photos of her, which isn’t something I do often, maybe for a project or, well I don’t really need to justify myself the times I do, I can’t quite get to grips with how she died, this baby, tiny little baby who gave us a smile, fed, pooed..how she just died. 
It isn’t about acceptance or a denial thing, lets face it none of the five titles really are equipped to be included in baby/child loss. 
I know she isn’t ever coming home, that she is dead, we all wish that weren’t true. It is comprehending such a thing happening. 
Even now, looking at her photos, I still cannot believe this happened to us. 
Yet you still get people say “It happens for a reason.” 
I think this is probably where the anger part comes in to play. 
Every year these run ups to dates bring the waves, since the turn of the year, I’ve hit a couple of them, I’ve now come to realise that this time of year is difficult, how can it be anything but? 
Some waves are rougher than others, nothing it seems is going to change that. 
For me the firsts were extremely painful, full of overwhelming ‘what the fuck just happened’s’?
 The firsts are the worst bit. But then it turns into the seconds, when you can no longer include them in the year, or say “This time last year.” 
The moving on of folk who offered mere condolences, life goes on. 
The stages for those who don’t feel the full ripple effects, can be ticked off the list. 
It is time to move on, “it’ll only make you sad…” Another of those beautiful quotes. 
I’ve found time hasn’t healed a thing, having spoke to others they feel the same too. Hitting this 5th year has floored me somewhat, it is such a significant number, I just didn’t realise just how important the 5th year would be. 
I’m back to the feelings of
 Denial. 
Anger. 
Bargaining. 
Depression. 
Acceptance.
Stroppy Bitch Syndrome,
Too many time limits.  Too many tick lists.
I’ve added one..
That’s me, around the same time each year, I guess there comes a point where I just can’t tolerate, little annoyances,that are probably not even that annoying.
Patience is incredibly thin.

It is such a hard thing to explain why.  Watching friends’ children turn the age ours should have done, it is such a happy event,  but it is so bittersweet,  filled with many emotions and thoughts.
Buying flowers for a child,  cards that will never be read.
It isn’t surprising that I end up with stroppy bitch syndrome.
But I do hate the feeling too. But I know once the heaviness of the next few months lighten, then my patience expands more.

There is certainly no black and white when it comes to the stages of grief, they certainly don’t disappear once you’ve completed them.  Let’s be honest they’re not exactly an accurate quide, or at least for me I don’t think it is.
These waves are crushing don’t let me paddle alone.  I don’t want to drown. 

We had a visitor..

Short, but exciting one from me this evening. 
I’d told my children we were expecting a visitor, but I didn’t tell them who this visitor would be lots of guessing, although my son hit the spot at one point, I slyly avoided his questions.
With just over a month to go, we had a form of seasonal celebrity pop in to see the children. And what a lovely experience it was too. 
The children’s faces lit up when he arrived, 

Well, the older two loved him. Our three year old hated him, and the one year old really was not sure in the slightest. 

My son even gave him a tune.

Now, this blog isn’t the place I normally speak too much about Melody’s siblings, but there is a reason. 
Our magical experience, has been thanks to local charity Towards Tomorrow Together; where they provide Santa home visits to children who have lost a sibling, along with everything else they provide throughout the year. 
Giving the children some well deserved magic, whilst us as parents watch with such Joy the smiling faces the Santa has caused. 

It is such a wonderful thing they offer, and I am so pleased that we gave it ago. 
They all each received gifts, a candle making kit, a mini skate board set, inflatable Olafs a book and a stuffed squid (not real!)
He certainly has put me in the Christmas visit, I hope all his other visits are as successful.
Thank you .
Christmas is always a bittersweet time for us. 
But it was one of my promises to Melody, 
which was to make Christmas as magical for the children as I can.