Tag Archives: neonatal death

Melody and Me

Grief Timescale – We’re Not Ill

My grandparents are in a cemetery; my Dad is in the same one, burial spaces decades old. I don’t visit them often, not because I have forgotten them, or I am finished missing them; their cemetery is just outside of our town, it is not always easy to pop out to visit them.

I talk about them; share memories. People listen and they too share memories of their missed loved ones.

In the years since I have lost my grandparents, since I lost my dad, since my mother lost her husband; it never ever occurred to me that there was a time limit of how we grieve.

Of course the loss of these people, were – are very different to losing our daughter. Losing her and watching others go through the loss of theirs; the way in which society brushes off our losses.

When we visit our daughter, which we don’t very often these days; we do at least for special occasions; like her birthday, anniversary and Christmas; more often than not carnival and Halloween too. As we walk through the cemetery and see beautiful fresh wreaths places onto graves whose names have faded, or are decades old; still loved and still very much a part of whoever tends to said graves. I would never judge, or have ever thought of this as an odd thing to do.

I certainly would never question their grief, or that they still tend or speak of them. Every single person’s grief is individual, we all wear it differently.

What has led me to here? Well I came across a news article about a Mum wanting to decorate her baby’s grave. This isn’t an issue to me, or to anyone other than the family. But I made the mistake of reading the comments from the general public – our society; whilst I have no idea who the family involved are I think it effects every single bereaved parent.

There were comments after comments about the Mum needing help, counselling; how she should concentrate on the children she does have. That seven years is too long to be grieving or visiting a grave.

I don’t think it is because I am a Mum who has buried her child; but it would never, ever cross my mind to question the grief of anyone – to judge another person visiting a lost loved one.

Can you imagine going to someone and passing comment about how they visit their husband too much? Or that they talk about them too much now that they’re not here.

I genuinely cannot understand why society feels the need to judge on such a personal thing, an emotion often raw. I am five years down the line – almost six; but there are some moments that will catch me off guard and take me back to that raw emotion of hearing the words. “She isn’t going to survive.”

With me being five years down the line, I have questioned myself about whether I talk about her too often; whether I visit “too much.” I have also often wished this had never happened, that she wasn’t my daughter; I have also debated about never visiting her grave.

But I can’t simply block her out; and I am no one of those people who doesn’t believe she lives within us, if you have followed over the years; you will know this is something I have always battled with myself about.

Letter M in a garden.

When I don’t visit I get that huge guilty feeling, especially if it has been weeks on end; I also feel guilty if I don’t take her something; I know she doesn’t know any difference –  and I am painfully aware that she is dead. But I am her Mother; just as I feel guilty when I can’t watch my son’s choir concert, or forget his University show.

The times when I can’t afford to buy my eldest the latest Now album; or the days when I accidently don’t treat them all the same.

So, when I read how society believes I should be how they think I should be over her by now; how visiting however many years is unhealthy. Let me tell you, the only thing that is wrong here; is not that I cry for her occasionally; that I miss and talk of her.  Please help me to understand.

It is that she IS dead; there is absolutely nothing I can do about that; but I will forever be her Mum. I can’t cuddle her or tuck her in to bed, I can’t see her walk across a stage ready for her Nativity; or hear her sing out of tune.

I can’t have a school report; or see Christmas Cards for her from her friends. I’ve never held her hand to walk across the road; just like she will never have a sleep over or taste ice cream.

She, we will have never experienced any of these things.

So if I am still visiting her grave; or including her this year – five years on or in 25 years; please don’t judge; be kind; don’t assume that I am ill.

I am her Mum; the only thing that is wrong about this is that she died.

Neonatal loss awareness

Neonatal Loss Series – Marisa’s Story

12 Days – That Is All I Got

(By no means am I trying to discredit miscarriages or stillbirths.)

My loss matters too.

My son was not a miscarriage.

My son was not a stillbirth.

My son was a neonatal death.

My son lived for 12 days.

My son died in my arms.

My son should be here.

My son is gone due to medical error. I can’t believe I finally said it and wrote it.

Medical error.

Here is his story. Here is how my son became a statistic for neonatal death.

 

The year – 2010.

The emotions/ feelings – joy, happiness, love.

We were expecting our first child. A boy. A son we named Drake.

We did everything first time parents do; we enjoyed every moment of the pregnancy, we imagined which one of us he would look like, we had baby showers, we painted his room, we decorated his room, we went to every appointment together with our group of doctors, we told the doctors any concerns we had (such as my high pain tolerance and the chance of having fast labor – family history), we looked forward to seeing our son, holding our son, loving our son.

At 38 weeks pregnant that all that changed. At 38 weeks, I went in for my normal weekly appointment. At 38 weeks, we found out our son was in the Frank Breech position. At 38 weeks, I was scheduled for my C-section for 4 days before my due date. At 38 weeks I still trusted my group of doctors.

At 39 weeks, 2 days – I went into labor at home in the early morning hours. We timed my contractions for 20 minutes and upon realizing they were less than 5 minutes apart, we called the doctor’s office and spoke with the nurse who said she would have the doctor call me (the same doctor on-call was the one who was to be doing my C-section in 2 days’ time).

My biggest mistake.

The doctor called, listened to what we said and decided that we should continue to monitor my contractions for another hour. Well as new parents, we listened. The biggest mistake ever because you see – 45 minutes into that hour my water broke and my son’s feet came out. (During this time, we called the nurse to have the doctor call us and we never got a return call until several hours later.)

Naturally once his feet came out, our next call was to 911, by the time they arrived my contractions (with no help from me) had pushed him out to his ribcage. The EMTs decided to try and help us finish delivering him on our bathroom floor – so we got the rest of his chest and his shoulders out. We could not get my son’s head out, so we were loaded on a gurney with his head still inside and taken to the hospital where with the ER doctor we finally got my son’s head out – but by now he was no longer breathing.

One of the EMTs was able to resuscitate him long enough to be placed on a ventilator.

Neonatal Unit

Within a couple of hours, he was transported to another hospital where there was a NICU. I had to stay at the hospital I was at, they finally released me after 15 hours and we made the 45-minute trip to see him.

You know your son is truly hurt when you walk into your son’s NICU room, surrounded by other babies, and the night head nurse tells you:

“Out of all the babies here in the NICU, your son is the worst one.”

Drake spent the next 12 days in that room. I could go on about the tests he had, the meetings with doctors we had, the talks with the nurses, the meeting with a local organ donation company (my husband and I are organ donations and we wanted information in case Drake did not make it).

No matter the tests, the meetings, the discussion – the tears, the anger, the silent screams; the end result would never change.

You see our son was

BRAIN DEAD.

Goodbye

The lack of oxygen he endured while he was stuck inside me caused brain damage, he would never breathe on his own, the doctors gave us 2 options:

  • Allow him to stay on the ventilator and allow his body to deteriorate and die.
  • Pull him off life support and allow him to die in our arms surrounded by love.

My husband and I talked for many hours – we made our decision out of love. Love for our son. We had no idea what pain he may have been experiencing.

We chose to say goodbye, to allow him to go, to relieve him of pain.

At 12 days, 12 hours old, we pulled Drake from life support. He lived another 4 hours before he finally passed away in my arms.

This was 7 years ago and I think about him every day.

 

Thank you to Marisa of Life by the Dreams for sharing Drake’s story.

neonatal

Baby Drake

A Line of school shoes, with an obvious gap.

A Missing Future, An Empty Shoe Box

Back to school

As the whole nation prepares for the return to school, including myself. There remains the large hole of a missing child.

Helping Melody’s little sister get ready for her new adventures in big school; the preparation of shoes, and uniform; making sure book bags and P.E bags are ready.

Missing

When we missed reception in 2016, I thought it would have been one of the last big milestones. But it isn’t, not really. It is never going to be about losing “just” a baby. You lose not only yourself, but a future, dreams. There’s a personality missing, a child whose name will never get called in a register, a child who is never spoke of by another child, or wanting them to come to play. These children who stand in the playground, who sit in the classroom, will never know that there is a girl who should have been there. A girl who should have been friends with them. To them, to their parents she never existed. Our daughter to the class of 2028 will never have existed. In the playground I’ll never be Melody’s Mum.

The Shoe Box

A show box with the letter M in it.

There’s one extra thing we’re having to sort for the first few days of school, a shoe box to fill with memories their favourite things to let their class learn a little bit about them outside of school.

Melody lived in a box, she sleeps in a box, and has two memory boxes full of things to help us remember her.

She doesn’t have a box of her favourite things, of her hobbies. It has nothing inside. No stories to tell of her family members, no adventures to share. Photos of her growing from a tiny baby to a girl entering into year 1 are missing, they will always be…missing. I don’t know her.

 

As if she never existed

I’ll fight to keep her memory alive, continually retelling the one story I have, the short story of her life. It’s all I have but for the children and parents going into year one this week, for the children who become the students of the class of 2028. To the men (or women) she could have met to one day marry. An aisle she once stood at, will never be the aisle she could have chosen as a step towards her future.  To the adults of the future. Melody never existed.

Not just the baby

She is not just the baby we have lost, we lost her whole life. Everything she could have been – gone.

 

Melody and Me – The Switch.

The Switch

This last week I have made the decision to switch my family blog from normal blogging; to self hosting. As I was trying to make the final decision it dawned on me that I really needed to self host for Melody and Me too.

There is so much awareness her legacy is leaving behind, it only felt right that she had her own space, dropping any other words from the address. My relationship with grief is such a unique experience, I want to share it freely. I have some things planned in the form of books to follow on from A Mayflower’s Rainbow, which I am very looking forward to.

There is so much more I need to do; to bring the awareness of losing a baby so that it is no longer stigmatized, no longer the taboo that it is. These little children were meant to be our future, they were meant to take our legacy with them, not the other way around. So for me it felt really important to switch over, and teach the world about our little girl who only stayed for 35 days.

Learning

The switch has been a complete headache. I am sure there are still adjustments to be made…please point me in the right direction. I have learned so much within the switching process, that I can’t say how I ever managed before; it has certainly been an eye opener. There were many, many times I asked my husband, why the hell am I doing this? Is it really worth it?

I guess only time will tell.

Thank you so much for your patience with all the swapping around..writing service will resume soon.

 

 

Lots of Love

Julz

Melody’s Mummy

xx

Melody and me logo

(New Logo too).

Melody and Me

Stages of Grief

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

 Denial.

Anger.

Bargaining.

Depression.

Acceptance.

 

 The Stages of Grief.

Since 2012 when our daughter died,  I have stepped and paused on each and every one of these stages.  Several times in fact, and in no order, but they’ve all been met and fought with on a number of occasions.
Most people know the stages,  and in the beginning in my head, with repeatedly being told that time heals,  the obsession with 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.  

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

 

The Limbo Months

I’m currently in yet another run up to a birthday without the birthday girl, the remembrance weeks of when she was alive and felt real, then the anniversary.
Each of the above arrives 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 that I do. I can’t quite get to grips with how she died, this baby, our tiny little baby who gave us a smile, fed, pooed..how she just died.
It isn’t about acceptance or a denial thing, let’s face it none of the five titles really are equipped to be included in baby/child loss.
I am painfully aware that she isn’t ever coming home; that she is dead, we all wish that wasn’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.

Waves

Each year the run-up 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 spoken to others they feel the same too. It is hard to imagine these years getting worse.
Then I find myself 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, which are probably not even that annoying.
Patience is incredibly thin.

Emotions

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, I really don’t mean to be but I know once the heaviness of the next few months lightens, 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 guide, 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. Stages of Grief

Melody and Me. Holding On For Dear Life.

The countdown to Melody’s birthday.

February 7th 2012 23+1

 

I began to feel slightly headache-y, which wasn’t disappearing with paracetamol, accompanied with some blurry vision I just didn’t feel right. So to be on the safe side I booked myself in to see the midwife, due to my history of Pre-eclampsia when I’d had my daughter, I was aware of the symptoms, I kind of knew it was too early but I just wanted to be safe and get checked out…
(Excerpt from Mayflower’s Rainbow)

On This Day

 
On this day in 2012, something wasn’t right. But having clear test results days later, I knew at that moment I could breathe a sigh of relief. A false alarm, it was far too early to have this.
Counting down the days until her birthday.
Keeping myself busy; too busy to think too much.
Too busy to remember that, I really should be shopping for something for her birthday.
I don’t even know what she would have liked.
Of course, I am told not to dwell on this, not to think about this too much.
Why shouldn’t I?
I have no idea what her favourite obsession would have been?
Crafts?
Princesses?
Would she have been a Tom Boy?
I am allowed to wonder.

Dreams

I remember watching a video about skin to skin and kangaroo care, a beautiful thing to watch.
Then I am hit as if I’d been punched in my stomach, a glimpse of the poorly, premature babies.
The wave of new pain arrived again.
We weren’t allowed to have skin to skin often, we had it, don’t get me wrong.
Given the importance of kangaroo care, it was never enough.
It hurt, so much.
These precious babies being cuddled better.
Mine…gone.
I do sometimes wonder whether had we been phoned sooner, could I have cuddled her better?
A fairy tale dream perhaps.
Always felt like she never belonged to us.
Whatever is out there, will never be enough.

Melody and Me

23 Days old, we get to have skin to skin.
Tucked into my bra, she was tiny, warm and happy.
Albeit wet from a teary shower.
The power of skin to skin is amazing.
I wish we’d had more.

Projects

Working on a project involving Melody, something I needed to do.
Feeling incredibly honoured to be asked for an input, I knew I could do it, just words, reflection.
Talking about Melody.
Felt wonderful getting it down again, bringing her memory to the forefront of my mind.
Then…
The neonatal doors were closed; there was a privacy board around a cot. We walked in, attempted to walk to where our little girl had been the day before when we realise that the cot behind the privacy board was indeed our daughter. She’d been moved to ITU overnight.
A doctor came to us and told us that she wouldn’t survive… 
 
Floored for a moment. Wondering why I did this to myself.
But I’m not *really* doing this to myself, this is me, us. Our story.
Could feel the tears coming, it isn’t torture, it hurts.
But why wouldn’t it?
Our baby died.
I am trying to be busy, to be strong.
To be brave.
But I really am holding on for dear life…