Tag Archives: neonatal death

birthday in grief

Then She Was Seven

Today is the day my life changed.

Today is the day I have learnt to celebrate a child’s birthday without the child.

This is something, I still cannot get my brain around. I had a baby on this day, I had emergency surgery on this day, my body knows that I had a baby, but my brain can’t seem to adjust that the baby who was meant to live a full and healthy life died.

I have a seven-year-old, but she didn’t grow she didn’t leave the hospital. She is forever 5 weeks, but I still should have had a seven-year-old. How can anyone get used to that?

Time has stopped, raced forward and slowed down all at once.

As we entered this year, it has felt different, I have felt pissed at the whole situation, pissed that I am not the person I was before, pissed at my self for feeling like I hate my daughter. Pissed that no matter what I do, I will always be a mother to a dead child. It felt like I woke up after seven years and everything is different.

I can ignore her, ignore the situation, I could stop talking about her; but none of it would change the outcome. I would still be a mum to a dead child.

When I decided to walk away from her, from everything about her to turn and run as far away as I could, I hate being a bereaved mum and I feel trapped.

I wished that I had never met her.

This year I felt beaten by the whole thought that this is our life. I was fully expecting to be ‘better’. This is something I am now learning to deal with.

I was reminded that no matter what I do she will always be our daughter. So rather than run or hate her I need to find a sense of being happy within the situation which has been given – I certainly didn’t choose any of this. I want to make sense of her death; this year I have been given the confidence to push the support group I set up three years ago, it is bloody hard work – but rather than hating her for making us bereaved parents, blaming her for ruining our lives; I am going to learn to love her again, to build a legacy for her and her siblings because they are a massive part of the service we are building and trying to achieve.

I really have had such a tug of war (love) between the life I had imagined and the life we have, I am grateful to the life we have, but I also would have preferred not to have a lifetime of pain – as would many other families who have lost their child. T

I don’t quite know how it is seven years.

This year she would have been doing her year two SATS tests, it is another moment where there will be a number missing in the statistics, a missing child at the table, but there will be no absence reported.

The tooth fairy will never visit her,

I will never have her first tooth stashed away not knowing what on earth I am going to do with it.

She will never need a magic kiss for the knee she grazed running too far ahead.

Or chose a story to read in bed

I will never know the thing she would have liked, or the hobbies she would have chosen.

Would she have been a majorette like the rest of her siblings or wanted to do something completely different.

There will always be a seven-year-old shaped hole an unoccupied space, but in the secrecy that nobody will ever notice that empty chair, or missing friend from the classroom.

Or a hand that isn’t being held

And still the biggest thing that I wish I had known is the colour of her eyes.

I hate not knowing such an important part of someone’s facial feature.

I have a seven-year-old, I would love to have gotten to know her.

baby loss, grief

Burning Out and Healing

I’m not entirely sure where I am heading with this; so please bear with me. I am fully aware that to some this is probably not a problem and that people are going through worse things right now. But I am struggling.

Burnt Out, tired, heavy-hearted – nothing is ever the same.

Christmas 2018, the turning point for me. I love Christmas, even the first year as being a bereaved mother I still wanted to soak up the magic, savour every beautiful moment. But this last Christmas, I was there but felt nowhere near there. It was the first Christmas for many, many years that we had social plans I was able to spoil the children a little; to anyone looking in – to me, it looked perfect.

But I also felt numb, I don’t even know why; I began to feel heavier and heavier until I guess I had lost all feeling and was just going through the motions.

After the new year, days into the new year resolutions are thought of; plans being put together for another wonderful year of memories. One thing on my list is to be happy. Then I was hit, hit with the sadness stick, that sadness stick I get every bloody year as January hits because February is her birthday, the countdown begins. It was this that made me tearful, as I do every January, grumpy as I do every January “another year without her.”

Days into the new year I find myself telling my husband, the father of our dead daughter, that I no longer want HER in my life. I don’t want or care for being a “bereaved” mother. It’s shit, it more than sucks – sucks every bit of life out of me. A life sentence, I guess. (If you question the need for that sentence, you may not fully understand this post).

I am more than a bereaved mother – I am a Mother, a wife, a friend, a student and employee.

What kind of mother doesn’t want their daughter in their life anymore?

It’s the constant battle of guilt, love, and pain. Trying relentlessly to keep her memory alive, but who for? Sometimes it feels like nobody is listening anymore.

Fundraising right from her death, now a support group, which the group is a wonderful achievement, but sometimes – just sometimes I wish I didn’t do it alone or feel I must try and compete. It wasn’t what it was meant to be about.

And I am just causing myself pain.

I’ve never been in a coma; nor do I know much about them. But watching an episode of a TV show of a guy who had been in a coma for 16 years, to wake up and his family had moved on, nothing is the same.

Since I spoke to my husband and a friend who understands; it is like I have awoken. I don’t have this crazy amount of energy, but it feels like I have been asleep for nearly seven years and woken to change, family changes; different friends, old friends are gone, making new friends. Kids which have grown, but I feel like I have missed so much. Everything seems unfamiliar, not knowing entirely who I am.

We never asked for any of this. I never wanted her out of my life, my own child. But she is, the painful thing, the painful truth is that no matter what I do – there is NOTHING I can do to bring her back or stop being her mum. I need to live, not survive – I’m not a victim. I need a life.

Now I must rebuild and heal.

Relationships have I understand broken, moved on. But that also means I need to stop questioning people’s choices, stop blaming myself for every little mistake when relationships break down.

I need people to know that I really am not a bitch, that I am working on rebuilding the person I was before – okay maybe that is optimistic, as I can’t fully remember our life before; but I was a newlywed. I married my soulmate, I am so lucky that he is the ONE person to not walk away or expected anything other than love from me.

Most importantly it is bringing the fun back to motherhood, I always wanted to be a mother. That is what I am.

I am a Mum first. Melody is just a part of my story; I miss her – but I miss living that little bit more. (Don’t judge me). I’m afraid of being miserable for the rest of my life.

I will always love her because she will always be my daughter, she will always have a birthday and an anniversary. I will still say her name.

But I have to LIVE the weeks before those dates, and not simply exist.

 

I know I have pissed people off and hurt others, I am not the person I was; I probably never will be. I am sorry for that. I am trying.

As they say, you can’t sip from an empty cup.

Just be patient with me, I don’t expect it to be easy, sit with me in the dark, while I find the light. Because this past year I have laughed and lived so much, that I know there is so much more to me than pure darkness.

That is all I ever wanted, love, laughter, and happiness.

 

capture your grief

Wisdom. Capture Your Grief

What wisdom could you share for family and friends wanting to help a loved one who has experienced the death of their baby or child? When she died we made the difficult decision to share her death on social media. But of course, looking back now I wish we’d waited and announced in a more controlled environment and slower. But I guess there’s not a right or wrong way to have done it. We were receiving “Get Well” wishes, but she had already gone.

Wisdom for friends and family.

Make sure you contact the parents/family of the lost child. Their whole world has been blown apart, they’re looking for people to give answers, for eyes that tell them that everything is going to be okay. They’re also looking for blame, for someone to say it was all a mistake.

It’s so isolating, not everyone will be able to understand what you are going through, but empathy goes a very long way. Thoughts on helping a family to remember their baby, allowing them to speak freely, without being forced to feel like they have to move on, get over it or remain silent. Their much loved, much wanted child died, the unimaginable has happened, families need love and not misguided advice, which ends up hurting people more.

Leaving the bereaved alone, leaves them questioning themselves about their actions, about why nobody wants to support and help them.
Making them feel like they’re to blame for everything, from losing their child to losing their network of family and friends.

It’s important to keep being there, they’re allowed to cry, scream and be angry. But laughing and joking, it doesn’t mean they’re healed; it just means that they are finding a way to cope, to be free from the pain of losing their child; even if for just a moment.

Just be there when the bad days are dark, because the lighter days are of beauty, and shouldn’t be missed.

capture your grief

Healing. Capture Your Grief

What does healing in grief mean for me? Well, the very first thing I would say is that I’m not healed in a way that maybe I should be. You know, when you imagine an open wound that eventually closes over through scarring. It is there you know it is there, but it remains closed; it is almost forgotten – at the very least you don’t think of it much.

When people combine the words healing and child bereavement, all the above is exactly what “outsiders” view. You go through the stages, the death (the initial puncture to the skin), the coming to terms and things like the funeral, (the beginnings of healing). Then the aftermath (the final scarring, healing process). Then you’re meant to just get on with it.

But healing from the death of a baby or child, looks completely different. There is no scar tissue to help rebuild what is hurt; it doesn’t protect you from more pain. It can feel relentless, like the heavy painful feeing will never go away; reopening at unexpected moments.

You simply do not recover from this.

Healing looks different.

Healing isn’t always about moving on and forgetting. It comes in the shape of tears and laughter. Anger and joy. For me it I about being able to carry a legacy on for her. I have struggled with believing that she is with me all the time, I wish she as – but she isn’t. However, by talking about her, doing things in her memory, helps me with the guilt which surrounds her birth and then her death. I guess, it is like a walking stick, it helps me feel like I am doing something for her.

 

Time is a healer.

It isn’t, I just makes the length of time since I last held her longer, seem so far away. Time makes me forget things, it makes me forget her smell, and how she felt. Time makes it hurt more.

 

I’ll never be healed, but I know how to adjust the tape and glue.

capture your grief

Essence. Capture Your Grief

Essence

Day Three of the Capture Your Grief project. A little bit more about who they are. My reason behind this project. The essence of her being.

 

Who Are They To You?

She was going to be our rainbow honeymoon baby. We’d lost two babies through early miscarriage before her; conceiving her on our wedding blessing night gave us the key to our new married life together. Adding her to the to children I already had. She is my third child, she will always be my third child – now the middle one. My older two were so excited about having a new baby in the house, we all were. Although I’d had the miscarriages, after taking home two children, I had assumed that she would too. We simply never imagined anything other than brining home a rainbow, as that’s what Rainbow babies do; right?

 

Do They Have A Name?

We didn’t know her gender until the week she was born; so, we often played about with names. Had she been a boy, she was going to either Xavier Or Gabriel Severus. Our original choice for female name was Autumn Amelia. Autumn, because we thought it as a gorgeous name, and Amelia after Amy Pond from Dr Who. Anyway, that year there was a singer on one of the singing shows, and her name was Amelia; we knew it would probably become popular.

I often had boxset marathons due to having Hyperemesis and not being able to go too far from a toilet, many names popped up. Then Christmas 2011 came that all important Dr Who episode, “Hello Sweetie…” Melody Pond was introduced to us. (River Song). We both instantly said how much we loved the name; her middle name comes from NCIS character Caitlyn (Cate).

I remember when she was born, and we were told that she was alive; then asked her name. I felt so proud telling them her name; not knowing whether we would see her again alive.

 

What Is The Meaning of Their Name?

Melody is a Greek name which means song. I am so pleased we went with a reasonably unique name.

Essence

 

xx

capture your grief

Purpose. Capture Your Grief 2018

Introduction

Day Two of the Capture Your Grief Project. Today is about sharing why I am doing the Capture Your Grief project. From the beginning – 2012 was the first Capture Your Grief project, I was also in the first months of being a bereaved Mum. I wasn’t sure what I was doing with it, but it soon became a good resource to speak openly about the loss of our daughter. I had many people read them, it seemed to help other people understand a little bit of what I was feeling at the time.

I used it as an excuse to openly talk about her, like I had permission to do so. I always say the previous year will be my last; last year I didn’t complete it.

Purpose

So, 6th year for me. As I didn’t complete last year’s I am determined to complete this year. But I also know not to beat myself up for not completing it.

My purpose for Capture Your Grief this year is to continue talking and sharing our daughter. I would like to raise as much awareness as I can through this project, for the support group I run and most importantly to talk more about the babies who live but then die.

A lot of the awareness for baby loss is focussed on the babies who don’t live past pregnancy, which is fantastic. But when you see messages, poems which include just these babies it makes babies like mine feel less important. So, my purpose is to keep talking, reconnect with parts of grief; with parts of love that I have forgotten.

Baby loss isn’t just one month, it is forever, whether you chose to talk and remember or not. I think people who have never experienced that often forgets that any type of grief can last a lifetime; but of course, with losing a child it is a lifetime we also lose.

See you tomorrow.

xx

https://www.facebook.com/CarlyMarieProjectHeal/

capture your grief

Sunrise. Capture Your Grief 2018

Introduction

Today marks the first day of Pregnancy and Infant Loss awareness month. It is a chance to speak openly and share experiences; to break the taboo that is baby loss.

This is a project put together by fellow bereaved Mother – Carly Marie, a way to share thoughts on baby loss, sharing our babies and raise as much awareness as possible. I have once again decided to give it a go; I didn’t complete last year’s – it was the first year I didn’t complete it. So, I will take one day at a time.

 

Carly Marie - Capture your grief 2018

First of The Month

The first of each month is always a reminder of the anniversary of loss, the first of the month when you’re excited for what’s to come as events move closer. In 2012 we had a discharge date of May 2012; it was our goal, what were all clinging on to – leaving the NICU behind us. Early April 1st of the same year I remember getting a couple of excited text messages stating she’d be “home next month”; we were all so excited, only a month to go.

Little did we know that after these messages were exchanged and that when we reached the hospital that morning, everything would be different. That May would come and go, a discharge date would just be a day in the month that only we would remember.

April 1st, she died. October will always be the half way point, six months since – six months until. I remember hitting six months, it seemed like such a significant time which had passed; yet felt like no time had passed at all. Wondering how we were going to get through each day, let alone another six months with Christmas and her birthday during the following six months.

 

 

Sunrise

I remember waking up from the first longest night after she died. My eyes were closed, but I hadn’t slept. Everything about my body felt heavy, weighed down desperately hoping to know that I had been asleep, and it was all a terrible nightmare. It was strange knowing there was a sunrise, yet our daughter had only just died the day before; it didn’t seem right, none of it did.

That year we had a heatwave during the whole time she was alive. When she was born Spring had arrived with her, she had brought glorious sunshine; there is stayed until her funeral. I got sunburnt in March and was wearing vest tops and flip-flops. Beautiful weather, it made our trips to the NICU bearable, dreaming together of what our sunny days would be like once she left, how she’d love playing with her brother and sister.

Just a couple of weeks prior to her death, she was able to feel the sun on her face through the window, she wasn’t keen, but we knew one day she would love it. That was the only way she ever felt the sun on her face, no and between her toes; or an ice cream by the sea.

 

sunrise

She never witnessed a sunrise.

tommys together for change

Coping And Sharing

I think we all cope differently, we can empathise with each other’s stories but the way react can be completely different to the next person. I think that is why child loss is so difficult to understand.

 

When Did You Tell People?

Death was no longer in our daughter’s plan, we had been given a discharge date to go home – we were given hope. So, the morning of her death when we phoned over to them, as we did every day we were told to make our way over to the hospital as she wasn’t feeling very well; we assumed they were considering transferring her to a bigger hospital. We never expected what we walked into that morning.

I used Facebook a lot throughout her pregnancy, I was poorly they helped, so we placed a status asking for positive vibes as they were putting her back on a ventilator. When she died at 9:30 we came outside to inform our close friends and family, but were still receiving get well soon messages; so by 11:30 we decided to announce our daughter’s death on Facebook – basically hit and run just to stop the positive messages coming through.

 

How To Deal With The Return To Work?

I chose not to. I chose to completely walk away from the profession that I had done since I had left school. I couldn’t face doing that job any more, I knew this quite early on; I loved the profession but I was done.

Unfortunately employers aren’t always very sympathetic when it comes to needing time to grieve the loss of a baby, especially if you’re outside of the maternity timescales (either too soon or too late); even more so for Fathers.

Ideally having good communication is a must with management, to ensure that you aren’t rushed back to work or that you lose wages, being in debt can be the final straw when something so devastating happens. Going back too soon could have an effect on your mental health and being able to concentrate on your job role. But also leaving it too late can have the same effect, through avoidance. It is trying to find the right balance, or like me it could be the step to make a big change, for me was to change my career.

 

How To Talk To Family And Friends After Loss

As hard as it is, try to lead them through it. Let them know how much or how little you want to talk. Showing them that crying is okay; that you’re not sick that you are grieving. And at the same time, if you don’t talk or want to show emotion that is perfectly okay too. The people close to you often fear of making your pain worse by mentioning your loss, but often by not mentioning can hurt just as much.

Friends and family can both find it incredibly difficult, and often leave you feeling alone. This often ends up being a secondary loss and can be just as difficult to deal with as the actual loss of a loved one; leaving you questioning whether you’ve done something wrong.

But finding that right support network, will come to mean everything to you, it’ll be something you’ll not forget.

 

What Part Did Social Media Play?

As mentioned before, we announced her death via Facebook. But afterwards the online support for me became invaluable. There is no way I would have gotten to where I am today without them. Finding the right support has been unbelievably difficult because of our situation not fitting the right criteria for the right support. So, turning to online forums (one being a pregnancy and parenting forum) was for me the next best thing. I could avoid people’s avoidances in the street, I made friends.

But at the same time, as much as the online network played a massive part in the healing process, it can make you feel incredibly lonely in your own home community that can slow things down.

 

How Do You Cope With Announcements From Friends And Family Who Are Expecting?

In the very early days, I shut myself away, hiding any pregnancy announcements and updates that I came across, it often felt painful. There were days where I found people expecting girls harder, often boys going home was equally as difficult, as we had been told that because she was a girl, she had a better chance.

Over the years the announcements have gotten easier, but I always have the (silent) niggling worries for all the negative reasons. What I do find more difficult are those who are eager to bring their pregnancies to an end; wishing for earlier babies, trying hard to bring labour on before they’re ready. Even babies who are born when they are ready can be born poorly, and need time in special care. Even after losing Melody, as quick as a few weeks later, I remember people wanting their babies before their time – for me that hurt, as although she was very early, it means her story isn’t teaching enough.

My eldest daughter was born just a few weeks early and needed to go into special care, my son born 5 days early, just about got away with going in.

 

What Advice Would You Give To Someone Who Is Finding It Difficult To Cope And Share Others News?

Find someone to talk to, even if it online. Write your feelings down, get them out that way. You are allowed to feel anger and sadness, but you are also allowed to be happy too. It doesn’t mean you are over your loss, or people see you think you’re all okay not. That balance can be found.

Definitely take one day at a time, there is no rush and it isn’t a race.

tommys together for change

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

baby loss, grief

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.