Monthly Archives: October 2017

children's grief

New Questions. Siblings Love.

light up lettering, siblings

Losing Melody

We’re open about the death of Melody, we don’t hide the fact that she has died; especially to her older siblings. They met her and spent five weeks with her. Five years on, it is still the case. We can go weeks even months without talking about her, but can also go weeks where we talk about her daily.

It is something we have come to be comfortable with in our family unit. My son struggled just recently, saying how he didn’t want to talk about her; to me I am glad he was open and we as a family respected that. He went on to say that he didn’t want to get bullied about the situation and it wasn’t that he didn’t want to talk about her. We have spoken through this; and he has since brought her up of his own say so.

I would never force her on the children; we have right from the very beginning been led by the children, often even before our own feelings.  I know people choose to believe otherwise – but unless you have been through losing Melody (not baby loss as a whole), but Melody then judging has no place in our home.

When I say “losing Melody”, I say this because each and every person’s loss is individual it is personal to them. Baby bereavement is incredibly complex without the need to judge how anyone glues themselves back together.

Siblings Lessons

Being open has played a huge part in our healing process. When you have a baby it is parent’s job to teach that growing baby about life, from walking and talking to colours of the rainbow, everything has to be taught.

For Melody’s younger siblings that is the case, to them Melody is nothing but a fairy tale; a picture in the frame, a name or a letter we include to remember her; headstone that needs to be decorated. The older two siblings however between them they made the decision to not hide Melody from the younger ones, to be open with them, to teach them about the sister they will never meet.

The older out of the two youngest, is 4, she was born 11 months after Melody had died.

She has started mentioning her, when we see garden ornaments or flowers; her sister will say “Aw that would be lovely for Melody.” She is very sweet.

She knows about her, or at least as much as we can explain to her. The painful thing is that her older brother had already learned about baby death at her age now. It wasn’t something we could hide from him.

Questions

Today she started asking questions; right from the very first Halloween after loss, we have always included her, we always decorate her grave; this year we haven’t, we haven’t been up for several weeks now – I know I should; but I just find it hard. The children were doing their pumpkins; we always do one for Melody.

“Did she laugh?”

“Was Melody in your tummy?”

“Did she say Daddy?”

“Did she say your name Mummy?”

I had to stop her there.

“No; because you have the biggest giggles now.” I replied.

I always knew what to say before, but now I am not so sure. These are the same questions but they are new. They are new to them.

Answers

I don’t understand myself why we never got to hear her laugh or hear her say Mummy and Daddy. I am stumped. My older children knew she didn’t laugh, her siblings knew she never spoke a word. We as her parents have slowly come to terms with never hearing her voice.

Now, these new questions, although I guess expected have caught me off guard. I will be as honest as I can be.

How can I say to her that no, your sister born before you never had the chance to say a word, never felt the first belly laugh from deep within. She never got to leave the hospital, despite the odds being in her favour.

I never got her hear her say “Mama.”

We know that we will answer them in a gentle way, that Melody was here for a little time, but she had to go and live in the clouds (where she thinks she is). I know it will pacify her enough for now, and for a little while longer. At least until she’s older, until they’re all older we get the real questions on why she died.

We don’t know, I don’t think we will ever understand.

Little girls sat on a headstone, belonging to their sister.

If you have missed my recent posts here is the last one I shared…

baby loss, grief

Triggers – Butterfly Awards 2017

Triggers

I am so grateful to have been given the experience for the second time. I didn’t come away with an award, I wasn’t expecting to.

It was important for me to get Melody’s story out there. I was unexpectedly hit with a trigger; a trigger I can’t even bring myself to speak about; because if I do then no-one would really understand. No-one could possibly understand the way I have felt and have been made to feel ever since. It is a trigger that is taking me a little longer to recover from.

Leaving me not only grumpy and emotional, but as alone as I did when we walked away from the hospital. Needing to ask; Why Me? What did I do to be left the bottom of the pile?

It has all left me questioning whether or not I should continue with Melody and Me. I don’t know if I am making a difference any more or just upsetting myself further. Listening to people state how strong and inspirational I am; yet I couldn’t get passed this.

I love writing about her, without her I wouldn’t have progressed to doing any writing at all.

The evening was without a doubt a beautiful evening, and well done to everyone involved – I won’t say winners, because none of us are. No tears were shed by me until the trigger.

I hate these half assed things, I am sorry for telling a piece of this. But right now I am trying to process; I am trying to work out whether I should carry on with Melody and Me. I am trying to get passed this crazy emotion. I am drained.

I will catch up with Capture Your Grief, it’ll not be on a daily footing, because that calm place I was in, I have lost. I am certainly not in the place of being kind to myself and mindful.

Thank you for your patience. Thanks for voting for me.

Thank you to the two people who held my hand at the awards on Saturday.

the letter M on grass

little daffodils

Together For Yellow- Jordanna’s Story

Our Story

Our story began on October 25th 2016..we had been trying for a baby for 6 months when we found out I was pregnant.. I had all the symptoms up until about 5 weeks when everything eased off and I felt good, I just put it down to every pregnancy being different that I’d lost all my pregnancy symptoms but it turned out that was when our baby stopped growing… it was another 4 weeks before we found out…

The Long Few Weeks

Those weeks were plagued with no sleep I couldn’t settle or relax in my head I knew something wasn’t right. On November the 17th the bleeding started a small amount getting heavier.. I rang 111 in a panic then they referred me to the doctors who gave me a appointment for the early pregnancy unit at Musgrove the next days. The next 24 hours were torture..

Knowing that the outcome wasn’t going to be good but hanging onto to that tiny bit of hope. We arrived at the hospital sat in a waiting room with expectant mum’s all glowing and excited. I knew we had lost the baby. I was took into a room and scanned I was told my baby had stopped growing weeks ago and that it wasn’t growing where it should be. I was asked if I wanted to see I declined if I didn’t look it wouldn’t be real.

Baby Loss

The sonographer handed me a leaflet on miscarriage but I declined as our baby was still there it hadn’t happened yet they might have got it wrong.. we had to return in a week to check that it happened naturally. I broke down leaving the hospital after that I went into shut down it was only months later it hit me like a ton of bricks,crying day in day out; blocking pregnant people and baby’s from my Facebook news feed,crying at other people’s pregnancy announcements; angry that everyone had moved on but you haven’t.

Why is no-one else mourning but I am..a year on I’m still feeling that way but the tears are less and some days are better than others..now we are crossing our fingers for a rainbow baby..it’s the hope of one in the future that keeps us going.

 

Thank you Jordanna, for sharing your story.

little daffodils

Together For Yellow – Tilly

Tilly

On the 22nd of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24th of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

infant and teddy

 

Kate’s Story from Tilly’s Marathon

Thank you for joining us on this awareness series. 

Thank you to Warren, Marissa, Beth, Kate and John for letting me include your beautiful babies.

little daffodils

Together For Yellow – 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

capture your grief

Clear and Let Go – Capture Your Grief 2017

Clear and Let Go

Yesterday there was a rest day in the capture your grief project, so no posting; however I am working on a little awareness post for this coming week to replace.

You see I was going to stop this project. Saturday just gone was going to be my last day; for this year I am not in the place for writing about mindfulness. I said to my husband that I would no longer carry on with it this year. Although I have said this previous years, but that is down to either having our story attacked by people who have nothing better to do, or because it can get really heavy.

I am in a place where I don’t want to be a bereaved mother. This is written about elsewhere, so I’ll try not to talk too much about this for now, as the post won’t be public until next week.

I don’t want to let go of her; but for one day it would be nice to get a baby sitter; for someone to hold my thoughts, hold my love and forget her. Either forget that she existed or forget that she died, that she is alive and well. But I can’t. Don’t Judge Me.

Capture Your Grief

Just like I can’t stop this project, she doesn’t know I am doing it… if she did I wouldn’t be doing it; I probably would have no idea about it either. But I simply cannot let go, I can’t let this year be only half way done. So I will, although my heart is not in it; I will continue.

However I will maybe twist the prompts  a little; I am struggling with the lack of awareness for Neonatal and Post neonatal deaths; for me Capture Your Grief was my way of raising that awareness, through Melody. That her type of death mattered.

So I apologise if I break the rules, but let’s face it the rules are that children shouldn’t die.

Clear and Let Go

One of the parts of today is to have a clear out; well I cleared out our living room last week, made way for a tidier toy corner. Another is to clear out some of my social media.

This.

This time last year, and the year before and the year before; the support from the 2012 project to the very same project today is different. The difference in having people read them, comment and reassure me that our daughter matters, that she is remembered. That we are not alone. The responses have ended up to be none, but I also know that platforms make it difficult to share. And I do know who remembers without being seen.

Social Media and life in general, people want the good bits; when I was initially in the paper a year ago about the book I had written people wanted to know, people I had lost contact with suddenly wanted to speak; people I barely knew wanted to support and be part of the awareness. But now I am just a Mum blogging her way through grief, nothing has changed; I am still post loss. I am still the person I was a year ago. So, I am giving my Facebook, and any other social media a clear out. Not by new friends and acquaintances I have picked up along the way; but those who have become strangers.

People grow apart, that really is life; it is hard; hitting delete on the people who were once like family. But it is normal; people change, people grow, likes and dislikes change.

I think for me I have learned that having such a smaller circle of friends means we can look after each other better, put more trust into one another. In recent years I have found it terribly difficult to trust anyone.

I need to stop punishing myself. I need to find peace.

It is time to let go.

Lyric of In My Veins

Lyrics By Andrew Belle. In My Veins

In My Veins

I’m not going to stop talking about her.

little daffodils

Together For Yellow – Warren’s Story.

A Dad’s Perspective

As I try and raise as much awareness for Neonatal Loss, there is also another corner of the loss community which also gets forgotten, they are the Dads; so much focus goes towards the Mums.

I remember in the early days people would ask how I was but my husband was always asked to make the tea, or look after me and the children. He was hurting too.

Today’s installment is from a Dad

” I broke down and sobbed like I’ve never sobbed before to the point i nearly collapsed…”

I have included the link from his blog today, with his permission. Warren currently volunteers with UK charity Daddys With Angels.

I’d like to say thank you to Warren for sharing his story for this series. Please make sure you click the link.

Warren and Oliver.

 

capture your grief

For The First Time – Capture Your Grief

first time. the letter M

First

Today is the first time I have lived the 7th October 2017. I have never lived this day before. I won’t be trying anything in particularly new today. It is an ordinary day for us. The children are displaying in a carnival and we’re on a constant time watch to be ready to go. Things to get ready, helping to get 30 children ready today. So for me to physically go and try something new today would not happen.

I woke up this morning after a lovely evening out for the first time in what seems like ages, I laughed and felt on top of the world. I went to see a show, I never thought I would ever go and see. It was hilarious. Of an adult content, but it was so funny.

The first time I saw Melody I was strapped to the bed, wires and leads every where, she had been taken out via c-section, there was this giant green screen dividing my head from the working end. The room was hot, it made me feel faint, there were people everywhere, there wasn’t space to move in the room or add any more people. We could tell the operation had begin because the room had fallen silent. I remember begging the midwife stood next to me to tell me that she was alive.

“Is she sleeping? Has she been born sleeping?”

The midwife would take a second, which felt like hours to peer, I knew she was concentrating, but I needed to know. Her heartbeat was on the CTG moments before, but we knew she was fighting.

As I asked one more time, a squeak came. It was loud enough to fill the deafening silence; it was loud enough to be heard to fill my heart with love.

“No she hasn’t been birn sleeping.” The midwife said to us in her really soft voice; the Dr deliviering her confirmed so when she said the Melody had given her a kick as they lifted her out.

For the first time in days I felt relieved that she was born. That she had been born alive; we had no idea on how long we’d keep her, being a micro premature baby; nobody knew how well she would do.

The Doctors brought her to me, I could see her tiny pink face, she really was that tiny. 9inches of her…23cm.

The first time I saw her, I had no idea whether it would be the last time I saw her alive. I had to cherish it; I have had to keep that safe. She wasn’t meant to die.

 

Carly Marie Capture Your Grief

Day Six

Melody and Me.

capture your grief

Bella Luna – Capture Your Grief 2017

The photos I took are from last night, the most beautiful full moon I have seen in a while. Taken here in Somerset at about 7:45pm.

I love looking a the moon, its beauty fascinates me, whether it is in its full glory or whether it is giving the sky a Cheshire Cat grin.

It is peaceful, it listens, it never has an opinion and as far as we know it doesn’t judge. We can yell, and shout at it, swear until we’re red faced; yet it returns every night, to give us light, to watch over us making sure we’re never alone.

I can’t remember what the moon was doing that night, I can remember seeing it through the window whilst she was still alive; it was one of the things I was looking forward to showing her. This magical light in the night sky. Now it gives her light as she sleeps alone, her own torch in the darkest of skies.

Apologies for the short post today.

 

moon

“Do you ever hear me calling?”

Soul Therapy

 

capture your grief

Soul Therapy – Capture Your Grief 2017

 

Therapy

We were never really offered a lot in the way of therapy. There was a Councillor in a dingy part of the hospital, who didn’t want to hear a lot about the loss of our daughter; and was very opinionated about whether or not we should have another baby. It wasn’t helpful, we left feeling confused.

We were then later told that we had been bumped down the waiting list for support, and that they only dealt with miscarriage, late losses, stillbirth and babies up to 5 days old. We were none of these. This was when we first realised that support for us, would be at a loss.

This is where writing came; I have loved it all of my life. But it now gave me a purpose; I had to release what I was feeling somewhere; I needed to not hold in all that I wanted to say.

It hurt so much to not say anything; so writing became my therapy. Although Melody’s writing journey began in the NICU. When you have a baby in hospital that can have very little visitors, the strain it puts on your life; it is hard for people to understand. Your whole life is taken up by splitting yourself into visiting the hospital and being normal for the children you have at home. So I wrote things down, I wanted Melody to read back her journey in the NICU once she was older.

That will never happen.

A Mayflower’s Rainbow

 

The screen for a long time was my best friend; people in there would listen and would understand exactly what I felt. Releasing in such a public way, to write has helped me. I can cry whilst I write and no-one can see me. I can take my time to get the things I want to express out. I have read some earlier words; they were so raw, I can’t even begin to remember exactly what I was feeling then. I know it was painful. I released A Mayflower’s Rainbow as an indie publication, but I can’t read it. It I unedited and raw; but I can feel the words I wrote, it is too painful to be back there, I know it is coming; I can’t make it stop. So I don’t read it. I have to just nod and agree when people say they have read it.

 

Writing her name would be another. Every time we go to the beach, or anywhere we are able to write her name we do; to somehow include her. If it is in the sand then we leave her name there, then if and when people see her name they can make up their own mind to who she is. Just like what we do. It is the only footprints in the sand she will ever make.

Therapy

Saunton Sands

 

Melody And Me.

Belonging