grief

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.

M in forest

Post-Neonatal. Fight or Flight

When we walked out of the hospital after the death of our daughter – Post-neonatal death; I never expected to spend the years afterwards in what feels like a fight or flight mode. Nearly everywhere we turned there was nothing, and I have said this many, many times. I think I have repeated this, because I cannot get my head around how little support there is for babies who lived, then died, the ones who never came home.

Fitting In

I have searched for statistics, for facts for something for us to fit in. Yet there’s almost nothing. It is bloody lonely.

 

Where exactly is it we fit in? I know people can’t help it, because I guess babies who are older than 28 days are more than likely to live – or are they?

I feel as though I am on a losing battle, talking about her. Even if I screamed in my biggest voice, would I ever get listened to? I know I do in a way; because people tell me so. But in a way to make change, to make neonatal and post-neonatal losses heard, to make their statistics drop.

If I have to be a bereaved Mum I at least want to fit in, to feel less alone. Can you imagine what it feels like to be told that when your baby dies, there seems to be a cut off for support, because she was too old? Or that we were bumped off or down the list? To have a session where not only was it in the G.U.M clinic (sexual health), but the person listening wasn’t massively interested in talking about our loss; but had an opinion about falling pregnant again afterwards.

Breathe.

Awareness

I have so much I feel I want to achieve. I have let fear get in my way for almost six years now.

Our daughter was born due to HELLP syndrome, a severe form of Pre-Eclampsia, a condition that is quite clearly STILL under researched – When I say clearly I mean being told by two different midwives that you don’t get pre-eclampsia before 28 weeks, the second time being after the death of our daughter (she also stated that you don’t get it twice). It can kill.

I want to help. (There have been in talks about case studies).

I suffered Hyperemesis throughout each of my pregnancies, each getting worse the more babies I had. Another under supported condition, a condition that leads women to abort, commit suicide or die from malnutrition, (a contributing factor to the death of Charlotte Bronte). That and living with mental and health issues afterwards

I will help.

Melody died at 35 days old, she died from overwhelming sepsis. 35 days. Post-Neonatal Death.

She had a good chance of coming home, but she didn’t.

I want to help lower the mortality rates of these babies. I want to show their parents that they really do matter; to be recognised more.

I hoped by setting up Little Daffodils that I helped a little in making that step towards supporting people, making sure people are never left alone.

Post-Neonatal

There is so much I want to do, but have no idea where to begin. I want to change so much, the maternity services, the bereavement services. I would like throw the text books out of the windows and burn them, because no BODY is the same. Women and families should not be treated as such.

Tonight I feel a little angry at the world, and how cruel it is to feel essentially thrown out into the cold, when all we ever wanted was the warmth that we watched others have*.

I need to now figure out the next step.

But maybe when I feel less angry.

Ideas are welcome, links to places I can contact. I want to do more.

*I was lucky to have online forums, people slate the online community a lot, but if I hadn’t had them I honestly do not know where I would have been.

 

Thank you for reading.

Post-Neonatal awareness

 

Clear and Let Go

Children’s Grief Awareness

Children’s Grief Awareness.
People struggle with talking about death, and in particular when it involves children’s grief.
I was a child when I lost my grandfathers.
One it was all terribly hushed, there was rarely any mention. When the other died I was told he’d gone to sleep. For me it made a natural thing difficult, would I sleep and never wake up? There was never any real openness about it, which in my mind, even now made it terrifying.

Sibling Grief

sibling grief

When our five week old daughter died it wasn’t me who told her siblings, it is definitely something I wish I had. But I couldn’t process what on earth had happened.
It certainly wasn’t something I could hide from them.
Unfortunately when it comes to the loss of a baby, of a child, society wants you to be silent; there’s a need to stop talking about the tiny person, to forget.

For us as a family Melody’s immediate family, made the decision to be open with her siblings.
A week after she died it was my oldest daughter’s birthday; there was no locking ourselves away, we had to return to normality. We’d already brought presents for her; in our minds we knew who was giving her what; which included a present from Melody – she wasn’t expected to die. My husband and I chatted between us made the decision that the presents would still be from Melody.
To outsiders this seemed strange, it probably was but there is no text book, no right or wrong when it came to early grief of our daughter.

Criticism

As bereaved parents, we are often faced with lots of criticism from people who quite frankly don’t understand. They’re lucky they don’t.
We needed to be grateful for having our living children; or being over the death of our daughter.
We know she wasn’t here long, we are reminded of that daily.
“At least you have other children”
“At least she never came home.”

Emotion

Watching my children cry, sob because they had to learn the hard way that babies die, feeling not only helpless but guilty too…I’ve been made to feel like that many times.
Having to tell the children that she wouldn’t be coming home like she was supposed to.
Seeing a tiny coffin in the church; this was then placed in the ground.

We didn’t know if we wanted them at the funeral; but I guess we were selfish maybe in wanting to break without the children being there; we had no idea how we would be. But they did go, my daughter read a story.
There’s nothing least about any of it.
So, having made the decision to be open, we chose to be led by them.
Of course it was hard; we were never able to let grief grip us, there were no days in bed, no crying on the sofa for days on end.
Of course we cried, it wasn’t something we could control, we didn’t want to. Crying is normal and healthy thing to do.

They needed to know that they could cry.
They chose to be as open as they wished, we literally followed their lead. Things like talking about her or visiting her grave.
For me her grave is full of horror, I hate it. I visit because I’m her mum, but rarely.
But if the children want to, then that’s what we do. They’ve taken the role of tidying her, if my husband or I place items; they move them to a spot they prefer. They look out for her.

Off Days

 

But there is also the other way too; where just recently one of them didn’t want to talk about her. He was having a moment where he preferred he didn’t have a sister who died. From an adult point of view, from my own grief I quite often agree with him. There are days when people ask me how many children I have; and I lie or simply the days where I just don’t think about her. That is okay. He fears he would be bullied from his experience. But that is possibly down to the fact that there aren’t many of us in this situation. And society as a whole would rather we keep it quiet. Truth is told he is probably not the only one in his class who has lost a sibling, either through pregnancy or after.

Yet today he is asking to buy her an “M” ready for our crafting session this weekend.

Individual Grief

 

Grief is incredibly individual especially a child’s grief; there certainly are no hard rules.

Grief and death as a whole are both so taboo, yet it sadly affects everyone in their lifetime.

The taboo is even more so when it involves baby and infant death, it shouldn’t. To talk openly and freely helps those who are in the grips of grief. It helps spread awareness, often helps save others too.  Time is no way a healer; I wish that things were different, I wish that she hadn’t died; biggest wish is that I wish my children hadn’t lost their sister.

We are nearly six years down the line, I really am so proud of everything they have done since; how well they have coped. They have two new sisters, they now educate them of their sister “who lives in the clouds.”

Sibling grief

 

Melody and me logo, which is a heart with an adult and child hand,

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…

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

Melody and me logo, which is a heart with an adult and child hand,

Baby Loss – 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.

Neonatal loss awareness

Infant Loss Awareness – Kate’s Story

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.

Neonatal loss awareness

Neonatal Loss Series – Armour. John’s Story

Shields

For many around the world, the concept of a shield is the idea of knights in massive armour, carrying shields with the chivalric coats of arms.  They protect the wielder from harm whilst the other arm carries a sword, mace, hammer, etc.  It can be made from anything from cardboard to Vibranium, and can be small and light, or heavy and huge.  They are made for all sorts of reasons, and for all sorts of missions, quests, but above all: removable protection.

It is armour to protect us, but we put it down; we store it when we’re safe.

For child loss dads we never want to put it away, in fact we carry it all the time, ready to protect ourselves.

Armour

When my wife was pregnant with our first, Melody, I had already experienced that loss, having lost Sophie my first daughter to stillbirth.  When she first told me she was pregnant I was terrified, we had had two miscarriages the previous year, and my biggest worry was that I’d never get to  be called “Daddy”, I’d never hear that word that turns any man into jellied mush…  So I carried that shield with my family crest on, and protected.

My wife became seriously ill with HG, and I was terrified –terrified that events would happen all over again.  But Melody was born; born early, admittedly, but she was bloody strong, a fighter like the Scottish warriors of old.  She fought hard too, coming off her ventilator in less than a day.  So the shield got put down.

And then the nightmare happened again: she died, and I held her in my arms like I did Sophie, watching her pass.

So the shield came back up, reinforced.

And then my wife was pregnant again; this time we made it, despite my wife suffering horribly again, and then again with our last.  I sat helpless, terrified, as all dads do whilst their partners/wives suffer through it.  All we can do is bring them inside the shield.

To put it in another context, it’s like Battlestar Galactica: we’re the Galactica and its famous Vyper squadrons, valiantly defending the Colonial Fleet from the Cylons, fighting against seemingly impossible odds.

Like here:

https://www.youtube.com/watch?v=jOSlOsaJVUo

 

See?

 

It’s hard to let go of that shield, however, and put it on the rack for another day.  It’s hard, but not impossible.  There are battles to come, some more important than others.

 

Sometimes it’s okay to keep the guns stowed and the Vypers in their launch tubes…

 

Sometimes it’s okay to put the shield down….

 

daddy wearing his armour

Melody and Her Daddy having containment cuddles.

 

Melody’s Dad –  John writes for his own blog, although somewhat quiet, please pop over and have a look. Hairy Dadders

Neonatal Awareness

 

Charity Awareness – PAIL Awareness

charity towards tomorrow logo

Pregnancy and Infant Loss Awareness Week

This week remembers and spreads awareness about the babies and children who have passed away. I have always been open and honest about my grief journey; my thoughts after Melody died. I don’t really need this single week to do so; however it gets people thinking, it gets people talking, it brings the taboo to the forefront of people’s minds. In the hope that one day the taboo will be a distant memory. We have a long way to go.

When we walked out of the hospital after Melody had died; it became apparent form very early on that the support as a whole for bereaved parents really is few and far between; even more so with Melody’s death. Leaflets, awareness, even charities concentrated on a few scenarios; which of course is amazing, the more awareness the more chances women and professionals will be able to reduce the rate of death. But it can leave parents like us feel alone, pushed out and even more isolated.

Charity

From the first few days I took to online support; but knew I wanted to help more; there’s so much more I want to do. I decided that I would like to try and get a group together. It was something I felt was missing. I ended up contacting Mel Scott of Towards Tomorrow Together, a charity who supports families who have lost a baby through miscarriage, stillbirth, babies with poor prognosis in utero and they included us. So essentially all losses, nobody gets excluded.

Little Daffodils was born; although it was originally named Melody’s Voices I came away from a prestigious baby loss event in 2016 – The Butterfly Awards and knew that giving support and making a difference was so much more than doing something in her name, and in her memory. Daffodils are the flowers for us who represent Melody but they give so much colour, but only live for a short time. I really want to make a difference; sometimes it can feel like I am hitting a brick wall; others when people message for support and then say thank you, I know something must be doing.

Towards Tomorrow Together provide Butterfly Boxes to hospitals to help families create memories in the short time after a baby or child has died. Unfortunately it isn’t something we personally received (back to the lack of support), but they do bring comfort to families who have to leave without their beloved children.

 

little daffodils logo

Education

Through the death of her own baby, Mel has worked tirelessly to raise awareness, put together educational sessions – I have even spoken at one; and in the midst of putting one together myself, with the help of Mel.

It is difficult to get across to professionals the real thoughts and emotions behind losing a baby; through textbooks there should be a time limit. There isn’t.

This Somerset run charity works a lot from fundraising, this year Little Daffodils as a team has made £1900 with various fundraisers.

There is so much more to do within the baby loss community, especially for infant loss awareness; it will take more than a week out of a year to achieve it, but we do need to keep talking, keep listening most importantly to not let any parents – Mums and Dads feel alone and unsupported. Their – our babies mattered.

She wasn’t “just” a baby. She is ours; she was here for five weeks. She is Melody.

 

Julz.

 

Neonatal loss awareness

Nappy-Sacks Danger. Beth’s Story

Miscarriage

I remember the first time I saw 2 lines on a pregnancy test. We had only been trying for a couple of months and I couldn’t believe it would happen so fast. I was scared but so happy and never for a second thought about anything going wrong so 2 weeks later when I went to A+E with red blood I was shocked to be told I had miscarried. I felt like my whole world had broken and remember just wanting to hide away.

Pregnancy

5 weeks later I went to ASDA to buy cough medicine and something told me to take a pregnancy test. I did it right there in the public toilets and was so shocked to see 2 lines again. Part of me worried if was false and from the miscarriage even though I’d had negative tests during it. Right from the start Maison gave me a reason, he was our first little rainbow baby and I honestly thought nothing would go wrong again once we got past 20 weeks.

I had a pretty rough pregnancy involving Hyperemesis Gravidarum, gestational diabetes, SPD and pre-eclampsia so i was induced at 37 weeks. I delivered a very healthy baby boy on 6th August 2012. Except for a bit of reflux Maison was a perfect baby. He was happy and cheeky and we were so in love. He loved people and every day with him was a new adventure. I finally felt like I had found my purpose in life being Maison’s mother.

maison

7th March 2013

The 7th March 2013 started like any other day. I went into Maison’s bedroom to wake him up as we were late getting up. I remember going through the door and straight away seeing Maison lying there with bright orange nappy-sacks over his face. There was also a handful around the top of his head. I screamed and the sound of my voice still hunts me. From that moment it’s all a painful blur. I try and remember but it makes me feel sick and dizzy, I feel like I can’t breathe and like I have an actual hole in my chest.

I do remember that I called 999 but I couldn’t do the CPR so my husband Martyn had to take over. I ran into the kitchen and called my Mom who raced over. The next moment my house was full of paramedics desperately trying to save my son’s life. But i knew he was gone, i knew it was too late. Maison was taken to hospital and i went with him in the ambulance. Martyn was kept behind by the police to be questioned.

Empty Handed

During this they took items of Maison’s and lots of photos. This meant i was alone in a+e watching a team of strangers desperately trying to save my child’s life. It mean I was alone when they gave me that look and said ‘I’m sorry we can’t do anymore’ it felt like my whole world came crashing down. The pain of being told your baby has died is indescribable and nothing ever fills the hole they leave.

I always thought I could imagine what it felt like to have your child die but honestly it is nothing like it. It is something you will never heal from, it becomes part of you and from that moment you change, you become a different person. We got to have Maison blessed in the hospital and have a final hold. Our family all came so they could say their goodbyes. Walking out of the hospital without him was the hardest thing i have ever had to do in my life.

Maison

 

Everybody Changes

I was surprised by all the people who walked out my life when Maison died. People I thought I could count on suddenly wasn’t there when I needed them. I have never felt so alone. I tried different online support but felt I didn’t fit into any of the categories. Maison was too old to be classes as a neonatal death, there was a reason so it wasn’t due to SIDS, there was no illness to blame. His death was just an unlucky accident. Luckily I “bumped” into a bunch of lovely moms online on Babycentre.

They will never know how much they helped me, it was nice to talk to other people who just got it. I know even know years late I can write down how I’m feeling and they will understand. They won’t just reply telling me to speak to a doctor because they know they I can’t be “fixed”

Maison’s Memory

Nappy-Sacks

A few months after Maison died I found out that he wasn’t alone. i heard of another baby who died from suffocating on a nappy-sack so decided to start a Facebook page called Maison’s Memory. We researched and found there were many other babies who had died but there wasn’t much warning on them. Nappy-sacks are usually brightly coloured and make a rustling sound so babies find them very attractive. They are made of thin material which easily covers the face and can be sucked down the airways. Nappy-sacks aren’t required by law to have safety holes like carrier bags so are more dangerous.

I started working with RoSPA on their nappy sack campaign and did lots of interviews to tell people about Maison’s story. I faced a lot of backlash from people who left nasty comments and for a while they upset me. They left me wondering if i really was to blame for Maison’s death? In a way they pushed me to do more and educate more people. If we saved 1 life it was worth the nasty comments. While working with RoSPA i was awarded their archangel award 2016 and got to tell Maison’s story to HRH Prince Andrew. I also got to attend a garden party at Buckingham Palace.

Maison’s Memory has now started the journey to become a registered charity. I’ve planned family fun days and online market nights over the last few months raising money to provide free first aid courses to families. I believe all parents and family members should be trained in the basics of CPR. I also focus massively on home dangers for under 5’s so that another family doesn’t face the heartbreak mine has. I want to run at least one course a month and in the future i hope we can do courses for children and courses with creche services so everyone can learn how to save lives.

nappy-sack awareness

Thank you Beth for taking part in Melody and Me’s Infant Loss Project