Monthly Archives: November 2017

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