Joanne: Perception of loss in the worst possible way

I’m angry right now. I really need to stop reading magazines and watching TV.

I’m angry at the media and their portrayal of mother’s in particular that have lost children and the storylines that these programmes give them.

In recent years we have seen for example, Ronnie Mitchell “lose it” after she lost her son to Cot Death a few years ago … What did the writers do? They made her swap her baby with a neighbour and attempt to bring up the child as her own …. So basically mum gone nuts.

For the past few weeks , I’ve been closely watching a storyline in Coronation Street with a character called Jenny … A few weeks ago, I said to Dan, I know where this is going … It’s going to turn out that she is about to pretend another character’s son is her own and it’s going to turn out that she has had a son that as died … lo and behold, I’ve just read a spoiler alert from TV Times and I was completely right …. This is where the storyline is going … I’m not impressed, a) because of the way they send these characters personalities b) because it is focused yet again on the mother of a grieving child.

…. I know unfortunately thousands of people lose children and it is so wrong that it happens but the media really do not help the way in which grieving mothers in particular are perceived … No wonder people in general don’t know how to talk to grieving parents, what to say and what not to say …

The media in these two storylines in particular have portrayed the grieving mums as that they have completely lost it, that they have gone mad!

Yes it hurts, it hurts so bloody much to lose a child but did it make me want to take someone else’s child? No it did not. Did it make me want to jump to my death with someone else’s child? No it did not. Did it make me want to pretend that someone else’s child was my own ? No it did not.

Why, for once, can the media not portray something real, something positive to come from a grieving parent losing their child. Dan and I are not the only parents to do something positive in the memory of their child.

We know of many parents that successfully run charities as legacies for the angel children.

We know lots of people that have fundraised in memory of their children.

Do we know anyone that has lost a child and tried to swap it for another? No, we do not.

Do we know anyone that has lost a child and tried to kidnap another and jump to their death with him/her? No, we do not.

Do we know anyone that has lost a child and likes to pretend A.N.OTHER is their child? No, we do not.

Do we know parents who have made amazing legacies following losing their child? Yes, we do.

Do we know parents who have gone on to have normal healthy relationships with people following losing a child? Yes we do.

Do we know people that have/are dealing with their grief in a completely normal way after losing a child and at no point tried to impersonate being another child’s parent? Yes, we do.

Can you see where I’m going with this?

I apologise to any script writers/media people that may have been involved in writing these storylines if they are offended by what I am writing here… In fact, no hang on, I’m lying here .. I’m not sorry at all. I am not sorry at all that I have just told you that you’ve made me angry, that I am offended by the way that you have portrayed these grieving parents. Can you honestly sit there and say you consider grieving mums when building these storylines? I’m not too sure that you did.

And yes I know it’s just a TV programme.

It has made me wonder whether people have actually done their research into these storylines properly, whether it has actually been considered by these people the effect that they would have on a mum who has lost a child. If this has made me mad, I’m pretty sure there are lots of mums out there that feel the same … Particularly as I don’t get mad that easily at things on TV.

When you lose a child, you do feel like you are going mad, you do feel like you are in your own world, you do feel like no one understands and you do feel completely and utterly alone. And do storylines like this help? Not in the slightest at all.

No wonder that baby loss is such a huge taboo within our society when this is the best type of storyline that a “talented” writer - and I use that word loosely there in this context - can come up with about a grieving mum.

Where are the storylines that show the parents dealing with the grief together? Where are the storylines showing how strong the grieving parents are? Where are the storylines showing legacies and changes being made from the loss of children in soap families?

It’s clear that some people genuinely think that there must now be something not quite right about someone who has lost a child – how can they ever be “normal” again I know some people think.

It’s not like that. It’s not like that at all.

Life doesn’t end when you lose a child. It feels like it does for a while but ultimately it doesn’t. Albeit, there are some very dark places you go when you genuinely think that it would be easier to join them, but the majority of people manage to successfully pull themselves out of these what seem to be never ending dark holes …. and continue with their life.

Life does continue, it never quite feels 100% right again , but it does continue. Without the kidnappings, without the swaps, without the bonkers mums and without the need to want to pretend that someone else’s child is their own.

So peeps, what am I really saying here?

Yes I lost my daughter and it rocked all of my senses,

But I didn’t lose my marbles and have the urge to commit offences.

I didn’t want your child to hug and perceive just as my own,

I just wanted MY child in arms again, the one that I saw born.

I promise I’m not crazy and I promise I’m not my mad,

And I really do appreciate all the genuine support that I have had.

It can be hard for you to understand that I am just the same old me,

Don’t be afraid to ask me questions, I don’t mind, really, feel free.

Love one ( still sane ) mum to an angel xxx

~ ~ ~ ~ ~

Joanne and her husband Dan established Millie’s Trust when they tragically lost their daughter during a choking incident when she was at nursery at just 9 months old in October 2012.

They didn’t want her passing to be in vain and they wanted to do something long lasting in her memory, this became Millie’s Trust.

Millie's Trust (registered charity number 1151410) provides First Aid courses at the lowest possible cost and FREE First Aid awareness courses if you are pregnant, have a child under the age of 12 months or are struggling to find the funds to attend. They also provide a Paediatric course for nurseries to ensure more nursery staff become trained.

Joanne also writes on her own blog Same Person, Different Me which is where this blog post was originally published.

Nicole: Flicking the Humanity Switch

I’m a fan of the tv series ‘The Vampire Diaries’, and over the show’s 6 series there’s often been talk of the vampires being able to turn off emotions, or ‘flick the humanity switch’.  The main character did this when her brother died, and recently someone else did after the death of her mother. 

It strikes me how very much I’d have loved to have done this when my first son died.  In the days and weeks following his death I often said to my husband how I wanted to just sleep and wake up in a few months’ time when I felt better.  Desperate for reassurance that the gut-wrenching grief that I was experiencing would lessen eventually, I turned to other bereaved mums, those further down the line from me, and asked ‘would it get better?’  Yes, they assured me, it would – my grief would never go away, but it would feel less heavy, the hole in my life less sharp, less unmanageable .  Whilst this was very reassuring, I wanted to skip to the end (typical of me, I’ve often been one for spoiling the end of a good book by trying to read the last few pages before I should). If someone had given me the opportunity to ‘flick the humanity switch’, to turn off the pain, the guilt, the hurt so all-encompassing that at times I felt I couldn’t breathe – well, I would have jumped at the chance.  I didn’t want that much pain, there were many, many times that I felt I couldn’t deal with it.

But here’s the strange thing.  A few years down the line I wouldn’t take away that pain for all the world.  Would I have my son not die?  Of course I would.  I wish he were safe and well, and here with his little brother.  But since he did die, I wouldn’t take away all that pain I felt. Because  - as I slowly began to realise – you have to experience that pain to get to the other side.  There’s no escaping your emotions – try to bury them and they just pop back up to get you when you think you’re doing ok.  You need time – masses of time – as much time as you individually need – in order to work through your grief.  And space – you might need  a quiet room, or a graveside spot, or somewhere that you can think or feel, or just be. 

Through my voluntary work I have the privilege of offering support to other bereaved parents.  When they come to our support group, newly bereaved and raw with emotion, it hits me physically.  You can sometimes see the grief written on them.  It can weigh people down,  it can be etched on their whole being. And I never stop wishing I could just take it away.  Simply reach over, and take it from them.  See them walk out of that room with their head held high, shoulders no longer pushed down by the burden they carry.  But I know I can’t.  They have to work through it.  For some it might take months, for some years.  To some extent, it’s a lifetime’s work.  But those emotions – all that feeling – are part of what makes us human.  We can’t ever flick that switch and turn it off.

Over time I’ve come to understand that to be human, to have all the many good things that come with that honour, we have to take on the bad too.  I had the shock of discovering I was pregnant with Xander, the joy of carrying him, the wonder of feeling him move and the excitement of planning his birth and what was to be our new lives as parents.  With that, I’ve had to accept the devastation of being told he’d died, the dread of anticipating his birth, the pain of leaving him at the hospital, and the wrench of letting him go.  It’s a trade off that I’m always sorry I had to make, that no parent really should have to accept.  But there it is.  And all that love I have for him is matched by my grief over his death.  So, 3 years and 9 months on from his death and birth, would I flick that humanity switch, given the chance?  No way.  Turning off my grief would have meant turning off my love for him, and there’s no one, and nothing, that could ever make me do that.                           

Right Where I Am Writing Project 2015

Would anyone be interested in submitting a guest post to us on the theme of where you currently are in your loss journey?

We have been running the Right Where I Am project since 2012 and this is what gave us the initial impetus to set up the blog.

We will soon be writing our posts for this year's project (usually publish them all through July and August). As always, we would love to feature some more stories too.

Your post should be entitled 'Right Where I Am' followed by the time that has passed since your loss/es. Here is a link to our posts from previous years if that helps:

Right Where I Am

If anyone would like to contribute, please email us at lossthroughthelookingglass@gmail.com or please feel free to comment below with any questions.

Clara, Gemma & Nicole x

BlopMamma: When NICU isn't fair

BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks. Her blogs have made an interesting addition to Loss Through the Looking Glass, looking at loss from a different perspective to that of the bereaved parent.

~~~~~

Working as a neonatal nurse means that my colleagues and I can’t escape from the stark reality that some babies are born sick and, despite our best efforts to save them some of them tragically die.

In order to carry on working in the job that we do without burning out or making ourselves completely miserable we have to accept that sometimes there is nothing we can do to save  a baby. As heartbreaking as it is to admit it, it’s a horrible fact of life and there’s no escaping from it, much as we wish it wasn’t true.

When we lose a baby we allow ourselves to grieve and we acknowledge that our grief does not make us weak but shows that we’re not made of stone. We all know that the day that we no longer grieve is the day that we no longer truly care.

So we shed our tears and we hold the parents and tell them how sorry we are. We go to funerals where there are tiny white coffins and we remember the babies that have died in our own private ways.

But ultimately we have to pick ourselves up and carry on or risk becoming completely bogged down and losing our way and we all know this.

But even with all our coping mechanisms, methods to relieve stress and off-loading to understanding partners and friends there will always be some cases that hit us hard and that we find difficult to deal with.

For me, the babies that I find the most upsetting to care for are the ones that we have no answers for. Not only do we not know how to save them but we don’t even understand why they became sick in the first place.

These are the babies who are born to mothers who had easy, straight forward pregnancies with no indication that anything was wrong with either mum or baby. They’re not born prematurely or show any other warning signs; in most cases we have no idea that anything is amiss until the baby is delivered and it quickly becomes apparent that something is dreadfully wrong.

These are the babies who break my heart.

I sit beside her, stroking her head and rubbing her little hand with my thumb.

I’m waiting for the doctor to set up the necessary equipment so that he can scan the little girls heart.

Her little face is grey and she’s clammy with sweat. The bedside monitor starts alarming and when I look over I can see her heart rate rising even though nothing has happened to upset her.

She’s so distressed that nothing seems to calm her and the only time that she settles is when she’s asleep.

I talk to her softly; telling her that I’m here and that I won’t let anything bad happen to her. I know that she doesn’t understand what I’m saying but I try to soothe her with the sound and tone of my voice.

I know that we’ve got some difficult decisions to make for this little girl and we need this scan to help us make the one that is best for her. The scan will show us how effectively her heart is functioning but we’re not expecting good news.

I also know that because she’s so distressed we’re going to need to try and finish the scan as quickly as possible but at the same time it’s going to be difficult to get an accurate scan of her heart.

I’ve wrapped her firmly in her blanket, partly to try and comfort her but also to stop her from waving her arms around and bashing the ultrasound probe, meaning that the scan would take even longer that it’s doing already.

Her little face is so swollen that her features are distorted and her eyes are almost permanently closed, such is the effort of trying to open them. On the rare occasion that she does open them she doesn’t seem to be able to focus and they dart about wildly, displaying her obvious distress.

She hardly resembles the newborn baby who arrived on the unit in the middle of the night a few weeks ago. If it hadn’t been for the lines and wires attached to her she would have been no different to any of the other full term babies born in the hospital that night; each beautiful and perfect in their own individual ways.

The doctor doing the scan is trying to be as quick and as gentle as possible but it’s not enough.

She struggles against me and I start singing to her softly; the same song over and over, not caring that the doctor is looking at me strangely if it helps to calm her down and willing to do anything to take away her pain.

The breathing tube in her airway prevents her from making any sort of sound but it’s obvious that she’s crying in fear and distress. I can feel the lump rising in my throat and the feeling I get of my nose threatening to start running just before I cry.

I don’t know how to help her.

I don’t know what to do.

I have to grit my teeth and bite my tongue to keep the illusion that I’m calm and in control when in reality I want to burst into tears at the downright injustice of it all. I know that life isn’t fair but this.

I can’t think of anything less fair than being lead to expect that you’ll have a healthy baby to hold in your arms, only to have them snatched away from you for reasons that no one can explain.

A few days later, despite trying everything that we could, the little girl died.

We never found out why she became so unwell and, as a unit we were heartbroken that we lost her.

Accepting the limitations of medicine and of our own knowledge is one of the most difficult things about about being a neonatal nurse and something that hasn’t really become any easier the longer I’ve been a nurse.

It’s never felt fair.

I don’t think it ever will.

Jessica: Liminality

Jessica Zucker is a clinical psychologist in Los Angeles who specializes in women’s reproductive and maternal mental health. Find her online www.drjessicazucker.com and on Twitter @DrZucker. This poem is republished with kind permission from Jessica and was originally published on the online literary magazine Mothers Always Write.

~~~~~

Are you real, darling?

I study those turquoise pools of curiosity for verification

as they twinkle.

I smell your nascent toes

as you suckle my breasts.

Our breath rhymes as we lay spooned.

When our lips meet, we brighten.

All of this is evidence of you

being real

hearty

here.

Swaddled in health.

Whole.

But how do I know for sure?

Trauma harangued assuredness,

banged it up, bruised it.

Nothing is for certain, it seems.

Loving you so fully

stupefies

reverberations of loss.

Who was the girl who came before,

but isn’t?

If she was,

you wouldn’t be,

confounding.

My Miscarriage

turned me upside down,

though it all looks right-side up

now

from the outside.

Anxiety visits

previously a stranger

unwanted alarm bell

a reminder

not to take life or love for granted.

I yearn for pre-miscarriage me.

Fresh faced, naïve maybe

bucolic burgeoning belly

without reserve

or preoccupation.

Grief grips.

Fifteen months should prove your staying power.

Nevertheless

my mind

wanders

to stormy places.

The trauma of this second trimester loss

lives in me

harnessed me, harasses me

will be here

is me.

Wishing won’t yield change.

I’ll settle on hybridity, even

Re-find. Refined.

Her mommy

is me

this me

inverted

for now, for always.