BlopMamma: The Last Story

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.

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The  Northern One and I take it in turns most nights to read Squidge a bedtime story. For a little boy who’s only just one he has a huge number of books which are spilling out of his own special bookcase and onto our shelves where the grown up books live.

When he was really tiny, before I’d properly discovered how to play with him and entertain him I would spend hours reading to him. I’d kept books from my own childhood that I remembered my parents reading to me, taking them with me when I left home and each time I moved house so that one day I could read them to my own baby.

When Squidge was admitted to hospital as a tiny baby (both times) I remember running around the house packing overnight bags for us both and sobbing to the Northern One that I needed to pack a story book for him. In the early hours of the following morning I lay on the bed on the Children’s Ward, Squidge snuggled up on my chest, reading ‘Plop the Baby Barn Owl’ to him.

There is a book that, whenever Squidge pulls it out of his bookcase and brings it over for me to read, reminds me of another little boy and another mummy reading a story. Like Squidge, this little boy had almost black hair that all stood on end and big, dark eyes. There’s a photograph on my living room wall of Squidge at two days old and I can see the similarities in their appearance every time I look at it.

But unlike Squidge, this little boy was dying.

We had been batting to save him since the day he was born; weeks and weeks of ventilation, monitoring, medications, blood tests and surgery but in the last couple of days we’d been forced to accept that this was a fight that we could not win. We’d broken the news to the parents as gently as we could; telling them that if he showed no signs of improvement by the end of the week then the kindest thing to do would be to withdraw treatment and allow him to die.

One look at this little boy and it was heart breakingly clear incredibly sick little boy; obvious to his parents and to us that he didn’t have long left.

The fluid escaping from the little boy’s circulation; it’s vessels made porous by infection had caused him to swell, almost beyond recognition. His skin was tight and yellow and his ears swollen to four times their original size.

Almost since the day he’d arrived on the unit there had been a book in the storage compartment in the little boy’s incubator, maybe put there by his parents in the hope that one day he would be well enough for a story. But even after the parents had been told that there was nothing more we could do, the book remained in the drawer under the incubator. In the midst of all the struggle and grief it was clearly important to his parents to be able to read him his first story.

They could have sat beside his incubator, opening the portholes so that they could touch him and he could hear their voices but it’s not the same as being able to snuggle your little one on your lap and show them the pictures as you turn the pages.

I really wanted these parents to have this opportunity.

It took four nurses to safely get the little boy out of the incubator and onto a pillow resting on his mum’s lap without distressing or frightening him.

Disconnecting the ventilator and giving breaths manually while we lifted him out of the incubator. We had to be so careful not to dislodge his breathing tube; the main thing keeping him alive.

Untangling all the tubes and wires and securely fastening them to the pillow, making sure that he wasn’t lying on any of them which would damage his fragile skin and cause him pain.

Snuggling him under brightly coloured knitted blankets, making sure every part of him was tucked in so that he was warm and comfortable.

The whole process took about ten minutes but once we were confident that he was settled and that mum and dad were also happy and comfortable, the three nurses that helped me went back to their own patients and I stepped back to give mum, dad and their little boy some space.

From the other side of the room I kept an eye on the monitor, watching for any signs that the little boy was becoming distressed; staying within sight in case mum or dad needed me for anything. I didn’t want to intrude on their private family time but equally I didn’t want them to feel as though I’d abandoned them.

Out of the corner of my eye I could see mum open the book and start reading to her son, pausing every so often to gaze at his tiny face. I wasn’t close enough to hear what she was saying but I could hear her soft, murmuring tone and see her pointing to the pictures, describing rabbits and woodland and flowers.

Anyone who didn’t know them or who wasn’t close enough to see how desperately ill the little boy was could almost believe that she was just another mum reading a bedtime story to her baby before she settled him for the night, so absorbed was she in the book.

It was such a simple thing, being able to read your child a story; something many parents (myself included) take for granted but for these parents it was a memory that would need to last a lifetime. One of the most important parts of being a NICU nurse is ensuring that memories can be made whenever possible; remembering that for some parents there will be far too few moments like this for them to recall in the months and years to come.

They didn’t have much time together as a family, these parents and their son and the time that they did have together had been solely in a place of noise and bright lights; full of uncertainty, pain and loss. But as a unit we did everything we could to help them make the most of that time, facilitating cuddles whenever possible and helping them to feel like parents, including reading that very special first story to their little boy.

A few days later the little boy died, snuggled in his parents arms and I shed some tears when I realised that the precious first story his mum had read was also probably the last.

I still think about that family often; quietly keeping the memory of their son alive even though they’ll never know.

Remembering that little boy every time Squidge brings me that one book and remembering to be truly grateful that I have my little boy to snuggle in my arms and read to every night.

BlopMamma: A Letter to Bereaved Parents

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.

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I’m going to begin this letter with one of the most overused phrases of all time and tell you that I’m sorry because I really, truly am. I know all the apologies in the world can’t bring your baby back but it seems almost impossible to talk to someone about their bereavement without telling them how sorry you are.

I’m sorry for the fact that your beautiful baby died before they had even really lived.

I’m sorry that your arms ache for your baby and that your heart hurts from having been ripped to shreds.

I’m sorry that something so terrible and life altering has happened to you.

I’m sorry that there’s nothing I can do to take away even the smallest fraction of your pain.

Now that I’ve sat down to write this letter I’ve realised that I don’t really know what to say. I’m sure that’s what a lot people say to you before they look uncomfortable and you know that they’d rather do anything than get into this conversation with you.

I honestly don’t know which words to use to try and help you but I can listen to you for as long as you want me to. If you need to relive your baby’s birth, life and even death over and over again to keep their memory alive then I will listen. If you want to scream and cry and rage against the downright injustice or if all then I can be there with you. If you just want to sit in silence but just not be alone then I will quietly sit by your side for as long as you need me to.

I can try to understand.

No, not understand, that’s not even nearly the right word to use. I can’t possibly understand even the tiniest part or what you’re going through because I’ve never had to experience the soul rending grief which comes with the loss of a baby.

Loss also doesn’t seem like the right word because it’s not as if you went to the supermarket and left the baby in the trolley; something to be recovered at a later date if you just retrace your steps and think hard enough about where you left them.

I wish I had the ‘right’ words for you but I’ve yet to meet anyone who does.

Even as neonatal healthcare professionals we’re not really taught about the language of death and grief. The Northern One has had one lecture at medical school where they covered ‘breaking bad news’ and I’ve had no training at all. We just have to muddle along as best we can, learning through experience and any resources that we manage to access in our spare time.

I may not know what to say or which words to use but I can sit here beside you and I can listen to you for as long as you want to talk or even if you don’t want to talk at all. Just as I don’t have the words to try and help you, you may not have the words to express you grief and that’s OK. I’m not expecting anything of you at all, I just want to try and give you the space and support so that when you’re ready you can tell me what you need.

Remember that, it’s what you need and there is no right or wrong way to grieve. If you want to cry then do, as long and as loudly as it takes. If you feel as though you can’t or you don’t want to then that’s OK as well, just so long as it’s not anyone else’s opinions or expectations stopping you from grieving the way you want to.

I honestly don’t give a monkey’s what anyone else thinks you should be doing or expects you to do. Your grief may well make some people uncomfortable but that’s their problem, not yours. You have every right to scream your loss from the rooftops or to turn off your phone and stick a sign on your front door telling everyone to leave you be. It is your loss and your grief and no one has the right to try and dictate to you.

Friends and relatives may think that they’re trying to help by telling you that you’ve grieved long enough, that you need to move on or that ‘there’s still time to have another baby’ but there is no time limit for grief and no guarantee that you want to try for another child. It may be that these people are worried that you’ve put your life permanently on hold and so do try and listen to them, even if you don’t agree with what they’re saying.

If you can, try and stay in touch with your GP. If you feel that you need counselling or some other psychological input, if you do think you may want to try for another baby or if you want to try and find some answers as to why your baby died, they are the people best equipped to refer you to the services you need. If you don’t feel comfortable talking to your GP or as though they’re not listening to you then find another one and keep looking until you do find one that fits.

Finally, please do whatever feels right and whatever you need to tell that world that your baby lived; that they are loved and missed and that however short their life was, it did happen. No one has the right to make you feel that your baby isn’t important or that you shouldn’t talk about them, just because they died.

So cover the walls in photographs of them, celebrate their birthday, remember the day that they died; whatever it takes. It is likely that you will come across people who feel uncomfortable taking to you about your baby but, as upsetting as these time are you are still a parent. You loved and still love your baby with all your heart and no one can take that away from you.

There may come a day when you don’t feel the same need to let people know that your baby lived. You may as though you’re forgetting your baby or that you are somehow less sad that they died. But if that day does come, please don’t feel guilty. It doesn’t mean that you love your baby any less or miss them any less. It just means that time is changing how you experience grief; changing your pain from a hurt that can bring you to your knees into a an ache that, while permanent isn’t quite as sharp and gnawing.

But in the meantime, try and be kind to yourself, take all the time that you need, don’t beat yourself up for grieving the way that feels right to you and don’t try and meet anyone else’s expectations.

All my Love to you and your little one.

BlopMamma

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

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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.