The festive season can be a tough time for us bereaved parents. Whether you have living children or not, if this is your first Christmas without your baby or your 10th, it can be a heady mixture of extreme emotions and feelings. I think it’s a time of year when pressing into the bereaved community can really help us get through. Whether that’s reaching out online, attending a befreinding group or a fellow bereaved parent, it can help to off-load to someone who ‘knows what you mean’.
We are fortunate in Oxfordshire to have a very active Sands group and yesterday was the annual Oxfordshire Sands Memorial Service held at St Anthony of Padua church, Oxford. The service has meant a lot to me over the past 5 years as we went to the first one just over a month after losing Evie. This year I was honoured to write and read out something of my personal experience. For those of you who weren’t able to be there, here’s the speech I read out:
My name is Lydia and I have two children – Evelyn and Poppy and one on the way. But my first daughter Evie died just after she was born.
I’m sick of saying that. Of not having a ‘normal’ how many children do you have conversation with strangers. I’m sick of gauging the other person, the situation, how much time I have to decide how I answer that innocuous ice-breaker question. I’m sick of saying “Evie would have been” – she would have not long turned five by the way, I’m sick of it but I’ll keep saying it. I’m sick of my story, that this is true, I don’t want any of this to be true.
I’m so angry that she died. I’m so sad she’s not here.
But despite what happened I am a mum. I may not have all my children with me in person, but they are with me in spirit, in my heart. I am still a mum.
Just a normal mum, doing normal mum things like getting exasperated at having to explain again why an octopus doesn’t have hair and why we can’t touch gorillas; just a normal mum laughing when my child makes a funny face, bursting with love when they utter those beautifully sweet words ‘I love you’. I am not a superhero, I’m not wise beyond my years, I’m not special, I’m just a mum. An ordinary mum who suffered an extraordinary loss.
A loss of such magnitude it rocked me to my core, made me question everything about myself, the world, God, everything. A loss of such depths that I still cannot fathom how far it stretches. A loss that made me feel such sorrow that I thought I would never smile or laugh again. A loss that I did not chose.
But now, now I have a choice. I can choose how this story ends. I can choose to see the beauty in the pain, to see the love in the grief, to see my daughter and not her death. I do not believe it happened for a reason, I do not believe some thing’s just aren’t meant to be, I no longer believe Evelyn dying was a cosmic fail solely of my doing, a teaching tool for a bad pupil of life. I do not believe she died so I could learn things, but I do believe I learned things because she died.
It’s my choice how to live in this post-apocalyptic world with no Evelyn in it. What kind of mother am I in the wake of my initiation into motherhood?
I am a mum who is proud of all her children and proudly speaks their names.
I am a mum who gives everything I have for my beloveds.
I am a mum who loves fiercely and unconditionally.
I am a lioness.
I am a mum who knows what it is to truly put myself second to the needs of my baby, and for that still not to be enough to save her.
I am a mum who feels the heavy heart of grief wash over me in waves that threaten to overwhelm.
I am a mum who surprises myself with my hidden strength when tested beyond my limit.
I am a mum who cares for her living child with a reverence at the simple beauty of a life.
They say that a baby being born is an everyday miracle and they are right. It happens all around the world, every minute of every day and yet each time a healthy living baby is born it is indeed a miracle. One I marvel at and feel bitterly denied in equal measure. But I can choose to let the bitterness take hold, let the anger colour my mood, let my dismay at the ridiculous random nature of Evelyn’s death taint my appreciation for life; let her death ruin my life. Life that she was cruelly denied.
Instead I choose love. Grief is love with nowhere to go. Love brought me to this place of sadness and it also brought me to a place of such joy. I have learned they can live side by side; my heart is big enough to contain them both. We never get over the death of our babies; we just get better at living with it. We accommodate the scar, get used to the limp and we are forever changed. But we can choose how we interpret our loss, we can choose how is defines us.
That is what I learned because Evelyn Kay Rose Berry was born and died on the 27th October 2011, and I’ll never get sick of saying that.
Shown me the delicate secrets of the midnight hour
You have revealed the wonders of a bird’s song
And the majesty of a wiggling worm
You have made it clear that life is a precious gift not to squander
Among the dismal heap of tears laughter echoes
Lydia Berry, written Christmas Eve 2014
There’s a beautifully illustrated children’s book Poppy and I stumbled across in the library called Augustus and His Smile by Catherine Rayner. It follows the simple story of a tiger trying to find his smile again and is well worth a read with your little ones. He finds his joy in the little things and the free things . The patter of the rain; the birdsong in the trees; a heavenward gaze to the stars. All these things are timeless, peace-giving and cosmically bigger than us.
I too, through the experience of losing my first child in such a traumatic and dramatic way, have taken solace over the last five years in nature, in the quiet, in the beautiful landscape of my local Cotswolds. It calms me to focus on the detail of the clouds being blown by the wind across the brown and green fields or to witness the majesty of sunlight shafts filtering down through the haze to the ground. I see Evelyn in the gentle flutter of a butterfly or tiny bird which I tell myself is her reassuring me she’s ok; I find peace in the memorising pattern of a flower’s petals and delight in watching the meandering trickle of a stream.
Feeling connected to the earth somehow makes me feel connected to that perennial motherhood that I now belong to. I feel I wear the guise of mummy awkwardly after such a horrific graduation and it’s ill-fitting mantle troubles me that I could not assume my new role with the ease I was expecting. I was brutally forced into a motherhood of pain and loss right at the moment of triumph when my baby should have entered the world being joy and tears of happiness. I have not gotten peace yet with how I first become a mother.
A smooth and bright cape of Super-Mum was hanging ready for me to lift down and don proudly – I am Evelyn’s mother, fierce for my child. For me, I felt this was trampled on, destroyed and in its place a lumpy, ugly garbage bag was tied around my neck as I gazed upon her lifeless body for the first time. The first time I ever properly saw her, she took no breath, made no cry and did not open her eyes to look at her mummy. I had to live with the exposure to baby loss and the raw grief consumed me like the grim reaper’s cloak.
I have fought very hard to regain any sense of peace in my mind and to regain a sense of a new normal, for the former status quo can never be recovered. I am still trying to pick over my first experience of birth to find any joy, any goodness or wonder; anything I can cling onto to say proudly that I brought Evelyn into this world. To separate her from the manner of her death is a constant struggle. Both her shoulders became severally suck when she was crowning and she was unable to be born for 7 long minutes. My body, in the act of giving her life, prevented it. It is a sick irony that has no meaning I can fathom and yet I feel it hangs over me, a black mark against my motherhood credentials. It goes directly against nature so I try to forge the link back to make myself feel less of a killer and take my rightful place as a proud mummy to two daughters. I’ll get there…
How and where do you find joy? It’s important to find out for your own well-being, despite the struggles and our experiences, our guilt and our loss, parents like us deserve peace and happiness as much as anyone else. I found this interesting article you might like to to consider when thinking about what does make you happy. We can feel out of practice when we have been sad for so long.
Today is Mother’s Day, a day when the focus is rightly on us mums. A day when we hear how much we are loved and appreciated by our children, a day for smiles and lots of love. The tender moments of watching your children express their love for you is so heart-warming and priceless, but what about mummies like me where there’s someone missing?
I’m fortunate to have a second child so I still get my fix of scrummy cuddles, cute slobbery kisses and breakfast in bed – which I have to share with said child because she’s a hobbit and needs 4 breakfasts and couldn’t bear to watch me eat something in peace and by myself.
But as I sit up in bed to be presented with my lovely card and lovingly prepared food there’s a sadness that lingers, dwells in the background, mixes with the air into a bittersweet perfume. ‘There should be two little girls with me now’ float around me dripping with my tears as I smile at my family trying and succeeding to make me know how proud they are of me.
Part of me can’t let the sadness wash over me, can’t tap into the grief to let it out and ease the pressure for a bit. I want to be normal today! I want to just be happy and smothered in love today. I don’t want to be sad and angry about what life has dealt me and robbed me of… but how to I do that without pretending Evie didn’t exist or denying that however I dress it up today is hard because I have to stare in the face the fact that one of my children has died?
Be kind to yourself. Take things slow today and at your own pace. If you’re loss is recent then today is going to be horrible – there’s no other way of saying it. But today will pass, you will survive it and you will get through this time. For those of us a little further down the line and who have other children then it’s a mixed one -the bittersweet joy of having someone calling you mummy and saying how much they love you but the shadow of what would have been haunts the day. Don’t criticise yourself and feel guilty for feeling happy or despair for feeling deeply sad. Try to think about how you are feeling today and think what if my best friend said these things? What would I say to comfort her? Then try to say it to yourself.
Do what feels right, not what you ‘should’ do. There’s so much hype around today – expectations society, the media and marketing put on us on how this day should look. An Instagram picture-perfect Mother’s day is unobtainable for most families let alone a family that has suffered a devastating loss. The tea spills, the kids scream and fight and the beautiful Sunday lunch at local restaurant experience has only served as a powerful contraceptive to everyone else in the vicinity. There’s no ‘right’ way to celebrate being a mum; if you want to do it quietly then do it! You want to shout from the roof tops about your children – all of your children, then do it! Putting extra pressure on yourself to act/perform a certain way when you are already in an emotional place just makes today a day to dread.
Express yourself. If at all possible share how you are feeling with your partner, mum, friend – anyone who is close to you. Just saying it how it is can be very freeing, especially on a day like today where there’s lots of mixed emotions. They say a problem shared is a problem halved. Well grief isn’t a ‘problem’ but it does weigh us down, so sharing it with someone does lighten the load for a while – which can’t be a bad thing. Expressing how you really feel can be very freeing – you don;t have to put that smile mask on and pretend everything’s fine when it’s not. Try and see what happens!
Be in the moment. When you lose a baby you feel like you will never smile again. Never laugh, feel joy, feel ok and feel happy. And for a time that may be true but as you get more accustomed to your grief then you realise that you can feel those wonderful emotions alongside your sadness. It’s a weird balance but you get used to it bit by bit. Something that my Evie has taught me is to be in the moment. To treasure the precious times for what they are. Not letting my mind be distracted, learning to turn off the internal monologue that continually says – this is sad, why me?, why is vie not here, this is horrible, I want to be normal, this is sad, why me? – you get the point. By tuning into what’s happening right now in front of you means you can truly experience life not watch it. In a way, see it that you don’t want to waste the life you’ve been given that was denied to your baby. Revel in the moment and see what beauty comes of it.
Feel the love. You are a brilliant mum!!! Feel it, let yourself feel it and let yourself be pampered and doted on for the day! If you are anything like me you spend most of your time flitting between thinking you are a horrible mum for wanting to put nail varnish on, by yourself, let it dry and it not smudge; and then thinking you are not doing a good enough job because the other day your child picked their nose, you yelled, they cried and the neighbour you were talking to slinked back to their house, eyes widening with what looked suspiciously like judgment. But you know, all of that doesn’t leave much space for thinking and feeling that – you know what?… despite it all I’m doing my best, my child is loved and that’s enough – that’s more than enough. So FEEL THE LOVE TODAY. You’ve earned it!
Until next time do what it takes to find your smile again.
Listening is loving
Maybe I’ve been afraid of life and through Evie’s death I’m learning to live it.
This is something I got obsessed with – how I’d changed or not because of what happened was a constant newsreel in my head. Every decision about jobs, reactions to family and in particular the parenting of my second daughter has been scrutinised as part of my ritual need to see proof of the awful consequences of Evie dying.
Something that unfolds over time are the multitude of consequences of losing my first child. Many are obvious but many more are often only really apparent as the months and years march on.
Having our second daughter so soon after our first
Having a c-section with our second pregnancy rather than natural
Withdrawing from our social lives
Going on antidepressants
Countless sleepless nights
A general feeling of “everything is out to get me” and anxiety
These are some of the consequences of losing Evie. They are a mixture of negative, necessary and inevitable consequences of such a bereavement and not all of them are long-lasting or permanent, I can see that now. It’s the permanent ones that interest me the most, as they will be the permanent mark on my life that show how I’ve altered as a result of losing my first baby.
I do feel at times like I’m playing make-believe
I do feel at times like I’m playing make-believe, that this title of mummy is temporary and when the grown ups come back I’ll have to take off the heels that are too big and set aside the dressing up clothes of parents to rejoin the ranks of the immature. I don’t feel qualified to do this children malarkey and in some ways that is a good thing because it keeps me on my toes and fresh to adapting my parenting style to be to best I possibly can.
However I also feel like this parenting gig is temporary because I know the harsh reality of how precious life is, how short and how easily it can be lost. There is a big part of me that still thinks – “how long will I get to keep Poppy for?” “how long can the dream last?”. I still think it could all be taken away, she could die and I be back with nothing again. Just because I’ve had an awful thing happen once doesn’t mean it can’t happen again. I shouldn’t be so presumptuous to assume I can have what I want when it comes to having children. For those of us who live this reality of having our worst fear actually happen to us, we know how perpetual fear and anxiety of potential bad things happening to our children takes its toll on our souls and state of mind.
When Poppy was first-born I genuinely thought to keep her here it was my job to be close at all times and some how keep her heart pumping and her lungs breathing. It was exhausting. As the months have turned to years and she has proven she can stay alive I have slowly relaxed… slowly. I believed that if I stayed vigilant, alert and anticipated any and every potential illness, accident, bump and cough I was doing my duty to protect from harm my living child as I couldn’t with my first.
The truth is that you can never do it enough – and it doesn’t work. They still get ill, fall over, get hit by another child and bang into tables despite your best efforts. The best we can do is find a balance between our heightened sense of anxiety about our children’s health and well-being and a “normal” amount of worry. We have to tell ourselves we know the likelihood of them catching meningitis is small so don’t spend time every day worrying but make sure you know the signs. Remind ourselves we know they will very likely fall over when they are learning to walk, put pillows down, be with them and rub any bumped knees – they will be alright.
One consequence many bereavement parents find hard is that you cannot say to us: “don’t worry they will be fine, nothing is going to happen to them. This pregnancy will be fine, it’s not going to happen to you. It’s such a small statistic so don’t worry”. We have seen that the worst can happen, pregnancies can be fine and then not: we have been that statistic.We are very hard to comfort in the respect and have to manage a much bigger slice of fear than others might.
Surprisingly I believe there is one way my altered self is better now than if I hadn’t lost Evie – I do not take my second daughter for granted, not one bit. I marvel alongside her when it rains and stand awestruck at the magic of bubbles just as she does; I laugh at Bagheera’s head ringing when Baloo shouts for him at close range in the Jungle Book (a current favourite film) and learn the words to The Gruffalo’s Child slower than her sharp young mind.
I wonder at her development as the months progress and she masters the shapes and sounds of words and the art of stringing them together to be understood. Her indignation as another child pushes her and her effortless ability to forget how that felt when pushing others, both amuses and angers me as I educate her on the need to be gentle and kind. I hold close to my heart the knowledge of how fortunate I am to be doing this at all, how privileged to be responsible for bring up this beautiful child in this imperfect world.
I have a respect for my daughter that gives her a voice and right to her own feelings; I try to teach her emotional intelligence not just counting and animal noises but words like angry, sad, happy and I’m full. I love how opinionated she is and assertive, I’m excited to see how her fledgling personality and character traits will thrive and develop as she grows. I will enjoy her like I cannot enjoy my first and not get caught up on a mark on the carpet or whether the washing is put away. I will devote myself to her for both her and my own sake. I will take an interest in her in all things. I will soak her up like warm summer rays, take her in like nourishing broth and drench myself in her like an exquisite perfume.
The daughter that lived
Until she is fully grown and can possibly understand such things, I do not know if she will grasp how much she has inspired me to embrace life without Evelyn. She is my motivation to carve out the best life I can for her, myself and for my family. She makes me strive higher, work harder, moan less, understand more, and generally pushes me to achieve what I am capable of, an ability I thought I had lost. She has reignited a lust for life that I thought had been extinguished. A heavy burden indeed for such small shoulders but I hope she will understand it is more a gift she has given me purely by being here and there is nothing she must actively do that will ease my sorrows and patch me up. Her existence is enough to cheer and soothe me and I sincerely hope I do not make her feel under pressure to live up to my expectations of the “daughter that lived”.
You see these are my worries: that the ultimate consequence of Evelyn dying is a warped parenting full of pressures and expectations that are harmful or damaging to my second daughter. My sister told me that after she had her second child she realised that with your first you don’t know what you should be worried about so you worry about everything and with your second you don’t have time to worry about anything other than the stuff you know you should worry about. I can see the logic in her wisdom but for me it is not really applicable, if anything, worrying about my second supersedes my worries for my first. Nothing can hurt my first, I can do nothing more but there are many, many things that could go wrong with my second, too many possibilities for harm by others or by my hand that if I’m not careful it will paralyse me.
I remember one example of trying to balance my gratitude that Poppy is here at all and trying to be a balanced parent who doesn’t let her get away with everything. One day I shouted – yes I know it’s awful – but she was driving me mad by not listening and generally being a nuisance while I was trying to cook tea. I had banished her to the living room in a desperate attempt to continue the cooking – and an even more desperate attempt to ignore the judgement in my head that I was winning worst mum of the year hands down – when she came back in. She climbed up onto her kitchen stool, sidled up to me, leaned in and told me she loved me. In that instance my heart melted, all my frustration from the day vanished and I realised she loved me unconditionally. She didn’t care that I had been cross, she didn’t judge me or think I was a bad mother who couldn’t teach her to be a model two-year old (they exist, don’t they?); all she cared about was that I was hers, I was her mummy, that was enough.
Seeing me through her eyes was inspiring, it stopped me in my tracks and it dawned on me I needed to bank this moment in my memory for future reference when I was having a bad day and thought everything was wrong. This fleeting mystical moment would be my proof of everything that was right with me and my daughter, my ‘little treasure’ as I tenderly call her, my little beacon of light in the darkness of the past few years.
Keeping a constant check on whether my decisions, reactions, instructions and example for my living child are balanced is a tiring occupation but I do feel it has largely paid off. I do not think I am over protective above and beyond a normal parent, I think I am sufficiently laid back that she can explore and find her own way without me hovering over like a helicopter, nor do I think I stifle her or express over the top fears about the world around her (in fact sometimes Poppy having a bit more of a health fear for the world around her wouldn’t go amiss!).
SO I guess what I’m saying is that despite my tendency to doubt my own abilities and my battle for sanity since losing Evie, when I really think about it, I do believe I am doing a good job parenting my second daughter in the way I believe is right. Even saying that out loud is a huge achievement and one not lost on me.
Until next time… do what you can to find your smile
When we have such a enormous dollop of grief to deal with it can often feel like you will never be happy again – never see the silly side of life or be able to smile and seem carefree. For a while this may indeed be true, but you have to cling onto the hope that you will, one day, feel better and you will be able to smile again and enjoy life – this new life.
But getting back to when things are much harder… Being and feeling happy when you also feel so sad is intolerable. Your mind cannot compute how you can hold such despair, sadness, anger and hopelessness in one hand and laugh or feel joy in the other. It is a skill in its own right. Never before (potentially) have we had to do this – carry the weight of grief and continue with our every day lives where funny things happen, joy is given by one of your living children or a work colleague or something on the tv. Some of the main questions we have are:
How can I laugh when my baby has died?
Does this mean I don’t care about my baby?
Will other people think I don’t care or have ‘gotten over it’?
How can I be a good parent/human being if I laugh when something so tragic has happened?
And the answers are:
Because it was funny! You have a sense of humour that has not been lost in the fire (as it were) you are still you and certain things will make you laugh. It’s good to laugh – makes you feel good and gets the endorphins coursing through our veins – much needed at times of deep sorrow.
MOST IMPORTANTLY you are NOT laughing at the fact your baby died. and no one will think you are; it is a given that you care deeply for your baby. Laughing at something and your baby dying are separate things and this will take time to get used to, you will get there. You can see it in terms of your baby would want you to feel joy – like they felt when they were with you, warm, no cares in the world – loved. They would want that for you and you should want that for yourself.
OK firstly – who care what anyone else thinks? They haven’t got a clue what you are going through and have no right to judge, so screw them. If they are true friends they will not judge you but support you (and probably laugh along with you). But, if you’re like me… I do care what other people think about my love for Evie. I can’t demonstrate it like I can for my other daughter – it is evident I love her by the way I care for her every day. But with Evie how can I show my love? Well by grieving – crying alot, declaring my love for her on facebook, in texts, on my blog, helping other to come to terms with their own grief…but mainly it is hidden. It’s in my heart and it resides in a very personal and private space. And that can be hurtful and upsetting that we cannot outwardly demonstrate our love for our baby without it being a ‘down’ emotion – sadness/anger/despair/depression. Our great challenge as bereaved parents it to demonstrate our love in positive ways – ideas on a postcard please!
COMPASSION – is the buzzword here. Ask yourself, what will it achieve if I beat myself up about laughing or feeling happy? It will make you feel guilty, low, worthless and undermine your self-esteem – and what’s the good in that? Be kind to yourself and forgive any ‘sins’ as you might see them. Your worth as a human and as a parent are NOT linked to whether you laugh of not, how well you cope with your loss and how well you outwardly or inwardly grieve your baby.
Perhaps when you start to emerge from the fog of grief (this can be a different length of time for each of us) and you can say you feel a little more clear-headed and ‘normal’ then it may be time to ask yourself this question:
Who is in charge of my happiness?
The perhaps not so obvious answer is: YOU.
You are in charge of your own happiness
This is something I find very difficult to fathom. I think for a few years I wanted someone else to take responsibility for it – it was too hard. By deciding it was my family, my husband, my friends’ job to make me happy it meant I could blame someone else when I was not happy or content, thin enough, successful enough. To admit and accept I am my own master of my own happiness is a whole lot of grown up that I’m not sure I’m ready for.
I think this is especially pertinent to bereaved parents of babies. We rail at the pure injustice of what has happen – and someone has to pay! Sometimes we direct our focus on the NHS, care givers, friends who weren’t ‘there’ for us, parents who didn’t understand us or said the wrong things, partners who didn’t get our demonstrations of grief, and if in doubt you always focus blame on yourself.
This is sometimes a very necessary short-term phase that we have to go to – we are dealing with some big stuff here and it takes time to work it out – how do I function and lead a fulfilling life after the death of my baby? This is no small question.
The problem arises when this short-term strategy becomes habit and part of your ‘new normal’ (I’ll talk about this in another post). We can actually start to become the main obstacle in our own happiness which is good for no-one.
There’s a great article on Psychology Today which talks about why we don’t let ourselves be happy. They list 5 main reasons:
It disrupts our sense of identity
It challenges our defences
It causes us anxiety
It stirs up guilt
It forces us to face pain
Each one on the list resonates with me and here’s how:
Having Evie and my grief for her death is a part of my identity now. Being Evie’s mummy is very positive and should be part of who I am now but the mechanisms and strategies I developed to help me grieve may have welded to me and harming rather than helping me. But they feel like they are a part of who I am and I feel like my identity has been battered over the last few years – who am I now? I a huge question I’ve asked myself (I’ll talk about that in another blog post). So it feels scary to shrug off what appears to be a part of me.
I had developed defences through my life to cope with situations and people, which is entirely normal. Losing Evie made those defences kick-in in the extreme – my need for control and protecting my own vulnerability from people who may say something that upsets me. But these defences could now be becoming detrimental to my happiness rather than helping me survive…something to think about.
If I let go and enjoy myself, it feels like I’m leaving myself more vulnerable to hurt, loss, and disappointment. If I have more happiness because I’m more fulfilled then I have more to lose. It’s very scary when you have already lost so much.
Feeling happy now can make me feel guilty that I’m not where I was 2/3 years ago. If I cling to those sad times I feel I’m closer to Evie, in those sad times I was closer to her in chronological time but I need to get my head around being close to her now in other ways. It’s difficult to see the time your baby was physically here and with you slipping away – you feel distant from them. I do still feel close to her but just not in time but that’s ok, just.
Being happy now in the present is such a contrast to the sorrow I felt in the first months and year when Evie died that actually feeling an extreme high of happiness can be a stark contrast to that sad time and make me feel upset. It’s upsetting to remember when I was so sad and hopeless and to see the difference in me now can actually be really hard to see. As the article infers feeling more of anything means you feel everything more. You feel your pain of loss but you can also feel joy; trying to block out pain blocks out all emotions not just to difficult ones. I want to try and be brave to face my pain so I can feel joy too. Now what tends to often happen is we have a lovely day with Poppy and family and then in the evening I may have a cry because it emphasises that Evie wasn’t there to share it and I wasn’t able to enjoy these moments with her – it still is heartbreaking.