Annual Oxfordshire Sands Baby Remembrance Service 2017

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Once again we gathered together in Oxford for the annual Oxfordshire Sands memorial service to remember our babies and share the comfort that a common loss can bring. It was a beautiful service led so gently and with such compassion as always by Phil Sutton.

Here are the words I shared at today’s service, they are a very raw and honest account of where I’m at right now and I hope that by sharing it will bring comfort to those who feel alone with their feelings and circumstance right now.

6 years ago on the 27th October 2011 Evelyn Kay Rose Berry was born at 11:54am. 55 minutes later she died, being held by staff at the JR, while we, her parents, were being rushed to her in an ambulance. After a textbook labour both her shoulders got stuck and they wrestled for 7 long minutes to free her. When she was born she was limp, unresponsive and silent. She never cried or opened her eyes, never moved of her own accord outside of the womb. She was whisked away to a waiting ambulance and driven 20 miles from Chipping Norton to Oxford where she died. When we arrived at the hospital I asked a doctor if she was dead and she knelt beside me with tears streaming down her face, confirming that she had passed away. They brought her straight to us, a perfect bundle of joy, except she was dead. And from that point to this day so is a part of me.

That forensic description of what happened to my darling Evelyn, my firstborn, my daughter, tells you in a few words what happened. What it does not tell you is how it felt to go through that experience and how it still feels 6 years on. I have just been diagnosed with Post Traumatic Stress Disorder and post-natal depression. I have these conditions because what I went through was so deeply shocking and profound that I am struggling to come to terms with it. You see the stark reality for parents like us is that we have physically suffered, witnessed things, experienced emotions on such an extreme level that most cannot comprehend what it is to lose a baby. The reality for many of us is an excruciating daily existence that makes us even question whether continuing to live is a viable option considering the physical pain our grief gives us.

For me the truth of losing Evelyn in such traumatic circumstances doesn’t look pretty. My sleep has been greatly affected since and I can still find getting a good night’s sleep elusive. I suffer from anxiety and panic attacks and can find myself debilitated by a crippling sense of fear when nothing dangerous is near. I have flashbacks and feel like my memories are of the present not 6 years in the past. I feel afraid a lot. When I hear something awful has happened to someone else it can make me fear the same will happen to me, again. It makes me physically sick when I cry so hard in my yearning to hold my baby and struggle to make sense of what has happened. It makes me hate my body for its inability to keep Evie safe; it betrayed me. It makes me second guess myself, who I am, my parenting style and denies me peace with a constant monologue in my mind that berates me, criticizes me and tells me I’m a failure. It makes me wish I’d never had children and yet love them all so intently that my confusion that I can think these opposites sends me into a low mood instantly. It makes me wary of new people and prevents me from making much needed mummy friends and contradicts my naturally sociable personality.

Bit of a grim read but I don’t want to hide the truth any more. I ask myself, ‘who am I being brave for?’ Sometimes I want to give up, the fight is too hard. I am not equipped for the daily battle for my mental health and for my family’s wellbeing. Putting on a brave face and functioning appeases those around us – they can comfort themselves in thinking we’re ok now. They just want us to be ok. But what happens when 6 years or 10 or 30 years on, you’re still not ok? There is a basic need for us all to function and find for ourselves a new normal, we need it for our own sanity. But what happens when you do all of that and you’re still not ok?

We don’t need to be brave anymore. This is why I have confessed to you my troubles. It’s ok to be overwhelmed and traumatized and affected and changed. We have all been through extreme life-changing experiences. No-one is equipped to deal with these things by themselves. It’s ok to reach out and ask for help from professionals as well as friends and family. It’s ok not to cope and need support however long ago you lost your precious baby. It is by being honest, by leaning into the pain that we walk through the tunnel towards healing. When we are in the middle of the tunnel, the darkest part, we must go forward towards the light on the other side where there is the promise to find a peace with our past so that it does not dictate our futures. It is a promise that I am having to believe blind right now, for I am in the middle of the tunnel, I am in the dark night of the soul and if you are here with me, be comforted in knowing you are not alone. We have all been where you are now and we will not abandon you to the abyss but walk beside you on your journey of grief.

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Bearing the scars – life after loss

In a parallel universe, I would have just sent off the forms for our choices of schools for Evelyn. In this universe, a silent pang of sadness fills the void where her life would have been. I see the shadows of how I should be living my life all around me; they haunt my dreams by night and follow me by day. And yet I continue, I go forward, I will and I must #lifeafterloss #joyafterloss

Milestones are a standard joy for any parent – first smile; first attempt to crawl; first word; birthdays; first day at school; first car; wedding day. There are many and we revel in celebrating them – as we should. Milestones for me with my first daughter read a little differently – first time I felt her kick; first labour experience; first time I saw and held a dead baby; first funeral I’ve planned; first anniversary of her death: my first baby.

There is so much sorrow intertwined with the birth and death of my first child that I could get stuck in that place, unable to see the joy in life. And believe me I have been in that place; but slowly and deliberately I have travelled to a more balanced place where joy and sorrow reside side by side in my heart. I still cry regularly but the depths are easier and quicker to climb out of now – I suppose I have worn a path out of the valley, well-trodden with my frequent visits. But I can also stop in the park with my Poppy on the way to nursery, as I did this morning, and listen to the birds with her. Dancing our way up the path to their morning birdsong. Savouring the small joys all around me with my precious second daughter is Evelyn’s gift to us both. Out of my sorrow has come a deeper appreciation for life and an urgency not to waste a moment of it. I think it has made be a better mummy; my pain has been transformed into a fierce love for the gift of life.

I do want to say though that this all sounds great, and it is, but is was a rough journey getting here. I want to be real with you all so let’s go back a bit…

Following Evie’s death life felt distorted and out of proportion, it felt incredible and not in a good way, it felt incredulous and basically like a film. It did not feel real and nor did I, I did not recognise the landscape of my existence and to be frank I felt like a caricature of myself. A ridiculous parody of what I should have been, what I should have had. An uncomfortable reality for someone who had always strived to match the perfection in her head – this was about as far from it as I could get.

Having been reasonably slim I now lugged around an extra goodness know how many pounds, my postpartum body felt like one of those fat suits people wear on TV to look like sumo wrestlers. Having tried to embrace my changing shape during my first pregnancy, I believed the trade of figure for baby was a worthy sacrifice. Weight had been an issue for me for years and so to gain so much was, psychologically, for me a very big deal. I was severely (in my mind) overweight with no baby to explain my curves. I felt cheated of my perfectly good excuse for why I’d let myself go.

Matt and I before we got married and had children
Matt and I before we got married and had children

Indeed, a few months after our loss, some friends hired a log cabin for a weekend break and generously invited us along, a small gesture of kindness that was gratefully received. One evening while we all sat in the hot tub, I very self-consciously surveyed my friends’ carefree, slim bodies and was dismayed at the disparity when I cast an eye downwards. Meekly I said that I felt like a caricature of myself and my friend said, “but I just think of you as you”. I took that with the gentle spirit with which it was said, that I was not seen as any different in the eyes of those who cared about me.

In my head I was a leper now, a social outcast, destined to join a travelling freak show and be wheeled out 3 times a day to be ogled at by curious members of the public who wanted the chance to be up close to … what? A grieving mother, a baby killer, my mauled body a satisfyingly gruesome visual memorandum that babies die? Yeah it doesn’t sound real to me either when I say it like that… it doesn’t feel real, still doesn’t, er have I said that already?

Inside and out I didn’t recognise myself; it was disconcerting and shattered my self-confidence and self-belief. I felt ship-wrecked and the task of piecing myself back together was overwhelming at first. Something that helped was challenging thoughts I privately thought to be true. For years I had staunchly thought people would think I was lazy, ugly, out of control, unemployable and ultimately unlovable if I was overweight. But by challenging that thought with reality I realised none of my friends or family stopped loving me after I had gained weight and I have successfully had 3 jobs since Evie’s death so my skills clearly outweigh my appearance. SO conclusion…I’m just nuts! No really, the truth is that bearing these physical scars has taught me such an invaluable life lesson that I have solely Evelyn to thank for it. She has helped me learn what I could not by my self – beauty is on the inside; people don’t judge me half as harshly as I judge myself and people love me for who I am not what I look like. No small list of things to get into my think skull.

I feel like both physically and mentally, visibly and invisibly I bear the scars of the past 4 years. The fresh wounds have scabbed and scarred, the searing pain has dulled to an occasional throb but the scars remain. A permanent reminder of my experience, my life journey and my daughter. I’ve had a rough couple of years but if I can see the beauty in a sunny day; the joy in getting ‘Rainbow Dash'(my little pony for those of you not in the know) for Christmas; the delight in a good book; the delicious aroma of a Sunday roast then I think I’ll be ok. For the small joys are balm for my soul indeed.

My sister and I on my 30th birthday party
My sister and I on my 30th birthday party

Until next time, do what you can to find your smile again.

Lydia x

The day after… the aftermath

The beginning of the rest of my life
The beginning of the rest of my life

The day after I stood looking out of the bedroom window at the clear blue, crisp late autumn day, my favourite kind – how has this happened, how was I here and not pregnant? Everything looked so serene, a beautiful day; it should have been my second with my beautiful baby. We had slept in my brother’s bedroom as we were too much in shock to enter our apartment. The fear of the day had followed us home and we were afraid to go back into our house, which hadn’t been told that the plan had gone awry. It was just as we had left it the night before, full of hope and excitement, full. To go back would emphasis our lack of full arms and highlight our hearts full of loss.

We were required to return to the hospital to been seen by a queue of doctors, midwives, chaplains and lastly a registrar. It was exhausting for us both. I just remember lying on a hospital bed in a side room, hurting from head to toe inside and out, with the chaplain telling Matt that he had to look after me and think about being off work to take care of me. My dear husband lent against the windowsill, sunlight streaming past his hunched shoulders, the weight of the world settling on them. As this experienced man spoke, as he had done this many times before I suppose, there was a tangible sense of Matt taking on the manly mantle of caring for his distressed and hurting wife. He was not asked how he was, it didn’t seem important, he must turn his attention to me in full and ‘be there for me’ in the days and months ahead. Poor thing, poor us.

Neither of us were in much of a state to care for the other and so began the months of swapping between being career and cared for. Sometimes our roles would fluctuate throughout the day and other it seemed an endless stretch of me being cared for, I just needed so much. I was a leech sucking on the goodness of anyone who got near enough – offer any morsel of kindness and I’d eat you out of house and home. I was so needy and it felt strange to be so reliant on others but I had no choice, the delivery was traumatic to my body and I had trouble walking, sitting, standing – everything really except lying down, as long as it was on my side. My once stubborn, independent streak had been worn down and I was forced to submit to my need for intensive support to move around the house and look after myself. I hated it! I was so vulnerable physically and in so much pain and discomfort it took its toll on my state of mind and lead me to some dark places I can tell you.

For a long time when I thought of what had happen to me that day to get Evelyn out I felt assaulted, man-handled and abused. At the time I really was secondary to Evelyn and getting her out, I was happy to let them do what they needed to. I’d never truly been in a position of genuinely putting someone else ahead of myself. I know you change when you find out you are pregnant – you immediately have to adapt your life, what you can eat and drink, to ensure the wellbeing of the little one growing inside, but this was off the chain (to quote Hot Fuzz, an excellent film by the way). Looking back it was a very humbling experience and a sense that has stayed with me ever since of how much unconditional love owns you, compels you and brings out the best in you. I was at my best that fateful day, it was my most unselfish and perhaps my finest motherly act, to not fight them as they tried to loosen Evelyn’s shoulders enabling her to be born.

Until next time, do what you can to find your smile again

Lydia

x

Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain

It's not why me? but why not me?
A hard question to ask.

Now this post is not one I could have written just after having lost Evie. In fact it’s been formulating for a bout the past year and to fruition in these lines. Would love your thoughts on this…

We have one of those very trendy shabby chic shops near our house, in amongst the rustic old-looking new photo frames and trinkets you don’t need but really want to arrange effortlessly about your house, there’s a faux old wooden sign with the slogan – “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” How fantastically sentimental and glib I would have thought a year or two ago. Life cannot be summed up in clever puns and one-liners – maybe that should be put on an over-priced wooden sign and sold to people who want to appear witty…and breathe Lydia.

Now, having just got quite cross about this sign and its attempts to explain the human condition, I have to be honest and admit that it does rather coin a notion I had been circling for a while. The awareness that I am not exempt from life’s blows resonates with me the most – I’ve finally got it! I am no more entitled to a life free from pain, suffering, poverty or hardship than anyone else; why shouldn’t I have lost my baby, someone’s gotta, people have to die some time. It is not why me? but rather why not me?

Life is unfair which is true enough but it is much easier to say when a healthy dollop of loveliness has been portioned on your plate. Just because I had had a terrifying loss does not mean I could not suffer something similar in the future but in equal measures is the likelihood of it not happening again. This fragile balance of worrying about the unknown and not letting it stop you from living is a hard one to master.

This conclusion – thanks I thought it was rather profound too – did not come to me suddenly but rather gradually over the last few years. Before all this I think I was quite normal in my perception of the risks of stepping outside my front door, driving a car and flying on an aeroplane. I did not fear bad things happening to me other than in a general vague sort of way that was very manageable. I was able to remain level-headed in the face of other people’s misfortune, I was not superstitious and didn’t really believe in tempting fate.

However, as you might imagine everything really did frighten me for a long time after Evelyn died, I felt very exposed and fearful that every terrible thing in the world was lining up to happen to me next. The sad thing was that for a while they did. Over the next year my family and I suffered a string of losses and ill health, like we were in ancient Egypt and the plagues just kept coming. I used to be comforted by statistics, safely believing I would remain on the right side of them, but when you have been the 1 in 200 (not random but the actual statistic I made true when I lost Evelyn due to shoulder dystocia) you do rather feel singled out.

Have you ever felt like this? Singled out and punished or made an example of? The loss I suffered was obviously so personal it was easy to see it as personal – as in personally done against me; when the reality is that it was not. It was ‘one of those things’ (HATE THAT PHRASE) but it’s true. My daughter died due to geometry and well, the perils of childbirth – it seems so stupid and senseless that our human sense of justice just can’t stands it.

When I hear of about unusual types of deaths (not often I’ll admit) I always think I’d be so annoyed if I died like that. For example, I’d be very annoyed if is was Debby Mills-Newbroughton, 99 years old. She was killed as she crossed the road. She was to turn 100 the next day but, crossing the road with her daughter to go to her own birthday party, her wheel chair was hit by the truck delivering her birthday cake. (Taken from a list of unusual deaths in USA).

Humans are meant to die of noble, noteworthy and meaningful causes not by trying to be born or from walking across the road. But we do. The manner of someone’s death seems linked to the value of their life – if we can be wiped out easily like ants then we’re no better than ants, surely?

Well, I don’t think this is true – do you?

It was hard not to think like that when Evie died, it was so against the natural order of things that I felt justified in my outrage at God, fate, the universe etc for taking her away. One of the hardest aspects of my daughter’s death I am coming to terms with is to see it that she died and wasn’t killed. she was not taken from me by some evil being or horrendous plot and my body did not kill her in the act of giving life.

Some days I’m better at it than others.

Until next time, do what you can to find your smile again.

Lydia x

So… what happened? How did Evelyn die?

Ok – deep breath – I think I’m ready now to tell you about what happened, to explain why I’m so traumatised and why I’m writing at all…

Indeed, the house felt pregnant just as we were and one evening as I lay in bed recovering from the flu; which I had not been able to shake for two weeks, there was an excitement in the air as I called to Matt to come to our bedroom. I had rolled over in bed and mid roll I had felt a pop and then liquid, nervously I suggested that my waters had broken. I had a rush of adrenaline as I started to try and wrap my head around the fact that the mystically adventure of childbirth was beginning. The only way I can describe it is that my mind just cleared and I became very focused on my mission: Mission Baby. I knew I would be up all night so stayed in bed to get what rest I could, I recalled what I had read – that this stage could take hours and having been ill I wanted to conserve my energy.

Matt flitted around excitedly like a moth to light, fussing over me, checking then rechecking the hospital bag, that was his job and he took it very seriously. Another job he took up with extreme vigour was putting in the car seat. He spent goodness knows how long out in the car, in the dark, trying to fit the thing and conquered it just as I was starting to really find out the difference between Braxton Hicks tightenings and real contractions – am I right ladies? Slowly but surely the contractions started to come on stronger and more regularly; in fact I know this for a fact because Matt had downloaded a labour app and was helping my time each contraction and length of time between them – what a modern father. Actually it was really useful because when we decided to call the midwife unit again and they asked about the contractions, we could describe with twentieth century accuracy their development over the hours.

One vivid memory I have as we left for the hospital was the excitement, the expectation, the anticipation… the hope. As my mum and step dad waved us off it was all very civil and tame – a big hug and a ‘see you on the other side-esque’ farewell. We fully expecting to see them in the morning with a baby. The chilly October night air did little to quell our delight that the wait was finally nearly over and after a very uncomfortable but thankfully short drive we arrived at the birthing unit of our little town…

Now I can literally feel my fingers slowing down as I type this, my pulse is quickening as we draw near to the trauma. By writing this story I cannot pretend it is a story, a fiction, I cannot rely on one of my scripts to get me through. I feel like I am going back there, going through it again as I lay down the sentences, words and letters that spell out our disaster. Dare I go on to tell the details that few people have heard first hand – the long version that is, the uncut visceral version that means you can see me at my most vulnerable? I’ll just tell myself, “For Evie, my Evie”. If one person can be helped to feel not alone in their grief it is worth it, through gritted teeth I will tell you what happened.

After a routine labour, textbook progression to full dilation and pushing baby down – their words, not mine – it was time to see our little girl. I was in the birthing pool so they moved me around to get into better positions for baby to crown. Suddenly the midwife’s voice changed and she became very firm, concise and serious, “get out the pool now”, she said with a telling urgency. I complied unquestioningly asking for help to get me out of the pool with essentially my baby’s head between my legs (you get the picture). Then things moved very fast. It was clear she was not coming out easily and there was a rush to ease her stuck shoulders. All I am going to say is that they had to perform several, increasingly invasive manoeuvres on me to try and dislodge her and allow her to be born. The pain of limbs being grabbed and pushed beyond their normal limits, helped to stretch by hormones, an episiotomy with no pain relief and the echoes of my cries as several people rushed in to work on me is an experience branded on my mind forever.

The indelible ink of those moments are not images as such, my eyes tightly screwed up in horror meant most of the memories run deep in my muscles, the dark depths of my mind’s eye rather than in Technicolor, although no less vivid. Images, however, are all my husband has of those excruciating moments that determined our daughter’s life. He bravely held my hand and silently stifled his tears as his world fell apart literally before his eyes. It pains me to think of how he suffered, actually without sounding melodramatic it hurts my very soul to think how he suffered, how I suffered and how our darling girl suffered. Oh this is tougher than I thought to put down in words…

When the rush of relief swept over me, signalling they had finally got Evelyn out, it had been seven long minutes. The seven longest minutes of my life, too long, but long enough to destroy my daughter’s chance of a life. I just can’t believe it, I cannot believe I’m recounting an experience that is mine and not someone else’s… please let this be someone else’s story.

She was rushed away to waiting doctors out of my line of sight. Then, before I could comprehend what had happen she was taken out of the room to a waiting ambulance, I saw the side of her face and head. Incidentally it was the last time I saw her alive.

I was left lying there in shock, numb from the head down crying and looking between Matt and one of the midwives for reassurance that would never come. The midwives and other medical staff agreed that I could wait to be stitched up and that we could follow Evelyn in another ambulance to the large hospital 20 miles away.

The journey is the longest, most terrible I have ever endured. I started praying out loud and didn’t stop through the endless minutes and miles to the hospital as we traced the path our daughter had already taken. I remember at one point the midwife who accompanied us lamenting, “the power of prayer!”. I was doing the only thing I could for my family, crying out, pleading for my daughter’s safety and for peace, neither of which ever came.

We finally arrived at the hospital and the waiting staff opened the doors of the ambulance. This is the point when my husband says he knew she was dead because they did not say anything to us as they wheeled me out on the bed; they did not say she was critical and they would take us to her now, they did not say she was ok but poorly: they said nothing. In a cold, anonymous corridor a doctor crouched down beside me and before she could wipe the tears to speak I asked her, “she’s dead isn’t she?”. A silent nod confirmed my worst fear and I crumpled into my hands as the tears began to flow uncontrollably, my life energy flowing out of me with each hot teardrop.

I literally feel hot and close to tears just writing this, but I must write it, I must try to make sense of it, I have so many hurts and regrets about the hours after we were told she had died. The shock drew over me like a veil; I could not take anything in. I could not look at my daughter as she was placed in my husband’s heavy arms, I could not accept what I was seeing – a beautiful bundle of joy, but lifeless and still.

My mum and brother had followed us to the hospital and all I can remember is my mum sobbing, “I’m so sorry, I’m so, so sorry”. She asked what we had called our daughter, and without discussion we both agreed ‘Evelyn’, which means life and wished for child and she really was.

We were led to a private room where we stayed for the rest of the day. Slowly the rest of our immediate families joined us in our sorrow and to see Evelyn. It again was one of many perverse parodies of what we all should have been doing on the day she was born. We should have been showing her off, instead we struggled to be in the same room as her.

The first time we were along with her, just us three was to dress her in our clothes we had lovingly picked for her first day. Bizarrely for a few moments I enjoyed the decision making of choosing the clothes, rummaging through the carefully prepared hospital bag for the perfect outfit. A brief glimpse of what might have been. The saddest part for me about dressing our daughter is that we couldn’t do it. Every time we tried to touch her or thought we saw her head move we were frightened and confused that she may have made those movements herself. Like some horror show she was not dead, instead I was terrified she was hovering between life and death and would suddenly open her eyes or something equally disturbing. It was hugely distressing. In the end we asked the midwife to help us but she did it quickly so I never got to see my baby’s body in full.

This is where I get very upset, so many regrets pile up and threaten to overwhelm me and my memories of my child. In all we didn’t spend much time with her at all probably 40 minutes and after we left the hospital that day we never saw her again. I discuss this in my post “The conversation of Death” that I just wish someone would have gently shown us there was nothing to be afraid of, helped us to calm down and study our precious one, that she was not a dreadful character but our daughter, a human being to be explored and considered with dignity. I do not think I showed her the respect she deserved, that I should have shown her as her mum. I am so mortified that my shock prevented me from spending quality time with my daughter. I feel robbed of those moments that I can never reclaim, salvaging what I can from the wreckage is all I can do now; picking over these bones hurts and subsequently I do not do it often.

Even over three years later I cannot shake the sense of deep shame I carry for how I could not look at her when she was brought into us after we arrived at the hospital. I could not hold her or appreciate her. I could not touch her or take her in. I am so sorry. I am so sorry I could not look at you properly, as a mother should, and say you were mine. I regret that those precious hours were stolen from me by my shock.

I don’t know about you but I need a drink!

So until next time do what you can to find your smile

Lydia x

Our darling Evelyn
Our darling Evelyn

The conversation of death 

Bit of a heavy post today folks…

Talking about death and what happens when someone dies is not as big a part of our cultural norm as it should be and this has been on my mind for a while now so I thought I would share my thoughts with you and see what you think on the matter.

Looking at our society and culture nowadays I believe Death has been removed from our homes and our conversation. Over a century ago it was very much the norm that when someone died it would likely be at home and even more likely they were kept at the home until they were either buried or cremated.

The intimacy with death in the family setting has diminished over the last century and as a result our ability and opportunity to see death has diminished and increased our discomfort. We are not at ease with the physical presence of death. We are at a loss on how to deal with it. We don’t know how to behave around the dead.

The physical and practical tasks associated with the immediate aftermath of death are now a mystery and have donned a mystical shroud – ghostly and frightening. The dead have been transformed by the movies theatres and gruesome video games into puppets, cartoons – unreal villains, zombies and vampires. Caricatures designed to play upon our fear of dying and fear of the unknown world of the afterlife.

In this world nothing can be said to be certain, except death and taxes.

Benjamin Franklin

So if death is a part of life, why isn’t it?

For me death isn’t a part of my life, I never saw any of my grandparents after they had died and haven’t lost any other significant person to me that I could visit. And then I lost Evie…

In my opinion when you also then factor in the shock of losing a baby, someone dying when they should be being born then instincts take over. Except we don’t have instincts that guide us towards this manner of death – they make us run away, as far away as possible.

For me this is a huge source of anguish and deep regret about my own reaction to my baby’s dead body. The manner of Evelyn’s death and the fact we weren’t with her when she died meant I could not take in what they were telling me – she was dead. She was then presented to us as a perfect bundle of joy; as my husband held her crying, I turned away as tears poured down my cheeks, not able to accept the news and not able to look at her. We were barely able to spend time with her and we both found the entire experience of being with her frightening.

It pains me to say but I am so ashamed of my reaction – how could I be frightened of my own daughter? How could I not face her? I’m her mother and she deserved that, she deserved my unflinching attention when meeting her for the first time. My love for her should have overrode my fear but I was not strong enough and now I don’t know what to do to allow me to feel peace about this.

There is a lot of work being done in the NHS to ensure people have a good death, experience dignified palliative care and can make choices about their own demise. But is it possible to have a good death when it comes to babies?

Is it possible to have a good death when it comes to babies?
Is it possible to have a good death when it comes to babies?

Firstly what is a good death? For the dying it would be retaining a sense of control, being treated with respect, dying with dignity intact, feeling comfort and peace and not being afraid. But what is a good death for the surviving? Having a sense that goodbyes had been said; perhaps sharing the moment of departure with their loved one; seeing their loved one during final care and then their body being treated with decorum and respect; not being afraid of what was happening and being able to spend time with their loved one after they had gone if they wishes. Is is obviously not exhaustive but it is an interesting idea to consider.

Is any of this possible for parents and their baby? The short answer is yes but it depends on the manner of the death, whether is was known in advance or was unexpected and, of course, it depends on the individual parents and their ways of dealing with loss.

For myself, I know if I had been able to spend more ‘quality time with Evelyn is would have helped me see she was gone and admire who she was physically. This is a rather unique type of death and circumstance for parents to process.Our baby has only just arrived and we are forced to say goodbye; or else they have gone before they have arrived – !?!?!?! Often our only time with our child is when they are dead.

Handling a dead body is strange, foreign and deeply disconcerting to our modern sanitised minds. We don’t get too close to the physical and practical business of preparing our loved ones after death ready for burial or cremation. There has been a cultural shift away from a hands-on, homespun cottage industry approach where the family and locals would take care of the body. It makes us believe we are not equipped to deal with death at close-hand unless we are professionals.

Now I’m not suggesting we all must prepare our dead and that to grieve properly you must. Instead, I’m suggesting that because these tasks are governed by law and are licensed, by implication we feel we should not and cannot be involved in some of those tasks. When talking about a baby’s body in particular,  I am referring to the parents washing, dressing, holding baby; taking mementos such as photos, hand and foot prints and locks of hair; and having the baby in the room with them for extended periods of time perhaps in a cold cot. When somebodies dies they cease to be our loved ones and become property of the hospital or funeral home.

This can make you feel disenfranchised – that your power over decisions has been taken away. Your choices are reduced to pre-defined tick boxes that you are guided through in a compassionate yet professional manner that allows parents time to think (as long as we get the answer later today). The preparations and organisation of laying someone to rest is a bewildering time any way and so you are more likely to rely on what you’re told, and perhaps much less likely to question.

Time is vital and cannot be reclaimed

I want bereaved parents to know what they can do with their baby in the hours and days after their baby dies. That they are in control and should be made to feel like they are indeed parents i.e. it’s their prerogative to own that baby and be deferred to on all decisions regarding their child. We do this when your child is alive and it is paramount we do it when they have died.

One way perhaps to start bringing the conversation of death into our everyday parlance is events such as a ‘Death Cafe’. At a Death Cafe people “drink tea, eat cake and discuss death. The aim is to increase awareness of death to help people make the most of their (finite) lives.” – See more at: Death Cafe.com.

Or developing the emerging market coming from the US of ‘Death Doulas’ or ‘After Death Services’. Often women with a background in midwifery or with personal experience of tragedy, they seek to guide families through the decision and practicalities of bringing their loved one home after they have died and preparing them for burial or cremation. Helping them overcome the legal ramifications and hoops to jump as well as showing them how to handle a dead body and deal with the more visceral aspects of decomposition. For more, see a fascinating article: Who owns the dead?

 

Whatever path we take I believe the goal should be towards re-teaching the modern mind the skills of how to commune with the dead. We need to see them for what they are – not a scary army of corpses, but our nan, our dad, our sister, our son, our baby. Maybe one day I can stop beating myself up over this and focus on Evie in such a way – my dearest baby.

Until next time, do what you can to find your smile

Lydia

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