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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Evie’s garden

First anniversary

Evie’s garden

A sanctuary instead of a bleak graveside –

changing over time to our needs.

A silent witness to our grief.

Watered with a million tears, it repays our sorrow with spring buds and bursts of colour.

Pink heather in bloom 2015

Reminding us everything lays dormant for a time,

where growing and rejuvenation occurs out of sight.

Purple star

Easily mistaken for a wasteland.

In the blink of an eye – a life time for some – life sprouts forth,

injecting the air with purples, yellows, pinks and blues like sprightly statues of youth and vigour.

Stoutly refusing to give in to the rain and wind that occasionally pounds the English countryside where my baby lies.

Daffodils

Poppy at Evie's garden eating the strawberries that grow there
Poppy at Evie’s garden eating the strawberries that grow there

Consequences of losing a child – have I changed?

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

Lydia

x

My little treasure
My little treasure

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

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