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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Wave of Light Memorial Service October 2017

Sunday 15th October marked the end of Baby Loss Awareness Week. An amazing week where the topic of baby loss received great mainstream publicity. It really felt like the message for getting out there that we are not alone. This was also evident at the memorial service held at St Mary’s church in Banbury. Over 75 people came together to remember our babies and light a candle as part of the global Wave of Light. It was a very special service –  the first of its kind in Banbury. I spoke at this event what I hope was a message of hope for the future so here are my words for those of you who were unable to attend on the night.


I’m a survivor. I’m a survivor of baby loss and often I feel I wear that badge with a heavy heart. You see your world stops when you loose a baby. It slams into a wall with the full inertia of all your hopes and dreams, expectations and love you have for your baby. We loose a lot when we loose a baby.

Having children is the craziest, richest part of life. Full of highs and lows, it’s ridiculous and sublime, testing, fulfilling and purpose-giving. But for parents like us it is so much more – there is more pain, more sadness, more grief, more regret, more tragic memories, more difficult decisions regarding our babies, funerals, post mortems, spending time with them or not. We know how precious life is.

It is also less – less an entire person, the lifetime of the baby/child/adult that we lost, loss of friends, relationships, time, loss of innocence, loss of a sense of peace, loss of faith perhaps, loss of what could have been.

Those first days, weeks and months, even years can be a dark place, a lonely place, a frightening place. We gathered here today know all about those days. We recognize the weariness of those days, the longing for happier times, for joy. But we can feel robbed of turning our minds to the future when our hearts are in the past. Frozen in time, when the clocks stood still and we laid our babies to rest. The thought of turning forward, to hope, to plan, can feel like turning our backs on our babies, leaving them there as we move on. But I want to say to you today this is not true. We carry our babies in our hearts with us into the future. They are ever present, as we remember and honour them. Their future is with us and we must have a future.

When you lose a baby you do not lose the right to happiness, joy, purpose or fulfillment. Your future does not have to be ruined by your past even if your present still hurts like hell.

It is a truth for all of us here today that we can still go to lead joyful, happy, purposeful and fulfilled lives. It will take time and we survivors of baby loss will feel like it’s a fight for joy after loss. But it is possible.

I want to make you a promise today, wherever you are in your journey of grief, however long ago you lost your baby, you will find happiness and joy again. You will find hope. Fragile, wisp in the wind hope that will become stronger and clearer until you can grab hold of it to wear as armour as you forge ahead, your baby in your heart, to dare to hope for better days, a family, life again, a new normal.

#Wave of light

In the rich tapestry of life there is sadness and there is joy, there is anger, regret, excitement, anticipation. They all go hand in hand but for us, we can feel heavy and full with these emotions, thoughts and feelings.

I feel I’ve felt that full spectrum of those emotions, you see I’m now a mum looking after 2 children. Florence is only 5 months old, Poppy is nearly 5, and my oldest Evelyn would have been turning 6 at the end of this month had she lived. I’m like every other parent in the sense that I have children that I’m actively caring for and yet I am not like them. I am alone, separate, different, changed. I am a parent of a baby who died. Who has seen things, experienced and felt things, gone through things that most will never know.

So one of my fights is the joy of life with children, just as I fight to minimize the sadness. And even for parents like us there is joy to be had – not that I would have believed it for a long time after Evelyn’s death. The bittersweet quality of our lives is ever present. To begin with more bitter than sweet and we have to fight to swing that pendulum further away from the bitter and more towards the sweet. And what a fight it is. When you have had thoughts of ‘I’m sorry I couldn’t save you’ about your own child everything else can pale into insignificance. But there is still joy to be had like the wonder of nature, a rowdy football match, time with friends, a favorite film watched on repeat or a personal best at the gym; we don’t want to be robbed of that too, to loose that too.

Also I think some of being a parent after loss is having to fight for the right be a ‘normal’ parent who is tested and gets tired and gets annoyed at their children and who gets down from time to time from the daily grind of family life. It can feel complicated when you are faced with the normal challenges of parenthood when you’ve lost a baby.

For me, honesty time, I’m finding it hard having a 5 month old and a 4 year old, juggling their different needs, lack of sleep or time for myself, worrying I’m doing a good job. But for me, it’s really hard to admit to myself that I’m finding it hard. Harder to admit to others that I’m finding it hard and hardest of all to admit to you fine folk that I find it hard.

You see I don’t want to appear in any way to be ungrateful for having these children with me. I know how lucky I am to be doing this at all. I know how I longed to be looking after a baby after I lost Evelyn. I would have given anything to be up all night with a baby crying. And yet I’m finding it hard. I found our recent holiday hard – juggling a beach day with heat and a very fussy baby who wouldn’t feed well and a four year old who wanted to go rock pool exploring and got grumpy with tiredness and hunger.

But all this can reside side by side – being grateful to be a parent but finding the challenge of it difficult. Feeling excruciatingly sad that our baby died but also fantastically happy and joyful at a first word, first day of school, first dance. All this is life, real life. It’s ok to feel overwhelmed by the very thing you longed for. It’s ok to laugh and feel joy even though you lost your baby. It’s ok to embrace life and look to the future. Take you babies, nestle them safe in your hearts and look to the future and see what wonderful things come of it. We all stand together, bravely piecing our lives back together, we understand our loss, we understand our fight for joy.

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

x

 

And then there was three! Learning to trust again

We are proud to announce the safe arrival of Florence Iris Eliza Berry, born 4th May 2017. She is perfect and we are so in love with our tiny bundle of joy!

Having taken a break from my blog to have another baby I wanted to fill you in on the last year. I decided that rather than throw myself into blogging while pregnant I would focus on just living it. Life is busy when you’re increasingly pregnant with a nearly full-time job and a four year old; however now the time has come to talk some more.

It was not an easy decision to get pregnant again. I had endured a very difficult pregnancy with Poppy in a time of immense anxiety and stress so I wasn’t in any hurry to go back there. But the truth I started to understand was that I could not go back to that time. I could only go forward and carve a new pregnancy which, although deeply informed by my previous experiences, would be new and special in its own right. I had done so much grief work and physio that my mind and body were not going to be in any better shape for the journey ahead so we took the plunge down the rabbit hole once more.

On the whole the pregnancy was smooth and I was surprised at how little anxiety I felt compared to Poppy’s pregnancy. It seems the intervening years had helped me regain some sense of calm in the sea of fear and risk that I now see as a normal part of having children. Sadly for me having a baby is not a purely joyful time, it brings up memories, regrets, sadnesses and pain that I have to deal with anew. The end of the pregnancy did have a big challenge in the form of gestational diabetes which was a real curved ball for me and made me feel like I would not ever have a stress-free or pain-free time having children… unfortunately I was proved right with Florence’s delivery.

I have to have c-sections now – a legacy of losing Evelyn to shoulder dystocia. I could give birth naturally but the anxiety of the risk of it happening again would be prohibitive so major abdominal surgery it is. I was so afraid of the spinal procedure to get you ready for having the baby and sadly it was horrible – they took 5 attempts to get the spinal block in, we were one more failed attempt from me having to have a general and not see her being born. They final got it in and I was able to hear to most beautiful sound in the world – the cry of my new baby daughter bellowing out across the room as she took her first gulps of air and glimpsed through tiny eyes her mummy and daddy. It was magical and amazing and everything I’d hoped for. She was mine, we had done it. I’d grown a human and kept her safe and alive, who was now in my arms weeing on me! #Motherhoodgoals

However, I then felt pain that couldn’t be controlled and I was forced to have a general the finish the c-section. This had several consequences for me. It meant I came round hours later in excruciating pain, barely able to acknowledge my baby let alone care for her or feed her. The next day I contracted two very severe and painful complications, which rendered me in so much pain that I couldn’t talk or move, oh or care for my baby. Finally, I was treated poorly by the staff on a busy night shift who didn’t diagnose me for hours, got me high on morphine but didn’t address my complications and separated me from my baby who I couldn’t look after anyway. My husband had to care for her while I writhed around in pain for hours until finally everything was brought under control 30 hours after the birth of my daughter. My care once I was brought back up to my own room which we had to beg for was fantastic but up until then the combination of pain and poor care was horrific.

All of this has left me with more feelings of anger, hurt, sadness and failure that I really wanted to avoid with my last foray into having children.

I don’t think I’ve fully processed what I think and feel about it all but it does give me a heavy heart that for me it seems in different ways having children has been quite frankly shit. Don’t get me wrong, I love Evelyn, Poppy and Florence with all my heart but when your pregnancies and births read like a horror story of death, anxiety, missed precious time, oh… and lot and lots of pain with them all, forgive me when I don’t gush about it. I’ve noticed I don’t even refer to Florence’s arrival as her birth – I call it her delivery. I can’t safely birth my children so I have to defer to medical professionals to remove them from me. I know I need to change this view as it robs me of the right to say I gave birth to my children but it’s very difficult for me to conquer.

This brings me to the idea of trust. We trust in ‘mother nature’, whoever this chick is, to guide our bodies through pregnancy and childbirth, and most of the time this works. Our bodies instinctively know what to do and hormones – the amazing and powerful chemicals that course through our veins – turn cells into a baby and helped our bodies birth that baby, giving life.

But for me I lost trust in my body when Evelyn died. The process of her being born is what killed her – how can that be? She was just trying to be born like everyone else and yet in trying to start her life, it ended.

For mothers like me, your baby lived in your body, grew and formed. If you had a pregnancy loss it means the baby probably died in your body too. It’s hard to trust your body again in any way when it was supposed to produce and protect life and instead it was where death occurred or where a traumatic birth led to death. How many deaths of a loved one occur in your own body? What a bizarre and life-altering experience to go through.

What I want to say to myself and to any other mothers out there, like me, struggling with traumatic births and neonatal death, stillbirths, pregnancy loss, and difficult births where the baby lived, is this:

Please know that your body wanted this for you too. She was rooting for you, hoping with you and doing everything she knew how to do to protect this baby with you. She grieves too. It is not your fault. Do not turn your anger and pain inward to punish yourselves, despite the temptation. We mothers, strong and courageous, can destroy ourselves with the strength of our belief that the buck stops with us; if no other cause is found then it remains as our fault our baby died or had a traumatic birth. Let us turn our self-inflicted conviction from a life sentence of failure and guilt to a life-long journey of acceptance that we are not to blame.

So as I look forward now to family life with two children here to care for and one to remember, I need to heed my own words and internalise what I find so hard – my mental wellbeing is paramount to my own purpose, my children’s and my family’s. Ultimately, it does not do to dwell on how they entered this world but that they did at all and they are here with us in spirit or in body. There is a time to think on it and process, grieve and be in the depth of our sorrow and there is a time for joy and celebration, gratefulness and forgiveness of apparent failure. Maybe one day I can write that I have achieved this state of mind, but I think the reality is that I will strive each day to make the choice on how to spend my time either grieving, laughing, quiet reflection or loud joy.

 

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

xx

Oxfordshire Sands Memorial Service 4th Dec 2016

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.

Oxfordshire Sands logo

For more information about Oxfordshire Sands and the incredible work they do please visit their website: http://www.oxfordshiresands.org.uk/ and follow them on facebook page .

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

Lydia

x

Unflinching look at grief – the day Evie went to school

starting-school

Today is a difficult day. Today, my eldest daughter Evelyn should be going to school but she’s not. She’s not going anywhere. She’s been buried in a cemetery in Chipping Norton for nearly 5 years.

Still, she has been a constant presence in our lives, elusive and ethereal.A wisp so light and semi-transparent that dances around the periphery of my vision at all times and yet this ball of energy, this soul, carries the gravity of a planet, drawing me in, pulling me towards her trails of smoke, my hand daring to reach out and grasp her finally, only to touch nothing more than tingles of a shadow.

The yearning for my daughter, the desire to know her, feel her, experience her; to laugh with her, know her fears, learn her interests, marvel at her features, smell her skin before bedtime and a millions other ways we become experts on our children is insatiable. I am greedy, hungry for her and yet have been denied.

The milestones are always hard. Society has so neatly structured our children’s lives with markers that you cannot ignore them – they are everywhere. For me today, I feel an outsider looking in, a famished parent looking through the window with starved eyes onto a huge feast of crisp new school uniforms, obligatory pictures of  beaming smiles standing statue-straight against random doors in the house, tearful goodbyes (from the parents) at the school gates, new black shoes and colourful school bags brimming with promise and expectancy. I am Separate, Different.

Mum and daughter going to school

I have tried, quite successfully, until now, to push aside these thoughts of school, these comparisons of what would have been. I have learnt that to go down that road of wishing for the old life, wanting that previous trajectory to follow carefully and loving crafted plans is a bitter one and nothing but misery can come from it. I have learnt that I can devise new plans and carefully and loving throw out my heart into the future once more to see what wonderful things can come of it. I have learnt it and I live it… most of the time.

But today, today I must unflinchingly look once more at my grief. Unfold the memories and cry. Sob out loud my dismay, my hurt, my anger, my sadness, my love. Declaring that this sucks validates how I feel and by doing so I become less separate and different. By doing so I find a warm reception from others just like me, fellow mourners making our way through life, navigating the milestones, helping each other along the way. By doing so I also discover I am not alone and have ready comfort given by those close to me who have not lost a child. Their compassion and regard are just as valuable and reviving. For they lost Evelyn too. If it takes a village to raise a child, it also takes a village to remember and mourn a child.

So today is hard and my heart is heavy, my eyes are sore and my head is lowered but I will put one foot in front of the other.. for next year, next year I will be sat at the feast with Poppy and I can’t wait.

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

xx

Finding your smile again

You have taught me the beauty in the sunshine

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.

Learning to smile again
Learning to smile again

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.

Check out: Psychology Today: what’s your joy

Until next time, do what you can to find your smile again. (And now you know where I got my inspiration from for this sign-off!)

Lydia x