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.

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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

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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.

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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

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