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

 

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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.

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

Mother’s Day – 5 things to get you through

Today is Mother’s Day, a day when the focus is rightly on us mums. A day when we hear how much we are loved and appreciated by our children, a day for smiles and lots of love. The tender moments of watching your children express their love for you is so heart-warming and priceless, but what about mummies like me where there’s someone missing?

I’m fortunate to have a second child so I still get my fix of scrummy cuddles, cute slobbery kisses and breakfast in bed – which I have to share with said child because she’s a hobbit and needs 4 breakfasts and couldn’t bear to watch me eat something in peace and by myself.

But as I sit up in bed to be presented with my lovely card and lovingly prepared food there’s a sadness that lingers, dwells in the background, mixes with the air into a bittersweet perfume. ‘There should be two little girls with me now’ float around me dripping with my tears as I smile at my family trying and succeeding to make me know how proud they are of me.

Part of me can’t let the sadness wash over me, can’t tap into the grief to let it out and ease the pressure for a bit. I want to be normal today! I want to just be happy and smothered in love today. I don’t want to be sad and angry about what life has dealt me and robbed me of… but how to I do that without pretending Evie didn’t exist or denying that however I dress it up today is hard because I have to stare in the face the fact that one of my children has died?
  1. Be kind to yourself. Take things slow today and at your own pace. If you’re loss is recent then today is going to be horrible – there’s no other way of saying it. But today will pass, you will survive it and you will get through this time. For those of us a little further down the line and who have other children then it’s a mixed one -the bittersweet joy of having someone calling you mummy and saying how much they love you but the shadow of what would have been haunts the day. Don’t criticise yourself and feel guilty for feeling happy or despair for feeling deeply sad. Try to think about how you are feeling today and think what if my best friend said these things? What would I say to comfort her? Then try to say it to yourself.
  2. Do what feels right, not what you ‘should’ do. There’s so much hype around today – expectations society, the media and marketing put on us on how this day should look. An Instagram picture-perfect Mother’s day is unobtainable for most families let alone a family that has suffered a devastating loss. The tea spills, the kids scream and fight and the beautiful Sunday lunch at local restaurant experience has only served as a powerful contraceptive to everyone else in the vicinity. There’s no ‘right’ way to celebrate being a mum; if you want to do it quietly then do it! You want to shout from the roof tops about your children – all of your children, then do it! Putting extra pressure on yourself to act/perform a certain way when you are already in an emotional place just makes today a day to dread.
  3. Express yourself. If at all possible share how you are feeling with your partner, mum, friend – anyone who is close to you. Just saying it how it is can be very freeing, especially on a day like today where there’s lots of mixed emotions. They say a problem shared is a problem halved. Well grief isn’t a ‘problem’ but it does weigh us down, so sharing it with someone does lighten the load for a while – which can’t be a bad thing. Expressing how you really feel can be very freeing – you don;t have to put that smile mask on and pretend everything’s fine when it’s not. Try and see what happens!
  4. Be in the moment. When you lose a baby you feel like you will never smile again. Never laugh, feel joy, feel ok and feel happy. And for a time that may be true but as you get more accustomed to your grief then you realise that you can feel those wonderful emotions alongside your sadness. It’s a weird balance but you get used to it bit by bit. Something that my Evie has taught me is to be in the moment. To treasure the precious times for what they are. Not letting my mind be distracted, learning to turn off the internal monologue that continually says – this is sad, why me?, why is vie not here, this is horrible, I want to be normal, this is sad, why me? – you get the point. By tuning into what’s happening right now in front of you means you can truly experience life not watch it. In a way, see it that you don’t want to waste the life you’ve been given that was denied to your baby. Revel in the moment and see what beauty comes of it.
  5. Feel the love. You are a brilliant mum!!! Feel it, let yourself feel it and let yourself be pampered and doted on for the day! If you are anything like me you spend most of your time flitting between thinking you are a horrible mum for wanting to put nail varnish on, by yourself, let it dry and it not smudge; and then thinking you are not doing a good enough job because the other day your child picked their nose, you yelled, they cried and the neighbour you were talking to slinked back to their house, eyes widening with what looked suspiciously like judgment. But you know, all of that doesn’t leave much space for thinking and feeling that – you know what?… despite it all I’m doing my best, my child is loved and that’s enough – that’s more than enough. So FEEL THE LOVE TODAY. You’ve earned it!

Until next time do what it takes to find your smile again.

Lydia

x

 

Listening is loving

 

Maybe I’ve been afraid of life and through Evie’s death I’m learning to live it.

Those who fear death, fear life

UK First Innovative new support playgroup for Bereaved Parents in jeopardy due to Children Centre Cuts in Oxfordshire

The future of an innovative new playgroup to support parents who have lost a baby at any time during pregnancy or around birth looks uncertain due to budget cuts for children’s centres. The group is the first of its kind in the UK and was set up by local woman Lydia Berry last year in David Cameron’s constituency. The group faces being shut down as the Ace Centre in Chipping Norton who host the group are threatened with closure in the wake of Oxfordshire County Council’s budget cuts to family services.

The first session of 2016 will be held at the Ace Centre in Chipping Norton, starting on Saturday 5th March. The playgroup is specifically for bereaved parents who also have children between the ages of 0 and 7. Lydia lost her first daughter Evelyn shortly after birth in 2011 and has been working with the Ace Centre to set up the much needed play session.

The idea behind the new playgroup is to recognise that when parents lose a baby, raising older, surviving or subsequent children can be a unique challenge. Parents supporting each other can be a great help because sharing from real experiences is a powerful comfort. The group also seeks to plug the substantial gap in professional support for bereaved parents around the country.

The sessions will be a safe space where parents can feel comfortable and able to talk about their loss or just watch their other children play. The aim for the group is making connections with others facing similar challenges, which can help ease the burden of caring for young children whilst grieving.

The Rainbow group sessions will be held in the main hall of the Ace Centre with plenty of toys and activities for the children to enjoy as well as healthy snacks, while parents can have a cup of tea and socialise with others in a similar situation.

Lydia said, “Losing Evelyn was the single most traumatic experience of my life and I found having my second daughter a year later a difficult adjustment. I often struggled to grieve and also be a mum to a living child. The support from others who have been through similar experiences has been a lifeline so I’m really excited to start the second year of these special play sessions. I want to thank the Ace Centre for giving me such great support and facilitating this support playgroup. They have encouraged me to speak out on behalf of bereaved parents, giving me the confidence to help others in need of a kind ear. It is a travesty that they face an uncertain future due to short-sighted cuts to services in the community.’

Helen Ruff, Head of the Ace Centre said, “We are happy to be hosting the support playgroup as we think this meets a real need in our area for those who face the tough challenge of parenting while coming to terms with terrible loss. We believe bereaved parents are often a silent group in the community, as they must carry on functioning for their other children while grieving in private. We are thrilled that the idea was suggested by one of the mums who regularly uses our facilities.”

The new playgroup will be held on select dates throughout the year: 10.30 – 12.30 on Saturday 5th March, 30th April, 4th June, 6th August, 24th Sept, 19st Nov 2016.

For more information contact Lydia Berry: oxfordshirerainbows@gmail.com

Ace Centre – http://www.ace-chippingnorton.co.uk/family-centre/

If your child is over 7 and you wish to attend please contact Lydia.