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.

We’ve got a baby, now what?

My secret mantra throughout my second pregnancy was, ‘If we get a baby, then…’, but I never thought about what I would do if we did actually get a baby here safe and sound.

We’ve just celebrated our third Christmas with our darling second daughter Poppy and it was magical. She got to grips with the idea of leaving food and drink out for Father Christmas and the reindeer; in the morning delighted to see  the remnants of the pit-stop snack, hastily gobbled by the famished St Nick on his toy round – he has a busy night mummy, she expertly explained. She also had her first stab at a Christmas list, which was not so successful and probably due to me not prepping her properly on what you ask for. She adamantly asked for a pretend biscuit and pretend statue …what goes on in their little minds?! Needless to say we didn’t bring up the Christmas list much, in the hope that we would not be required to purchased these mystical items, and luckily she’s clearly a little too young to grasp the significance of the said list.

However, our biggest anticipated highlight was the Christmas-Morning-Wake-Up. We had spent ages explaining to her how it all works, you know – that the big FC would bring a stocking and leave it at the end of her bed. In the morning, probably early, she would wake to hear the crinkle of presents in the stocking, rustling as she stretched out her foot towards the end of the bed. She would be overcome with excitement that HE had been, grab the stocking and rush into mummy and daddy’s bedroom. Waking us up with excited cries of I wonder what’s inside? , we would then bring her into our bed and she would open the lovely presents. A wonderful picture postcard day of Christmas family gorgeousness would then ensue.

So… the reality is we wake up before her at 8am and we lay there in anticipation of the gasp and thud of feet. Instead, she wonders in around 8:10am … so has Father Christmas been?  Poppy says no I don’t think he’s been yet. Masking the panic in his voice daddy tries to solve the mystery of the missing stocking by taking Poppy back into her room to discover it, in plain sight, on the end of her bed, untouched and unnoticed by Poppy who is still fervently insisting he hasn’t been yet!

No doubt though, this year, being 2 days shy of her 4th birthday, she will understand it all, in much more dedicated detail; carefully crafting the definitive present list and waking at stupid-o-clock, unable to stay asleep any longer for the excitement of the day.

Snow picture!
Snow patrol!

It’s these precious memory-making moments and hilarity of everyday life with a child that make it all worth it. The hope I would one day have these delicate and private times of family life that I share with my husband kept me going when the fear of losing another baby threatened to overwhelm me. It’s not grand or glamorous, it’s not harmonious or straightforward but it’s real life – Poppy’s life – that I get to share it and being her mummy: her guide to this life, is amazing.

And when I say amazing, as a bereaved parent, I mean every. single. syllable. I’m constantly aware of how lucky I am to have Poppy at all and that my life can be richer because of her presence. But do you know what? it makes me fearful too – it makes me wince when I think about getting what I planned when it comes to having children. It’s scary to want something, someone so badly, when you have done that already and they have died, the chance of that happiness snatched away so cruelly. It makes you fearful to be that hopeful, to plan, to dare to want a family with a certain number of children (always knowing there’s one more unseen).

I remember clearly that first night with Poppy. I was physically exhausted from having a c-section (major abdominal surgery is no picnic!) and mentally fried from the relief that we had faced our fear and gone through another birth but this time safely. I was shell-shocked, laying there next to this most welcome arrival, wishing with every fibre of my being: please don’t want anything from me and bless her she didn’t, she just stared at her fragile mummy and then slept.

I was a wreak, not being able to process the enormity of what we had achieved – the safe gestation and delivery of our second daughter, but also the fact that now I really was a mummy to a living baby who needed me. Those first few hours, days, weeks and months were such a vulnerable time for me. Veins coursing with hormones, body recovering from major surgery and a difficult pregnancy, sleep deprivation, desperately attempting to breastfeed were overwhelming to my senses. I felt the heavy burden of Poppy’s well-being resting on my shoulders, feeling like I had to pump her heart with my hand to keep her from dying too, to keep her here with me, in the physical world.

I confess I hate to think of the fragility of her and me in that time. I felt so excruciatingly vulnerable and ill-equipped. For someone like me who prides herself on being in control and knowledgable, it was a difficult time of having the most precious person in the world to look after but no manual. If I’m honest the experience and manner of Evelyn’s death had ripped my self-esteem to shreds and so I believed listening to my ‘motherly’ instincts was unreliable. Looking back now I imagine many first time mums feel as I did and that it wasn’t particular to me to find the first months of parenthood fraught, stressful and to be endured.

For me, one of the profound and long lasting effects of this experience of loosing Evie and then having Poppy soon afterwards, is that it’s rather put me off the whole baby thing. Now this, I realise is sacrilege! How can I say it’s put me off? The one thing I wanted in this world, was taken from me and then given, the gift I have that I can even have babies when others can’t and I’m saying I’m not sure about having any more. Well I’m probably just being really selfish but if I’m really honest it feels like babies are my cryptonite. I am crippled when they come near but am drawn to them in equal measure.

Babies are my cryptonite

Despite my darker moments when first having Poppy, I enjoyed my maternity leave immensely, really trying to live in the moment and soak up every morsel of my little darling. But even now the thought of going through another difficult pregnancy like Poppy’s or the risk of something happening to the baby, feels like to high a price to pay right now. I feel like I’m re-building my life after Armageddon and I don’t like the thought of another air raid bombing everything I fought so hard to repair. But really I suppose all I’m saying is: I’m afraid. I’m afraid to love someone again so much that I couldn’t bear to lose them, I’m afraid to put myself in what felt like a very compromised position of leaving the fate of my unborn baby to fate/destiny/insert appropriate deity here. I’m afraid to claim happiness, exquisite happiness of another child because the more you have the more you have to lose. I’m sure I will feel stronger in time to face this fear and claim my stake of joy, just watch me…I’ll get there.

The path bereaved parents must tread is a balance between hope and fear, sanity and off-the-scale anxiety. You have to learn to live again in a risky world with the right amount of fear that still allows you to live, not just survive, and be fulfilled – not an easy task.

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

x