Grief is like being Ship wrecked

This time of year we find a little tricky because this is the week our baby Arthur was due to be born, and although we marked his official first birthday and day he died in September, I still feel a little tug that says we should be having a first birthday party for him in early January.

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Our little boy Arthur

Grieving for Arthur I find harder and more complicated than I do for Violet as the situation is much more complex:

  • We never knew Arthur not properly. Yes I felt him move and kick inside me (a lot) but we never got to met him alive.
  • We were the ones who decided to end his life prematurely based on medical facts and delivered him early sleeping. The hardest decision we’ve ever made.
  • The bittersweet this is that if we hadn’t decided to lose Arthur when we did then we wouldn’t have had Aurora and she wouldn’t be here today. So that is hard to swallow – how can you feel sad about someone who led to the creation of someone else?

Anyway I saw my counselor this week and she said we should thank Arthur for giving us Aurora so tonight we will toast our little boy.  She also passed me a really lovely article that was taken from a guy called GSnow’s Reddit account.  Some of the original isn’t really relevant to child loss so I have edited it somewhat and also added some of my own words but you can read the full piece he wrote here.

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The Bay of Kotor

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating for me luckily it was my husband and we clung to each other. Some of my family and friends also floated nearby providing sustenance for us to carry on. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, seeing another young family similar to yours on the street, the sound of a baby crying. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or a family gathering. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Occasionally the wave can come from no where and totally overwhelm you but again you rise up, gasp and breathe again.

The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.”

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Sunset over Auckland

I started to write and plan this article before I read the sad news today about local BBC newsreader Dianne Oxberry who sadly passed away.  I have lots of friends who were her friends and everyone who met her spoke fondly of her, so this article is dedicated to her friends and family.  May you ride the storm of grief and find some lovely memories from the beautiful ship to cling to.  If you know those close to her please help them to stay afloat.  Do this through kindness and compassion.

Big love and hugs, Sarah x

 

New Year learning and growth

Starting a New Year can give people much needed motivation to make changes in their lives and lots of people look to make resolutions for what they will do differently this year.  This “new start” can be extra stressful and upsetting for those who have experienced child loss or indeed perhaps the loss of a different close loved one too.

The New Year marks another milestone in your personal journey of loss.  Another year without them.  Another year where you are a year older but they won’t age at all.  Another year where you won’t hear them laugh, celebrate a birthday or just hold them again.  Our loved ones are frozen in time and the changing year reminds us that the rest of the world is moving on without them.

The last 2 New Year’s were extremely difficult for us as the one thing we wanted to be able to change – to bring our children back – we just couldn’t do.  The year before that we also found difficult in a different way because that was the year I nearly died in childbirth and Violet had open-heart surgery at the time we thought that was our toughest year but we had no idea what was to come!

How can you possibly have New Year’s resolutions when the one thing you want to change you simply can’t change or control ever?  Instead I learnt to focus on looking at what I had learned in the past year and what if anything I could grow from.  Was there anything positive I could build upon and develop for the following year?  It really helped me to recognise the negative and bad things but also to then try to move away from them to focus on the good.  To build on those instead.

So here in public for the first time are the things I have learnt from the last 3 years forgive the brevity with summaries as otherwise it’d be a novel…

2015 – Key experiences were getting married, father-in-law dying suddenly, difficult child-birth (both nearly died, spent weeks in hospital & Violet had open heart surgery to save her at 4 days old)

Me & Violet at Alder Hey
Violet in Alder Hey awaiting heart surgery at 2 days old

What I learnt…

  • Sometimes positive thinking can help to get you through.
  • Small can be very mighty indeed.
  • Science is amazing.
  • Even the cleverest most experienced people make mistakes.
  • Always trust your instincts.
  • Children’s heart surgeons really can be miracle workers and are near to God’s. I worship one called Mr Prem and still do.
  • Alder Hey hospital is amazing.
  • Ronald McDonald house charity is amazing.
  • I am very lucky to have such a close family – brother and sister the best in the world
  • My mum is a legend.
  • I made the right decision marrying my soul mate who turned out to be the best father and husband ever.
  • I have fantastic friends.

2016- Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.

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Violet watching the Snoopy film on Singapore Airlines on way back from Bali

What I learnt…

  • Always give back to those who have helped you – we raised £1,000 for Ronald McDonald at our wedding reception.
  • Travelling with a baby is amazing everyone should do it, although only visit places where you can drink the tap water until your child is old enough to know not to swallow water in showers or bath.
  • Your life can change in a heartbeat.
  • I would willingly give my life to save my child but I wasn’t given that choice.
  • There’s nothing more precious than family.
  • Sometimes doctors & specialists don’t have all the answers
  • All the positive thinking and prayers in the world sometimes can’t help you.
  • You only know your true friends when your world ends.
  • Child loss is a pain like nothing else.
  • You think you knew pain and misery before but you were wrong oh so very wrong.
  • My husband is the most amazing person in the world.
  • Focusing on helping others can help you to relieve your own pain.
  • Setting up fundraising can help you to try to take back some kind of control.
  • Knowledge really is power. It’s very hard not knowing all the answers or information or why’s
  • Some friends go out of their way to support you they are worth their weight in gold & others crumble by the wayside.
  • Family is everything.
  • Time is the most valuable commodity there is so make the most of every day.
  • Love never dies

2017 – Key experiences were a rainbow pregnancy, loss of our son through TMR, being told I probably have a genetic defect; having a hole in my heart diagnosed & then a second surprise rainbow pregnancy at the end of the year.

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Arthur

What I learnt…

  • You should value your health more than anything.
  • Never count your chickens before they’ve hatched or celebrate your baby before it is born.
  • Hope can come in many forms.
  • Child Bereavement UK are amazing.
  • Rainbows can reappear as fast as they disappear.
  • A dog can bring you so much joy and unconditional love when you really need it.
  • Child loss changes you as a person and that change is a permanent one for better or worse.
  • The old me died and was buried with my daughter in September 2016 no amount of trying will bring her back.
  • You have to put loved ones before everything else but not before your own health.
  • Kindness is everything.
  • Just because a baby is small doesn’t make it any easier to birth.
  • Saying goodbye to a baby you never really knew and that gave you so much hope for the future is very hard.  Choosing to say goodbye early is even harder.
  • Distractions are invaluable.
  • Sometimes you can’t understand or fight genetics
  • You can try hard to plan things but often nature finds a way to surprise you
  • Pregnancy is stressful but even more so when you’ve experienced child loss
  • You are not alone others out there have experienced the same thing
  • Always stand up for those who are unable to fight.
  • Always do the right thing for you and other people even if it is the hardest choice

2018 – Key experiences were a successful rainbow pregnancy, finally answers in inquest from the coroner about Violet’s death, birth of our third child a baby girl, a house renovation/extension, the first Violet ball for charity & my Nan passing.

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Me and a tiny Aurora

What I learnt…

  • Seize control of what you can control and smile and breathe with those things you can’t.
  • If you feel part of your life is uncontrollable then begin a new project or task you can control.
  • What will be will be
  • Go with the flow those hippies knew something
  • Tommy’s baby charity is amazing.
  • Stand up and fight for those who cannot
  • Sometimes the best decision isn’t the easiest
  • Helping to advise and support others who are also suffering in a similar way can help yourself too
  • Sharing is caring
  • Sometimes there are no answers or explanations as to why
  • Sometimes all you need as a listening ear and some chocolate
  • Caesarean sections aren’t the easy childbirth option but it was the best option for me
  • Breast isn’t always best when your baby has other ideas. Alive and feeding is best no matter how they are fed.
  • Being a mum of three when you only have one child to hold and nurse is hard.
  • Tiredness has a whole new meaning when you’re the mum of a new-born and have experienced child loss too
  • Being a new mum is difficult. Being a new mum who has watched her first child die and had to feel her second one die inside her is near impossible stress wise but at least I finally have a child who is alive and healthy
  • To live a long, happy, healthy life is the best we can ask for. I hope I’m as lucky as my Nan who was in her nineties.

You can see here clearly that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year.  There is something constructive that comes from the most upsetting and distressing of situations if you really look closely.  Remember and recognise what an achievement it is to be a survivor and what you have been through.

It is also possible to squeeze out a tiny bit of happiness from it all too.  As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.”  So flick that switch or light that flame even if it is on a very tiny candle your baby or babies will thank you.

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Light that flame

If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing”.

Love Sarah x

Baby Loss Awareness Week

Some of you who read this blog, know me or just follow me on social media may be aware that my daughter Violet died at the end of September but what you might not realise is that her funeral coincided with baby loss awareness week 2016.  The second anniversary of that is today.

At the start of this week in 2016 we got the news that the coroner was releasing her body so we had to finalise things with the funeral directors and to make arrangements for her funeral, including making decisions like cremation or burial. We decided to bury her because I couldn’t face the idea of my baby being burned. Crazy I know as she was dead already but I still felt as though I was protecting her little body by burying her instead. Then we had to decide where to bury her and to pick a plot.

We decided on southern cemetery as it was close to where we live and there are lots of important and respected people resting there, so I know it seems ridiculous but I felt as though she’d be in good company alongside Elizabeth Gaskell and Anthony Wilson – if it’s good enough for them then….  I remember us visiting Southern Cemetery and one of their team taking us to show us the baby section of the cemetery. They explained there was only one of these tiny plots left beside the road going through the cemetery. It was a small plot surrounded by other little baby graves and next to it was a communal baby grave shared by many that must have had them all stacked on top of each other as though they were on a supermarket shelf. It made me feel ill and I decided over my own dead body would she be buried here. I asked the cemetery man was there not anywhere else and he said we could have a family burial plot but that would be more expensive. I said “fine she’s not being buried at the side of a road even if I need to put it onto a credit card” and I asked him to show us what they had available. He showed us several plots and one was under a big cherry tree that was opposite the grave of Kirsty Howard, the amazing girl who was so brave and raised so much money for Francis House. I said that one would do. None of the plots were acceptable or perfect because my baby being dead wasn’t acceptable. Our final choice was simply the least offensive and I strangely felt comforted knowing that Kirsty would be her neighbour so hoped being kind and compassionate that she would look after my little girl.

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Violet’s grave

In the middle of Baby Loss Awareness week 2016 I wrote Violet’s eulogy.  I wanted to ensure her send off did her memory justice and that everyone would know exactly who she was and would understand why we loved her as much as we did.  We selected her favourite songs for her funeral, a close friend agreed to give the service for us and we thought about what she would like. I know she was only 15 months old but she had very strong opinions and preferences on things. She loved balloons so we asked everyone to bring a balloon to her service and, as she liked to make people smile, we arranged for all the balloons to be collected then taken to the children’s hospital and her nursery.  We set up her fund in this week too for Alder Hey hospital’s cardiac surgery fund and asked people to donate to it.

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A photo my brother took behind him in the chapel at Violet’s service.  So many people cared & some were stood outside

The day of her funeral, the 14thOctober, was the penultimate day of baby loss week 2016. I remember it was a crisp autumn day with blue skies and sunshine, even though there had been bad weather forecast we only had high winds that day. I went through the day in a bit of a trance almost as though I was an outsider looking in and I carried the angel bear that I had been sent the day before. I cuddled and sobbed into the bear throughout the service. The bear was a gift from an amazing little charity called Heart to Heart UK that also gifts bravery bears to children undergoing heart surgery.  Their gift really helped me.

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My angel bear

The day after Violet’s funeral was the last day of baby loss awareness week and all around the world people lit candles at 7pm creating a wave of light in memory of all the babies lost. We lit a candle in our empty quiet house full of sympathy flowers and cards then we cried some more and had a drink.

I decided to write about our week in 2016 because sometimes you don’t think about what parents have to go through logistically just after their baby dies. You almost forget that they have to make important decisions during this most horrendous time.  Decisions about choosing a funeral director and whether to bury or cremate? What to do for a service? Whether to ask people to donate to charity and if so which one? All these things would be difficult enough if your child hadn’t just died but they have. The world as you know it has just ended. The most important person in your world has gone and you have to make these decisions.

So please join in with celebrating the end of child loss awareness week by lighting a candle at 7pm on Monday to join the wave of light but also have a drink with us as we mark the end of the anniversary of probably one of the most difficult weeks of our lives.

 

Thinking of our lost babies Violet and Arthur this week but about our darling daughter today.  The day we laid her to rest with music, balloons and colour just how she would have wanted.

Love

Sarah x

 

 

I used to love September

This is now the worst month for me.

It never used to be this way. I used to love September. It was always one of my favourite months.

The starting back at school with a new year of classes. I was such a geek I couldn’t wait. New pencil cases, stationary, new uniform and shiny new shoes always excited me.

Then there was the turning of the leaves and the beautiful autumnal colours. The amazing sunsets as the weather starts to cool. The wearing of cosy clothes – knee length boots, fleeces, jeans, jumpers & fluffy socks. Open fires, comfort food, hot toddies and bubble baths. Watching the rain from inside a warm house and listening to the wind whistle round the chimney.

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Autumn sunset in Manchester city centre on border of Salford

In the last ten years I’ve enjoyed spending time in Cyprus where it’s like a second spring with all flowers having another annual bloom so colourful and cheerful.

However all of this changed in September 2016 when my precious daughter died and in the following September my son Arthur was born sleeping too.

All of a sudden the changing colours of the autumnal leaves began to represent death to me. The darker nights and chilly weather no longer cosy but depressing and miserable. The pouring rain represents the tears I now shed at this time of year and the wind howls in pain for my lost babies.

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Autumn colours in Chorlton

 

I can’t face visiting my cheerful uplifting place either in the Cypriot sunshine with colourful flowers and amazing views as last time I was there I was with my daughter, but maybe I will visit again in the next few years.

This year in order to attempt to focus on something else, something much more positive, I decided to organise the Violet ball in memory of my beautiful daughter on 29th September, a few days after the second anniversary of her death, to raise money for Alder Hey hospital’s cardiac surgery fund. I hope those of you who are able to join us do so and that we all see the month of sad September out with a bang.

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Click here for details of ball.

Thanks for reading x

Violet’s third birthday

Last week was a hard week for us as it was our daughter’s third birthday and along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.

Violet at Alder Hey
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.

This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital in Liverpool. In Liverpool she had open-heart surgery at just 4 days old.  We had to sign a million legal forms and contracts saying we knew the odds were stacked against her.  That we knew she might not survive and return alive from the operating theatre.   And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”.  We also knew her chance of survival without the operation was nil and she was only alive because of the additional hormones and support she was being given.

I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit, as we didn’t want her to be alone without at least one of us.  I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could be discharged to head over to Liverpool I was.

Me & Violet at Alder Hey
The second time I held her just before her heart operation

The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital.  We chatted about all the different people she would meet, describing friends and family members to her in detail.  We spoke about all the places we would take her to including New Zealand to see her Uncle Tom, Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon.  We chatted about her Grandma and Nanna.  Said she would learn to swim.  We basically described to her then the life she ended up having crammed into a 15-month period.  I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!

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Violet in Cyprus in April 2016

When they took her down to the operating theatre I couldn’t watch, as I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing.  Her brave daddy on the other hand walked her down to the operating theatre, talking calming to her the whole time reassuring her, reminding her how much she was loved and how strong she was, that she could do this.

Violet & daddy in Alder Hey
The bond between father & daughter was strong from day one

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call and finally received it saying she was out and still alive! We were so relieved and our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her.  We thought oh no this is where we get told something bad has happened but we were told the opposite that the surgeon thought it was an 100% success and she wouldn’t need any other operations on that part of her heart again ever.  You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix.   This is the reason we are fundraising in her name for Alder Hey so superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.

Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.

The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it by buying her gifts, cards and organizing a birthday party for her.  Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.

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Here she’s opening first birthday presents & getting excited about bows!

This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old.  Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets, and then on her birthday we distributed them all around the area where we live.  Including taking some to her nursery, leaving some on the benches near the playgrounds in the local parks where she loved the swings, left some near the mural on Beech Road that has a violet coloured balloon in her memory, some elsewhere on Beech Road near to where she attended Babel Baby classes and we placed some on benches in the cemetery close to her grave after we took her birthday balloons.

The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.

Thanks for reading

Love

Sarah xx

Anniversaries of loss

Anniversaries after loss are always really hard for all those family & friends who were close to the loved one.

Talking from experience it really does help when others remember our cherished one on this day and when they commemorate their memory in some way, it reassures us that their legacy will live on.

Bee mural

Our worst fear is that our much loved child, brother, sister, mum, dad, family member or friend is forgotten so today take the time, observe the silence at 2.30pm today, light a candle, say a prayer or just give a thought to all those who lost their lives in the Manchester bomb last year and know by doing that you are fulfilling the wish of their families and friends in that they are not forgotten.

We will not forget them. Bee strong everyone. 💜🐝

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