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

Luck, God or just random shit?

I don’t know if I believe in luck.  I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history.  I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back.  Similar to Karma in what comes around goes around.

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I still have a fondness for churches.  Here’s Hallgrimskirkja in Reykjavik, Iceland

The energy, karma and positivity mantra was the way I always lived my life.  Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.

Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck.  She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”.  Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy.  Other family members and friends prayed for her in a multitude of different faiths.

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The Priory in Cartmel a stunningly beautiful place

Her surgery was a permanent fix.  People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey.  We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.

Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her.  After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died.  When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.

We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.

Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him.  Over the years I have raised thousands for charity.  I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….

As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone.  The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her?   I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.

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We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city

I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.

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An autumnal walk in the park with colds and coughs hoping the fresh air does us good

I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist.  I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.

So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version.  If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all.  Each to their own and I think child loss survivors need to push on anyway they can.

How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?

More of a mother? 

For years I have heard close friends and family talk about how they feel like fraudulent mummies because they had caesarean sections instead of natural births.

Other friends have spoken about the pressure to have done natural child birth, without pain relief, as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.

Super mother

I felt I needed to write this blog post about the pure bullshit (yes that’s the language I’m choosing to use) of this whole belief system.  I’m someone who has now become a mother as a result of the most painful natural birth, I’ve delivered a sleeping baby early naturally and I’ve also had an elective Caesarean section too.  I can say from experience that all of these make me equally a mother and each of these experiences posed their own challenges, unique type of pain and suffering (both during and afterwards, both emotional and physical pain).

My “natural” birth was undiagnosed breach during which I had no pain relief and both myself and my daughter nearly died. Now this experience, to some women I’ve spoken to at various baby groups, is lauded as making me a “super woman” and 3 years ago in the baby class tales of who had had the worst birth experience meant I usually “won” that one hands down.

I remember one woman at a baby group proudly stating she also had a breach birth naturally and when offered a C-section instead opted for a no pain relief natural experience and said she was proud she’d done it. What utter nonsense? As someone who has experienced it and without pain relief, I can hand on heart say I really wish I hadn’t have been through it at all.

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Baby Aurora a few hours old last week

Yes it is important for women to be able to have a choice in the birth process and for them to be able to have a say in their experience but at the end of the day the priority must always be the health of mother and her baby or babies so whatever is best for the patients should be what happens. For women to then wear their “experience” as a badge of honour, that they can use to bash other mums with (as if new mums don’t already have enough to feel guilty about!) is I think total and complete bollocks.

I’ve had people say to me, that they wish they’d have had the birth experience I had, instead of the C-section they actually did have, and as someone whose physical wounds and emotional ones still haven’t healed from my original birth trauma, I’ve had to say “ermmm no you really don’t want to have experienced what I did”.

So why is a C-section seen as the easy option or the cheats way? As someone who has now also experienced a Caesarean section with my latest pregnancy (actually last week!) I can say it’s certainly not the super easy and pain free alternative that it is lauded as.   Those women I was in hospital with who had natural births are already out and about with their babies in slings, pushing them in prams and lifting car seats into their cars to take baby for a drive.  I can’t do any of that yet because of the wound that still needs to heal across my tummy and I’m limited to what I can lift, stretch to reach and physically do.  I’m also on strong painkillers for the pain following the major operation, as that is what a Caesarean section is, a major operation!  Natural childbirth might be more painful at the time of birth but post birth C-section pain and discomfort wins hands down unless you of course have complications such as tears, prolapse, piles, etc.

Women at baby groups talk about their natural birth experiences in the same way we probably chatted about hunting trips and warfare as cave people. The stories seem to become more elaborate and embellished as they are repeated with some women seeming to get pleasure from reliving all the horrendous little details wanting to out shock or out gore the person before.  There seems to be an element of competition about the whole thing trying to see who has had the worst experience.

If women talk about their experiences with such great delight then why aren’t the genuine battle scars, including C-section scars, stretch marks & saggy boobs also celebrated by society and why are women made to feel bad about them? Should they not be championed as battle scars and showcased alongside the tales of woe?

Why are some women also made to feel bad for having C-sections by men too? Some men when I was pregnant and they heard I was having a planned c section actually joked “too posh to push hey?” With even women giving each other a hard time over childbirth what hope do we have for men to then react appropriately?

Do you feel bad about your childbirth experience?  Have others made you feel guilty about it?  Have you decided to change things with any future children?

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Tiny hands

I feel we have a long way to go when discussing childbirth but it is about time we simply celebrate motherhood no matter how our babies arrived into the world and we should celebrate all types of motherhood too, including those whose babies don’t quite go or arrive as planned.   It’s important to talk about child loss too and alternative experiences.

Love

Sarah x

Somewhere after the rainbow

Everyone talks about “rainbow” pregnancies and what a blessing they are.

It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life.  We had hope for our future, as a family and truly believed the sun was shining on us again.

Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok.  We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.

Arthur scan

We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting.  That in January 2018 Violet was going to be a big sister.

Then we had the 20-week scan.  Arthur’s heart did still look ok but what didn’t look right was his brain.  The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist.  Our world crumbled.  We then had to wait over a week before we could see a specialist to get more details.

We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain?  The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.

When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan.  The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain.  His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die.  His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.

We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy.  Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear. Having to give birth to him was traumatic and extremely upsetting.  We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair.  We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.

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We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too.  In a way this makes it easier as we have constant beautiful reminders of our memories of Violet.  I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.

Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway.  Never been able to breathe or swallow unaided if he had survived to full term.  It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear.  I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.

People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again.  I’m often asked why I don’t believe in God and this is the reason why.

Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?

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We look for the next one I guess and try to keep positive.

Lots of love

Sarah x

A Mother’s Guilt

I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other and about how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?

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Their shared graveside

I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.

We never knew Arthur. Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement, if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound. Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate.  He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.

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A photo of Arthur

It’s much easier for us to remember and to talk about Violet as lots of people knew her, so there are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.

Arthur bless him doesn’t have any shared memories or friends and didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s but we’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.

This blog is full of photos of Violet and that’s great because we have lots of her and she loved having her photo taken too.   It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.

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Violet at 1 year old

I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible, and she would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?

What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?

Love, Sarah x