All about May

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The other day I realised that I have spent the last five May’s with one of my baby’s. I have either been pregnant (for 3 of them including my 40th birthday) and the second one I was organising my first baby girl’s first birthday party. This was the first May bank holiday for 3 years that I have been able to have a glass of vino and weirdly enough I am thinking about a second daughter’s first birthday party (this time in July rather than June).

May 2018

Last year in 2018 we were living in the middle of a building site, I was heavily pregnant and we were going through a very hot summer. I spent most of it in the shade with an electric fan and my feet in cold water.

The building site I was living in last May whilst heavily pregnant

May 2017

The year before that, 2017, I was in the very early stages of pregnancy with Arthur and suffered tummy upsets for a fair few months. It was also my 40th birthday so my hubby threw me a bbq party where we disguised appletiser as Prosecco, as we hadn’t announced our news to anyone.  Despite my tummy upsets, we had hope for the future and it ended up being the only May I would spend with my little boy. Our slither of hope was smashed when September rolled around and we had to say goodbye to Arthur (read about it here).

My gorgeous niece and one of my best friends at my birthday BBQ 2017

May 2016

May 2016 was one of my happiest times as Violet was doing well and was nearly a year old. She was about to be a flower girl at my cousins wedding and she’d gotten a princess dress that she loved. We were planning her birthday party that was a joint belated wedding reception too. We made so many very happy memories that summer before the horrendous September came along.  I was lucky enough to spend two May’s with Violet.

Violet at her first birthday party. She loved balloons! www.violet-skies.com
Violet at her first birthday party that was also our belated wedding reception with her friend Abby. She loved balloons! www.violet-skies.com

May 2015

May 2015 I remember being heavily pregnant with Violet having so much hope for the future. Despite getting negative news about Violet’s heart we were convinced we were in the right specialist hands and thinking positively we told ourselves everything would be ok. Violet survived in 2015, and that was the main thing, all thanks to Alder hey children’s hospital.  I remember it rained a lot in May but then we had hot weather as soon as I went into hospital in the June typical!

Not about Theresa May

Anyway I just wanted to write an article that wasn’t about the other May and one that highlights how vastly different one year can be from another. I would like for those of you struggling to get pregnant or to get a rainbow or just to cope with grief to recognise how different one year can be from the last.  I hope it gives some strength and encourages people to remember happier times too.  Keep your face always toward the sunshine and the shadows will fall behind you.

Violet's always bloom in May so pretty these are in our back garden
Violet’s always bloom in May so pretty these are in our back garden

Not all May’s are bad.

Big love

Sarah x

Always Violet Skies

You might be interested in these blog posts too –

When you get your rainbow what then?

Mothering after loss

Making over Motherhood

Meeting an old friend

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Like most people I love bumping into people I haven’t seen for a while.  Someone I used to speak to or deal with all the time perhaps through work or a project and who has simply drifted away.  Now in these modern times, thanks to social media, quite a lot of these people are still kept up to date on the happenings in my life. They are aware of the sadness of recent times, however there are occasionally still a few that slip through the net.

Catch up

I met up with someone recently who I hadn’t seen for 5 years and initially I was so pleased to have ran into them, eagerly accepting the offer of a coffee in a nearby café.  Then as I waited for them to get served with our brews my heart sank, as I realized the conversation I was about to have with them. I could forecast the surprised look then sadness before there would be pity and sorrow for my loss.  Yes they would be sympathetic and the usual comments of “I’m so sorry” and “how have you coped” would be expressed.  They would mention their kids and how they couldn’t imagine the pain of ever losing them. Then our entire conversation would take a different turn.

He brought the coffee and tea back.

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I secretly challenged myself to see how long I could last before I would have to deliver the bad news to him. I asked him lots of questions, first about what had happened in the past 5 years in his life. He told me about his children growing up and how they were doing at school. About their different personalities with so much joy and passion proud of the people they were becoming.

My story

Then he asked “what about me” and I told him first about the happy things; our house, getting married, travelling the world and our three children. About Violet, Arthur and Aurora, then about the loss of two of them. I finished on a happy note talking about Violet’s fund, Aurora and our hope for the future.

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Me and Aurora upset as she had to have her coat on.

I’m now adept at delivering the proverbial sandwich with the shitty grief filling in the middle.

Avoidance

It’s very easy for me to simply avoid catching up with people and avoid setting dates to meet up for fear that I’ll have to have the awkward conversation about what has happened in my life.   Don’t get me wrong I’m getting better at delivering it now but somedays it is still very hard for me having to relive it over again along with the associated emotion.

I hate being thought of as “that girl” and “oh poor Sarah” as that’s certainly not me.  My loss doesn’t define me as a person.  Yes it may have shaped me into the person I am today and yes I feel the affects of that change every second of every minute but I’m still me.

I just wish I could hand that old friend an overview of what’s happened instead and say “here’s an update on me please read it and then we will grab a coffee to catch up”.  That way I don’t have to relive anything repeating myself and having to observe their reactions too.  It’s a little weird though and cold I guess so not me.

What do you think?  How would you tell people if you were me?

All suggestions welcome!

Love

Sarah x

Always Violet Skies

You might find these blog posts interesting –

Lonely

When you finally get your rainbow what then?

Making over Motherhood

Tommy’s Angels

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A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change.  We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.

The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.

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Tommy’s Afternoon tea party for 2018 Rainbow Babies

About Tommy’s

For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages.  The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.

Leonardo Di Vinci

This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing.  I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too.  He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.

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Leonardo’s study of human anatomy and specifically the circulatory system

Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s.  What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.

Our experience

Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans.  They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.

All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time.  I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news.  Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death.  So to say I was skeptical about what “experts” told me was an understatement but you know what?  The Tommy’s experts or as I like to call them Angels were right!

Afternoon tea

So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh.  The last time they had seen her she was on a black and white screen during ultra sound scans.  It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.

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Aurora with one of our “Tommy’s Angels”

Tommy’s is a charity

Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.

Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead.  Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?

Also make sure you visit the Leonardo Da Vinci exhibition more details click here.

Love

Sarah xx

Always Violet Skies

You might enjoy these other blog posts –
Somewhere after the rainbow – what happens if you lose your rainbow?

The challenge of a rainbow pregnancy

When Mother Nature has other ideas

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For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up).  Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.

Snow

My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west. It meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.

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Wednesday morning 6am

Frustration

Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.

Other “Mother Nature” surprises

Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed, thanks to medical science, then only to die from an extremely rare lung disease.  Then I am diagnosed with a heart disorder too, that it seems I was born with.

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Violet’s butterfly in our garden reflecting the warm lighting from inside the house

My second baby was given the all clear as healthy at his 16 week scan. Then we were told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR.  During both of these births medical procedures went wrong and I nearly died.   Then I was told the issues both babies had were probably genetic and inherited from me. After tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).

Not all bad surprises

Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur. This time it went smoothly producing the beautiful Aurora.  Perhaps she felt she owed me one!

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Aurora watching the snow – her first.

So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock on the one day I really wanted to be able to see a consultant shocked me at all.  I should be getting used to this by now.

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Our neighbours snow covered garden so pretty

Ride the Wave

I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up.  It really is like the shipwreck analogy of grief. I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again.  Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!

All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.

I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.

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Good job the snow is so pretty.  Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature.  Keep warm.

Big love

Sarah x

Always Violet Skies

You might be interested in the following posts too –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

Blue Monday?  I have a blue kitchen…

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There’s been lots of talk this week about people having a “blue Monday” or a “blue week” as apparently people are skint from Christmas/New Year/Sale shopping and have fallen off the wagon when it comes to New Year’s resolutions.  Well if those are your major problems in life to be upset over well boo f*cking hoo or at least that’s what I want to say to people.

Of course I don’t wish to belittle anyone who is genuinely suffering from depression, as it is an awful illness but those people who are sad because of minor issues like the weather I just want to grab and violently shake.

Feeling blue everyday

I wake up and every day is a blue Monday, as the first thing I think of when I open my eyes in the morning, like most parents, is my children.  I’m then slapped in the face by reality and the fact only one of them is alive.  My little girl Aurora makes me smile despite the blue start and proves there is always a little sunshine in the darkness if you focus on the light no matter how hard that can be.   I’m so used to feeling “blue” that it has become just another part of me.

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The face that makes me smile every morning

Dark abyss

On the positive side because of this sadness within me other things going wrong seem to just be absorbed into the same abyss that’s already there, so I don’t feel anymore sad but exactly the same as I did before.  For example our washing machine just gave up the ghost and a few years ago it’d have meant maximum stress about the cost but we simply ordered a new one on our credit card, to be paid for later all sorted.  Minimum drama and less fuss as my mum says “don’t sweat the small stuff”.

So to those of you who think you have issues this week then….

Gained weight

You’ve put on a few pounds since Christmas and the diet you started on the 1stJanuary you’ve given up on already, so now you’re depressed.  Think yourself lucky at least you’re not living on the streets homeless and hungry.  At least you’re healthy too and not in hospital battling some horrendous disease or sat beside a loved one who is.

The weather

The weather is a bit grey and miserable so it’s making you feel down.  Well you do live in the UK and it is winter so get over it or look to emigrate.  Change your situation. Remember also that grey and miserable can be pretty too just change your perspective and wear bright colours to compensate.

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Look for the sunshine through the grey clouds

Skint after Christmas

So you spent too much money over Christmas and New Year so you feel a little down.  Why not start a side line business connected to a hobby or dig out some things you don’t want any more and sell them?  Basically stop moping and get moving.  Do something about it and change things.  You have the power!  (Now I sound like He-man I do apologise)  Websites like Ebay have always been popular but also look at selling things through sites and apps such as Depop and Facebook marketplace.  If you’re really struggling then get advice from the Citizens advice bureau they can give impartial advice on debt and other issues.

Put your money to better use

Given up on whatever New Year’s resolutions you started?  If they involved spending money on gym membership, then cancel it and donate the cash to charity, think of the actual good you can do with it instead. The time you’d have spent in the gym you can spend volunteering at a homeless shelter, local dogs home (that’d be great free exercise!) or visiting elderly people? Think of the good you can do for others instead of focussing inwards on how bad you feel personally. Stop being selfish and think of other people instead.  I can honestly tell you that you will start to feel much much better just try it!

You can easily find volunteering opportunities in your community via sites like the Do it Trust

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Grey can sometimes be quite beautiful even in winter

Chin up; keep going and soon it’ll be springtime.

Big love,

Sarah x

Always Violet Skies

You might be interested in the following posts too –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

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

Why is grief harder for a TFMR?

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?

Thank you Arthur

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

Grief is like being Ship wrecked

“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.

At the start

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.

Eventually…

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

Dianne Oxberry

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

Always Violet Skies

You might enjoy these blog posts –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

A broken heart

All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?

For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.

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My discovery

I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.

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Of course I have a broken heart

I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.

He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.

Exhaustion

Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job.  Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.

Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?

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Meh

It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.

The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.

What are you wishing for this Christmas?

Love Sarah xx

Always Violet Skies

You might enjoy reading these posts too –

A literal broken heart

Motherhood after loss

Making over motherhood

When you finally get your rainbow baby what then…

Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end”  Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?

When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.

Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child, when you have a new one you don’t throw your old one away and forget about them do you? Or you shouldn’t.  If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?

I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.

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I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.

Autumn photoshoot - Ian Scott Photography
Credit ianscottphotography.co.uk

I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.

The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler.  That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?

Family photoshoot - Manchester Photography courses
Family photoshoot – credit Manchester Photography courses

I wonder what Violet would have been like today and what she’d have thought of her baby sister?  Do you ever wonder what if?  I do every moment of every day.

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

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?