Control freak

These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.

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A beautiful cloudy Violet sunset over our house last night

Lack of control

I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).

The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.

Poorly child

When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.

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Violet in hospital the day she later died suddenly

Regaining control on life

I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.

Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.

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Photo of our house during the renovation with Dexter our GSD in shot too

More of a control freak

Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.

My advice is to try to do other things you can control to try to balance out those things that you simply can’t.

Big hugs and lots of love

Sarah

Always Violet Skies xx

You might be interested in reading these other posts –

When you finally get your rainbow what then

Four years a mother

Surviving after child loss?

Back to school – Why this time of year irritates me?

In early September when kids start or go back to school it’s not so much the hundreds of photos of them lined up in front of either a front door or a fireplace that irritates me but more the stupid comment(s) that accompany them. So to save me from adding a passive aggressive and brutally honest blunt comment in reply to some of these posts I decided instead to write this, so hopefully if you care you will read this and think before you write that irritating social media post.

My aunty Jenny’s gorgeous front door – without a child in a school uniform

Here are those comments

“I wish he or she would stop growing” errr no you don’t because that would mean they would die and then be dead like my daughter who remains 15 months forever.

“Oh they’re growing too fast” at least they are growing there are lots of parents out there whose babies are sick and not growing fast enough. Be thankful you’re not them and don’t insult these parents by complaining when your child is healthy and thriving.

“Oh I wish they would stay as babies forever” errr no you don’t see my earlier comment above. Would you like it if they died then they would always be a baby?

“I miss when they were little” that’s why taking photos is so important but be thankful you don’t just miss them because they are no longer with you.

My fireplace without a child in a school uniform in front of it – “Back to school”

“It’s all going too fast.” You know what life tends to go fast when you’re enjoying and/or loving things. Try sitting in a hospital chair next to a sick child and your days seem to drag on and on. Or heavens forbid sit next to their grave. There are lots of parents sat in hospital with their school age child who is too sick to attend school and I can tell you their days just drag on. They would give anything to be doing a school drop off instead and waving goodbye to a child at the school gate rather than in an isolation ward as they nip to the loo.

“I wish time would stop” no you don’t because then you would be dead. Do you want your child or family to grow up without you? Think how extremely lucky you are to be alive now and living in the reality you have. Embrace every second and live in the present not the future because you certainly don’t want to be living in the past or to only be alive in someone else’s past.

Share those photos

So folks if you feel the need to share photos of your little darlings in their school uniforms to celebrate that they are growing, healthy and happy. To thank the universe that they were born to you in a country with free healthcare and education, so they can actually go to school then great share away. But please out of respect to those of us not in as privileged a position as you don’t wish for your children to stop growing, for time to stop or say that you are upset they are going to school. Be happy and be grateful. Appreciate the now and embrace the moment because you are right about one thing it isn’t happening again. Relish the time and moments. Take the photos, make the memories and remember to feel happy not sad. Embrace this exciting new chapter in you and your child’s life – hopefully there will be many more yet to come too.

A front door without a child in a school uniform – “back to school”

I know a hell of a lot of people who would love to be buying a new school uniform, waving their child off at the school gate and at the end of the day hearing all about how their first day went. Myself included. This September Violet should have been starting Primary School and that she isn’t hurts us beyond belief. We would do anything to have her here now. We know as a little book worm at 15 months that she would have loved going to school. So if your child is attending school this September be thankful and celebrate it but don’t for a second wish for something different.

Big love, Sarah

Always Violet Skies x

You might be interested in these other blog posts –

Four years a mother

My authentic self

What happens after your rainbow

Party girl…

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At this time of the year my sleep (when I get any as my rainbow isn’t sleeping well and yes I get the irony given her name Aurora!) is peppered with a variety of different dreams all following the same subject.

Dream parties

It is always planning and arranging a birthday party. This year it’s one for a 4 year old as Violet would have turned four this June.

Violet’s 1st & only birthday – she loved it!

So far I’ve dreamt about lots of party themes including flower fairy tea party, puppy and kitten party, sleepover pamper party, Disney strictly dancing party, trolls theme, unicorn sparkles…

I think Violet would have loved Unicorns!

The dreams are all enjoyable in the main as I usually wake when the party is all set up ready before any guests arrive but I become upset when I actually wake realising that Violet isn’t here and I dreamt the whole thing.

Nightmares

Occasionally the dreams turn into a nightmare like last night when her little friends all started arriving with presents and balloons excited for the party to come. They were all asking where Violet the birthday girl was and we searched and searched shouting but she was nowhere to be seen. All her friends broke down crying and screaming then I woke up.

When I finally fell back to sleep again I started to organise a pool party in a hired swimming pool and so my dream party cycle began again.

Birthday balloons

Party girl to the core

I am a party girl at heart after all.  I guess it’s a way my PR brain tries to be proactive in processing things and it could be worse I could keep writing the same press release over and over!  

If anyone needs a kids party planning and arranging then just let me know, especially if it’s for a four year old as I can literally do one for you in my sleep! Violet would have had the best parties and I can assure you so will her sister.

Last year planning the Violet ball helped to halt these dreams, so I may have to start up plans for the Violet ball 2020, anyone fancy coming?

Love

Sarah x

Always Violet Skies 

Here are some other blog posts you might find interesting –

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

Grief is like being Ship wrecked

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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

New Year learning and growth

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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.

Another year without them

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 two years

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 make resolutions?

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.

What I have learnt in last 3 years..

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)

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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.

Focus on your learnings

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

Always Violet Skies x

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When I got my rainbow

Lonely

“Sleeping like a baby” what an untrue phrase!

A broken heart

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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…

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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?

Rainbow pregnancy

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.

I’m a mother of three

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 baby 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?

Moving on?

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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Side swipes

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

Imagination

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

Always Violet Skies x