My heart’s all fixed

Back in 2016 I felt the worst pain I have ever felt when I lost my beloved daughter Violet and then the following year I lost her brother Arthur at 22 weeks of pregnancy too.  I knew then exactly what people meant when they described a broken heart.  I have never felt a pain like it.

Ironically after I had lost Violet in early 2017, before Arthur, I sought medical advice for dizziness and lethargy that I’d had on and off since I had had Violet.  When she was alive I was told it was probably because I was sleep deprived with a new baby and being a busy mum but when these symptoms continued after she had gone I got it checked out again.  I was diagnosed with having an ASD or hole in my heart that will have been there since birth but possibly enlarged during the pregnancy and birth of Violet.

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I have this gorgeous art work by The Gallery UK in our dining room!

The hole it turned out was pretty large nearly 2cm in diameter and without a repair my symptoms would probably have got worse and I was at higher risk of clots and stroke too.  So I have been waiting for a repair since early 2017.

I still remember that first diagnosis of a broken heart and laughing saying “well I know this already as my daughter has just died”.

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My broken heart depicted here – Violet Skies

So now it feels odd when I tell people I had a broken heart but now it’s fixed as though it means I am over the grief of using my children.  I find myself having to say physically my heart is now repaired but of course emotionally it isn’t.

What’s great is that when I came round from the anesthetic I asked was there a window open as the air felt so fresh, like it does at the seaside or in the country when it’s full of oxygen.  Of course there was no window open I just now have the ability to absorb more oxygen from the air so even today when I breathe in the air feels clean and fresh (yes even in Manchester).

I can’t wait to visit the seaside or countryside as I feel it will blow my mind the amount of oxygen I will have.

The other major difference already is that I don’t get out of breath as easily just walking down the road and my muscles don’t burn after even slight exercise either.  I felt like the bionic woman initially!

It will take a few months hopefully before I feel the full affects of the operation as one side of my heart is still very enlarged so will take time for the pressure to dissipate but I’m hopeful that by spring I will certainly have a new lease of life.

I will never run a marathon but looking forward to having more energy to spend quality time with my rainbow baby and family alongside of course juggle work, charity and this blog too.

So at a time when lots of people have resolutions about losing weight or stopping smoking I am trying to remain as healthy and stress free as possible in order to give my heart a fighting chance to heal and recover properly.

What are you hopeful for this year?

Do you have resolutions or hopes for the decade ahead?

Please do share with me…

Love Sarah

Always Violet Skies xxx

You might be interested in these posts too –

Broken hearted

Surviving after child loss

A Literal Broken Heart

 

 

Due Date Anniversary

So today in 2018 was our son Arthur’s due date but he was born sleeping on 1stSeptember 2017. I don’t therefore know what you call today “a scheduled birthday that should have been”??? A Due Date Anniversary?

Confused situation

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It feels odd being sad today because if all had gone to plan and he had been born today happy and healthy then we wouldn’t have our little girl Aurora as she was also born later on in 2018.

It is a confused situation entirely.  Arthur doesn’t even legally exist as he was born sleeping at 22 weeks old so 2 weeks earlier than the legal requirement for human life however if he had drawn a breath at birth than he would have lived so then would have a birth and death certificate.  He never drew breath so he has neither certificate.

 

Legally he never lived

Even though in the eyes of the law he didn’t exist to us he did.  I felt him moving constantly inside me kicking over and over.  We saw him somersaulting on scans and constantly moving even if no one else did.  We knew him a little and met him whilst he was sleeping.  He looked like a miniature version of my hubby with a thick head of dark brown hair.  His name sits now underneath his big sisters name on their headstone at her grave.  We interred his ashes with his sister Violet so she can look after her baby brother.

Their baby sister is continuing to light up our lives here living up to her name “Goddess of the Dawn” and certainly keeps us on our toes.

Rest in peace my little rocket man; keep kicking those legs making those rainbows up high.

Love,

Sarah

Always Violet Skies xx

Here's to all those Rainbow parents

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Reflections on the decade that was…

So as we say goodbye not just to the year 2019 but an entire decade lots of people have been reflecting on what they have done in the past 10 years.  Some have posted before and after photos.  Others have listed achievements they can be proud of.  Others are listing those things they want to achieve in the 20s.

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A Christmas grave

For a mother of loss this time is ever more poignant as it not only marks the start of another year without my child but another decade entirely without her.  This coming year should have been Violet’s 5thbirthday and her brother Arthur’s 2ndbirthday next week.  As has now become our family’s tradition we took our morning stroll via the cemetery to wish our children Happy New Year with their sister in tow before heading off for a New Year’s Day lunch.

Last New Year’s I began a new tradition of looking at what each year since we had Violet has taught me. If you missed last year’s here’s the link.

My experiences for 2019 were – travel with baby daughter to the other side of the world for brother-in-law’s wedding, visited Hong Kong and an amazing old friend in Australia.  2nd brother-in-law’s wedding in London. Rainbow got hearing aids and we started a new journey as parents of a hearing impaired child.  I began a new role as university lecturer & continued my PR consultancy.  Rainbow’s 1st birthday and nursed her through two bouts of pneumonia at 15 months.  I got my heart op & had a 2nd Christmas with our rainbow. Raised over £40k for Alder Hey Children’s Hospital.

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Mangawhai in New Zealand

My Learnings for 2019 are –

  • Hospital admissions are extremely stressful when it is at the hospital where your first born died.
  • When your child gets the same disease as her sister at exactly the same age her sister was when she died from it, then the stress is almost unbearable and you don’t sleep for months.
  • Always trust your gut instinct and ask for second opinions if necessary.
  • Travel insurance doesn’t pay out when you cancel a holiday because your baby is sick and she wasn’t due to travel.
  • You can travel anytime in the future (hopefully) so cancel it if needs be
  • Date nights can be rearranged although perhaps don’t prepay for wine matched dinners (jus asking for baby to be sick!)
  • Good friends are so precious and even when you’ve been apart for ages getting together is still the same
  • Don’t leave your baby sat wearing only a nappy on a friends fluffy white rug as they may decide to take the nappy off…
  • Never fly Swiss air with a baby nightmare airline
  • Family time is the best so try to schedule more of it in
  • Other people have had completely different experiences and challenges in life to you so respect their feelings however alien they may seem and try to learn from them
  • The cardiac ward at MRI is one of the noisiest night time places in Manchester I think a nightclub might give patients a better nights sleep
  • Liverpool Heart and Chest Hospital is absolutely amazing and MRI should take notes from them.It almost makes me want to move to Liverpool!
  • We are lucky enough to have the best neighbours ever you can’t buy that
  • Some people still surprise and shock me but some in a good way
  • Remember not everyone has experienced the same things in life as you so your minor issue could be catastrophic for them so try to be sympathetic
  • Everyone has an opinion or viewpoint even if it might seem irrational or stupid compared to yours just smile and nod sometimes life is easier that way
  • Home renovations and interiors are a good way to distract from stressing about life’s bigger issues
  • Photography is therapeutic as is planning future travel
  • Charity work and donation to charity can help you to re-focus on the good in the world rather than the bad
  • When your life flashes before your eyes you want to try to ensure it is a good one
  • It can be very scary having to talk about your own funeral arrangements and organ donation but it is so necessary so please do that now.
  • Life is so precious and as clever as the top surgeons are they still don’t fully understand some things like hearts.
  • I’ve experienced a physical broken heart and an emotional broken heart and can tell you the latter feels worse
  • What is left of the NHS is amazing
  • Remember whatever happens there are more good in the world than bad even if at times it feels as though it is weighted towards those who are bad.
  • Hope is stronger than fear.

I have learnt 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.  Hopefully we will all learn from the fallout from Brexit and the recent election. There is something constructive that can come from the most upsetting and distressing of situations if you really look closely.

For all those who have suffered loss this past decade please remember and recognise what an achievement it is to be a survivor after all you have been through.

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The dreamcatchers near Violet’s grave in the cemetery 

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.

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 and whatever the future holds you can handle this”.  Here’s to the roaring twenties!

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The Roaring Twenties – Vector files

Love Sarah

Always Violet Skies x

You might be interested in these blog posts too –

New Year Learning and Growth

September = New Beginnings

Barcelona in winter with a baby

 

Future planning

Someone asked me recently what my plans were for the next 5 years. I laughed and said ideally I still want to be alive and I hope my family are all still alive too. Then I’d like us all to be healthy and happy. That’s about it.

A 5 year plan?

Not sure that was the answer he was after as he said I meant professionally and for your business. Well it’s not much use wanting anything work wise if I’m not here is it was my answer?

Maybe they shouldn’t ask parents of loss who have a heart defect that will hopefully be repaired before Christmas that question? 

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This heart image by The Gallery Wall UK sits on my wall in the dining room

I used to be a planner

I used to be into forward planning years ahead at least as far as work, holidays and home went but these last few years have taught me that there’s no point putting too much effort into future plans when something could happen unexpected at any time that can change your world in a heartbeat.

Now I try to live in the present

It much better to live in the present as much as you can and also to try not to dwell too much in the past either as there’s nothing that can be done with that now.

Don’t get me wrong I still plan a little because I have to with work or family plans but i only tend to plan a few months ahead at a time.

How about you? Are you a planner? 

Big love

Sarah x

Always Violet Skies

Future-planning-violet-skies
Do you plan ahead?  What’s your 5 year plan?

If you enjoyed reading this perhaps you might like to read these articles –

Four years a mother

A Broken heart

Mothering after child loss

November at last!

November is here at last and I say that not because it is a favourite month but just because October is finally over.  This year it was particularly tough.

October

I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all.  The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.

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A poorly rainbow

Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return.  This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.

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Our fear – this was Violet the morning she died.

Expert jugglers

We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.

Update

Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too.  We will continue to juggle work commitments and childcare thanks to the support from family and friends.  There’s no way we will risk losing this little girl too.

New parenting territory

It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day.  It makes no logical sense why I feel relief at this but my stress has lifted slightly.

Is this normal with rainbow babies?  Anyone else feel this way too?  Or am I just odd?  Please let me know.

So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.

Hope you’re having a great start to your month!

Love

Sarah x

Always Violet Skies

You might find these blog posts interesting –

My story

Four years a mother

Once you’ve got your rainbow

Mothering after loss

All Saints Day

Never mind Halloween please light candles on 1stNovember to mark the first All Saints day today “Día de los Inocentes,” a Mexican catholic tradition that honours deceased children and infants. They are remembered on this day when the veil between worlds is thought to be the finest.

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All Saints day taken from Catholic Online

All Hallows Day

In Mexico, All Saint’s Day also known as the Feast of All Saints, All Hallows’ Day or Hallowmas is celebrated with the first day of the Day of the Dead (Dia de los Muertos) known as “Día de los Inocentes,” honoring deceased children and infants. The 2nd November marks a second day for all deceased. Some religions and cultures call November 2nd All Souls’ Day and this is the day that is often chosen for the Day of the Dead parades and celebrations.

Seamless vector pattern with sugar skulls and flowers on dark background.

Catholic tradition

Catholics traditionally take flowers to the graves of loved ones and Saints who are innocents on these days.  Perhaps you’d like to light a candle at home instead to remember those babies or children who have died on the 1stNovember and then again for any adults on 2ndNovember too.

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All Souls Day – photo from Wikipedia

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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?

& Juliet

I was honoured to be invited along to the first performance of new musical “& Juliet” and in return I wanted to write a small review about it.

A varied audience

I went to see the show with some friends whose ages ranged from 10 to 50 so it was interesting to get a perspective on the production from each of them.

The general consensus was that it was a riot of lights, colour and music.  It is a show that is a great deal of fun with excellent comedic timing and some clever writing.  

Romeo & Juliet

The show’s pre text is that what would have happened if Juliet from Shakespeare’s famous Romeo & Juliet didn’t die alongside Romeo but went onto survive.  Cue some amazing songs about girl power written by the musical legend Max Martin who is only second to Lennon and McCartney in terms of top ten songs in the US.

The songs

Songs include Britney classics such as “Hit me Baby One More Time” and the Back Street Boys “I want it that way” plus lots of other classics from the naughties by Pink, Katy Perry and Bon Jovi.

Highlights

Highlights of the show were David Badella who placed Lance and Melanie La Barrie who played Nurse. Their chemistry and comedic timing was brilliant resulting in the entire audience in stitches of laughter especially with their performance of “Teenage Dream”.

Cassidy Janson who played Ann Hathaway was also amazing with a fabulous voice and great stage presence.

The solo performance by Arun Blair Mangat of “I’m not a girl.  Not yet a woman” was I thought the best vocal performance of the show.

The Amazing Cast of musical &Juliet at Manchester's Opera House
Review on Violet-Skies.com
The Amazing Cast of musical &Juliet at Manchester’s Opera House

Music volume

The volume of the music was unfortunately occasionally too loud and overshadowed the amazing vocals, which was a shame but hopefully that technical detail will have been adjusted for future performances now.

Shakespeare

At a time when theatre visits by 11-15 year olds are at an all time low shows such as this one should renew interest in the arts. Hopefully this musical will make Romeo & Juliet accessible to a new audience too.  A new audience that might not have seen Shakespeare before and might after this show consider taking another look.

A show for 2019

It was also a great show for 2019 showcasing exclusivity, equal rights and gender fluidity too.  It caused some members of the audience to seem a little uncomfortable with some parts but hopefully that means it will help to encourage new mind-sets and to provide a catalyst for important discussions too. 

In a year that has seen the Spice Girls reform and enjoy renewed mass hysteria from an audience that were barely out of nappies the first time around.  I think the timing for this rip roaring musical couldn’t be better.

There was something in it to appeal to each of my party’s varied ages so a definite must see from us whether you are 10 years old or 50 you will enjoy a thoroughly entertaining night out.

The show is running at Manchester Opera House until 12thOctober so get tickets while you still can here 

Love Sarah

Always Violet Skies xxx

You might be interested in these other articles –

Anniversary dinner at L’Enclume

My story

September = New Beginnings

September = New Beginnings

From the age we first start school we are conditioned into the fact that September means new beginnings so much so that as adults, even when we have no school age children and are no longer in education ourselves, September can often still seem exciting as we prepare for autumn with new clothes, new stationary and a renewed focus for the future. This has always been the case for me.  I loved school even more so a new notebook, accessories and clothes that came with it!

Enjoying a beer with friends & catching the last of the September sun

A New Beginning no one wants

September equalled new beginnings.  I could always look at this month in a positive way until 3 years ago when that new beginning first came to equal a negative “new beginning” no one wants to ever face. That new beginning was the loss of my daughter and the new beginning that year was trying to carry on with some semblance of life without her in it.  No one ever wants that kind of new beginning and this has become my biggest on going challenge to date.  It’s tough really tough and never ending.  Yes it was nearly 3 years ago but it feels like yesterday one minute and like a scene from a movie about someone else’s life in the next.

Violet September 2016 the day she died

Another horrendous September

Then the following September after our annus horribilis we faced another “new beginning” to add to the stress of the one the previous year.  This was the loss of a much-wanted son that came out of the blue with shocking news for me accompanying it and so we had to arrange a second child’s funeral in our second stressful September “new beginning”.

Arthur’s Giraffe that now belongs to Aurora his little sister

Bringing control back

So last September I organised the Violet Ball to take back control of my Septembers and that year’s “new beginning” was a black tie charity event for 200 people to raise funds for Alder Hey children’s hospital.  Which as an experienced PR is the kind of event I have organised before but this time with a 6-week-old new born baby in tow event organisation wise that was a first for me!

The Violet Ball September 2018

An exciting New Beginning

This September we decided not to do a charity ball as we agreed we needed a summer to relax and decompress rather than run around finalising an event. I was dreading finding out what this year’s “new beginning” for September would be.  But you know what this year’s is actually a positive (hopefully) and challenging one as I got asked to become a part time Associate Lecturer at MMU Business school teaching marketing.   New starts and exciting new beginnings that are positive is exactly what I needed and I might treat myself to a new notebook.

Hope your September’s have been successful and less stressful ones too.

Keep positive

Love Sarah

Always Violet Skies xxx

You might be interested in these other blog posts –

Four years a mother

My authentic self

What happens after your rainbow

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