Curve balls

If you’ve ever lost anyone and especially if you’ve lost a baby or child then you will know more than most that life can give you almighty curve balls.

These sudden changes in circumstance if it involves the loss of a significant other or a child can feel like the curve ball is an asteroid sent for total destruction. If you have somehow managed to survive this mother of all apocalyptic curve balls then you will understand now why the curve ball of a virus leaves me shrugging saying “meh”.

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Spring has sprung in Southern Cemetery – Violet Skies

Yes I’m in a high risk category because of my heart op recovery and if I catch the dreaded COVID-19 then could be very poorly. I’m self employed and my business is travel and hospitality. These industries are currently in free fall and I have mortgages to pay. I also have a house overseas again with a mortgage that I rent out to holiday makers, again that will be hit by this epidemic. People I’ve spoken to expect me to be far more stressed out and panic stricken than i actually am.

I think I’m so calm about it because you know what I’ve already been to hell and I lived there for a while. I’ve already had the very worst thing happen to me. This virus isn’t the very worst thing. I’ve lost 2 children and still I’m clawing my way back into a new reality.

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Make the most of little things – Wine & bubble bath

I’m not overly worried because you know what? I’m a survivor. My family are survivors. We will get through this new challenge the way we have gotten through all the other sh*t that’s been thrown our way, over the years, and yes we’ve had a lot.

We will get through this new challenge with as always compassion for others, the adaptability to be able to seize every opportunity and by looking after ourselves to ensure we avoid taking unnecessary risks to our health.

This too eventually will pass and then people will be travelling, shopping and partying again until then please be kind to others.

In the words of the poet Bon Jovi “keep the faith” and wash your hands people!

Big love,

Sarah xx

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Surviving child loss

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Failing as a mum? 

So these past few weeks I’ve really struggled to feel anything but confident about my parenting skills. I know from speaking to other parents out there that this is a common feeling to have at times.

Your baby died

You see the struggle for me is when the rational voice in my head tries to change my mood by telling me that I’m a good mum. Another voice reminds me that my first baby died didn’t she and maybe it was because she wasn’t looked after well enough. Perhaps I should have tried harder or done something differently?

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Violet & Arthur’s grave

Whenever my rainbow baby is ill all these feelings get dredged up from deep down. All these fears and bad memories or nightmares from hell (also known as Manchester Children’s Hospital) as I call them.

Pneumonia

If my rainbow baby is diagnosed with a chest infection or heavens forbid pneumonia then even more negative memories and emotions appear as that’s what Violet died from.

When I took our toddler to the GP a last week we saw a different doctor than usual and she looked at the on screen records looking puzzled asking does she have a lung disorder as she’s here a lot to get her chest checked. Our usual doctor insists we bring her to be checked whenever we are remotely concerned but obviously this lady didn’t get the memo. I really think they need to have something that flashes up on screen to say “her sister died of pneumonia” as I then had to explain no she doesn’t have any lung disorder we are aware of and to rationalise why we’re so over cautious bordering on paranoid. When I said her sister died of pneumonia I didn’t even get the usual “I’m sorry to hear about that” instead I think she was a bit embarrassed as I think she initially thought I was just a paranoid over protective mother.  She listened to baby’s chest and agreed it sounded crackly so prescribed some antibiotic.

Nursery

Roll on a few days and baby seemed much better thankfully so we sent her back to nursery.  Around lunchtime I got a phone call to say she was breathing rapidly and sucking in below her ribs so really serious for a little one.

Hospital

I collected her from nursery and we drove straight to hospital A & E, where the triage nurse said she thought we looked familiar.  When we explained that our other daughter died in the hospital she immediately said “oh my god you’re Violet’s parents”.  It turned out the reason we recognised each other was that 3 years ago she worked on the ward where Violet died and she had looked after her the night before.  She welled up and I started crying so it was a great start to a possible hospital admission.

Aurora-reading-hospital-violet-skies
Reading books in A & E

 

Violet

Thankfully because the nurse remembered Violet it was then an easy job for me to insist she asks for the on call respiratory specialist to consult and she obliged immediately paging them for us. Anyway they did an x ray of her lungs and saw she had a possible viral and bacterial infection on them.  They gave us more antibiotics and said as long as we monitored her for any further changes then we could take her home.

We were only home for a few hours when we noticed her breathing had gotten rapid again, around double what it should be, so we knew she was getting worse and phoned an ambulance, which is what we’d been instructed to do if she got that bad.  The operator explained that the ambulance would take 3 hours to arrive so given our proximity to the hospital we would be better driving her there ourselves.

Back again

We arrived back in A & E and were told they would be admitting her for monitoring overnight, as her oxygen levels were erratic.  It felt like I was at the gates of hell and having to enter it once again.  I explained this to the hubby and he laughed saying “pleased to see you’re not being over dramatic then” lightening the mood as always!

There are no words to describe how it felt being back in that hospital again sitting and sleeping (who are we kidding more lying with one eye open and jumping up every time she coughed!) at the side of my baby’s cot bed. All the memories I had suppressed of my time there with Violet came back along with my scepticism about what we were being told.  Luckily this time we had the top respiratory consultants looking at her x ray and examining her too so I felt more confident with what we were told.

Aurora-asleep-hospital-violet-skies
Sleeping like a baby 

Valentine’s Day

I got the best Valentine’s Day present in that we were discharged from the hospital and once again told to monitor her.  Fingers crossed she seems much better now but it’s always tough with little ones when they can’t tell you how they feel.

Here’s hoping she recovers quickly and we never have to return to that A & E again.  Although I plan once she’s better to take some more books in for the children in A & E as quite a few we looked at reading with her were ripped and damaged.

We’re still exhausted and reeling from the adrenaline here and hoping she’s better soon.  I take my hat off to those people, especially a dear friend of mine, who have children with long term illnesses who are often in and out of hospital. It is really tough to have to try to parent while doctors and nurses torture your child trying to make them better.

Thanks for reading.

Big love

Sarah

Always Violet Skies

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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.

Heart-frame-the-gallery-wall-violet-skies
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

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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? 

Heart-frame-the-gallery-wall-violet-skies
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?

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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.

Violet-in-manchester-childrens-hospital-on-26th-Sept-2016-violet-skies
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

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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

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A Sick Groundhog day

So our little rainbow baby had her one-year inoculations the other day so we had a few days of high temperatures, a distressed clingy baby, waking every half an hour over night and whimpering in her sleep.  It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day.

Violet

Our first born Violet died suddenly at 15 months old and looking back her health slowly deteriorated over her final months so slowly we didn’t really notice it until it was almost too late and then it was too late.

The last photo ever taken of our gorgeous Violet the morning of the day she died in Manchester Children’s Hospital playing with a balloon.

Rainbow baby

Our rainbow baby, Aurora Violet’s baby sister is now approaching 13 months old so we are ultra sensitive to any slight change in her behaviour, routinely checking her temperature and we whisk her to see the GP as soon as she coughs more than a few times. Over protective parents have nothing on us!

A sleeping Aurora – our rainbow baby

Violet in her final months started sleeping a lot worse than she did before and we assumed she was waking because of hunger but discovered on admission into hospital that it was because her oxygen levels were plummeting.  Aurora is displaying similar sleeping patterns so we’re awaiting sleep study equipment to monitor and check her oxygen levels while she sleeps.

Our rainbow baby has an appointment with a top lung specialist too, even though as yet she currently doesn’t have anything wrong with her chest (that we can tell).  It makes us feel better that she will be double-checked. You may think “what a waste of that consultants time if there’s nothing wrong with her” and someone expressed that to me.

The Why

Well her sister saw countless GPs, several paediatricians at two different hospitals, several accident and emergency consultants, a variety of different registrars at Manchester Children’s Hospital, with varying levels of qualification and experience.  Yet not one of them managed to accurately diagnose Violet while she was alive.  It wasn’t until after a full coroners inquest nearly 2 years after her death that we even found out what the issue had been.  This top lung specialist was supposed to see Violet when she was in hospital but she died before he got around to seeing her and perhaps he may have diagnosed her or not we will never know.

It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day. Violet-Skies.com
Violet in Manchester Children’s Hospital aged 15 months old.

So I’m not sorry in the slightest if by now playing the “my dead baby” card means that my rainbow gets the best specialist healthcare because you know what she and we bloody well deserve it.   I have paid my taxes (as have my family all our lives) and we fully support funding the NHS which yes needs more funding today so babies like Violet don’t die in hospital while waiting to see a specialist.

Until you have been in our shoes and watched your child deteriorate, suffer and then die in front of you whilst no one has an explanation as to why.  Then come object to me but until then I will stand and scream if I have to until I know my child is safe, healthy and happy.

If your child is ill too let me know as I’m happy to advise or scream for them too.  

The Maybes

Maybe we didn’t shout loud enough with Violet?  Maybe we didn’t kick up enough of a stink?  Maybe I should have bundled her into my car when I decided Manchester Children’s Hospital weren’t doing a good enough job and driven her to Alder Hey hospital?  

Well you know what this time if I need to then I bloody well will and god help any healthcare admin person who dares stand in my way!

The NHS

Have you ever had to question healthcare professionals?   During Violet’s short lifetime we experienced the very best of the NHS and the very worst too.  What are your experiences?

Big love,

Sarah

Always Violet Skies x

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My authentic self?

A fellow blogger recently launched her own hashtag challenge #julyyourway and the first day was entitled “your authentic self”. I realised I no longer knew exactly who I was anymore and decided I needed to write this post in case some of you loss mums or parents are the same.

Who am I?

I don’t actually recognise myself anymore. I can tell you all about the old me in great detail as I spent 39 years with her.

The old me

The old me was strong, determined, unwavering and a great calculated risk taker.  Her instincts about people and situations were nearly always right. The type of person you could drop into a room of total strangers and she’d be fine chatting to them making friends pretty quickly. If someone told her she couldn’t do something she’d make it her mission to prove them wrong.  One of life’s dreamers believing in positive thinking and that with the right mindset you can achieve anything. Always working towards a vision of the future and undertaking the next challenge. Underneath the confidence she genuinely cared about all those she met, worked with and spent time with. It took me a long time to get to know, appreciate and love the old me.

The original me pre babies – happy go lucky (most of the time)

Where did she go?

What happened you might ask that would fundamentally change your personality permanently well like most new mums four years ago I lost myself a little after the birth of Violet.  All new mums will relate to the fact that usually you immediately become more risk adverse as your instincts to protect kick in and your self-confidence takes a knock too as your body shape changes. However most mums will tell you that maybe a year or two later they rediscover themselves again building up that old confidence. Their core self is fundamentally unchanged.

That happened to me too.  I was starting to rediscover the old me again in September 2016 then the unthinkable happened.

Mummy me in NZ with Aurora

Child loss

When you lose a child they say your world changes, life is completely altered and things will never be the same again. 

The air is completely knocked out of you but what you don’t realise is with the air goes your personality, as you knew it.  All your hopes and dreams, your confidence, trust in yourself and others, All the things you’ve literally spent a lifetime developing, building & honing are wiped away in a moment. All the negative things cling on such as self-doubt, negativity, criticism, depression but the good things…

Me 1.0

The old me was confident, fun and had a wicked sense of humour.  She was lovely to her core because she genuinely believed there was more love in the world than bad.  She truly believed in positivity and only saw the good in people. She believed in what her gut or core instinct told her about people and situations.  She actually believed that eventually life will come good and that good things happen to good people.  Work hard try your best and believe in others then good things will happen.  She always looked for the silver lining in every black cloud. It never failed her until the day her daughter died.

Try a reboot

At first you think these stronger qualities are still there just diminished like they were post-child birth. Just like when you’ve had set backs or heartbreak in the past? Like a hard drive that just needs a reboot. You try to do that to reboot yourself by trying similar things you’ve done in the past to recover like rest, holidays and seeing loved ones.  Over and over you try in vain to recover.  Eventually you discover that these qualities aren’t dormant any more.  They aren’t still there to be rebooted they’ve been completely wiped out. It’s like you’ve had a computer virus in your brain that’s wiped out the useful things leaving only that photo of you from a beach holiday 10 years ago that you didn’t even like and the only email messages that have been retained are spam ones about PPI.

A reboot for us often involves travel but we’ve been round the world again and still no sign of the old me

Memories

You have a vague memory of the old you but it’s hard to imagine now you were ever that person.  I can only explain it by saying that it’s as though I’m viewing an old movie about someone else. I miss her. I’d spent years trying to learn to love myself, to be confident in my own skin. This confident me enabled me to be very good at what I did career wise, especially as I was able to juggle twice as much work as anyone else and easily did 16 hour days regularly. I was a caring considerate person who loved life and loved having fun. I really did work hard play hard and excelled at it.

A shell

Now that person is gone. Yes physically I look the same. I still have the same cognitive abilities (sleep deprivation affected maybe but I can still ace an IQ test or two). I even the same memories but I feel as though I’m looking in at someone else.  I miss the old me but after over 2 years of trying to get her back I’ve realised that she’s “left the building” never to return. I’ve accepted that I need to build up these qualities in myself from the beginning again, to build the new me. 

I still look like the old me just with a few more lines and wrinkles (and bags from no sleep!)

Still a central core

I’d forgotten how I used to be really strong.  There’s a central core of that original strength left that’s hardened up, so much that it takes a lot for me to cry now but every so often a bit of it crumbles. This core is still surrounded by kindness and compassion just not the huge volume I used to have. This has been coloured by grief and the realisation that really bad things can happen to good people.  Karma doesn’t exist and positive thinking will only get you so far.  

The new me comes with a great deal of darkness the old me didn’t have. This has shaped my sense of humour so it is very dark now. I don’t trust my own gut instincts anymore, as these have been proven wrong twice with the very worst results. I also no longer trust others especially those in the medical profession where I now take what they tell me with a pinch of salt.

Imagination

Luckily over the last 2 years that I have been hitting reboot I have seen some of my wacky creativity come back and my ability to speak to total strangers on some days now is almost as good as it was. Although I find it extremely hard to tolerate fools and I seem to have become even less diplomatic than before so I can be quite honest and frank now.  This is of course a work in progress.  Some things like confidence and speaking to strangers just takes practise and stepping out of your comfort zone.  That’s at least one good outcome in that I don’t really have a comfort zone rather a numb achy uncomfortable zone.

Version 2.0: Post child loss

Unfortunately unlike computer software I don’t think “version 2.0: after child loss” will be an upgrade on the one before. Hopefully I’ll eventually be able to patch over some of the holes and maybe even rebuild a few of the qualities the old me had that were great. It will take time though as it took 38 years of hard work to develop the old me.  

Feel free to check in with me again at age 79 and we can see if the old me has returned just a wrinklier version.

On the positive side it has changed my outlook on life instead of planning for and looking to the future I try to live in the present. To enjoy the here and now making the most of every moment as I understand just how short life is.

Do you ever feel you have changed? Is it for the better or worse?

Thanks for reading

Big love,

Sarah

Always Violet Skies x

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The founder of #julyyourway is blogger Holly Goes Lightly join in on instagram!

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! http://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

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This week is Maternal Mental Health Awareness week and I have to be honest that I’ve struggled with what exactly to write. Although I am a mother and sometimes have struggled with mental health, I’m not what you would call a “normal” mother but then I guess no one is truly “normal”.  So for the last day of Maternal Mental Health Awareness Week here is my story of motherhood.

Me with rainbow baby Aurora in Mangawhai New Zealand - Violet Skies
Me with rainbow baby Aurora in Mangawhai New Zealand – Violet Skies

Post-natal depression

I have friends who have struggled with post-natal depression. I know friends whose mother’s have had it 40 years ago when it was dismissed as minor and called the “baby blues”. The difficulty I have is that motherhood for me has been a real rollercoaster.  The struggle for me is writing about my own experience without seeming to diminish anyone else’s experience of post-natal depression.  I have had friends tell me that they feel they can no longer share their tales of depression or worries as they think they seem minor compared to what I have been through. They have said that actually I make them feel worse about themselves because they should be happy when they compare their lives to mine.  Well that doesn’t make me feel guilty, bad or worse at all for sharing!

So apologies in advance if my story of Motherhood makes any of you out there feel worse about your own situations. I don’t want to diminish anyone but hope that by sharing my story some of you who feel alone might feel less so.  

Normal motherhood

I have never had a “normal” motherhood experience.  I have not known what it is like to go into a baby scan at 20 weeks full of excitement and to come out elated with happy news afterwards.  Our first baby Violet was diagnosed with a heart condition at her 20-week scan.  Second baby Arthur was diagnosed with a serious brain condition at his 20-week scan resulting in a TFMR at 22 weeks of pregnancy.  Third baby Aurora luckily had clear baby scans all the way through pregnancy but we never entered a scan room full of excitement or even left elated afterwards. More we left smiling with relief that we hadn’t yet had any bad news.  Those were my three motherhood beginnings already a little different from the majority of mothers out there. You can read more about stress with a rainbow pregnancy here.

Violet’s birth

When Violet was born we had a natural induced labour as that was deemed the safest for her but she ended up being undiagnosed breach so I had a breach birth naturally with no pain relief.  I am still having counselling for that experience alone, never mind the on going medical treatment because of the wounds I sustained.  Violet was also transferred to Alder Hey hospital shortly after birth without me and at 4 days old she had open-heart surgery. It had only a 30% chance of success but she survived and the operation was a 100% fix.   

It was, at that point, the most stressful time of our lives and we were relieved it was over. We finally took a 2-week-old baby home from hospital with serious health needs. She needed specialist round the clock care, whilst her heart and rib cage healed up.  You can read more about Violet here. Despite her start she was a healthy little girl who had mild developmental problems because of her surgery and also issues eating solid food. We found that a challenge and extremely frustrating.  However she was extremely clever, musical and a happy little soul considering her start in life.  She was a joy to be around and made everyone who met her happy.  This summarises my first year of motherhood started off extremely stressful and finished happy.

WHAT MOTHER’S DAY REALLY MEANS
Me with my angel baby Violet in Cyprus. Violet Skies.

The loss of Violet

My second year of motherhood wasn’t anywhere near as good as my first!  Violet got sick and was admitted to Manchester Children’s Hospital. We sat by her bed for weeks where she finally died, suddenly from a rare form of pneumonia aged 15 months.  We had to wait nearly 2 years to find out why she died, as the autopsy was inconclusive. We had to endure a coroners inquest too.  You can read more on this here.

First rainbow baby

My third year of motherhood I think was possibly the most challenging as this year we enjoyed a second pregnancy. Until the fateful 20 week scan and then, whilst still grieving the loss of our beloved daughter, we lost our son Arthur too.  You can read about it here.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies.
36 weeks pregnant with Aurora at my friends wedding. Violet Skies.

Second rainbow baby

My fourth year of motherhood is still in full swing and I have to say it is by far the best yet as we have our gorgeous rainbow baby Aurora. Named after the goddess of the dawn she has brought light back into our darkness. She certainly does this as she’s a bright, cheerful, smiley little girl.  

People looking at our social media feed might be forgiven for thinking our lives are pure happiness now but as anyone who has suffered child loss will know they aren’t.  The happy days are still tinged with sadness, as to what should be and what we are missing. 

For example the other day I was “subjected” to a conversation by other mothers talking about how lovely it is that their three year olds and their babies play together. They interact now all the time. Well that’s what we should have Violet as a big sister playing with her younger siblings. Instead Aurora will probably grow up alone.  Having grown up with a brother and sister that thought alone makes me want to cry. My siblings are still close to me and we remain an important part of each other’s lives.

Brother & sister – Violet & Aurora’s gorgeous cousins

Counselling

I still have regular counselling to help me to try to deal with everything as I have horrendous nightmares on a regular basis. Sometimes extreme anxiety and times when I feel sad.  I also have PTSD (read more here) caused by my first birth experience, my daughter having open-heart surgery and also from watching her die. I am told all this is “normal” for a grieving parent but it does draw parallels with how other mums say they feel who have post-natal depression. Whilst I don’t know what it is like to have a relatively normal experience of motherhood and still feel depressed, I do understand and have lived through all these feelings on a fairly regular basis.

Support needed

I feel that lots of health visitors also need more training and guidance for how to deal with mothers who perhaps are slightly more fragile mentally than others.  This is in light of a recent experience I had with a health visitor who reduced me from a confident mum of a rainbow baby to a crying anxious mess in the space of one baby weigh in session.

I also feel that more support should also be given to fathers as often they have no support at all, especially after the loss of a child or after they have witnessed a horrendous birth.  They can suffer PTSD too.

Sending all mothers (and fathers) out there lots of love as parenthood can be tough whether it is simply sleepless nights. Or sitting by a sick child in a hospital bed or crying at a graveside.  At the end of the day everything is relative to your previous experiences too.  I thought the toughest thing I had to endure was watching my child sick in hospital that was until they died. Motherhood can be beautiful and wonderful but it can also be extremely cruel. 

Big love,

Always Violet Skies x

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