It’s not about you

Yesterday I was in hospital with my daughter and they tried to take blood from her 5 times and failed.  It was horrendous having to hold her still while they inflicted pain onto her. Fortunately for her and me it was for some tests as an outpatient rather than them trying to get IV lines into her as a hospital admission.

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Aurora with fish at RMCH

If you have been through this with your child you will know how distressing it is.  Even more so if you have been through it with a child for weeks to have them then die at the end. This experience brought back many harrowing memories of my daughter Violet for me and has made me want to write this article and I hope you will take a few minutes to read it here goes…

It is not about you

There seems to be some people still frequenting public places and still having social gatherings. Those who aren’t practicing social distancing with an “it won’t happen to me. I’m low risk anyway” attitude.

I implore you to share the hell out of this article and ask people to do one thing and read this to the end.

4 years ago

Nearly 4 years ago if you had have asked me if my daughter would die from pneumonia I’d have said “what no chance they have medicines and hospitals to prevent that”. But guess what?  She died and the hospital nor us could save her. Think about that for a moment.

A disease the hospital knew all about; one that’s been around for hundreds and hundreds of years. One of the best children’s hospitals in the UK couldn’t save the life of a toddler. Think about that.

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Violet 3.5 years ago watching TV in Royal Manchester Children’s Hospital (RMCH)

Now I don’t tell you this for pity or for you to feel sad please read on.

Everything and anything

If you had told me or my husband that to save her we’d need to sign away our houses. We would have done just that. If you had have asked us to give away all our belongings and sign away any future earnings then we’d have done that too. We would have literally given everything and done anything to save her our beloved daughter. I know the rest of my family and close friends would have also. Think about that for a second.

I still remember the nightmare day she died and I still have nightmares and visions of it 3.5 years later. Again I don’t want you to feel sad or pity for me, just to keep reading and thinking.

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Violet asleep in Royal Manchester Children’s Hospital (RMCH)

As my daughter was taking her last breaths and the doctors were fighting to try to save her. Four of my family members including myself were in that very room. I remember we were begging at this point. Yes we were begging and pleading with her to muster the strength to fight. We were pleading with the doctors to save her. We were pleading with whatever higher power there might have been to save her, even if it meant trading our own lives instead. Think about that for a minute.

We would have traded our lives all four of them for her one fragile beautiful little soul.

Stay home

So that’s it folks that’s what I wanted you to read not for pity. For the realisation that all you have to do to save someone’s child (everyone is someone’s child) is for you to stay away from others. You keep your distance and stay inside your homes in order to save a child. That’s it. You don’t have to give your life for theirs just stay home or at a distance and wash your hands.

Yes I know some of us have lost our livelihoods and money so I don’t want to belittle that but remember what I said that we’d have happily given absolutely everything, including our own lives, to save our daughter.

Ask anyone who has lost someone they loved more than anything, whether a child, partner, parent, sibling or friend what they would do or give to get them back. It would be a lot more than simply them staying at home or away from other people.

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Aurora digging in her sand pit after hospital yesterday

Hell

If it would bring my daughter back hell I’d move there. Yes to hell if she’d be alive again.

We’re not asking you to give everything or do a deal with the devil just stay home and away from others for maybe a few months. That’s it.

Isolation at this time will save lives and whilst you might think you’re ok it’s not about you. It really isn’t about you right now.

Do it for those you love because take it from me hell is going on living when someone you love more than life itself isn’t.   It can happen to you too I’m proof of that.

Trade your time for a life. For the life of a child.

Thanks for reading and thinking.  Thanks for your time.

Big love & hugs (virtual of course)

Sarah xxx

Other posts you might want to read are –

Don’t just survive thrive

Curve balls

Surviving after child loss

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.

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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.

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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

You might enjoy these other articles –

Grief advice

Four years a mother

Reflections on the decade that was

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

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?