Low risk isn’t no risk

A friend of mine recently asked if I had been sent a letter saying I was high risk because I was self isolating from the start 5 weeks ago. I haven’t. Officially I am classed as low risk despite having a heart operation at the end of last year. My daughter who also has a congenital heart issues is classed as low risk too.

Regardless we have been isolating to the maximum for the last 5 weeks and will continue to do so.

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Calm and still yet stormy – The lake at Colshaw Hall, Cheshire

Medical “experts”

I was told once before by medical “experts” that a daughter of mine should be treated as normal and wasn’t at increased risk of anything. She wouldn’t have any more reason to die than anyone else.  She died of the very thing they said not to worry about and the coroner said she has been at a greater compounded risk, so forgive me if I don’t trust the medical “experts” now especially given this is a new situation and a new virus they don’t really understand.

Make a mistake once…

and it becomes a lesson.  Make the same mistake twice and it becomes a choice.

My mistake was believing the medical experts when they said to treat my heart baby as a normal child.  She wasn’t a normal child.

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A Sleeping Aurora at 21 months

Not no risk

I’ve suffered the pain of losing not one but two children, so forgive me if I don’t want to risk losing another even if that risk is a low one.

Low risk means there is still a risk it’s not a no risk situation.   No one is at no risk of the corona virus remember that.

Is any risk worth it really?

What do you think?

Are you willing to gamble with these very high stakes?  I am not.

Stay safe everyone.  Hold your nearest and dearest close.

Big hugs

Sarah xx

Always Violet Skies

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Lonely child

It makes me sad during this time of isolation that my little bubbly outgoing sociable girl often seems lonely desperate for the company of other children. Yes she has me and her dad with her but it isn’t the same as someone a similar age.

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At the door with her nursery bag wanting to leave to see her friends

Waves excitedly

When she sees other children going passed our house on their bikes on the way to the park for their exercise or animatedly chatting holding hands she bangs on the window waving to them shouting hello. She wonders why these children are allowed to play together but she cannot join them.

It’s hard to explain to an almost two year old that those children are siblings so they are allowed to play together and visit the park with each other.

She should have a big sister

It makes me so sad because by rights she should have an older sister to play with. A big sister to run around the garden with and who would be able to relate a little more to her, rather than the two adults she finds herself spending 100% of her time with.

Violet would have been able to look at books with her, play on the slide in the garden and they could have sat together to create sculptural masterpieces from play doh.  Even just lounged together on their giant unicorn to watch TV.

Don’t get me wrong I grew up with siblings myself so understand all about the arguments but you know what I would like to have to break up those fights and solve the disputes rather than try to cure lone tantrums about wanting to see others.

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Two of Aurora’s four cousins who she is missing at the moment.

Until now whenever I’ve gotten upset about her not having her sister here to play with I’ve taken comfort from the fact she has cousins she’s close to that she can grow up with. This current situation that stops her from seeing her cousins and indeed her friends reminds me how alone she really is.  I was lucky enough to grow up with a brother and a sister.

Facetime

Yes we can video call but she’s not overly interested in that. If we show her videos of her friends and cousins she watches them over and over finally tantruming when we stop her watching for the 100th time.

After seeing friends from a distance waving & chatting to them from the end of the driveway or over the fence she then has a tantrum because she’s not allowed to play with them. She’s even gotten her nursery bag taking it to the front door in an attempt to leave to go play with other children.

Adverse affects?

I fear that when this is all over our vivacious little girl might be a shy and reserved wallflower who has forgotten how to interact with her peers or other children.

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Playing in the garden

A close friend of mine who grew up as an only child once told me she wanted to have more than one child as growing up as she dreamed of having a sibling to play with. She said she used to feel envious watching me with my brother and sister wishing she could have the same.  I never really understood what she meant until now.

A new kind of grief

Watching my little girl cry and sob and tantrum because she wants to play with the children going passed our house breaks my heart.  Even more so that by rights she should have at least a big sister with her right now and actually she is the youngest of three.

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Sad in her pushchair as she watches siblings play and is told she can’t join them

It breaks my heart it really does.  It also reminds me of the difficult conversations that are coming in the future when she wants to know why she’s an only child and what happened to her older sister and brother.

Not alone

I recently came across someone else on instagram who is going through a very similar thing with their daughter and the isolation situation so I thought it was important to share this in case it might help even more out there to know they aren’t alone in this.

 

Big love

 

Sarah

Always Violet Skies

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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.

Violet-watching-tv-RMCH-Violet-Skies
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.

Aurora-sand-pit-enjoying-life-violet-skies
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

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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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