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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
Always Violet Skies xx
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