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.
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.
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.
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”.
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.
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!
So I have spent the last few years writing this blog about how to survive child loss and I’m pleased to say I have survived so far but then I saw the interview that HRH Meghan did when she was in Africa and still an HRH. Something she said in that interview really resonated with me and don’t get me wrong I’m not a huge royalist fan at all although I did love Suits!
Meghan said in that interview –
“it is not enough to just survive something, that’s not the point of life. “You have got to thrive”
This resonated with me as I suddenly realised that I owe it to my daughters (one an angel and one very much alive and thriving) and son’s memory to not just survive but to thrive.
Over the past few years the notion of enjoying something or loving life felt abhorrent to me. How could I do that when my daughter and son are dead? This abhorrent feeling has now been challenged by my rainbow baby who, as anyone who has met her will tell you, is larger than life and lights up a room as soon as she enters it; truly as her name means a Goddess of Light. How can we not strive to now enjoy life with her? I know Violet would want her sister to have a wonderful life and for us to enjoy our time with her too.
My why in John Lewis giving me the look that says “what are you doing mum”
Now my heart is finally fixed it is surely not enough for me to just survive life?
It made me think that the last few years have been about me working hard to continue on with life, to go through the motions and to try to rebuild my confidence, by to a certain extent, doing the same things I used to enjoy and have always loved doing.
I’ve re-evaluated a little now and thought about the things in my life that despite childloss I actually enjoy. I love photography. My hubby bought me a camera for Christmas after we lost Violet to try to encourage me to take photos of landscapes and architecture, which were something I enjoyed. Check out some of my photos in my gallery here.
Confidence loss is real after child loss. A friend a few years ago suggested my photos were good enough to be exhibited (I laughed it off), another friend offered to display my photography for sale in a boutique hotel (again I laughed it off as felt it was certainly not that good) and then more recently another close friend and client suggested I really need to do something with my amazing photos. Even just typing this now a little voice of the old me (pre-child loss) is screaming in my head “take every opportunity” as the old confident me used to seize every moment and opportunity that passed her way.
I suddenly realized and recognise that I need more confidence in my abilities again. That I should invest more time in this hobby that I enjoy and that people seem to think I have a talent for. I’m now doing a Diploma in Photography to improve my technique and confidence. Another friend has now offered to feature my work on the front covers of his magazines. Wow just wow I’m blown away and for the first time I’m going to seize this opportunity rather than just brush it away as I have in the past.
Travel is another biggie for me. I’m a travel PR at heart and I have a real passion for this industry. A friend told me about a new type of business where you can qualify as an Independent Travel Agent working from home and fit the training in around your current lifestyle and work. So I decided in my new “thrive” mindset to go for it so I have now qualified as an Independent Travel Agent and this I feel will be a game changer to my family’s long-term happiness. We love to travel. We don’t travel anywhere near as much as we did but I love travel. I love talking about it. I love planning it so why not utilize my passion to help others?
We have family and friends all over the world so why should we not be able to earn commission whenever we travel to see them. I love travel and have been to nearly every continent on earth so why should I not share my passion with others. If I can help them to plan and book their dream trip then this is amazing. If I can help them to do start this business too so they earn commission from their own travel also amazing. This is a business that neatly weaves in with my PR career and my photography passion too plus I get to take the family along for the ride.
I’m going to try to write a little more in my blog about motivation and health too as now my heart is fixed as I need to get active and back into shape again. Don’t get me wrong I won’t be running any marathons anytime soon but would be good to get healthier.
Also going to continue to renovate our home hopefully to make it a nicer place for my daughter as she grows and my hubby.
I plan to work further on charitable causes too to build a legacy in my son’s memory so watch out for something happening Spring 2021!
Thought I’d post this cute video just because….
I’ve now had a spring clean of my life. How about you what do you hope to change or build more of now spring is here?
If you want any advice or to share your hopes then I’d love for you to get in touch or post on here.
Big love
Sarah,
Always Violet Skies xx
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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?
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.
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.
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.
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.
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”.
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?
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
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.
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.
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 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.
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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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
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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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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.
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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