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.
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.
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.
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.
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.
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.
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.
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.
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.
Always Violet Skies
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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”.
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.
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 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?
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.
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.
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.
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.
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.
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.
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.
So at the start of this week I was supposed to be attending a family funeral in support of a close family member but we had a dreaded bug that floored all of us including my poor mum who had come to try to help. That was the first of two funerals for this week, the second was earlier today for a dear friend and business mentor.
In light of these I thought I’d write something about grief and try to give some advice to anyone who is trying to support a loved one through their heart ache. I hope this might help at least one person.
Grief initially is all consuming and you can literally feel as though you are drowning (read more about the shipwreck analogy here). It is like you are on a sinking ship so you might panic (panic attacks are common), you may have great despair and feel as though you have to fight just to keep your head above water. The feelings can be very different and unique to everyone especially depending on who it is who has passed and their relationship to the one grieving. Also timing plays a huge part in how severe grief can be too, whether it is how someone died (was there time for a goodbye), did they die far too soon or if the passing coincided with an anniversary or special occasion then that can heighten painful feelings.
Seven pieces of advice
My seven pieces of advice for anyone with a friend or loved one who is grieving is this –
Listen – always listen to what they are telling you. If they say they don’t want something then listen, regardless as to whether you think what you are suggesting would benefit them. They know what is best for them at that moment in time.
Check in – regularly check in with them so they know you care about them and tell them to let you know if you can do anything. Often the person is so consumed by grief that they can’t think of what to say and may answer, “I don’t know” so maybe suggest to them what you would like to do for them. For example “would you like to go for a walk?”, “would you like me to bring you dinner?”, “can I take you our for a drink somewhere?” or “would you like a spa day?”. All yes or no answers these closed questions are the best ones to use.
Ask first – If you’d like to drop them a meal round or call to see them ask first as it might not be a good time for them. Don’t just drop in.
One week – Ideally make a note to contact them a week after the funeral as this is the period after which many others will have been in touch and now the person is truly on their own. It is at this time the grief stricken one feels forgotten and as though the entire world has just returned to normal while they are still in pain.
Flowers – If you would like to buy flowers for the service then please check with your loved one as they may just want donations to charity instead. If you feel you’d like to buy them flowers personally then ask them first if this would be ok or take them a plant instead or if not suggest you bring them wine or chocolates instead. Some people when grieving hate flowers.
Change of mind – remember at the moment they are not thinking straight at all and their emotions are everywhere so give them leeway to change their minds. That’s why continuing to check in with them is so important as one day they might say they are fine and don’t need anything but on another day they might just need someone to go for a walk with or have a cup of tea and a chat.
Fresh air – don’t forget the benefits of exercise in the fresh air if your loved one has been cooped up inside then suggest you get wrapped up and go out somewhere for a walk.
So there you are my top tips for you for trying to navigate support for someone during the early stages of grief.
Please remember that with everything everyone is different and so grieves in a very unique way. They also will grieve differently depending on the person who has passed and their relationship to that individual.
I hope this is helpful to some of you out there. I hope so anyway.
If you didn’t already know this weekend marks the beginning of a New Lunar Year or Chinese New Year. As someone who has worked for and with Chinese focussed companies over the years I’ve probably been interested in Chinese New Year more than most. I also have a best friend who is Chinese and another friend who grew up in Hong Kong.
This Chinese New Year is even more special than usual however as it also signifies the reset of the twelve year calendar cycle. The rat is just the beginning. This new twelve year cycle gives the Chinese time to reflect on the last twelve years and make bigger plans for the next twelve too.
The year of the rat therefore often sees a time of great change so its quite apt that brexit will happen in the year of the rat lets hope the sinking ship analogy doesn’t apply here too.
The last year of the rat was of course twelve years ago and it saw great change for me. I had made the decision to quit my full time job at the end of the previous pig year and by the time the rat year started I had ventured into new projects in new industries. I started work on communications for a huge sporting event, alongside one of my friends, and started working with what would be one of my favourite clients the airline Finnair. I’ve now been working with airlines for twelve years! Wow. I also ended up setting up my own agency and continued to be my own boss.
Through working for this airline and other firms at this time twelve years ago I ended up meeting some of my favourite people and made some good friends that are central in my life still today.
The last twelve years saw significant personal change too. I met my now husband and married him. I became a mother 3 times. Unfortunately I lost my daughter and a son but we still have a little rainbow daughter keeping us on our toes.
I bought a house in Cyprus (you can rent it here) and a family home with the hubby too that we have been renovating. I’ve circumnavigated the earth more than 3 times visiting friends and family all over the planet. I’ve been privileged to explore new cultures and places.
I started a blog about childloss to try to help others and I’ve raised over £40k for Charity.
I finally finished the twelve year cycle by undergoing an operation to fix my heart, which thankfully seems to have been successful so now I begin a new 12 year cycle with a newly refurbished ticker!
I don’t know about you but I feel exhausted reading all of the highlights that have happened in twelve years 😂 interesting though to realise that the biggest shift career wise for me happened exactly at the start of the twelve year cycle shift. I hadn’t realised that until this weekend.
Here’s hoping any changes we all go through at the start of this rat year and brand new cycle are positive ones that work out for the best in the end so that by the end of the next twelve year cycle we can look back to see all that has been achieved then realise the effort was worth it after all.
I’m personally hoping for a slightly more peaceful and less dramatic twelve years but let’s see what happens. My life seems to have been non stop drama in the past twelve.
There’s also been a significant shift already in my professional life as I’ve started lecturing at university opening up a new avenue career wise alongside my consultancy business. I wonder what else this year will see, perhaps more opportunities.
Anyway no matter what animal or symbol you are in the Chinese zodiac here’s hoping the next year or twelve are good ones for you all.
Always Violet Skies xx
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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.
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”.
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?
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.
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?
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?
Always Violet Skies
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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.
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.
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.
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.
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.