Tag: child

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

by Categories: Childhood illness, corona virus, Ill child, Sickness, UncategorizedTags: , , , , , , , , , , , 2 Comments

Surviving after Child Loss

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Whilst I was sat on a train heading to Glasgow earlier this week I decided to write a few blog posts touching on subjects people have been curious about.

How do you cope with losing a child?

People often ask me about how we coped with losing Violet and about the techniques we employed to try to help ourselves get through this time.

Force yourself to do things

We tried to remember what we enjoyed about life when our daughter was still with us. We focused on making ourselves do these things even though we didn’t want to and certainly didn’t have the motivation.

It all began with us still going on a mini-break to the Lake District only a few weeks after she had died.  A break we had already planned and paid for when our daughter was still alive.  That trip was an extremely hard one for us and we only stayed there for the bare minimum of time. 

We also had lunch at L’Enclume that I had arranged as a belated birthday surprise for my hubby months earlier.  We just went through the motions and returned home early on the final day as we felt lost.

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Cartmel, Lake District

What did you enjoy before?

The things we had enjoyed doing as a family trio were travel. Violet was a true jetsetter and travelled more in her short life then many adults do in theirs. We also liked dining out in new places. 

Admittedly the fondness for dining out was more mine and my hubby’s as Violet disliked food although she did enjoy people watching.  She was always good as gold too preferring to use high chairs to rest her books on for reading. She often got praised by staff for how clean and well behaved she was.    

I work in travel and hospitality PR so my work has always channeled my passion but I felt as though this love had disappeared with Violet.

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Violet watching the Snoopy film on the flight to New Zealand at 7 months old

After the initial Lake District trip we continued to make sure we planned and booked other things in advance. Then we had less chance of being able to back out and change our minds at the last minute.  Don’t get me wrong there were quite a few dinner reservations we made and then couldn’t be bothered going to. Or arrangements with friends we had to back out of as we simply couldn’t face it.

Remember to mark anniversaries

We jointly decided that we should focus on ensuring, despite our misery, that we booked restaurants or mini-breaks for anniversaries and birthdays.  We encouraged each other to make an effort to keep the reservation. We often found that only one of us would wobble and want to back out of plans.  So we worked as a team to persuade each other knowing that it was for the best in the long run.

Book things in advance

We planned trips to places we had already wanted to visit but only for a few days at a time. We knew a big trip would be too much for us.  Places like Florence in Italy for Valentine’s day. Bilbao in Spain to visit the Guggenheim. Montenegro to escape for Violet’s anniversary. Morocco to escape Arthur’s due date etc.

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Sunset in Bilbao, Spain

Slowly but surely after nearly 2 years I can now talk again about travel being a passion of mine without instantly feeling guilty about it. Now I realise that this was also a passion of my daughters and something she would still relish if she was alive today.  I also embraced a new hobby for photography, especially landscape and architecture.  All the photos in this blog are mine.

Always a work in progress

I’ve not yet gotten there with the dining out thing. I’m still fond of food and work in hospitality however we don’t dine out as a couple anywhere near as much as we used to.   I know in time we will and this will be easier too. 

To the “friend” that said to us after Violet died “well at least you can now travel whenever you like and dine out whenever you like”. Well we did travel and dine whenever we liked with Violet. She loved it and we can nearly do this again without pangs of guilt and imagining what she’d have thought of it/been like in these places. Every day is tough.  It’s not as easy as “at least you don’t have to arrange a babysitter” that we’re constantly told by people.

Hang in there with everything in life some things take practice.

Love Sarah

Always Violet Skies x

by Categories: eating out, Florence, Food, Heartbreak, restaurant, Tasting menu, UncategorizedTags: , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

No answer and no conclusion…as yet

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It’s very true that no parent can imagine the pain of losing your child or baby until it happens. It might sound like a cliché but your world, as you know it, really does come to an end.

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Violet’s grave in Southern Cemetery that’s now also Arthur’s resting place too

Cause of death

It is hard enough when you are given a definitive cause for their death through a post mortem report but what happens if it is inconclusive and you have no answers?

Inquest for the truth

If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead.

We wish she was still alive because she’d be two and three quarter years old now!

Delays in answers

We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital. It was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing, that will then be a whole 20 months after her death. It makes us wonder whether those involved with her care will even remember events and actions from that long ago?

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We took new balloons to our babies today – Violet would have loved the dancing monkey

In limbo

In the intervening 20 months of our lives we have been in a state of limbo awaiting answers. We have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request. Even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust. Even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.

Rainbow baby number 1

In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital. Who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems.

We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious. It must be something super rare or undetectable by today’s technology.

No reason why

The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things. The practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.

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Has anyone else gone through something similar? I’d be interested to know.

Sending lots of love & hoping for answers soon.

Sarah x

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Rainbow pregnancies, hope and mindfulness

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Arthur was our rainbow baby & gave us hope.

When I was pregnant with Arthur I remember we were so happy and filled with hope for the future; even more so after his 16-week scan where they checked his heart and confirmed that unlike his older sister’s it was perfectly symmetrical.

I threw myself into getting prepared for the new pregnancy and baby, which included signing up for Pregnancy Yoga and Pilates courses.

Mindfulness

I remember I was so looking forward to the classes. They’d give me chance to focus on this new little life inside me and to try to be positive about the future. I was also looking forward to building a support network of new friends who would be pregnant like me and so would be able to share the experience with some peers too. We’d done NCT classes when pregnant with Violet and gained friends from it. They were then like a support network through pregnancy and baby’s first year.

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How chilled out I felt after the first Pilates session

When I registered for the classes I made sure to let the organisers know my sad story about losing Violet the previous September and she said she’d make the teachers aware of this.

Anyway my first class, which was Pilates went well and afterwards all the participants chatted together about their pregnancies. It was very welcoming and inclusive just what I’d have hoped for.

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How I hoped my pregnancy yoga would be

My second class, which was Yoga wasn’t anywhere near as relaxing or positive as I had hoped it would be. Lots of the same ladies were at this one that had been at the Pilates class, so it started off very friendly and welcoming again at the start.

Lack of communication

We then took our places and mats to begin the session. The teacher announced that she wasn’t the one we were meant to have and she had been asked to step in at the last minute. Still no red flags in my eyes.

Then she asked everyone to begin by introducing themselves, what stage of pregnancy they were at and if it was your first baby or not. If it wasn’t your first baby then how old your other children were? Were they looking forward to their brother or sister? I felt my positive little safe space and new support network crumble like a house of cards!

Honest words

They went round the circle and I was one of the last, so I spoke about my second pregnancy. I told them all that I had had a little girl who died at 15 months old, just 9 months earlier. How I imagine she’d be delighted to have a new brother or sister but alas she was no longer here. There was total silence and shock in the room you couldn’t even hear anyone breathing. Finally the teacher said how sorry she was to hear the news and thanked me for being so honest in sharing with the group. I remember everyone being in shock and blankly staring at me. Even when the final girl had started talking about her pregnancy, they were still in shock looking at me. How I managed not to break down I don’t know.

Longest yoga class ever

Then we moved on with the class. I think it was the longest Yoga class of my life. Only one of the other participants looked over and smiled at me, reassuring me to check I was ok. Most other class members even those I had spoken to at the earlier Pilates class now avoided my eye contact. At the end of the class the majority of people rushed off desperate to escape quickly, so they didn’t have to face speaking to me or dealing with any emotional heartache. Perhaps they were worried I had some contagious “all my kids die” disease. Maybe they are right?

The one girl who had smiled at me earlier, came up saying how she was blown away by my strength and she just felt the need to give me a hug. The teacher then apologised for having put me in that position in the first place. She said how brave she thought I was, that I had shared what happened so honestly with the group. Then the tears came and I found myself crying all over the teacher and this poor girl who was 40 weeks pregnant and due to give birth anytime!

Devastated

When I got home I was so upset I wrote to the organisers to say how a class I was supposed to find relaxing had become super stressful and emotionally fraught. It certainly wasn’t the Zen experience I had hoped for! They apologised for the miscommunication with the stand in teacher and said they’d give me an extra session for free if I continued with the course. They reassured me all teachers would be briefed about my situation.

I continued with the sessions (Yoga and Pilates) but they just weren’t the same, as I now received pitying looks from all the participants who simply felt sorry for me. The welcoming feeling I had felt at that first Pilates session was now gone and I was an outcast in the group, cast aside by the others. A few of them occasionally spoke to me but it was more so they could settle their curiosity about what had happened to Violet.

Don’t get me wrong if anyone had openly asked about Violet or whether I had other children, I would have told them the truth anyway. I would have preferred a chance for them to get to know me a little first, before they learnt my sad news as that’s the basis of friendship. It needs to be built from mutual understanding and shared interests rather than pity.

Hope shattered

Then when I lost Arthur at 22 weeks of course I contacted the course organisers and they refunded my subscription costs. I asked then perhaps if I could switch onto a postnatal Yoga course so I could try to heal. I was told that they didn’t advise this as it would be too emotionally distressing as everyone would be talking about their babies and my story would upset everyone else in the class too. Instead I was recommended to try some other sessions that after further research were designed for the elderly and infirm. I decided I couldn’t face attending a class full of geriatrics!

I was devastated that when you think of how many women sadly go through miscarriages, stillbirths and other troubled pregnancies that there are no Yoga or Pilates classes designed for those who have suffered loss. Surely we need it even more than those who have birthed a healthy baby who is still alive?

Love Sarah x

Always Violet Skies

You might be interested in these blog posts –

Somewhere after the rainbow

Grief is like a shipwreck

Lonely

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Count your blessings

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It’s not all doom and gloom when you’re grieving the death of your child strangely enough there are lots of positives.

Appreciation

The main positive to come out of it is that you really appreciate the good in life and the usual things that would have brought you down really don’t matter anymore. So what you get a parking ticket, ladder your tights or forget to take an umbrella out with you, so you get drenched in that sudden rain shower.

All these things at one time would have stressed me out but now I simply shake things like that off, as in the grand scheme of things unless someone has died or been told they have something incurable then it isn’t really bad news compared to your child dying?

We’d happily give up anything to get our daughter back. If someone wanted me to sign over everything I own to live on the streets or to kill myself in order to get her back then I would do in a heartbeat.

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Violet loved playing with her drum & other instruments

Empathy

The only issue with not being as fazed with day-to-day incidents, is that it reduces my ability to sympathise or empathise with others. If someone has also lost a child, found out they have cancer or face losing a loved one then I know how to relate to them. I understand totally how to empathise with that situation. However if I meet someone who tells me what a nightmare week they have had because they broke a heel on their favourite pair of shoes, had something go wrong with a client at work or have a child that’s teething, then I really find it difficult to sympathise with this.

In fact it often irritates me and makes me annoyed that to some people this is the extent of their bad week. I would love for that to be the worst thing that has ever happened to me!

I feel myself having to practise saying “oh dear I’m sorry to hear that. Poor you” without sounding sarcastic; when I really want to say “pull yourself together”, “get a grip” and “worse things have happened, man up would you!” “You could be like me and have a child die now that’s a bad week!”

Drama queens

I find it so hard to tolerate drama queens too and we all know some. Where chipping their nail varnish is a disastrous day and their boyfriend or husband working late is a nightmare. I simply try to avoid these people now, as they have no idea about the normal world and yes there’s sometimes a sweet innocence about them that you have to love. Currently I find them so frustrating that I almost have to resist the urge to shake them.

So if you need a shoulder to cry on or a friendly ear for a “real” problem then I’m all ears with tea and sympathy but if your problem isn’t life threatening. If it has to do with not being able to find the right dress, then please forgive me if I don’t sound sincere when I say “poor you how awful”.

Love, Sarah x

Always Violet Skies

You might enjoy reading these posts –

The Small Things

A Literal Broken Heart

Party Girl

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Imagination

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It may sound daft but sometimes when I get up in the morning and make a brew then sit down in my ever so quiet house to have breakfast, I like to imagine what the me in a parallel universe would be doing now.

A Parallel Universe

If parallel universes exist that is, and I was never a huge fan of science fiction, but it’s one thing that gives me a strange comfort.  I like to think there’s a me out there that’s heavily sleep deprived, complaining to friends about her 2 year old daughter’s tantrums and how her newborn baby who doesn’t sleep keeps getting nappy rash!

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A mother & children on Essaouira beach, Morocco at sunset

The other me will be struggling to juggle the demands of motherhood with two children, work, a husband and trying to stay sane.  Her life would be crazy, noisy and sleep deprived but it will also be full of love.  However she doesn’t realise how truly lucky she is and stresses about how she’s concerned her children aren’t developing at a normal rate.  Are they eating enough? Are they growing?

Optimism

This other parallel universe me has never had to face losing a child so she’s still full of the naive blind optimism I see in other women and people everyday.  The way I used to be. When bad things happened to other people not to you, and whilst you were concerned and saddened to hear of others bad luck, even raising money to support these people, never in a million years would you think it’d happen to you.  It gives me comfort to think there’s still an innocent me like that out there somewhere.

Reality

Anyway then I return back to my reality of being able to eat a quiet breakfast with only the demands on my time from a dog wanting a walk and of course that of my clients at work.  So begins another week for me…I hope you all have a good one!

Love

Sarah

Always Violet Skies

You might enjoy these other posts –

Somewhere after the rainbow

When you get your rainbow what then?

All about May

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My Story

I am a proud and heart-broken mother to two angels.

My first angel

My first born was a beautiful baby girl named Violet who beat all the odds after she had open heart surgery at just 4 days old at Alder Hey Hospital. She lived a full and happy life for 15 months until passing away suddenly at Manchester Children’s Hospital. We didn’t know what happened and the coroner launched an inquest (read about it here)

Swimming shot

My second angel

My second angel was our rainbow baby Arthur who was born sleeping at 22 weeks, almost a year after Violet passed away. He was a TFMR and had severe brain abnormalities.  He gave us so much hope for the future and when we lost him in September 2017 we felt as though our hope for the future died with him. (read more about it here)

Graves

The last few years

It has been an extremely devastating and challenging few years for both me and my husband. Despite all of this devastating news we still strive to make the most of our lives, as we understand how fragile life is and how much our daughter Violet loved life. She wouldn’t want us to mope and suffer. We’ve learnt to be grateful for the 15 wonderful months we spent with her, that we might not have had if it wasn’t for the top NHS heart surgeons and care at Alder Hey Hospital we had in the very beginning.  To them and especially top heart surgeon Mr Prem we will be eternally grateful. (link to our fundraising here)

Violet Skies

A friend of mine suggested (over a year ago) I try to help others by giving advice and strategies for coping with loss. So this blog has been a long time coming but I have waited until I felt strong enough to share. It will detail the ways in which I have tried to deal with everything in case it might help someone else who has unfortunately found themselves in a similar situation.

It won’t all be heavy or emotional reading though as lots of my coping strategies include travel, eating amazing food and architecture/interior photography. Hopefully it will make enjoyable reading for those out there that are lucky enough not to be in a situation like mine. It will be full of photos showcasing some of the amazing places we have travelled to and the things we do in memory of our beautiful children.

I hope this site can give others inspiration and hope to overcome anything they are currently battling with in their lives.

Love & hugs,

Sarah

Interesting blog posts –

Pregnancy after loss & PTSD

What happens when you get your rainbow

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