AvMA a virtually unknown charity

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Most people have never heard of an amazing charity called AvMA – Action Against Medical Accidents, probably because until the worst happens you have no need to seek them out.

Introduced to AvMA

We were introduced to this organisation by the Manchester coroners office, when we were first informed that there would be an inquest into our daughter Violet’s death at Manchester Children’s hospital.

The coroners team said it was highly likely that the Manchester NHS trust would employ their own barrister for the hearing, when it finally happened, and that they wanted us to feel supported, as though someone is on our side. They said they didn’t want us to be bullied by the trust’s representatives and that an organisation called AvMA might be able to help.

Legal aid?

You may now ask “well what about legal aid?” It turns out that no matter what your financial situation in this circumstance legal aid is not available for an inquest hearing.  Can you imagine the additional heartbreak and stress for anyone who is grieving a loved one and believes their death might be because of negligence or an accident but has no free legal support?  We were quoted upwards of £1000 by several solicitors to pay for legal advice and support for the inquest.

No win no fee?

You may ask “what about no win no fee” though but this also isn’t available for a coroner’s inquest as this hearing looks solely to find the cause of death not to apportion blame or result in any type of compensation.  In order to get a pay out you would have to have a separate legal proceeding in front of a judge rather than a coroner and this would be after the inquest and is a separate legal action entirely.

AvMA

AvMA provides free independent advice and support to people affected by medical accidents (lapses in patient safety) through a specialist helpline, written casework and inquest support services. They can put patients in contact with accredited clinical negligence solicitors if appropriate. They also work in partnership with health professionals, the NHS, government departments, lawyers and, most of all, patients to improve patient safety and justice.

Our case

For us it meant having a trained barrister examine all the documents associated with Violet’s death and care whilst in Manchester Children’s hospital. This proved invaluable to us as she requested certain things we hadn’t noticed were missing, such as when we asked for a copy of Violet’s medical records the hospital hadn’t included any of her X Ray results, of which there were many. We then had time to request them ahead of the hearing.

Violet in Children's hospital MCR
Violet in hospital watching TV

Judy, the barrister that volunteered her services to us, was amazing. We had a conference call with her a few weeks before the inquest and were pleased to see that she’d pulled together a list of her main concerns that all tallied with ours. She had done extensive research, including combing through not just the post mortem report but also the medical reports and all of Violets notes (that we couldn’t bring ourselves to sift through again). She also consulted various medical professionals she knew to get their advice on things.

Support during the inquest

At the inquest itself both Julia the representative from AvMA and Judy our barrister were amazingly supportive. Judy asked all the questions we wanted and cross examined some of the witnesses, the various specialists and consultants responsible for Violets care while she was in the hospital. We passed Judy notes from the table behind with any additional questions that came to us while they were giving evidence, and before the coroner had finished with a witness, Judy always double checked with us that there was nothing else we needed to ask.

Saved further emotional trauma

I was originally instructed by the coroner to read out the police statement I had given immediately after Violet died and Judy said she could ask for me to be excused from doing this because I was heavily pregnant and the additional stress it would cause.  We didn’t even realise this was an option and the coroner said he would admit the statement to the records as a printed document instead.  This saved me having to undergo further emotional distress on the day.

Violet on 26th Sept 2016
Violet playing with her balloon the morning of the day she died

Outcome

Ultimately the inquest couldn’t bring Violet back and we got some answers but not really the resolution we wanted. However I’m not certain we would have received these same answers if we hadn’t have had AvMA and Judy helping us. It was a traumatic day with lots of tears, so I doubt we would have had the strength or wherewithal to ask so many questions ourselves. Their help and support at what was an extremely vulnerable time for us proved to be priceless.

Legal expenses

Judy and AvMA only invoiced us for their expenses, which totalled less than £200, including travel costs from London and an overnight stay, so when you consider the thousands a barrister would normally charge this was a bargain. We’ve since given a larger donation to the charity too, so we can help them to help someone else like us who find themselves in an impossibly heart wrenching situation.

Caring charity

AvMA operate as a charity offering support to parents and families like us whose loved ones have died or been seriously injured because of what might have been a medical accident.  This will be the hardest most traumatic time in their lives and as a result they are certainly in need of support, especially around something that could result in answers, justice and in the case of proven negligence, when someone is seriously injured, later on a possible future financial payout too, that could make the difference to quality of life.

I know this charity isn’t as attractive or as immediately heart tugging as a animal, Children’s charity or a cancer cause but rest assured they can make a huge difference to people’s lives at a time when there world has just ended.  When they are already struggling to deal with the grief and shock of losing someone, in our case our 15 month old daughter.

It won’t happen to me…

You never think this type of thing will happen to you. That one day your perfect little life bubble could burst and you lose a child or someone close to you but if this happens then you certainly need legal support from someone like AvMA as life at this time is overwhelming and devastating enough without adding a looming inquest to the list.

If you can afford to donate to this amazing charity, even if a small one, then please do so as you could help someone like us who has said goodbye to their child. If you’re a legal professional and would like to donate time or expertise to work with the charity to help someone like us then please do take a closer look as we’re so grateful to Judy for giving up her time and expertise to help us.

Barristers donating time

Judy explained to us that she understood a little of what we had gone through with Violet, as her daughter had been premature so she had spent lots of time with her in hospital and luckily she was healthy now but she knows how scary it can be to be a parent of a sick child.  She said she can’t begin to imagine then losing them and then the stress of the coroner deciding to launch an inquest into what happened too.  After reading our case she felt compelled to help us.  A truly wonderful lady and we will be eternally grateful to her for her help and compassion.

Here’s a link about AvMA please take a look and consider giving them some support if you can

Thank you

Sarah, Pat & Angel Violet

Always Violet Skies xxx

Pregnancy talk

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I’m now heavily pregnant so that means that strangers and anyone I meet can tell instantly that I am with child, which is fine I’m happy to talk about it. 

Is it your first?

The difficulty comes when they ask if it is my first pregnancy and I have a policy of always telling the truth so when I say it is my third.  I get comments like “wow you’ve got your hands full then”, “you must really know what you’re doing”, “you’re a glutton for punishment” and “are your other two excited about their little brother or sister”.

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A photo I took of a mother with her two children paddling in the sea in Morocco

Try to move conversation on

Often I let them make a comment and then I move the conversation on without having to tell them that neither of this baby’s siblings are alive.  Occasionally the person I’m talking to will bring the conversation back around again by asking what my existing two children are? Are they boys or girls?  Then I have to explain that they were one of each but unfortunately they are no longer with us. I’m sure they would have been excited to have a little brother or sister.

What happened to your first two?

They then usually ask me what happened to my first two children and I tell them honestly or they nervously say “I’m so sorry” to which I answer “it’s ok” when clearly it isn’t then the conversation moves on.

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Third time lucky?

People often tell me “oh hopefully this one will be third time lucky then” and I know this comes from a very good place filled with love. I know we were very unlucky to have had the situation with Arthur but I don’t feel we were unlucky to have had Violet.  I know we were extremely fortunate to have known such a special little person if only for 15 months.  We were very unlucky to have lost her but would happily repeat the time over again and again in the style of Groundhog day if we could – well maybe not the very last 6 hours or 10 days in hospital!

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Here’s Violet having a showdown of attitude with her bigger cousin Evelyn.  Sometimes I wonder what she’d have been like as a sister.

It makes being pregnant bittersweet and we are simply hoping this time to have a stress free birth experience too, as with Violet bless her we certainly had a lot of drama.

Love Sarah

Always Violet Skies x

Violet’s third birthday

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Last week was a hard week for us as it was our daughter’s third birthday. Along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.

Violet at Alder Hey
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.

First 10 days in hospitals

This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital. In Liverpool she had open-heart surgery at just 4 days old. 

We had to sign a million legal forms and contracts saying we knew the odds were stacked against her.  That we knew she might not survive and return alive from the operating theatre.   And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”.  We also knew her chance of survival without the operation was nil. She was only alive because of the additional hormones and support she was being given.

Off for heart surgery at 4 days old

I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit. We didn’t want her to be alone without at least one of us.  I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could I was discharged to head over to Liverpool.

Me & Violet at Alder Hey
The second time I held her just before her heart operation

We told her about exciting plans

The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital.  We chatted about all the different people she would meet, describing friends and family members to her in detail.  We spoke about all the places we would take her to including New Zealand to see her Uncle Tom. Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon.  We chatted about her Grandma and Nanna.  Said she would learn to swim. 

We basically described to her then the life she ended up having crammed into a 15-month period.  I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!

Me & Violet in Cyprus
Violet in Cyprus in April 2016

The journey to operating theatre

When they took her down to the operating theatre I couldn’t watch. I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing.  Her brave daddy on the other hand walked her down to the operating theatre. Talking calming to her the whole time reassuring her. Reminding her how much she was loved. How strong she was and that she could do this.

Violet & daddy in Alder Hey
The bond between father & daughter was strong from day one

Then we waited for an eternity

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call. We finally received it saying she was out and still alive! We were so relieved but our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her.  We thought oh no this is where we get told something bad has happened. We were told the opposite that the surgeon thought it was an 100% success. He felt she wouldn’t need any other operations on that part of her heart again ever. 

You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix.   This is the reason we are fundraising in her name for Alder Hey. So superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.

Now it feels like a story

Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.

Thoughts of ordinary things

The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it. Buying her gifts, cards and organizing a birthday party for her.  Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.

Violet opening birthday presents
Here she’s opening first birthday presents & getting excited about bows!

Party and gift planning

This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old. 

Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets. Then on her birthday we distributed them all around the area where we live.  Including taking some to her nursery. Leaving some on the benches near the playgrounds in the local parks where she loved the swings. We left some near the mural on Beech Road that has a violet coloured balloon in her memory. Some near to where she attended Babel Baby classes. We placed some on benches in the cemetery close to her grave, after we took her birthday balloons.

The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.

Thanks for reading

Love

Sarah

Always Violet Skies xx

Travel – A few days in Switzerland

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I’m not a stranger to travelling alone having worked as a PR for travel clients I have travelled all over the world on my own so when a friend who was working in Switzerland invited me over for the weekend I jumped at the chance.

Basil and Zurich

I got a cheap flight to Basil from Manchester and then got the train to meet my friend in Zurich.  I’d been to Zurich before as I used to have a Swiss client but I had only actually experienced it in torrential rain looking grey and miserable.  It was great to see the place flooded in bright sunshine and we walked around the beautiful old town and by the river.  It was stunning.

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Villa Honegg hotel spa

Early the following morning we got the first of many train journeys to visit one of the world’s best spas inside Villa Honegg Hotel in Ennetburgen.

It truly was one of the most breathtaking spas I have been to with a giant outdoor hot pool that looked out over the Swiss Alps and Lake Lucerne.  It helped that we had glorious sunshine and a cool breeze that came down from the snow capped mountains.  The spa is sat on the side of a hill that was surrounded by farmland lower down and flower filled meadows in front of it.  Inside the spa there was an indoor spa pool and sauna facilities too.

The hotel had a restaurant that overlooked the spa with an outside terraced area so we ate lunch there with again stunning mountain views before we departed for the train station once again to continue our journey this time several hours travel to Interlaken.

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Airbnb in Interlaken

Interlaken can be described as the tourist centre of Switzerland with coach loads of Chinese, Korean and American tourists arriving into the town in order to explore the nearby sights.  We even noticed they have a Hooters bar to satisfy our friends from across the pond. The town offered a vast choice of accommodation including high end hotels and back packing hostels.  We decided to book an AirBNB apartment as we were only staying for one night – would be arriving late and leaving early the next morning.  The split level studio apartment was to a contemporary loft design, owned by the artists running the nearby modern art gallery, and was practical and functional with what we needed for a one night stay.

Jung Frau

The following morning we headed again by train to climb Jung Frau the highest mountain in Europe.  We stopped off in Grindelwald a very stunning Alpine town half way to Jung Frau that sounded like it belonged in a Harry Potter book.  It is used as a base for hikers and skiing enthusiasts.  It was breathtaking surrounded by snow-capped mountains.  I could happily come back here to stay for a few days and enjoy the mountain air. Apparently this was the place Heidi was filmed.

Grindelwald

We only stayed in Grindelwald for a quick coffee and then continued our journey up Jung Frau by train on the highest train line and ultimately train station in Europe.  The sun was still shining so when we hit the snowy surrounds I was relieved to have my sunglasses.  This was the most scenic train journey I have ever been on, absolutely stunning views from every direction and we climbed so high our ears reacted as they do on a plane. Once we reached Jungfrau station we then had to continue on foot to the Sphinx observatory, the highest point in Europe and it was truly spectacular.  My friend even stripped off her layers as the suns reflection on the deep snow was so warming.  Some of you James Bond fans may recognize the setting here as it was featured in Her Majesty’s Secret Service.

Lauterbrunnen

On our way back down the mountain we stopped off in Lauterbrunnen another pretty village this time it is one with stunning waterfalls where we enjoyed some dinner and chatted to some Australian tourists (yes they get everywhere!) before heading back on the train to Zurich via Lucerne.

Cham on Lake Zug

The following day I enjoyed a leisurely lunch in Villa Villette in Cham on the banks of Lake Zug before catching the train back to the airport for my flight home.

Switzerland Travel tips

Flights – I flew to Basil from Manchester with Easyjet however the trains are so efficient in Switzerland that it could be cheaper to research travel into various different airports.

Train – I recommend you purchase a Swiss rail pass if you plan to travel around as we did as this as it is the most cost effective way to travel.

Luggage – there are inexpensive luggage lockers in most train stations in Switzerland so you can leave items as you travel to collect as you pass through the main hub stations to collect on way back.

Accommodation – there’s a wide choice of accommodation in Switzerland but if like us you simply need a bed for the night then take a look at sites such as AirBNB that can be more cost effective saving more money to spend on 5 class spas!

Happy travels!

Love Sarah

Always Violet Skies x

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

Somewhere after the rainbow

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Everyone talks about “rainbow” pregnancies and what a blessing they are.

Joy of a rainbow

It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life.  We had hope for our future, as a family and truly believed the sun was shining on us again.

Optimism for future

Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok.  We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.

Arthur scan

Finally announced our pregnancy

We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting.  That in January 2018 Violet was going to be a big sister.

Bad news at 20 weeks

Then we had the 20-week scan.  Arthur’s heart did still look ok but what didn’t look right was his brain.  The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist.  Our world crumbled.  We then had to wait over a week before we could see a specialist to get more details.

Heart broken again

We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain?  The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.

You can’t repair a brain

When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan.  The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain. 

His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die.  His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.

TFMR

We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy.  Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear.

Having to give birth to him was traumatic and extremely upsetting.  We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair.  We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.

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Guilt mixed with grief

We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too.  In a way this makes it easier as we have constant beautiful reminders of our memories of Violet.  I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.

The world can be cruel

Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway.  Never been able to breathe or swallow unaided if he had survived to full term.  It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear.  I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.

After the rainbow

People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again.  I’m often asked why I don’t believe in God and this is the reason why.

Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?

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We look for the next one I guess and try to keep positive.

Lots of love

Sarah

Always Violet Skies x

Anniversaries of loss

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Anniversaries after loss are always really hard for all those family & friends who were close to the loved one.

Commemoration

Talking from experience it really does help when others remember our cherished one on this day and when they commemorate their memory in some way, it reassures us that their legacy will live on.

Bee mural

Never forgotten

Our worst fear is that our much loved child, brother, sister, mum, dad, family member or friend is forgotten so today take the time, observe the silence at 2.30pm today, light a candle, say a prayer or just give a thought to all those who lost their lives in the Manchester bomb last year and know by doing that you are fulfilling the wish of their families and friends in that they are not forgotten.

We will not forget them. Bee strong everyone. 💜🐝

Bee image

The Light at the end of the Tunnel?

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Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.

Inquest

Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.

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Will this be the light at the end of our tunnel?  (photos taken beneath a glacier in Iceland)

AvMA

Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.

Questions for barristers

My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.

Violet on 26th Sept 2016

Stress and worry

The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.

I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.

Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.

Love Sarah

Always Violet Skies x

Delivering good news

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Pregnancy news

Delivering the wonderful news that you are expecting a baby is usually a happy time and I’ve seen people make announcements in the most creative ways via social media. Including an older sibling announcing they are going to be a big brother or sister, a written sign in front of a pet dog, a cutesy family cartoon and even an eviction notice on the side of an older siblings cot. There are of course those that simply post the classic 12-week scan photo with their announcement.

Arthur scan
Arthur’s scan photo

Baby news can be a kick in the teeth

For those of us who have lost babies, or perhaps are struggling to conceive a much desired baby, seeing these posts can feel like a real kick in the teeth or like rubbing salt into our open wounds. Of course we are delighted by the announcement and pleased that someone else, a friend or family member, has good news to announce but it still stings.

Violet in Children's hospital MCR
Violet in hospital

Personal rather than social media

We have some friends who kindly contacted us first to tell us personally about their news before they then announced it on social media and I felt this was an extremely kind gesture. If you have anyone in your circle of friends or in your family who have struggled to conceive or have had a baby die or have lost an older child, then please think about telling them your news in person before you announce it on social media to the whole world, as they can then prepare themselves for when they see it online. They will really appreciate the kindness of you telling them in advance of a more public announcement.

FOMO

For some people baby and pregnancy announcements can bring a whole new meaning to FOMO on social media!

Be caring and considerate to any friends who have suffered loss or struggled to conceive.

Love Sarah

Always Violet Skies x

A Literal Broken Heart

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When I was a teenager and even throughout my twenties I would talk about having a broken heart over an unrequited love or a relationship break up. Later on once I hit my thirties my parents 38-year marriage came to a sudden end and again I was “heart broken”. The world as I knew it ceased to exist. Then my beloved dog Max died suddenly that Christmas Eve and I was “heart broken” again.

Heart broken

It seems heartache and being “heart broken” is a familiar feeling that us humans often talk about but what I have experienced in the last few years shows that everything is relative and you can only compare the experiences you have been through personally. If you are fortunate to have only ever suffered the break up of a relationship then you will know this to be your worst emotional pain. If you have lost a relative or pet then this might be the worst pain imaginable.

Max
Max

Losing a dog/ best friend

After I lost my amazing dog Max I decided that I probably wouldn’t have another as the pain and grief after losing him I felt was unbearable, so I couldn’t face ever putting myself through that again.

Mother to a heart baby

Six years later I became a mother to Violet who was born with a heart defect. She had to be rushed into open heart surgery at four days old, the stress and anxiety during those nine hours she was under the knife was at the time I thought unbearable. We were so relieved afterwards when we were told her heart was a perfect fix.

Me & Violet at Alder Hey
Reunited for the first time in several days after she was transferred to Alder Hey in Liverpool & I was still at St Mary’s in Manchester.  Cuddles before heart surgery.

Anxiety

Every time she had to go to hospital for a heart check up of course we were stressed again praying all would be ok and it always was, until she was rushed into hospital with suspected pneumonia in September 2016. The anxiety during those ten days in hospital was again almost unbearable. I even told friends that there was nothing worse than watching your child poorly. Being tortured whilst doctors inject them/take samples and attach them to drips and there being nothing you can do to relieve their pain.

Violet in Children's hospital MCR.JPG
Violet during her time in Manchester Children’s Hospital in the days before she died

Death of a child

Then suddenly she died. Our precious daughter died. We then discovered a totally new level of pain and heartache that we had never even come close to before. Every other type of “heartache” I had experienced in my life until this moment paled in comparison. I actually felt my world had truly come to an end and the pain then and now is still sometimes unbearable. But bear it we do, as we have no choice in the matter.  It is indescribable to anyone who hasn’t gone through it and unimaginably scary to those of you who have children who are alive.

Metaphorical and physical

Anyway within six months of Violet’s death I discovered that not only do I have a metaphorical “broken heart” but I was diagnosed with an actual physical broken heart too. It was discovered that I have what they call an ASD or hole in between the top two chambers of my heart. I have a truly broken heart both physically and emotionally. How ironic?

Perspective

So life wise I guess the positive take on all of this is that it has helped us (my family) to put things into perspective. We no longer stress about the small things in life anymore and I tell myself that, at the end of the day, I have been through the worst thing imaginable, so everything else, including possible open heart surgery on myself is easy in comparison.

Dexter
Dexter

Everything is relative

Nine years after the loss of my beloved dog Max we adopted a two-year-old German Shepherd, as I now realise that I can cope with the loss of a pet if I can somehow survive the loss of two children. So we welcomed Dexter to our family and we now have a giant fur baby to look after who gives us unconditional love. What’s not to love about that, even if it only lasts for 8 years? It is relative after all and we have chosen to live in the present moment, as who knows if a bus will hit us tomorrow, so make the most of today folks always.

Love Sarah x