It never used to be this way. I used to love September. It was always one of my favourite months.
The starting back at school with a new year of classes. I was such a geek I couldn’t wait. New pencil cases, stationary, new uniform and shiny new shoes always excited me.
Then there was the turning of the leaves and the beautiful autumnal colours. The amazing sunsets as the weather starts to cool. The wearing of cosy clothes – knee length boots, fleeces, jeans, jumpers & fluffy socks. Open fires, comfort food, hot toddies and bubble baths. Watching the rain from inside a warm house and listening to the wind whistle round the chimney.
Autumn sunset in Manchester city centre on border of Salford
In the last ten years I’ve enjoyed spending time in Cyprus where it’s like a second spring with all flowers having another annual bloom so colourful and cheerful.
However all of this changed in September 2016 when my precious daughter died and in the following September my son Arthur was born sleeping too.
All of a sudden the changing colours of the autumnal leaves began to represent death to me. The darker nights and chilly weather no longer cosy but depressing and miserable. The pouring rain represents the tears I now shed at this time of year and the wind howls in pain for my lost babies.
Autumn colours in Chorlton
I can’t face visiting my cheerful uplifting place either in the Cypriot sunshine with colourful flowers and amazing views as last time I was there I was with my daughter, but maybe I will visit again in the next few years.
This year in order to attempt to focus on something else, something much more positive, I decided to organise the Violet ball in memory of my beautiful daughter on 29th September, a few days after the second anniversary of her death, to raise money for Alder Hey hospital’s cardiac surgery fund. I hope those of you who are able to join us do so and that we all see the month of sad September out with a bang.
Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy. Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath. If he had he would technically have been alive.
TFMR
He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post). We knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision. We still wondered and worried as to whether we were right.
Already grieving
We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother. We entered a period of darkness even darker than we could imagine. The little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur. A few months later we got the surprise news of another pregnancy. A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.
Aurora
Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.
Aurora at 3 weeks old.
We named her Aurora as it means “Goddess of the Dawn” and “Light”. We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.
Arthur
Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.
He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital. We set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here. There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.
Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too. I am a mother of three not one.
Midwives
The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.
In a way this is probably also now the reason why both departments are now OTT with our care.
Me (tired & make up free but happy) with Aurora
Are you sure you’re ok?
Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time. Although I’m led to believe this also happens often when you have multiple children who are alive too.
Anyway got to dash baby waking for a feed…thanks for reading.
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 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 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
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”.
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.
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!
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.
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.
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.
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!
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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?
We look for the next one I guess and try to keep positive.
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.
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.
