Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end” Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?
Rainbow pregnancy
When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.
I’m a mother of three
Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child. When you have a new baby you don’t throw your old one away and forget about them do you? Or you shouldn’t. If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?
Moving on?
I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.
Side swipes
I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.
I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.
The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler. That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?
Family photoshoot – credit Manchester Photography courses
I wonder what Violet would have been like today and what she’d have thought of her baby sister? Do you ever wonder what if? I do every moment of every day.
Some of you who read this blog, know me or just follow me on social media may be aware that my daughter Violet died at the end of September but what you might not realise is that her funeral coincided with baby loss awareness week 2016. The second anniversary of that is today.
2016
At the start of this week in 2016 we got the news that the coroner was releasing her body so we had to finalise things with the funeral directors and to make arrangements for her funeral, including making decisions like cremation or burial. We decided to bury her because I couldn’t face the idea of my baby being burned. Crazy I know as she was dead already but I still felt as though I was protecting her little body by burying her instead. Then we had to decide where to bury her and to pick a plot.
Choosing a burial plot
We decided on southern cemetery as it was close to where we live and there are lots of important and respected people resting there. I know it seems ridiculous but I felt as though she’d be in good company alongside Elizabeth Gaskell and Anthony Wilson – if it’s good enough for them then….
I remember us visiting Southern Cemetery and one of their team taking us to show us the baby section of the cemetery. They explained there was only one of these tiny plots left beside the road going through the cemetery. It was a small plot surrounded by other little baby graves. Next to it was a communal baby grave shared by many that must have had them all stacked on top of each other as though they were on a supermarket shelf. It made me feel ill and I decided over my own dead body would she be buried here.
Investing in the future
I asked the cemetery man was there not anywhere else and he said we could have a family burial plot but that would be more expensive. I said “fine she’s not being buried at the side of a road even if I need to put it onto a credit card”. I asked him to show us what they had available. He showed us several plots and one was under a big cherry tree opposite the grave of Kirsty Howard, the amazing girl who was so brave and raised so much money for Francis House. I said that one would do. None of the plots were acceptable or perfect because my baby being dead wasn’t acceptable. Our final choice was simply the least offensive and I strangely felt comforted knowing that Kirsty would be her neighbour. I hoped being kind and compassionate that she would look after my little girl.
Violet’s grave
The funeral plan
In the middle of Baby Loss Awareness week 2016 I wrote Violet’s eulogy. I wanted to ensure her send off did her memory justice and that everyone would know exactly who she was and would understand why we loved her, as much as we did. We selected her favourite songs for her funeral, a close friend agreed to give the service for us and we thought about what she would like. I know she was only 15 months old but she had very strong opinions and preferences on things. She loved balloons so we asked everyone to bring a balloon to her service. She liked to make people smile so we arranged for all the balloons to be collected then taken to the children’s hospital and her nursery. We set up her fund in this week too for Alder Hey hospital’s cardiac surgery fund and asked people to donate to it.
A photo my brother took behind him in the chapel at Violet’s service. So many people cared & some were stood outside
Funeral day
The day of her funeral, the 14thOctober, was the penultimate day of baby loss week 2016. I remember it was a crisp autumn day with blue skies and sunshine, even though there had been bad weather forecast we only had high winds that day. I went through the day in a bit of a trance almost as though I was an outsider looking in and I carried the angel bear that I had been sent the day before. I cuddled and sobbed into the bear throughout the service. The bear was a gift from an amazing little charity called Heart to Heart UK that also gifts bravery bears to children undergoing heart surgery. Their gift really helped me.
My angel bear
Wave of Light
The day after Violet’s funeral was the last day of baby loss awareness week. All around the world people lit candles at 7pm creating a wave of light in memory of all the babies lost. We lit a candle in our empty quiet house full of sympathy flowers and cards then we cried some more and had a drink.
Decisions, Decisions…
I decided to write about our week in 2016 because sometimes you don’t think about what parents have to go through logistically just after their baby dies. You almost forget that they have to make important decisions during this most horrendous time. Decisions about choosing a funeral director and whether to bury or cremate? What to do for a service? Whether to ask people to donate to charity and if so which one? All these things would be difficult enough if your child hadn’t just died but they have. The world as you know it has just ended. The most important person in your world has gone and you have to make these decisions.
So please join in with celebrating the end of child loss awareness week by lighting a candle at 7pm on Monday to join the wave of light. Also have a drink with us as we mark the end of the anniversary of probably one of the most difficult weeks of our lives.
Thinking of our lost babies Violet and Arthur this week but about our darling daughter today. The day we laid her to rest with music, balloons and colour just how she would have wanted.
I don’t know if I believe in luck. I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history. I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back. Similar to Karma in what comes around goes around.
I still have a fondness for churches. Here’s Hallgrimskirkja in Reykjavik, Iceland
Energy and Karma
The energy, karma and positivity mantra was the way I always lived my life. Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.
Violet is born
Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck. She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”. Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy. Other family members and friends prayed for her in a multitude of different faiths.
The Priory in Cartmel a stunningly beautiful place
Her surgery was a permanent fix. People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey. We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.
Violet sick again
Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her. After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died. When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.
Arthur
We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.
Karma is fake
Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him. Over the years I have raised thousands for charity. I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….
As for God
As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone. The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her? I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.
We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city
Positive thinking
I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.
An autumnal walk in the park with colds and coughs hoping the fresh air does us good
Kindness and compassion
I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist. I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.
So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version. If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all. Each to their own and I think child loss survivors need to push on anyway they can.
How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?
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.
For years I have heard close friends and family talk about how they feel like fraudulent mummies because they had caesarean sections instead of natural births.
Birthing pressure
Other friends have spoken about the pressure to have done natural child birth, without pain relief. It’s as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.
Bullsh*t
I felt I needed to write this blog post about the pure bullshit (yes that’s the language I’m choosing to use) of this whole belief system. I’m someone who became a mother as a result of the most painful natural birth, I’ve delivered a sleeping baby early naturally and I’ve also had an elective Caesarean section too. I can say from experience that all of these make me equally a mother. Each of these experiences posed their own challenges, unique type of pain and suffering (both during and afterwards, both emotional and physical pain).
My Natural Birth
My “natural” birth was undiagnosed breach during which I had no pain relief and both myself and my daughter nearly died. Now this experience, to some women I’ve spoken to at various baby groups, is lauded as making me a “super woman”. Three years ago in the baby class tales of who had had the worst birth experience meant I usually “won” that one hands down.
I remember one woman at a baby group proudly stating she also had a breach birth naturally and when offered a C-section, instead opted for a no pain relief natural experience. She said she was proud she’d done it. What utter nonsense? As someone who has experienced it and without pain relief, I can hand on heart say I really wish I hadn’t have been through it at all.
Baby Aurora a few hours old last week
A woman’s choice
Yes it is important for women to be able to have a choice in the birth process and for them to be able to have a say in their experience but at the end of the day the priority must always be the health of mother and her baby or babies. Whatever is best for the patients should be what happens. For women to then wear their “experience” as a badge of honour, that they can use to bash other mums with (as if new mums don’t already have enough to feel guilty about!) is I think total and complete bollocks.
I’ve had people say to me, that they wish they’d have had the birth experience I had, instead of the C-section they actually did have. As someone whose physical wounds and emotional ones still haven’t healed from my original birth trauma. I’ve had to say “ermmm no you really don’t want to have experienced what I did”.
Caesarean Section
So why is a C-section seen as the easy option or the cheats way? As someone who has now also experienced a Caesarean section with my latest pregnancy (actually last week!) I can say it’s certainly not the super easy and pain free alternative that it is lauded as. Those women I was in hospital with who had natural births are already out and about with their babies in slings. Pushing them in prams and lifting car seats into their cars to take baby for a drive.
I can’t do any of that yet because of the wound that still needs to heal across my tummy and I’m limited to what I can lift, stretch to reach and physically do. I’m also on strong painkillers for the pain following the major operation, as that is what a Caesarean section is, a major operation! Natural childbirth might be more painful at the time of birth but post birth C-section pain and discomfort wins hands down unless you of course have complications such as tears, prolapse, piles, etc.
Tales of war
Women at baby groups talk about their natural birth experiences in the same way we probably chatted about hunting trips and warfare as cave people. The stories seem to become more elaborate and embellished as they are repeated with some women seeming to get pleasure from reliving all the horrendous little details wanting to out shock or out gore the person before. There seems to be an element of competition about the whole thing trying to see who has had the worst experience.
Why aren’t scars celebrated?
If women talk about their experiences with such great delight then why aren’t the genuine battle scars, including C-section scars, stretch marks & saggy boobs also celebrated by society and why are women made to feel bad about them? Should they not be championed as battle scars and showcased alongside the tales of woe?
Too posh to push?
Why are some women also made to feel bad for having C-sections by men too? Some men when I was pregnant and they heard I was having a planned c section actually joked “too posh to push hey?” With even women giving each other a hard time over childbirth what hope do we have for men to then react appropriately?
Do you feel bad about your childbirth experience? Have others made you feel guilty about it? Have you decided to change things with any future children?
Tiny hands
Can we just celebrate motherhood?
I feel we have a long way to go when discussing childbirth but it is about time we simply celebrate motherhood no matter how our babies arrived into the world and we should celebrate all types of motherhood too, including those whose babies don’t quite go or arrive as planned. It’s important to talk about child loss too and alternative experiences.
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
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.
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.
