Sleeping like a baby what an ironic phrase considering most babies I know hardly sleep anyway I thought I’d write a little post about when you move your baby into their own room.
Moving baby into their own room
This is something most new parents worry about and then once they do it most say how much both they and their baby’s sleep improves. This was certainly the case with our first baby Violet. She actually started sleeping through occasionally once she was in her own bedroom away from daddy’s snoring.
Well now as a parent of loss I can tell you this is extremely difficult and no now she’s in her own room I don’t sleep better in fact my sleep is worse.
Number one I’d like to say to those people marketing webcams and tablets as being “just as good as a baby monitor”. They are no good for a parent of loss. The fact they repeatedly pause to reset or reload is a nightmare for a mother who subconsciously listens to her baby breathing through the monitor while she sleeps. When it stops to reload my subconscious triggers me to wake with a jolt. My brain telling me my baby has stopped breathing. This happened 10 times during the first night she spent in her own room. Add into that the three times she actually woke up too then I think I got approximately an hours sleep.
This amazing first night triggered the purchase of a proper baby monitor through amazon via same day delivery so night number two was better. Just a shame baby then had a cold so awoke 6 or 7 times in the night and awoke to start her day at 5am.
Here’s hoping it gets easier as we’re very tired parents but you know I don’t like to complain. I know I’d rather zero sleep than zero baby as I’d give anything to have my first baby Violet back.
My counsellor tells me it’s normal for a mother to be anxious and all mums have anxiety, to some extent. It’s just that most haven’t then experienced the worst scenario ever playing out in front of them. Most mums when someone tells them the odds of something happening to their child are really slim they can rationalise. They can’t then turn round to say well those odds have happened to me in the past. Unfortunately my experiences now compound my natural mummy anxiety especially at night.
How did you get on with moving your baby to their own room? When did you do it?
Love Sarah x
Always Violet Skies
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This week is Maternal Mental Health Awareness week and I have to be honest that I’ve struggled with what exactly to write. Although I am a mother and sometimes have struggled with mental health, I’m not what you would call a “normal” mother but then I guess no one is truly “normal”. So for the last day of Maternal Mental Health Awareness Week here is my story of motherhood.
I have friends who have struggled with post-natal depression. I know friends whose mother’s have had it 40 years ago when it was dismissed as minor and called the “baby blues”. The difficulty I have is that motherhood for me has been a real rollercoaster. The struggle for me is writing about my own experience without seeming to diminish anyone else’s experience of post-natal depression. I have had friends tell me that they feel they can no longer share their tales of depression or worries as they think they seem minor compared to what I have been through. They have said that actually I make them feel worse about themselves because they should be happy when they compare their lives to mine. Well that doesn’t make me feel guilty, bad or worse at all for sharing!
So apologies in advance if my story of Motherhood makes any of you out there feel worse about your own situations. I don’t want to diminish anyone but hope that by sharing my story some of you who feel alone might feel less so.
I have never had a “normal” motherhood experience. I have not known what it is like to go into a baby scan at 20 weeks full of excitement and to come out elated with happy news afterwards. Our first baby Violet was diagnosed with a heart condition at her 20-week scan. Second baby Arthur was diagnosed with a serious brain condition at his 20-week scan resulting in a TFMR at 22 weeks of pregnancy. Third baby Aurora luckily had clear baby scans all the way through pregnancy but we never entered a scan room full of excitement or even left elated afterwards. More we left smiling with relief that we hadn’t yet had any bad news. Those were my three motherhood beginnings already a little different from the majority of mothers out there. You can read more about stress with a rainbow pregnancy here.
When Violet was born we had a natural induced labour as that was deemed the safest for her but she ended up being undiagnosed breach so I had a breach birth naturally with no pain relief. I am still having counselling for that experience alone, never mind the on going medical treatment because of the wounds I sustained. Violet was also transferred to Alder Hey hospital shortly after birth without me and at 4 days old she had open-heart surgery. It had only a 30% chance of success but she survived and the operation was a 100% fix.
It was, at that point, the most stressful time of our lives and we were relieved it was over. We finally took a 2-week-old baby home from hospital with serious health needs. She needed specialist round the clock care, whilst her heart and rib cage healed up. You can read more about Violet here. Despite her start she was a healthy little girl who had mild developmental problems because of her surgery and also issues eating solid food. We found that a challenge and extremely frustrating. However she was extremely clever, musical and a happy little soul considering her start in life. She was a joy to be around and made everyone who met her happy. This summarises my first year of motherhood started off extremely stressful and finished happy.
The loss of Violet
My second year of motherhood wasn’t anywhere near as good as my first! Violet got sick and was admitted to Manchester Children’s Hospital. We sat by her bed for weeks where she finally died, suddenly from a rare form of pneumonia aged 15 months. We had to wait nearly 2 years to find out why she died, as the autopsy was inconclusive. We had to endure a coroners inquest too. You can read more on this here.
First rainbow baby
My third year of motherhood I think was possibly the most challenging as this year we enjoyed a second pregnancy. Until the fateful 20 week scan and then, whilst still grieving the loss of our beloved daughter, we lost our son Arthur too. You can read about it here.
Second rainbow baby
My fourth year of motherhood is still in full swing and I have to say it is by far the best yet as we have our gorgeous rainbow baby Aurora. Named after the goddess of the dawn she has brought light back into our darkness. She certainly does this as she’s a bright, cheerful, smiley little girl.
People looking at our social media feed might be forgiven for thinking our lives are pure happiness now but as anyone who has suffered child loss will know they aren’t. The happy days are still tinged with sadness, as to what should be and what we are missing.
For example the other day I was “subjected” to a conversation by other mothers talking about how lovely it is that their three year olds and their babies play together. They interact now all the time. Well that’s what we should have Violet as a big sister playing with her younger siblings. Instead Aurora will probably grow up alone. Having grown up with a brother and sister that thought alone makes me want to cry. My siblings are still close to me and we remain an important part of each other’s lives.
I still have regular counselling to help me to try to deal with everything as I have horrendous nightmares on a regular basis. Sometimes extreme anxiety and times when I feel sad. I also have PTSD (read more here) caused by my first birth experience, my daughter having open-heart surgery and also from watching her die. I am told all this is “normal” for a grieving parent but it does draw parallels with how other mums say they feel who have post-natal depression. Whilst I don’t know what it is like to have a relatively normal experience of motherhood and still feel depressed, I do understand and have lived through all these feelings on a fairly regular basis.
I feel that lots of health visitors also need more training and guidance for how to deal with mothers who perhaps are slightly more fragile mentally than others. This is in light of a recent experience I had with a health visitor who reduced me from a confident mum of a rainbow baby to a crying anxious mess in the space of one baby weigh in session.
I also feel that more support should also be given to fathers as often they have no support at all, especially after the loss of a child or after they have witnessed a horrendous birth. They can suffer PTSD too.
Sending all mothers (and fathers) out there lots of love as parenthood can be tough whether it is simply sleepless nights. Or sitting by a sick child in a hospital bed or crying at a graveside. At the end of the day everything is relative to your previous experiences too. I thought the toughest thing I had to endure was watching my child sick in hospital that was until they died. Motherhood can be beautiful and wonderful but it can also be extremely cruel.
I discovered last year that, whilst Mothering Sunday as a concept in the UK came from an 16th century English religious tradition (read my original post here), the more widely known Mother’s Day was founded in America in 1907 by a lady called Anna Jarvis. Anna wanted to do something to honour her mother who had lost 7 babies. This original version of Mother’s Day, that rapidly became the commercial juggernaut it is today, was in fact created to remember and honour a grieving mother.
The original story
Anna wanted to create a day where people could honour and reach out to grieving mothers to actually recognise their pain and suffering in a day of remembrance. Rather than society continuing to ignore and pretend that babies don’t die. That grieving mothers don’t exist, they would be one day a year when people are kind to them. She wanted to change things for those grieving mothers everywhere to help them to feel less alone and less isolated.
It took only a few years before this day, that was associated with deep emotions and grieving mothers, was hijacked by commercial organisations. In the US they saw it as an opportunity to sell gifts and greetings cards to all mothers. It was then that the commercial money making Mother’s Day as we currently know it was born.
Now a day of torture…
Now it is with deep irony that those women who are suffering the grief of losing a child or perhaps not being able to conceive one are no longer recognised by this day. Instead they often feel even more isolated and upset by the commercialisation and celebration of motherhood. A motherhood they are grieving the loss of and maybe struggling to come to terms with not having.
I’m a mum of three
Someone said to me the first Mother’s Day after Violet died that I wasn’t to let the day upset me. She was sure I would no doubt become a mum again in the future. I was devastated and not strong enough to reply that I will always be a mother. It’s just my child is no longer here with us. I still think like a mother, feel like a mother and to a certain extent act like a mother because deep down I am one!
This year I have my rainbow baby Aurora so some strangers may say “oh you’re a mum again congratulations” but actually I became a mum in 2015 and even though you can’t see all of them. I am in fact a mum of three.
Message for everyone
Anyway to all those grieving mums out there please remember this day was created exactly for women like us. Those who have to deal with the pain of losing or not having their babies with them every day, so don’t let other people make that pain worse. Or commercial organisations make you feel bad, as they’re just doing it to make money.
To all the mother’s out there who have living babies please remember why this day was created. That it is for grieving mothers, who are exactly like you, but who through no fault of their own unfortunately lost their children. Please do us grieving mothers or “wish we were mothers” all a favour, celebrate Mother’s Day and your wonderful children. Hug them close, love them and appreciate all the little moments. Remember that some of us aren’t as lucky. You are blessed not because of the gifts of flowers, chocolates and handmade cards but because of the little people you have in your lives. That others would happily give anything to have.
If you have a friend or family member who’s suffered child loss maybe use this weekend as a reason to go out of your way to reach out to them. Send them a message, drop off some flowers or invite them for a coffee just be nice people. Remember this weekend is really for them. I’m sure Anna will be smiling down if she sees people embracing the day as she intended. Spread the love.
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.
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 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.
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.
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.
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.
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…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.
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.
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?
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.
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.
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.
Other friends have spoken about the pressure to have done natural child birth, without pain relief, as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.
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 has now become 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 and 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 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” and 3 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 and 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.
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 so 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, and 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”.
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.
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.
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?
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?
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.
When you’re experiencing pregnancy after loss you expect to be stressed throughout the entire 9 months, so every scan becomes a milestone and you count down until the next scan or check happens. It has actually believe it or not become easier as time has gone on because the more positive scans and checks you have slowly the better you start to feel too.
What you don’t expect only 2 weeks before D Day, which for me is C day really, is to suddenly start getting horrendous nightmares that stop you sleeping.
I spoke to my GP about it and she said oh that’s post traumatic stress disorder because you’ve had two extremely stressful birth experiences previously so the closer you get to your c section date the worse these might get not to mention the stress and grief from losing two previous children.
Great just when I thought I’d nearly done it and we were finally on the home stretch my subconscious seems to want to remind me of the nightmares I have had previously.
WARNING anyone who is pregnant stop reading now as you don’t want to read this part, if you’re squeamish too or eating at the moment (don’t worry there are no photos)!
In my first birth experience I was induced to give birth to Violet at 37 weeks of pregnancy, because they said it’d be less stressful for her, given we knew she had a heart condition and the crash team would be on standby to whisk her straight to the neonatal unit. Unfortunately I wasn’t offered any positioning scan to check her head was definitely engaged and all the various midwives and consultants that examined me told me she was in a perfect position. We were induced on the 14th June 3 times in total and she was finally born the night of the 15th. Both of us nearly died, as it turned out she was undiagnosed breech and no one realised until her bottom appeared instead of her head. She was classic breach too so like a resting frog or a roast chicken with legs tucked either side and because of that her legs wedged her into my pelvis so she was stuck for over 10 minutes. They eventually had to use brute force to yank her legs out then tear her out of me quite literally. The afterbirth shot out with her like a pressure cork across the room along with nearly 2 litres of my blood. Violet wasn’t breathing when she came out so they had to resuscitate her before taking her to the neonatal unit and they had to take me into the operating theatre to repair the third degree tears caused. Oh and did I say I was given no pain relief either, despite requesting some repeatedly for well over a day? I now know the excruciating pain I had felt too for over a day was her toe nails and knees scraping along my insides on her way out.
My second birth experience wasn’t any better as this time I had to deliver Arthur sleeping at 22 weeks and we had had to make the difficult decision to terminate him due to severe medical reasons a few days earlier. Apparently I was told it would be much easier physically than birthing a larger full term baby and as he wasn’t alive I could have maximum pain relief. I opted for diamorphine injections so got my first one when contractions began and could have another 4 hours later. So 4 hours later happened and, as they were preparing to give me more pain relief, I starting birthing him so they couldn’t continue. It was explained to me that it’d be easy to push him out as he was so small and then all they’d do is give a little tug on the umbilical cord, once he was out, then the placenta would come away easily. So my poor tiny sleeping baby came out and then they gave a little tug but the cord snapped, so I started haemorrhaging, they hit all the alarms and the crash team rushed in. I still had no more pain relief but was told to take deep breaths while a consultant put his hand inside my womb (yes my actual womb meaning my cervix had to open the width of a normal sized baby’s head!) and he manually scraped the placenta out. Then another consultant had to do the same to check they got it all. In the meantime I’d lost a litre and a half of blood. Over the next week I found myself in and out of hospital with infections of my womb, extremely low iron and blood pressure. Not to mention dealing with the grief of having delivered my dead son, almost a year after we buried my daughter too.
Today I achieved the first step to get over my PTSD as we had a tour of the labour ward and operating theatres in the hospital. It was the first time I had been back on that particular ward/area since having Violet and I broke down into tears, as I was taken right back to just over 3 years ago. I was proud I did it and hopefully now it will be easier for me to go back there again in a few weeks time. Fingers crossed I will be much less stressed.
So there you have it the main reason behind my PTSD and the reason why this time they are giving me a Caesarean section so just hoping this one goes smoothly because I bloody deserve it (excuse the pun & the language!).
The amusing thing is that after I had Violet the National Childbirth Trust contacted me to ask would I consider becoming a volunteer to talk to expectant mothers about my natural birth experience! I said I didn’t think that’d be a good idea, as they would have nightmares, not realising at the time that it would be me having them.
Not many people talk about PTSD from childbirth experience so I wanted to share in the hope others come forward or feel less alone. I know the vast majority of people have relatively straightforward birth experiences and I don’t want to scare anyone but no one really supports those that go through horrendous ones, so I felt I should share my stories in the hope others feel they can share theirs.
I have now been offered help in dealing with my PTSD but the treatment isn’t advised when you’re pregnant so they will work with me on it in a few months.
Last week was a hard week for us as it was our daughter’s third birthday and 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.
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. 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 and she was only alive because of the additional hormones and support she was being given.
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, as 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 be discharged to head over to Liverpool I was.
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!
When they took her down to the operating theatre I couldn’t watch, as 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 and how strong she was, that she could do this.
Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call and finally received it saying she was out and still alive! We were so relieved and 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 but we were told the opposite that the surgeon thought it was an 100% success and 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.
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.
The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it by 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.
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, and 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, left some near the mural on Beech Road that has a violet coloured balloon in her memory, some elsewhere on Beech Road near to where she attended Babel Baby classes and we placed some on benches in the cemetery close to her grave after we took her birthday balloons.
Third birthday balloons
Random act of kindness
Random act of kindness
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 often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other and about how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?
I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.
We never knew Arthur. Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement, if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound. Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate. He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.
It’s much easier for us to remember and to talk about Violet as lots of people knew her, so there are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.
Arthur bless him doesn’t have any shared memories or friends and didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s but we’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.
This blog is full of photos of Violet and that’s great because we have lots of her and she loved having her photo taken too. It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.
I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible, and she would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?
What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?
I used to be a self-confessed shopaholic before I had Violet I loved nothing more than a shopping spree round town getting a new dress, looking at the sales, maybe some new shoes, new toiletries etc. Now I hardly ever shop.
Instead losing my children has taught me to appreciate the experiences life has to offer, rather than simply buying stuff. So now we’d rather spend our money on dinner out or save for a holiday somewhere or spend time in the outdoors.
Family and friends
It has also made us more grateful for our friends and family who have been so supportive, throughout these last few years. Yes we have had good friends fall by the way side but many more that have stepped right up to the plate to hold our hands during our lowest ebbs. We are so appreciative of these people, as it makes us realise that as cruel and evil as the world sometimes seems there are good, kind people out there.
There have also been near strangers and distant friends who have been so kind and gone out of their way to help us in small ways that mean much more because of the thought that goes with it.
Some people have gone out of their way to remember our daughter by doing Iron Man contests, swimming Windermere, organising events and other challenges to raise money for her fund helping us to create that lasting legacy for Violet we so crave.
There have been lots of moments of kindness from people that have reduced us both to tears and we love you all so thank you!
Love, Sarah x
p.s. if anyone wants to donate to her fund click here and tickets for the Violet ball on 29th September 2018 can be reserved here