A Sick Groundhog day

So our little rainbow baby had her one-year inoculations the other day so we had a few days of high temperatures, a distressed clingy baby, waking every half an hour over night and whimpering in her sleep.  It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day.

Violet

Our first born Violet died suddenly at 15 months old and looking back her health slowly deteriorated over her final months so slowly we didn’t really notice it until it was almost too late and then it was too late.

The last photo ever taken of our gorgeous Violet the morning of the day she died in Manchester Children’s Hospital playing with a balloon.

Rainbow baby

Our rainbow baby, Aurora Violet’s baby sister is now approaching 13 months old so we are ultra sensitive to any slight change in her behaviour, routinely checking her temperature and we whisk her to see the GP as soon as she coughs more than a few times. Over protective parents have nothing on us!

A sleeping Aurora – our rainbow baby

Violet in her final months started sleeping a lot worse than she did before and we assumed she was waking because of hunger but discovered on admission into hospital that it was because her oxygen levels were plummeting.  Aurora is displaying similar sleeping patterns so we’re awaiting sleep study equipment to monitor and check her oxygen levels while she sleeps.

Our rainbow baby has an appointment with a top lung specialist too, even though as yet she currently doesn’t have anything wrong with her chest (that we can tell).  It makes us feel better that she will be double-checked. You may think “what a waste of that consultants time if there’s nothing wrong with her” and someone expressed that to me.

The Why

Well her sister saw countless GPs, several paediatricians at two different hospitals, several accident and emergency consultants, a variety of different registrars at Manchester Children’s Hospital, with varying levels of qualification and experience.  Yet not one of them managed to accurately diagnose Violet while she was alive.  It wasn’t until after a full coroners inquest nearly 2 years after her death that we even found out what the issue had been.  This top lung specialist was supposed to see Violet when she was in hospital but she died before he got around to seeing her and perhaps he may have diagnosed her or not we will never know.

It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day. Violet-Skies.com
Violet in Manchester Children’s Hospital aged 15 months old.

So I’m not sorry in the slightest if by now playing the “my dead baby” card means that my rainbow gets the best specialist healthcare because you know what she and we bloody well deserve it.   I have paid my taxes (as have my family all our lives) and we fully support funding the NHS which yes needs more funding today so babies like Violet don’t die in hospital while waiting to see a specialist.

Until you have been in our shoes and watched your child deteriorate, suffer and then die in front of you whilst no one has an explanation as to why.  Then come object to me but until then I will stand and scream if I have to until I know my child is safe, healthy and happy.

If your child is ill too let me know as I’m happy to advise or scream for them too.  

The Maybes

Maybe we didn’t shout loud enough with Violet?  Maybe we didn’t kick up enough of a stink?  Maybe I should have bundled her into my car when I decided Manchester Children’s Hospital weren’t doing a good enough job and driven her to Alder Hey hospital?  

Well you know what this time if I need to then I bloody well will and god help any healthcare admin person who dares stand in my way!

The NHS

Have you ever had to question healthcare professionals?   During Violet’s short lifetime we experienced the very best of the NHS and the very worst too.  What are your experiences?

Big love,

Sarah

Always Violet Skies x

You might also be interested in reading these blog posts –

Four years a mother

Party girl

Grief is like being shipwrecked

Party girl…

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At this time of the year my sleep (when I get any as my rainbow isn’t sleeping well and yes I get the irony given her name Aurora!) is peppered with a variety of different dreams all following the same subject.

Dream parties

It is always planning and arranging a birthday party. This year it’s one for a 4 year old as Violet would have turned four this June.

Violet’s 1st & only birthday – she loved it!

So far I’ve dreamt about lots of party themes including flower fairy tea party, puppy and kitten party, sleepover pamper party, Disney strictly dancing party, trolls theme, unicorn sparkles…

I think Violet would have loved Unicorns!

The dreams are all enjoyable in the main as I usually wake when the party is all set up ready before any guests arrive but I become upset when I actually wake realising that Violet isn’t here and I dreamt the whole thing.

Nightmares

Occasionally the dreams turn into a nightmare like last night when her little friends all started arriving with presents and balloons excited for the party to come. They were all asking where Violet the birthday girl was and we searched and searched shouting but she was nowhere to be seen. All her friends broke down crying and screaming then I woke up.

When I finally fell back to sleep again I started to organise a pool party in a hired swimming pool and so my dream party cycle began again.

Birthday balloons

Party girl to the core

I am a party girl at heart after all.  I guess it’s a way my PR brain tries to be proactive in processing things and it could be worse I could keep writing the same press release over and over!  

If anyone needs a kids party planning and arranging then just let me know, especially if it’s for a four year old as I can literally do one for you in my sleep! Violet would have had the best parties and I can assure you so will her sister.

Last year planning the Violet ball helped to halt these dreams, so I may have to start up plans for the Violet ball 2020, anyone fancy coming?

Love

Sarah x

Always Violet Skies 

Here are some other blog posts you might find interesting –

When you get your rainbow what then?

Mothering after loss

Making over Motherhood

What Mother’s Day Really Means

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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.

WHAT MOTHER’S DAY REALLY MEANS
WHAT MOTHER’S DAY REALLY MEANS Me with my angel baby Violet in Cyprus. Violet Skies.

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.

Happy Mother's Day What Mother's Day Really Means. Mother’s Day was founded in America in 1907 by a lady called Anna Jarvis, who wanted to do something to honour her mother who had lost 7 babies.
Happy Mother’s Day. My rainbow baby Aurora loving life & living up to her name.

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.

Reach out

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.

Big love & hugs, Sarah

Always Violet Skies x

Have you read some of my other posts –

Lonely -about how isolating child loss can be & what to do about it or to help

Why grief is like being shipwrecked

New Year Learning and Growth

The Challenge of Pregnancy when it’s a rainbow baby

When you finally get your rainbow baby what then…

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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.

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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.

Autumn photoshoot - Ian Scott Photography
Credit ianscottphotography.co.uk

Imagination

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 - Manchester Photography courses
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.

Love Sarah

Always Violet Skies x

Luck, God or just random shit?

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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.

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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.

priory
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.

stanns
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.

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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?

Love Sarah

Always Violet Skies x

Growth

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When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”.  Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.

Healthy newborn

It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.

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Winding Aurora over the shoulder

Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!

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A teeny tiny Violet in Alder Hey Hospital

Success measured in pounds

This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”.  Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.

Reassurance

You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.

We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.

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Violet at a week old still at Alder Hey Hospital after open heart surgery

Sick baby is a challenge

Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones.  And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.

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Aurora at a week old enjoying the sunshine outside

Bereaved parents

To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,

Love Sarah

Always Violet Skies x

More of a mother? 

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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.

Super mother

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.

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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?

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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.

Love

Sarah

Always Violet Skies x

Violet’s third birthday

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

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

First 10 days in hospitals

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

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

Off for heart surgery at 4 days old

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

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

We told her about exciting plans

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

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

Me & Violet in Cyprus
Violet in Cyprus in April 2016

The journey to operating theatre

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

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

Then we waited for an eternity

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

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

Now it feels like a story

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

Thoughts of ordinary things

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

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

Party and gift planning

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

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

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

Thanks for reading

Love

Sarah

Always Violet Skies xx

A Mother’s Guilt

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Guilty

I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other. 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?

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Their shared graveside

Second child syndrome

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.

Our rainbow Arthur

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.

Legally he doesn’t exist

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.

Arthur scan
A photo of Arthur

Easier to talk about Violet

It’s much easier for us to remember and to talk about Violet as lots of people knew her. 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.

No shared memories or friends

Arthur bless him doesn’t have any shared memories or friends. He 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. 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.

Photos

This blog is full of photos of Violet and that’s great because we have lots of her. 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.

Violet in a pretty dress
Violet at 1 year old

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. 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?

Love, Sarah x

No answer and no conclusion…as yet

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

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

Cause of death

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

Inquest for the truth

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

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

Delays in answers

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

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

In limbo

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

Rainbow baby number 1

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

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

No reason why

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

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

Sending lots of love & hoping for answers soon.

Sarah x