Sleeping like a baby?

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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.

A sleeping Aurora who prefers to be cuddled as she sleeps - Violet Skies
A sleeping Aurora our sleeping beauty in name only – Violet Skies

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. 

Monitors

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.

A sleeping Aurora who prefers to be cuddled as she sleeps - Violet Skies
A sleeping Aurora who prefers to be cuddled as she sleeps – Violet Skies

Anxiety

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

You might also find the following posts interesting –

When you get your rainbow what then?

Mothering after loss

Making over Motherhood

Making over Motherhood

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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.

Me with rainbow baby Aurora in Mangawhai New Zealand - Violet Skies
Me with rainbow baby Aurora in Mangawhai New Zealand – Violet Skies

Post-natal depression

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.  

Normal motherhood

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.

Violet’s birth

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.

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

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.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies.
36 weeks pregnant with Aurora at my friends wedding. Violet Skies.

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.

Brother & sister – Violet & Aurora’s gorgeous cousins

Counselling

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.

Support needed

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. 

Big love,

Always Violet Skies x

You might enjoy these blog posts –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

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

Blue Monday?  I have a blue kitchen…

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There’s been lots of talk this week about people having a “blue Monday” or a “blue week” as apparently people are skint from Christmas/New Year/Sale shopping and have fallen off the wagon when it comes to New Year’s resolutions.  Well if those are your major problems in life to be upset over well boo f*cking hoo or at least that’s what I want to say to people.

Of course I don’t wish to belittle anyone who is genuinely suffering from depression, as it is an awful illness but those people who are sad because of minor issues like the weather I just want to grab and violently shake.

Feeling blue everyday

I wake up and every day is a blue Monday, as the first thing I think of when I open my eyes in the morning, like most parents, is my children.  I’m then slapped in the face by reality and the fact only one of them is alive.  My little girl Aurora makes me smile despite the blue start and proves there is always a little sunshine in the darkness if you focus on the light no matter how hard that can be.   I’m so used to feeling “blue” that it has become just another part of me.

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The face that makes me smile every morning

Dark abyss

On the positive side because of this sadness within me other things going wrong seem to just be absorbed into the same abyss that’s already there, so I don’t feel anymore sad but exactly the same as I did before.  For example our washing machine just gave up the ghost and a few years ago it’d have meant maximum stress about the cost but we simply ordered a new one on our credit card, to be paid for later all sorted.  Minimum drama and less fuss as my mum says “don’t sweat the small stuff”.

So to those of you who think you have issues this week then….

Gained weight

You’ve put on a few pounds since Christmas and the diet you started on the 1stJanuary you’ve given up on already, so now you’re depressed.  Think yourself lucky at least you’re not living on the streets homeless and hungry.  At least you’re healthy too and not in hospital battling some horrendous disease or sat beside a loved one who is.

The weather

The weather is a bit grey and miserable so it’s making you feel down.  Well you do live in the UK and it is winter so get over it or look to emigrate.  Change your situation. Remember also that grey and miserable can be pretty too just change your perspective and wear bright colours to compensate.

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Look for the sunshine through the grey clouds

Skint after Christmas

So you spent too much money over Christmas and New Year so you feel a little down.  Why not start a side line business connected to a hobby or dig out some things you don’t want any more and sell them?  Basically stop moping and get moving.  Do something about it and change things.  You have the power!  (Now I sound like He-man I do apologise)  Websites like Ebay have always been popular but also look at selling things through sites and apps such as Depop and Facebook marketplace.  If you’re really struggling then get advice from the Citizens advice bureau they can give impartial advice on debt and other issues.

Put your money to better use

Given up on whatever New Year’s resolutions you started?  If they involved spending money on gym membership, then cancel it and donate the cash to charity, think of the actual good you can do with it instead. The time you’d have spent in the gym you can spend volunteering at a homeless shelter, local dogs home (that’d be great free exercise!) or visiting elderly people? Think of the good you can do for others instead of focussing inwards on how bad you feel personally. Stop being selfish and think of other people instead.  I can honestly tell you that you will start to feel much much better just try it!

You can easily find volunteering opportunities in your community via sites like the Do it Trust

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Grey can sometimes be quite beautiful even in winter

Chin up; keep going and soon it’ll be springtime.

Big love,

Sarah x

Always Violet Skies

You might be interested in the following posts too –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

When you finally get your rainbow baby what then…

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?

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.

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 one 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?

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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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

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 x

Luck, God or just random shit?

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

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.

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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.

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.

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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

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

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?

I used to love September

This is now the worst month for me.

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.

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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.

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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.

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Click here for details of ball.

Thanks for reading x

Growth

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.

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

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.

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

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

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 x

What a difference a year makes?

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.

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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.

Love and thanks

Sarah xx

Always Violet Skies

You might be interested in these blog posts –

Somewhere after the rainbow

What happens when you get your rainbow

Mothering after loss

Emotional

Relieved, ungrateful, confusing, complicated, devastating, exciting, ecstatic, elated, happy, sad, angry…

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.

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Me (tired & make up free but happy) with Aurora

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.

Love Sarah 😘 x