Control freak

These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.

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A beautiful cloudy Violet sunset over our house last night

Lack of control

I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).

The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.

Poorly child

When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.

Violet-in-manchester-childrens-hospital-on-26th-Sept-2016-violet-skies
Violet in hospital the day she later died suddenly

Regaining control on life

I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.

Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.

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Photo of our house during the renovation with Dexter our GSD in shot too

More of a control freak

Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.

My advice is to try to do other things you can control to try to balance out those things that you simply can’t.

Big hugs and lots of love

Sarah

Always Violet Skies xx

You might be interested in reading these other posts –

When you finally get your rainbow what then

Four years a mother

Surviving after child loss?

September = New Beginnings

From the age we first start school we are conditioned into the fact that September means new beginnings so much so that as adults, even when we have no school age children and are no longer in education ourselves, September can often still seem exciting as we prepare for autumn with new clothes, new stationary and a renewed focus for the future. This has always been the case for me.  I loved school even more so a new notebook, accessories and clothes that came with it!

Enjoying a beer with friends & catching the last of the September sun

A New Beginning no one wants

September equalled new beginnings.  I could always look at this month in a positive way until 3 years ago when that new beginning first came to equal a negative “new beginning” no one wants to ever face. That new beginning was the loss of my daughter and the new beginning that year was trying to carry on with some semblance of life without her in it.  No one ever wants that kind of new beginning and this has become my biggest on going challenge to date.  It’s tough really tough and never ending.  Yes it was nearly 3 years ago but it feels like yesterday one minute and like a scene from a movie about someone else’s life in the next.

Violet September 2016 the day she died

Another horrendous September

Then the following September after our annus horribilis we faced another “new beginning” to add to the stress of the one the previous year.  This was the loss of a much-wanted son that came out of the blue with shocking news for me accompanying it and so we had to arrange a second child’s funeral in our second stressful September “new beginning”.

Arthur’s Giraffe that now belongs to Aurora his little sister

Bringing control back

So last September I organised the Violet Ball to take back control of my Septembers and that year’s “new beginning” was a black tie charity event for 200 people to raise funds for Alder Hey children’s hospital.  Which as an experienced PR is the kind of event I have organised before but this time with a 6-week-old new born baby in tow event organisation wise that was a first for me!

The Violet Ball September 2018

An exciting New Beginning

This September we decided not to do a charity ball as we agreed we needed a summer to relax and decompress rather than run around finalising an event. I was dreading finding out what this year’s “new beginning” for September would be.  But you know what this year’s is actually a positive (hopefully) and challenging one as I got asked to become a part time Associate Lecturer at MMU Business school teaching marketing.   New starts and exciting new beginnings that are positive is exactly what I needed and I might treat myself to a new notebook.

Hope your September’s have been successful and less stressful ones too.

Keep positive

Love Sarah

Always Violet Skies xxx

You might be interested in these other blog posts –

Four years a mother

My authentic self

What happens after your rainbow

Back to school – Why this time of year irritates me?

In early September when kids start or go back to school it’s not so much the hundreds of photos of them lined up in front of either a front door or a fireplace that irritates me but more the stupid comment(s) that accompany them. So to save me from adding a passive aggressive and brutally honest blunt comment in reply to some of these posts I decided instead to write this, so hopefully if you care you will read this and think before you write that irritating social media post.

My aunty Jenny’s gorgeous front door – without a child in a school uniform

Here are those comments

“I wish he or she would stop growing” errr no you don’t because that would mean they would die and then be dead like my daughter who remains 15 months forever.

“Oh they’re growing too fast” at least they are growing there are lots of parents out there whose babies are sick and not growing fast enough. Be thankful you’re not them and don’t insult these parents by complaining when your child is healthy and thriving.

“Oh I wish they would stay as babies forever” errr no you don’t see my earlier comment above. Would you like it if they died then they would always be a baby?

“I miss when they were little” that’s why taking photos is so important but be thankful you don’t just miss them because they are no longer with you.

My fireplace without a child in a school uniform in front of it – “Back to school”

“It’s all going too fast.” You know what life tends to go fast when you’re enjoying and/or loving things. Try sitting in a hospital chair next to a sick child and your days seem to drag on and on. Or heavens forbid sit next to their grave. There are lots of parents sat in hospital with their school age child who is too sick to attend school and I can tell you their days just drag on. They would give anything to be doing a school drop off instead and waving goodbye to a child at the school gate rather than in an isolation ward as they nip to the loo.

“I wish time would stop” no you don’t because then you would be dead. Do you want your child or family to grow up without you? Think how extremely lucky you are to be alive now and living in the reality you have. Embrace every second and live in the present not the future because you certainly don’t want to be living in the past or to only be alive in someone else’s past.

Share those photos

So folks if you feel the need to share photos of your little darlings in their school uniforms to celebrate that they are growing, healthy and happy. To thank the universe that they were born to you in a country with free healthcare and education, so they can actually go to school then great share away. But please out of respect to those of us not in as privileged a position as you don’t wish for your children to stop growing, for time to stop or say that you are upset they are going to school. Be happy and be grateful. Appreciate the now and embrace the moment because you are right about one thing it isn’t happening again. Relish the time and moments. Take the photos, make the memories and remember to feel happy not sad. Embrace this exciting new chapter in you and your child’s life – hopefully there will be many more yet to come too.

A front door without a child in a school uniform – “back to school”

I know a hell of a lot of people who would love to be buying a new school uniform, waving their child off at the school gate and at the end of the day hearing all about how their first day went. Myself included. This September Violet should have been starting Primary School and that she isn’t hurts us beyond belief. We would do anything to have her here now. We know as a little book worm at 15 months that she would have loved going to school. So if your child is attending school this September be thankful and celebrate it but don’t for a second wish for something different.

Big love, Sarah

Always Violet Skies x

You might be interested in these other blog posts –

Four years a mother

My authentic self

What happens after your rainbow

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

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

It’s that time of year again… Mother’s Day

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For those of us with angel babies this time of the year leading up to and including Mother’s Day is a really tough time as we’re reminded constantly about who and what is missing from our lives. I know it’s tough also for those friends of mine who’ve wanted children but for whatever reason it hasn’t happened for them.

This year is a little different for me as I now have my gorgeous rainbow baby Aurora but it’s still bittersweet.  I should be waking up to a hand made card from a nearly 4 year old and perhaps she’d bring me breakfast in bed or a cup cake she’d decorated.  I imagine she’d have dark blond curls by now and be constantly humming under her breath, as she loved music.

So please I implore you to be mindful of others during this next week. There are those of us who are missing a beloved mother and those of us who are a grieving mother so please be kind and gentle to each other.

Big love

Sarah x
Always Violet Skies 

Me & Violet in Cyprus Easter 2016

You might enjoy the following blog posts –

Making over Motherhood

Making new Memories

The Challenge of a Rainbow pregnancy

Lonely

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There’s a lot out there about new mums being lonely and how as a new mum you can suddenly feel lonely as your world changes overnight when your new baby is born. People talk about how important it is to make new friends and to build support networks so you don’t feel isolated. I’ve been there and get why some mums feel that way so can champion the importance of joining groups or courses to meet other new parents perhaps NCT classes or pregnancy yoga (as long as you’re not a rainbow mum read my earlier post about my experience with this here) before the birth or a baby class afterwards.

Lonely walk through the cemetery

Loneliness as a mother of loss

What no one really talks about though is how lonely it is when your baby or child dies. As a mum of a living baby yes it might be lonely but you only have to go into a cafe or shop or walk down the street with a pram before someone stops to talk to you, to coo and fuss over your baby. It’s more than acceptable in society to be a new parent and to have a baby. If anything society celebrates it as this great achievement, which it isn’t, and miracle, which it is. But what happens if your child or baby dies? What then?

Ostracised

Well I can say from experience that society ostracises you. The support networks you had as a new or expectant mum suddenly disappear and aren’t there anymore. You can’t go along to a mother and baby group minus a baby can you?  Or a post-pregnancy yoga session when that baby didn’t survive even though perhaps you’re more in need of that session than others. Well why can’t you? Because society makes you feel like an outcast.

You should be able to attend these groups and classes but you’re made to feel unwelcome.  I phoned one yoga school after I lost my rainbow baby Arthur at 22 weeks (read about it my experience with Arthur here) and asked could I switch my paid for maternity yoga sessions to a post-pregnancy class but she advised that it wouldn’t be suitable for me and gave me a refund instead. All of a sudden your mummy membership has been revoked. You aren’t welcome anymore. Suddenly you’re pushed out to the fringes of society.

Suddenly you’re in a cafe all alone without the need for a baby bottle

Violet

When my daughter Violet was alive I was celebrated by that same society, who exclaimed, “Oh you’re doing such a good and thankless tiring job as a Mummy”, “wow you’re a working mummy too” and even though motherhood is stressful at least it is acceptable.

Then your child dies and you’re pushed out, ignored and no one knows what to say or do with you anymore, so it is easier for him or her to simply ignore you or your situation. It is as though your mummy label has fallen off, when in fact you are still a mummy but just not of a living child. You’ve had the sleepless nights and are still having them just now they are because of your tears not a baby’s. 

Even the darkest night will end and you will remember those friends who were there

The invitations cease

No one wants to invite you out anymore. Well we don’t want to risk upsetting you, they may say, if we talk about our children. Suddenly if you do see any of your old friends by accident they deliberately avoid talking about their children and mentioning yours for this reason, when actually having only discussed parenting and each other’s children for the past year or more that line of discussion might actually be a great comfort and more the “normal” you’ve been used to.  It is actually lovely for someone to mention your child’s name as it shows they still remember them and that their memory lives on, as one of the fears a grieving parent has is that their child will be forgotten.

“If you see somebody that is hurting, don’t look away”. Lady Gaga

A few years before I became a mother I was a singleton for years and I was subject to a different kind of societal taboo.  I actually found myself longing to be in that outcast group again as it was more familiar to me!

So what to do about it?

If you’re the parent of loss then don’t feel alone there’s a huge community of us out there who can relate to what you’re going through. There are some links on my site here and don’t be afraid to reach out to friends to invite them out for coffee/lunch even if you don’t feel like it you’ll feel better for it as often they just don’t know what you need so tell them.

Remember just to be kind when dealing with those who are grieving

Advice

If you’re a friend or family member of someone who has suffered loss please do the following-

1. Ask

People used to ask me what they could do for me & sometimes I knew but often I didn’t know or couldn’t think about what I needed. So instead perhaps say I’d really like to be here for you. Would you like to come out for lunch with me or would you prefer me to drop some food round to you? Do you fancy a walk & a coffee somewhere or the cinema or I can pop round to you? By giving them choices it makes it easier for them to say what they’d prefer.  Multiple-choice questions are always easier.

2. Listen

When you do see them just listen and give them a hug if appropriate. Feel free to say – “I can’t imagine what you’re going through” or if you’ve suffered child loss yourself then “I’ve been there I’m so sorry I understand what you’re going through” (please note: don’t say this if the closest loss you’ve suffered is losing a pet, as hard as that to you is it really isn’t comparable to losing a child nor is saying everyone has bad times then comparing it to money worries or a sick parent). Don’t say “at least he/she didn’t suffer”, “it wasn’t meant to be” or “at least you’re young enough to have another”. Remember silence is golden.

3. Timing

The period leading up to & straight after the funeral is when lots of people will be fussing over the grieving parents but that will end one or two weeks afterwards, then everyone outside the family will go back to their normal lives as if nothing happened. Contact your friend then, as this is when the loneliness begins. Good friends of mine dropped in food, insisted on cooking for us in our home & dropped in alcohol. One bought us a voucher card for a meal out that encouraged us to leave the house.   Others sent flowers to show they were thinking of us if they lived far away. Remember even something small like a card or text message can make them feel less alone.

Love & hope

Sarah

Always Violet Skies

My rainbow baby Aurora on Valentine’s Day – proof the sun does shine again

Have you read these other posts about child loss?

Meeting an old friend

Tommy’s Angels

When mother nature has other ideas

Grief is like being shipwrecked

Mothering after loss

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This week has been a really challenging one for me because my baby has been properly poorly for the first time.  Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.

Sick baby

Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful.  Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.

The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.

Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).

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Poorly little girl but check out that fabulous curl!

Sleepless in Manchester

The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.

Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.

Holding baby while she sleeps

The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.

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After a loooong 24 hours of hardly any sleep and at last she sleeps!

Rainbow baby’s are difficult

You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.

The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.

What are the chances?

Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.

I’ve seen what hell looks like and I’ve experienced unspeakable pain.  I have sat by the side of a hospital bed for days and nights on end.  I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs.  I’ve stifled back my own crying and sobs so as not to distress my poorly child.  I’ve told my crying child that all of this is to make them better and lied that they will be ok.  I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.

Living nightmare

You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow.  I can tell you that hell is watching your child in pain, being tortured and then them die.  Then you have to arrange their funeral before somehow going on with your life.

I never ever want to go back there again thank you.  If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it.  If I have to hold her while she sleeps then I will do.  Anything I need to do I will do it.

I also keep having to repeat the same mantra over and over in my head.

“This is a different baby. A different person. She isn’t the same. ”

To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too.  Sometimes it’s tough being a parent.

Big love

Sarah – Violet Skies

Have you read these other posts about Rainbow babies?

When you finally get your rainbow what then?

Distraction number 1

Luck, God or just random shit

Meeting an old friend

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Like most people I love bumping into people I haven’t seen for a while.  Someone I used to speak to or deal with all the time perhaps through work or a project and who has simply drifted away.  Now in these modern times, thanks to social media, quite a lot of these people are still kept up to date on the happenings in my life. They are aware of the sadness of recent times, however there are occasionally still a few that slip through the net.

Catch up

I met up with someone recently who I hadn’t seen for 5 years and initially I was so pleased to have ran into them, eagerly accepting the offer of a coffee in a nearby café.  Then as I waited for them to get served with our brews my heart sank, as I realized the conversation I was about to have with them. I could forecast the surprised look then sadness before there would be pity and sorrow for my loss.  Yes they would be sympathetic and the usual comments of “I’m so sorry” and “how have you coped” would be expressed.  They would mention their kids and how they couldn’t imagine the pain of ever losing them. Then our entire conversation would take a different turn.

He brought the coffee and tea back.

IMG_9877

I secretly challenged myself to see how long I could last before I would have to deliver the bad news to him. I asked him lots of questions, first about what had happened in the past 5 years in his life. He told me about his children growing up and how they were doing at school. About their different personalities with so much joy and passion proud of the people they were becoming.

My story

Then he asked “what about me” and I told him first about the happy things; our house, getting married, travelling the world and our three children. About Violet, Arthur and Aurora, then about the loss of two of them. I finished on a happy note talking about Violet’s fund, Aurora and our hope for the future.

Facetune_21-02-2019-21-29-27
Me and Aurora upset as she had to have her coat on.

I’m now adept at delivering the proverbial sandwich with the shitty grief filling in the middle.

Avoidance

It’s very easy for me to simply avoid catching up with people and avoid setting dates to meet up for fear that I’ll have to have the awkward conversation about what has happened in my life.   Don’t get me wrong I’m getting better at delivering it now but somedays it is still very hard for me having to relive it over again along with the associated emotion.

I hate being thought of as “that girl” and “oh poor Sarah” as that’s certainly not me.  My loss doesn’t define me as a person.  Yes it may have shaped me into the person I am today and yes I feel the affects of that change every second of every minute but I’m still me.

I just wish I could hand that old friend an overview of what’s happened instead and say “here’s an update on me please read it and then we will grab a coffee to catch up”.  That way I don’t have to relive anything repeating myself and having to observe their reactions too.  It’s a little weird though and cold I guess so not me.

What do you think?  How would you tell people if you were me?

All suggestions welcome!

Love

Sarah x

Always Violet Skies

You might find these blog posts interesting –

Lonely

When you finally get your rainbow what then?

Making over Motherhood

Tommy’s Angels

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A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change.  We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.

The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.

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Tommy’s Afternoon tea party for 2018 Rainbow Babies

About Tommy’s

For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages.  The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.

Leonardo Di Vinci

This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing.  I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too.  He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.

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Leonardo’s study of human anatomy and specifically the circulatory system

Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s.  What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.

Our experience

Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans.  They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.

All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time.  I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news.  Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death.  So to say I was skeptical about what “experts” told me was an understatement but you know what?  The Tommy’s experts or as I like to call them Angels were right!

Afternoon tea

So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh.  The last time they had seen her she was on a black and white screen during ultra sound scans.  It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.

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Aurora with one of our “Tommy’s Angels”

Tommy’s is a charity

Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.

Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead.  Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?

Also make sure you visit the Leonardo Da Vinci exhibition more details click here.

Love

Sarah xx

Always Violet Skies

You might enjoy these other blog posts –
Somewhere after the rainbow – what happens if you lose your rainbow?

The challenge of a rainbow pregnancy