Our second rainbow

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This was the best kept secret, until recently, as anyone can testify if they have bumped into me. At 34 weeks pregnant with my third pregnancy I’m now pretty big.

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Not very honest

Those of you who regularly read my blog you will know that I like to write in a very honest and frank way. I apologise if I haven’t been forthcoming about this massive development in my life. I hope that after reading this post you can understand why.

Third pregnancy

We were lucky enough to fall pregnant again with our second rainbow pretty soon after the loss of our baby Arthur. Unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother. We wouldn’t know if it had these issues until the 20 week scan.  So we would have to wait 5 months until we knew if our pregnancy would be viable or not.

The scans

In the meantime we were of course offered additional scans so we had one at 7 weeks, 12 weeks and another at 16 weeks where they checked baby’s heart.  At the 16-week check we discovered that unlike Violet’s heart the new baby’s heart was perfectly formed. We had received this news about Arthur’s heart at 16-weeks too.  So although it was good news we weren’t celebrating yet.

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Baby at 12 week scan

Arthur’s scan

I remember after our 16-week scan with Arthur we had been so happy that his heart was ok. We felt so lucky, relieved and excited we told friends and family we were pregnant.  Everyone of course was delighted for us, especially after the loss of Violet. Then after Arthur’s 20-week scan we got the devastating news about his severe brain condition and our entire world collapsed.

Kept this one quiet

For this very reason we refrained from telling our close friends about the new pregnancy until after our 20 week scan.  This scan turned out to be the very first 20 week scan we have ever had that hasn’t resulted in us being pulled into a separate room. To be spoken to by specialists and midwife counsellors.  The first 20-week scan we have had that hasn’t resulted in us having to have a second follow up scan with a more senior specialist a week later. 

So when the two specialists that performed our 20-week scan told us the baby was perfectly healthy we didn’t know what to say.  We were in total shock.  We were asked if we had any questions and all we could think of was “what do we do now?” We were told we could leave and come back for another scan with a specialist at 28 weeks.

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Baby at 20 weeks refusing to have a photo taken turning away!

A mistake?

Since then we have been waiting for a phone call or letter from the hospital to say that they are sorry but they have made a mistake.  We had the second specialist scan at 28 weeks and again we prepared ourselves for the knock out punch. That didn’t come, again we were given positive news.  To anyone reading this we must sound ungrateful. We were just so used to being given bad news whether it was devastating or minor bad news that we almost couldn’t believe what we were hearing.

More scans

We currently have a minimum of one baby or pregnancy related appointment each week. Either to monitor my heart (as I have an ASD see my post about a broken heart). To check baby’s growth (the amazing Tommy’s clinic gives us a scan every 3 weeks). Child loss counseling or midwife appointments.  I’m under so many different departments and teams that we have gone from having an horrendous level of obstetric care when we had Violet to now having lots of specialists who all know who we are and will give us priority level care.  The NHS now feels like it is working for us!

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With my sister at the baby shower she & my sister-in-law kindly organised for me

Trying to be hopeful

I’ve recently been to a few different Manchester events and I’ve bumped into so many people now that I think most know about our impending arrival.  People constantly ask me whether I’m excited about the new baby. The truthful answer is simply that I will be relieved when baby is here safe and well, when I can see with my own eyes.  Until then I can only try to be hopeful for the future.

Thanks for reading.

Sarah

Always Violet Skies x

Surviving after Child Loss

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Whilst I was sat on a train heading to Glasgow earlier this week I decided to write a few blog posts touching on subjects people have been curious about.

How do you cope with losing a child?

People often ask me about how we coped with losing Violet and about the techniques we employed to try to help ourselves get through this time.

Force yourself to do things

We tried to remember what we enjoyed about life when our daughter was still with us. We focused on making ourselves do these things even though we didn’t want to and certainly didn’t have the motivation.

It all began with us still going on a mini-break to the Lake District only a few weeks after she had died.  A break we had already planned and paid for when our daughter was still alive.  That trip was an extremely hard one for us and we only stayed there for the bare minimum of time. 

We also had lunch at L’Enclume that I had arranged as a belated birthday surprise for my hubby months earlier.  We just went through the motions and returned home early on the final day as we felt lost.

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Cartmel, Lake District

What did you enjoy before?

The things we had enjoyed doing as a family trio were travel. Violet was a true jetsetter and travelled more in her short life then many adults do in theirs. We also liked dining out in new places. 

Admittedly the fondness for dining out was more mine and my hubby’s as Violet disliked food although she did enjoy people watching.  She was always good as gold too preferring to use high chairs to rest her books on for reading. She often got praised by staff for how clean and well behaved she was.    

I work in travel and hospitality PR so my work has always channeled my passion but I felt as though this love had disappeared with Violet.

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Violet watching the Snoopy film on the flight to New Zealand at 7 months old

After the initial Lake District trip we continued to make sure we planned and booked other things in advance. Then we had less chance of being able to back out and change our minds at the last minute.  Don’t get me wrong there were quite a few dinner reservations we made and then couldn’t be bothered going to. Or arrangements with friends we had to back out of as we simply couldn’t face it.

Remember to mark anniversaries

We jointly decided that we should focus on ensuring, despite our misery, that we booked restaurants or mini-breaks for anniversaries and birthdays.  We encouraged each other to make an effort to keep the reservation. We often found that only one of us would wobble and want to back out of plans.  So we worked as a team to persuade each other knowing that it was for the best in the long run.

Book things in advance

We planned trips to places we had already wanted to visit but only for a few days at a time. We knew a big trip would be too much for us.  Places like Florence in Italy for Valentine’s day. Bilbao in Spain to visit the Guggenheim. Montenegro to escape for Violet’s anniversary. Morocco to escape Arthur’s due date etc.

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Sunset in Bilbao, Spain

Slowly but surely after nearly 2 years I can now talk again about travel being a passion of mine without instantly feeling guilty about it. Now I realise that this was also a passion of my daughters and something she would still relish if she was alive today.  I also embraced a new hobby for photography, especially landscape and architecture.  All the photos in this blog are mine.

Always a work in progress

I’ve not yet gotten there with the dining out thing. I’m still fond of food and work in hospitality however we don’t dine out as a couple anywhere near as much as we used to.   I know in time we will and this will be easier too. 

To the “friend” that said to us after Violet died “well at least you can now travel whenever you like and dine out whenever you like”. Well we did travel and dine whenever we liked with Violet. She loved it and we can nearly do this again without pangs of guilt and imagining what she’d have thought of it/been like in these places. Every day is tough.  It’s not as easy as “at least you don’t have to arrange a babysitter” that we’re constantly told by people.

Hang in there with everything in life some things take practice.

Love Sarah

Always Violet Skies x

Anniversaries of loss

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Anniversaries after loss are always really hard for all those family & friends who were close to the loved one.

Commemoration

Talking from experience it really does help when others remember our cherished one on this day and when they commemorate their memory in some way, it reassures us that their legacy will live on.

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Never forgotten

Our worst fear is that our much loved child, brother, sister, mum, dad, family member or friend is forgotten so today take the time, observe the silence at 2.30pm today, light a candle, say a prayer or just give a thought to all those who lost their lives in the Manchester bomb last year and know by doing that you are fulfilling the wish of their families and friends in that they are not forgotten.

We will not forget them. Bee strong everyone. 💜🐝

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The Light at the end of the Tunnel?

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Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.

Inquest

Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.

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Will this be the light at the end of our tunnel?  (photos taken beneath a glacier in Iceland)

AvMA

Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.

Questions for barristers

My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.

Violet on 26th Sept 2016

Stress and worry

The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.

I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.

Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.

Love Sarah

Always Violet Skies 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

Traditional holidays like Easter are the worst

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Lots of people this week were talking about how they are looking forward to the Easter weekend and spending much needed time with their families and children. I find myself forcing a smile and having to say “I bet”. Then they ask if I’m looking forward to a break and again I smile and say “oh yes of course”. I don’t say that for me my break is being at work away from all the reminders that we have a massive gaping hole in our lives where our daughter should be and isn’t.

Our Easter should be

We should be looking forward to the weekend possibly organising Easter egg hunts in the garden, taking Violet to a farm so she can pet all the animals and we’d take her to the family music events in Heaton Hall too as she’d have loved those.

Loving bad weather news

Is it bad that part of me when they announced we’d have another cold spell this weekend with possible snow thought ‘oh good it’ll save me having to watch smug families going out enjoying spending time with their children, that just hammers home more clearly what we are missing or even having to watch some not enjoying their children, yelling at them which I find even harder to stomach’?

Easter is new life

They say Easter is the time for new life and in previous years I used to find it cheerful and uplifting, as it also meant we were getting close to my birthday, which I used to find exciting. Now it is just a reminder of another year without my precious daughter. Sometimes I feel like a prisoner in a jail striking off lines on the wall with every passing year, while we wait and hope to see Violet once again.

Spring is a time of growth

Spring is the time for growth and lots of children have growth spurts once the weather starts improving in line with more vitamin D and sunshine. It reminds me that our daughter isn’t growing anymore and that she is permanently stuck at age 15 months. She will always be that age in our minds and hearts. We never saw her walk, talk in proper sentences, dance or even eat. She never said “mummy”. This is the really heart breaking thing the realisation of all the things we will never see her do or experience with her.

Make the most of quality time

So if you have children this Easter please make sure you do make the most of your days off work and spend lots of time with them making memories. Hopefully you will always get to enjoy seeing your children grow every year but, if like us, something horrendous happens, then you will only ever have the memories to last you for the rest of your life so make sure they are good ones!

Take photos and make films

Take that photograph and film them opening their Easter presents or doing that Easter egg hunt because it will be over in a flash but the film or photo will last a lifetime, meaning so much to the relatives who bought them that present or organised that egg hunt.

Count your blessings

Also do me, those who have also lost children, struggled to conceive or would just have loved a family but couldn’t have one, a favour and when you feel like your children are getting on your nerves this Easter, stop for a moment. Take a deep breath and for a minute realise how truly lucky you are and that there are those of us who would happily take all the tantrums in the world, sleepless nights and naughty behaviour just to have our children back. Appreciate your families and try to enjoy the moments, as they really don’t last for long.

For all of us without our kids at least we have chocolate!

Happy Easter

Love, Sarah x

p.s. all the photos in this post were taken at an artisan chocolate factory called HR Chocolate established by artisan baker Haflio Ragnarsson in Reykjavik, Iceland.

The real American meaning of Mother’s Day

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I recently discovered through joining an online support group called the Tigerlily Trust that, whilst Mothering Sunday as a concept in UK came from an 16th century English tradition of annually honouring your mother in church the more widely known Mother’s Day was founded in America. In 1907 a lady called Anna Jarvis, wanted to do something to honour her mother who had lost 7 babies.  This original version of Mother’s Day was created to remember and honour her grieving mother.

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The original Mother’s Day

Anna wanted to create a day where people could honour and treat grieving mothers. To actually recognise their pain and suffering in a day of remembrance. 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 Mother’s Day as we currently know it was born.

Ironic

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.

Once a mother always a mother

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, however 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!

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Me & Violet on holiday in Cyprus she was 10 months old

Grieving mums

Anyway to all those grieving mums out there please remember this day was created exactly for women like us. 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.

Message for all

To all the mother’s out there who have their babies please remember that this day was created for grieving mothers. Mothers who are exactly like you, 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.

Big love, Sarah x

Grief, Anxiety and Confidence

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Unless people have been through something similar themselves, they don’t really understand that when you’re grieving, yes you go through waves of sadness, anger and frustration at the world but there’s a huge element of anxiety too.

Anxiety

The anxiety affects every aspect of your life. Almost as though because the worst thing ever actually did happen, then what’s to say something else bad isn’t possible too. This heightened sense of danger makes you nervous and afraid of things that previously you wouldn’t have been concerned about.

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Slipping on ice (photo credit: U.S. Air National Guard photo by Tech. Sgt. Lealan Buehrer)

Like this week the road outside our house was very icy and there was a time I wouldn’t have cared but I was reluctant to go outside, as I know how accident-prone I am. The thought of falling and injuring myself was too scary to contemplate.

Risk avoidance

I find myself constantly trying to avoid risk, whereas as an entrepreneur for many years, risk and calculated odds was something I excelled in. I could easily identify what to take a chance on and what to avoid based on pure instinct. I no longer trust my own instincts.

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Violet the morning of day she died playing happily with her balloon.  Trying to bash me with it!

The morning my little girl died the hospital said she was doing really well and I could see with my own eyes she was better than she had been for weeks. We were all so very happy. I messaged everyone with photos showing how well she was doing. I thanked every single God that she had turned a corner. That evening she died suddenly and I realised that my eyes and instincts could lie. Also that medical specialists don’t know everything. That deeply affects everything else in your life. It makes me question it all. All of a sudden is “green” really green?

Questioning everything

Not only do I question my instincts more but I also worry about things I never used to. I constantly question everything…

Am I doing a good job for my client? (even when they give me positive feedback!) Am I still a nice person?  Have I turned bitter because of losing my child? Have I offended someone somehow because they didn’t phone me back?  Does xxx still like me? What if xxx is just trying to be kind because they feel sorry for me?  Have I made that person uncomfortable with my honesty? Did xxx feel awkward because I brought up a story about my daughter and they didn’t know how to react?  Am I any good at my job? Can I even write? Do I actually know what I’m doing?  Does anyone care about what I think? What if I burst into tears how embarrassing?  What if no one wants to speak to me as they think I’ll be miserable & I’ll depress them because bad things always happen to me? Maybe xxxx is avoiding seeing me because she thinks her baby/pregnancy/kids will upset me?  Perhaps xxxx doesn’t want to have to deal with any negativity as she’s all about positive thinking & I have issues? xxxx clearly doesn’t speak to me anymore or contact me because I make them sad or feel awkward? What if I drive other friends away in the same way? Am I acting odd in social situations?  Am I stuttering? what if…what about…Why did that bad thing happen was it because of me?

Confidence

These constant niggles and questions I now ask myself all the time. They started when Violet died and they aren’t going away.  They increased even more after Arthur died, as he gave us so much hope for the future and then our world became doomed once again. These thoughts now chip chip chip away at my confidence in every area of my life, so some days I almost feel like I shouldn’t even bother. I find it a real challenge to drive myself onwards, often having to give myself evidence as to why certain things aren’t true. Why some things aren’t the case.

I’m seeing a great counsellor, finally (as I have been through a few, some who I made cry & others that ended up being aggressive with me but that’s a post for the future!). They are trying to help me to work through these issues.  You don’t usually hear people talk about confidence and anxiety when they’re grieving but I’m learning now that it is far more common than you think.  Quite a few people I have spoken to who have lost a loved one have said that it also really affected their self-confidence.

Thank you to you all for your patience with me and for helping me to believe in myself again!

Love, Sarah x

Always Violet Skies

You might be interested in reading these posts –

The challenge of a rainbow pregnancy

PTSD with a rainbow pregnancy

I have my rainbow what now?

Our second rainbow

Sleep anxiety with rainbow baby

Question time: the questions I dread being asked

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At work events

For those of you that don’t know, I do PR and marketing for a living so that involves at times attending networking events, black tie dinners and entertaining clients. In the past I’ve always excelled at making small talk and creating conversation with new people. I used to find it easy to get a rapport quickly. However now I find myself dreading strangers asking me questions that are usually quite normal to ask when getting to know someone. Questions such as “do you have any children?” or “do you have a family”.

Honesty is the best policy

I then have a choice do I lie and say “oh no I don’t” then the conversation can continue to move along in a light hearted cheerful way? Or do I tell the truth that I have had two children but unfortunately both have died? This honest approach is the one I usually use, as I don’t believe in lying to people, especially when my job is formed on the strong foundations of trust and honesty. It’s all about building relationships.

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Violet at a few months old

The more I practice the easier it gets for me to deliver my “Yes I did have two children but unfortunately they died. I had a little girl who died a year last September at 15 months old and a little boy who only made it to 22 weeks of pregnancy. He died last September because of an incurable brain abnormality.” And “no we don’t know why my little girl died. The coroner opened an inquest into it and we finally have an inquest date of 17th May.” The first few times someone asked me I ended up in tears during the inevitable questioning that ensued afterwards and made my guests feel awkward that they had upset me. Now I have it down to a tee and can deliver explanations, answer questions in the same matter of fact way I tell people about where Randall & Aubin source their fish!

It’s almost becoming natural now for me to talk about it openly at work if I’m ever asked but I worry that people may think I’m cold or detached as I now rarely get upset at all in a work environment. I find myself able to talk about my children in almost a matter of fact clinical way.

Behind closed doors

Afterwards once I get home is a different story as I find I have to have a little cry to let the emotion I bottled up out and if I find myself having to tell lots of different people my sad news at a larger networking event or dinner then it can sometimes can drain me emotionally for days.

I seem strong

People assume because I can put on a brave face for work and social situations that deep inside I’m strong, tough and can cope with anything. Sometimes they then feel the need to share their problems, dilemmas and trials with me, thinking if I can handle losing my children then I can maybe help them too. They don’t realise the tidal wave style flood I’m often holding back under the surface. A volcano more often than not looks just like a still stationary mountain from the outside but inside there’s a great deal bubbling under the surface that no one sees until the big outpouring or eruption, That’s how I feel most days.

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Photo of Pat in Iceland just outside Reykjavik

So yes I may seem strong, calm and together on the outside but you’ve no idea the effort that that can take in order for me to put my “game face” on (I mean that in the together psychological sense rather than a make up one!). Yes I do care about my friends and other people, so do feel you can speak to me but please remember there’s a limit sometimes to what extra stress I can take on board. This is especially the case if your stress in the grand scheme of things isn’t exactly that life threatening.

Cancelling plans

Please forgive me also if I make arrangements to see you and then cancel at the last minute sometimes I get so emotionally drained that I can’t face having to make conversation with anyone.

Thanks for reading,

Love Sarah x

Always Violet Skies

You may find these posts interesting too –

After the Rainbow

Mothering after loss

Making over motherhood