A broken heart

All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?

For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.

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My discovery

I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.

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Of course I have a broken heart

I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.

He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.

Exhaustion

Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job.  Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.

Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?

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Meh

It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.

The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.

What are you wishing for this Christmas?

Love Sarah xx

Always Violet Skies

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Tis the season to be jolly

Well not for lots of people it isn’t. People who are alone, homeless, financially struggling, have mental health issues or who have lost someone dear to them it’s often a time of year they dread.

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Violet’s one and only Christmas morning

For us we face another Christmas without our little girl who’d be an excitable 3 year old this year and our little boy for whom it’d be a first Christmas. My husband will experience another year without his beloved father who died just before becoming a grandpa, a role we know he’d have excelled at. This year however, unlike the last two years, will be bittersweet for us as we now have our gorgeous little rainbow baby Aurora who will be 5 months old.

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Violet in her Christmas jumper and matching trousers!

The first year after we lost Violet we actually couldn’t face Christmas at all so a lovely friends parents’ leant us their holiday home in the Caribbean and my mum treated us to flights so we could escape the whole season for 2 weeks. We were very fortunate to have such wonderful friends and family that could afford to help us escape in this way. I know others often aren’t as lucky and may choose to escape through shutting the world out at home. Or maybe their escape is immersing themselves in other people and going through the motions of Christmas, perhaps if they have other children then they have no choice.

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Me with Violet this time 3 years ago.  Photo taken by the amazing @hollygoeslightly

Last Christmas we spent with family who happened to also be going through a hard time, albeit for a different reason, as we wanted to do what families should do and be there for one another. Although we did escape for New Years and what should have been our Arthur’s due date, as we couldn’t face that so we booked cheap flights and headed off to Morocco.

This year will be the first year we don’t escape Christmas or New Years, instead we are inviting family to spend it with us. We will wake up with an excitable 4 year old niece on Christmas morning and it will be a first Christmas for our littlest nephew as well as our daughter. The fact that we can help to make it a magical day for my niece and nephew, I think will help us to get through it.

What’s sad is this year the kind family who helped us to escape that first Christmas have just suffered a devastating loss themselves so this festive time will now be especially hard for them. Our hearts go out to them this year.

Our motto is that if you are able to celebrate Christmas this year then embrace your family or loved ones. Make the most of every second because you have no idea what the future holds. Also if you can help to make someone else’s Christmas better or easier this year then do it. Whether you donate to a local food bank, drop Christmas presents into a charity looking after disadvantaged children or just invite your elderly neighbours round for Christmas dinner, nothing says Christmas like looking after those who are suffering by easing their pain or helping them to also have a nice experience, even if for one day only.

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Me & Violet with my brother & sister with their little ones 3 years ago

I can’t wait to hear all your lovely stories of goodwill and sharing. I’ve heard lots already, as I’m blessed with lots of amazingly kind people in my life. So far there are tales of people stocking food banks with so much food they can feed many families over the 3 days of Christmas. Those who fundraise and collect donations for presents for underprivileged children. Some have collected blankets for the homeless.  Keep up the good work. They say money is like manure; it’s not worth a thing unless it’s spread around well I say the same can be said for kindness.

Sending big hugs to you all and I can’t wait to hear more heartwarming stories.

Love

Sarah x

A Magical Woodland

When I heard about this magical woodland event I was excited to attend with my family, including my 4-year-old niece and baby nephew too.  I hoped it would live up to expectations and we weren’t disappointed.

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Some of the girls in my family

The entrance

The lighting was breathtaking with different themes in various areas of the woodland. Special LED effects, changing colours, laser lights and hanging orbs made the park a sensory experience.  The musical choice made it feel as though you were entering a Harry Potter-esque world so felt truly magical as we entered the wood.

The woodland

Several paths wound their way through different sensory experiences to a central campfire area where you could purchase marshmallows on sticks to toast around the fire and there were a few food stalls there too selling hotdogs, mulled wine and sweets.  The gooey toasted marshmallows certainly went down well with my niece Evelyn.

Aqua rhythm

One of the highlights in the woodland was the Aqua Rhythm water fountain.   Jets of water danced to along to music and a laser light show accompanied it.  Evelyn and other children stood transfixed in front of it for quite some time.  My baby nephew, 8 months old, watched it from his pram wide eyed so this proved a sensory hit for babies too.

Owls

Just beyond the “Heart of the Woodland” there was an owl marquee so children can find out about and see owls up close. This included a Little Owl that proved a hit with Evelyn who wanted to take it home.

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Educational

It was also a fun educational experience as there were some great interactive puzzles and games for children and adults alike interspersed around the woodland.   The favourite for Evelyn was a game that distorted your voice and she spent quite some time making various bodily sounds through it finding it hilarious when it returned the noise with added depth!

Magic

There was a flamboyant chap in a flashing top hat that my niece described as “clearly a magician”, who introduced himself as a physicist so she was close!  He demonstrated to us the concept of a sonic boom using a giant sized Newton’s Cradle style pendulum, that was lit up so as the balls swung they lit up the sky around them.  The sonic boom you could hear rumble throughout the woodland.  It was an amazingly fun way to introduce children to scientific concepts, it made me think they need to invest in one of these giant Newton’s cradles at the Concorde visitors centre to explain more clearly this concept to children.

The rainforest area had dry ice that emulated mist and bird/insect sound effects to accompany the lighting that transitioned into different colours.  I found this area to be the most relaxing in the woodland. Whereas my niece said she found it spooky and when there was a load rumble from the sonic boom she jumped out of her skin, proving this is also a great experience to bring your kids to for Halloween!

Dry weather

We were fortunate to have really beautiful autumn weather, it was pretty mild and dry which was good as we had two prams with us. If it had been wet we would have struggled to push them round the site. So if you go when it is wet or after heavy rain I’d suggest taking a baby carrier instead to manoeuvre round the hills.

Summary

We had planned to spend an hour there but ended up spending just over two hours. There really was so much to experience we lost all track of time.  It proved a great way to tire out little and big ones. It was excellent exercise walking them up and down hills. Evelyn also ran off to climb on tree trunks and play with the interactive games too.

We had a wonderful time in the woodland it really was magical and my niece didn’t want to leave. We would highly recommend visiting before the experience finishes.

For more information and tickets which start from £12.50 click here

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Life after child loss

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

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

Delivering good news

Delivering the wonderful news that you are expecting a baby is usually a happy time and I’ve seen people make announcements in the most creative ways via social media including an older sibling announcing they are going to be a big brother or sister, a written sign in front of a pet dog, a cutesy family cartoon and even an eviction notice on the side of an older siblings cot. There are of course those that simply post the classic 12-week scan photo with their announcement.

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Arthur’s scan photo

For those of us who have lost babies, or perhaps are struggling to conceive a much desired baby, seeing these posts can feel like a real kick in the teeth or like rubbing salt into our open wounds. Of course we are delighted by the announcement and pleased that someone else, a friend or family member, has good news to announce but it still stings.

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Violet in hospital

We have some friends who kindly contacted us first to tell us personally about their news before they then announced it on social media and I felt this was an extremely kind gesture. If you have anyone in your circle of friends or in your family who have struggled to conceive or have had a baby die or have lost an older child, then please think about telling them your news in person before you announce it on social media to the whole world, as they can then prepare themselves for when they see it online. They will really appreciate the kindness of you telling them in advance of a more public announcement.

For some people baby and pregnancy announcements can bring a whole new meaning to FOMO on social media!

No answer & no conclusion…as yet

It’s very true that no parent can imagine the pain of losing your child or baby until it happens and 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

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

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 on paper.

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

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 and 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 which will then be a whole 20 months after her death and 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 the intervening 20 months of our lives we have been in a state of limbo awaiting answers and 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, but even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust and 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.

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 so it must be something super rare or undetectable by today’s technology.

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 and also 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

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.

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.

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’?

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 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.

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 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.

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

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 by a lady called Anna Jarvis, who wanted to do something to honour her mother who had lost 7 babies.  The original version of Mother’s Day was created to remember and honour a grieving mother.

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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 that 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.

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.

Someone said to me the first Mother’s Day after Violet died that I wasn’t to let the day upset me as 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

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.

To all the mother’s out there who have their babies please remember that this day was created for grieving 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, remembering 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

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