Pregnancy talk

I’m now heavily pregnant so that means that strangers and anyone I meet can tell instantly that I am with child, which is fine I’m happy to talk about it.  The difficulty comes when they ask if it is my first pregnancy and I have a policy of always telling the truth so when I say it is my third.  I get comments like “wow you’ve got your hands full then”, “you must really know what you’re doing”, “you’re a glutton for punishment” and “are your other two excited about their little brother or sister”.

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A photo I took of a mother with her two children paddling in the sea in Morocco

Often I let them make a comment and then I move the conversation on without having to tell them that neither of this baby’s siblings are alive.  Occasionally the person I’m talking to will bring the conversation back around again by asking what my existing two children are? Are they boys or girls?  Then I have to explain that they were one of each but unfortunately they are no longer with us and that yes I’m sure they would have been excited to have a little brother or sister.

They then usually ask me what happened to my first two children and I tell them honestly or they nervously say “I’m so sorry” to which I answer “it’s ok” when clearly it isn’t then the conversation moves on.

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People often tell me “oh hopefully this one will be third time lucky then” and I know this comes from a very good place filled with love. I know we were very unlucky to have had the situation with Arthur but I don’t feel we were unlucky to have had Violet.  I know we were extremely fortunate to have known such a special little person if only for 15 months.  We were very unlucky to have lost her but would happily repeat the time over again and again in the style of Groundhog day if we could – well maybe not the very last 6 hours!

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Here’s Violet having a showdown of attitude with her bigger cousin Evelyn.  Sometimes I wonder what she’d have been like as a sister.

It makes being pregnant bittersweet and we are simply hoping this time to have a stress free birth experience too, as with Violet bless her we certainly had a lot of drama.

Violet’s third birthday

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

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

This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital in Liverpool. In Liverpool she had open-heart surgery at just 4 days old.  We had to sign a million legal forms and contracts saying we knew the odds were stacked against her.  That we knew she might not survive and return alive from the operating theatre.   And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”.  We also knew her chance of survival without the operation was nil and she was only alive because of the additional hormones and support she was being given.

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

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

The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital.  We chatted about all the different people she would meet, describing friends and family members to her in detail.  We spoke about all the places we would take her to including New Zealand to see her Uncle Tom, Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon.  We chatted about her Grandma and Nanna.  Said she would learn to swim.  We basically described to her then the life she ended up having crammed into a 15-month period.  I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!

Me & Violet in Cyprus
Violet in Cyprus in April 2016

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

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

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call and finally received it saying she was out and still alive! We were so relieved and our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her.  We thought oh no this is where we get told something bad has happened but we were told the opposite that the surgeon thought it was an 100% success and she wouldn’t need any other operations on that part of her heart again ever.  You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix.   This is the reason we are fundraising in her name for Alder Hey so superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.

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

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

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

This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old.  Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets, and then on her birthday we distributed them all around the area where we live.  Including taking some to her nursery, leaving some on the benches near the playgrounds in the local parks where she loved the swings, left some near the mural on Beech Road that has a violet coloured balloon in her memory, some elsewhere on Beech Road near to where she attended Babel Baby classes and we placed some on benches in the cemetery close to her grave after we took her birthday balloons.

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

Thanks for reading

Love

Sarah xx

Travel – A few days in Switzerland

I’m not a stranger to travelling alone having worked as a PR for travel clients I have travelled all over the world on my own so when a friend who was working in Switzerland invited me over for the weekend I jumped at the chance.

I got a cheap flight to Basil from Manchester and then got the train to meet my friend in Zurich.  I’d been to Zurich before as I used to have a Swiss client but I had only actually experienced it in torrential rain looking grey and miserable.  It was great to see the place flooded in bright sunshine and we walked around the beautiful old town and by the river.  It was stunning.

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Early the following morning we got the first of many train journeys to visit one of the world’s best spas inside Villa Honegg Hotel in Ennetburgen.

It truly was one of the most breathtaking spas I have been to with a giant outdoor hot pool that looked out over the Swiss Alps and Lake Lucerne.  It helped that we had glorious sunshine and a cool breeze that came down from the snow capped mountains.  The spa is sat on the side of a hill that was surrounded by farmland lower down and flower filled meadows in front of it.  Inside the spa there was an indoor spa pool and sauna facilities too.

The hotel had a restaurant that overlooked the spa with an outside terraced area so we ate lunch there with again stunning mountain views before we departed for the train station once again to continue our journey this time several hours travel to Interlaken.

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Interlaken can be described as the tourist centre of Switzerland with coach loads of Chinese, Korean and American tourists arriving into the town in order to explore the nearby sights.  We even noticed they have a Hooters bar to satisfy our friends from across the pond. The town offered a vast choice of accommodation including high end hotels and back packing hostels.  We decided to book an AirBNB apartment as we were only staying for one night – would be arriving late and leaving early the next morning.  The split level studio apartment was to a contemporary loft design, owned by the artists running the nearby modern art gallery, and was practical and functional with what we needed for a one night stay.

The following morning we headed again by train to climb Jung Frau the highest mountain in Europe.  We stopped off in Grindelwald a very stunning Alpine town half way to Jung Frau that sounded like it belonged in a Harry Potter book.  It is used as a base for hikers and skiing enthusiasts.  It was breathtaking surrounded by snow-capped mountains.  I could happily come back here to stay for a few days and enjoy the mountain air. Apparently this was the place Heidi was filmed.

We only stayed in Grindelwald for a quick coffee and then continued our journey up Jung Frau by train on the highest train line and ultimately train station in Europe.  The sun was still shining so when we hit the snowy surrounds I was relieved to have my sunglasses.  This was the most scenic train journey I have ever been on, absolutely stunning views from every direction and we climbed so high our ears reacted as they do on a plane. Once we reached Jungfrau station we then had to continue on foot to the Sphinx observatory, the highest point in Europe and it was truly spectacular.  My friend even stripped off her layers as the suns reflection on the deep snow was so warming.  Some of you James Bond fans may recognize the setting here as it was featured in Her Majesty’s Secret Service.

On our way back down the mountain we stopped off in Lauterbrunnen another pretty village this time it is one with stunning waterfalls where we enjoyed some dinner and chatted to some Australian tourists (yes they get everywhere!) before heading back on the train to Zurich via Lucerne.

The following day I enjoyed a leisurely lunch in Villa Villette in Cham on the banks of Lake Zug before catching the train back to the airport for my flight home.

Travel tips –

Flights – I flew to Basil from Manchester with Easyjet however the trains are so efficient in Switzerland that it could be cheaper to research travel into various different airports.

Train – I recommend you purchase a Swiss rail pass if you plan to travel around as we did as this as it is the most cost effective way to travel.

Luggage – there are inexpensive luggage lockers in most train stations in Switzerland so you can leave items as you travel to collect as you pass through the main hub stations to collect on way back.

Accommodation – there’s a wide choice of accommodation in Switzerland but if like us you simply need a bed for the night then take a look at sites such as AirBNB that can be more cost effective saving more money to spend on 5 class spas!

 

 

Anniversaries of loss

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

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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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?

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.

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)

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.

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

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.

 

 

 

 

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!

A Literal Broken Heart

When I was a teenager and even throughout my twenties I would talk about having a broken heart over an unrequited love or a relationship break up. Later on once I hit my thirties my parents 38-year marriage came to a sudden end and again I was “heart broken”. The world as I knew it ceased to exist. Then my beloved dog Max died suddenly that Christmas Eve and I was “heart broken” again.

It seems heartache and being “heart broken” is a familiar feeling that us humans often talk about but what I have experienced in the last few years shows that everything is relative and you can only compare the experiences you have been through personally. If you are fortunate to have only ever suffered the break up of a relationship then you will know this to be your worst emotional pain. If you have lost a relative or pet then this might be the worst pain imaginable.

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Max

After I lost my amazing dog Max I decided that I probably wouldn’t have another as the pain and grief after losing him I felt was unbearable, so I couldn’t face ever putting myself through that again.

Six years later I became a mother to Violet who was born with a heart defect and had to be rushed into open heart surgery at four days old, the stress and anxiety during those nine hours she was under the knife was at the time I thought unbearable, so we were relieved afterwards when we were told her heart was a perfect fix.

Me & Violet at Alder Hey
Reunited for the first time in several days after she was transferred to Alder Hey in Liverpool & I was still at St Mary’s in Manchester.  Cuddles before heart surgery.

Every time she had to go to hospital for a heart check up of course we were stressed again praying all would be ok and it always was, until she was rushed into hospital with suspected pneumonia in September 2016. The anxiety during those ten days in hospital was again almost unbearable and I think I even told friends that there was nothing worse than watching your child poorly, being tortured whilst doctors inject them/take samples and attach them to drips and there being nothing you can do to take the pain away from them.

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Violet during her time in Manchester Children’s Hospital in the days before she died

Then suddenly she died. Our precious daughter died. We then discovered a totally new level of pain and heartache that we had never even come close to before. Every other type of “heartache” I had experienced in my life until this moment paled into comparison. I actually felt my world had truly come to an end and the pain then and now is still sometimes unbearable but bear it we do, as we have no choice in the matter.  It is indescribable to anyone who hasn’t gone through it and an unimaginably scary though to those of you who have children who are alive.

Anyway within six months of Violet’s death I discovered that not only do I have a metaphorical “broken heart” but I was diagnosed with an actual physical broken heart too. It was discovered that I have what they call an ASD or hole in between the top two chambers of my heart so I now have truly broken heart both physically and emotionally. How ironic?

So life wise I guess the positive take on all of this is that it has helped us (my family) to put things into perspective. We no longer stress about the small things in life anymore and I tell myself that, at the end of the day, I have been through the worst thing imaginable, so everything else, including possible open heart surgery on myself is easy in comparison.

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Dexter

Nine years after the loss of my beloved dog Max we adopted a two-year-old German Shepherd, as I now realise that I can cope with the loss of a pet if I can somehow survive the loss of two children. So we welcomed Dexter to our family and we now have a giant fur baby to look after who gives us unconditional love. What’s not to love about that, even if it only lasts for 8 years? It is relative after all and we have chosen to live in the present moment, as who knows if a bus will hit us tomorrow, so make the most of today folks always.

Love Sarah x

A Mother’s Guilt

I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other and about how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?

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Their shared graveside

I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.

We never knew Arthur. Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement, if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound. Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate.  He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.

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A photo of Arthur

It’s much easier for us to remember and to talk about Violet as lots of people knew her, so there are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.

Arthur bless him doesn’t have any shared memories or friends and didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s but we’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.

This blog is full of photos of Violet and that’s great because we have lots of her and she loved having her photo taken too.   It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.

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Violet at 1 year old

I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible, and she would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?

What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?

Love, Sarah x

No answer & 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.