Mothering after loss

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

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

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

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

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Poorly little girl but check out that fabulous curl!

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

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

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

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

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

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

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

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

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

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

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

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

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

Big love

Sarah – Violet Skies

Have you read these other posts about Rainbow babies?

When you finally get your rainbow what then?

Distraction number 1

Luck, God or just random shit

Meeting an old friend

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

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

He brought the coffee and tea back.

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

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

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Me and Aurora upset as she had to have her coat on.

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

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

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

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

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

All suggestions welcome!

Love

Sarah x

Tommy’s Angels

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

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

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Tommy’s Afternoon tea party for 2018 Rainbow Babies

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

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

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

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

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

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

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

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Aurora with one of our “Tommy’s Angels”

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

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

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

Love

Sarah xx

When Mother Nature has other ideas

For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up).  Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.

My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west, and meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.

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Wednesday morning 6am

Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.

Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed thanks to medical science then only to die from an extremely rare lung disease.  Then I am diagnosed with a heart disorder too, that it seems I was born with.

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Violet’s butterfly in our garden reflecting the warm lighting from inside the house

My second baby was given the all clear as healthy at his 16 week scan to be told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR.  During both of these births medical procedures went wrong and I nearly died.   Then I was told the issues both babies had were probably genetic, inherited from me and after tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).

Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur, and this time it went smoothly producing the beautiful Aurora.  Perhaps she felt she owed me one!

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Aurora watching the snow – her first.

So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock, on the one day I really wanted to be able to see a consultant, shocked me at all.  I should be getting used to this by now.

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Our neighbours snow covered garden so pretty

I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up.  It really is like the shipwreck analogy of grief, I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again.  Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!

All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.

I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.

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Good job the snow is so pretty.  Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature.  Keep warm.

Big love

Sarah x

New Year learning and growth

Starting a New Year can give people much needed motivation to make changes in their lives and lots of people look to make resolutions for what they will do differently this year.  This “new start” can be extra stressful and upsetting for those who have experienced child loss or indeed perhaps the loss of a different close loved one too.

The New Year marks another milestone in your personal journey of loss.  Another year without them.  Another year where you are a year older but they won’t age at all.  Another year where you won’t hear them laugh, celebrate a birthday or just hold them again.  Our loved ones are frozen in time and the changing year reminds us that the rest of the world is moving on without them.

The last 2 New Year’s were extremely difficult for us as the one thing we wanted to be able to change – to bring our children back – we just couldn’t do.  The year before that we also found difficult in a different way because that was the year I nearly died in childbirth and Violet had open-heart surgery at the time we thought that was our toughest year but we had no idea what was to come!

How can you possibly have New Year’s resolutions when the one thing you want to change you simply can’t change or control ever?  Instead I learnt to focus on looking at what I had learned in the past year and what if anything I could grow from.  Was there anything positive I could build upon and develop for the following year?  It really helped me to recognise the negative and bad things but also to then try to move away from them to focus on the good.  To build on those instead.

So here in public for the first time are the things I have learnt from the last 3 years forgive the brevity with summaries as otherwise it’d be a novel…

2015 – Key experiences were getting married, father-in-law dying suddenly, difficult child-birth (both nearly died, spent weeks in hospital & Violet had open heart surgery to save her at 4 days old)

Me & Violet at Alder Hey
Violet in Alder Hey awaiting heart surgery at 2 days old

What I learnt…

  • Sometimes positive thinking can help to get you through.
  • Small can be very mighty indeed.
  • Science is amazing.
  • Even the cleverest most experienced people make mistakes.
  • Always trust your instincts.
  • Children’s heart surgeons really can be miracle workers and are near to God’s. I worship one called Mr Prem and still do.
  • Alder Hey hospital is amazing.
  • Ronald McDonald house charity is amazing.
  • I am very lucky to have such a close family – brother and sister the best in the world
  • My mum is a legend.
  • I made the right decision marrying my soul mate who turned out to be the best father and husband ever.
  • I have fantastic friends.

2016- Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.

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Violet watching the Snoopy film on Singapore Airlines on way back from Bali

What I learnt…

  • Always give back to those who have helped you – we raised £1,000 for Ronald McDonald at our wedding reception.
  • Travelling with a baby is amazing everyone should do it, although only visit places where you can drink the tap water until your child is old enough to know not to swallow water in showers or bath.
  • Your life can change in a heartbeat.
  • I would willingly give my life to save my child but I wasn’t given that choice.
  • There’s nothing more precious than family.
  • Sometimes doctors & specialists don’t have all the answers
  • All the positive thinking and prayers in the world sometimes can’t help you.
  • You only know your true friends when your world ends.
  • Child loss is a pain like nothing else.
  • You think you knew pain and misery before but you were wrong oh so very wrong.
  • My husband is the most amazing person in the world.
  • Focusing on helping others can help you to relieve your own pain.
  • Setting up fundraising can help you to try to take back some kind of control.
  • Knowledge really is power. It’s very hard not knowing all the answers or information or why’s
  • Some friends go out of their way to support you they are worth their weight in gold & others crumble by the wayside.
  • Family is everything.
  • Time is the most valuable commodity there is so make the most of every day.
  • Love never dies

2017 – Key experiences were a rainbow pregnancy, loss of our son through TMR, being told I probably have a genetic defect; having a hole in my heart diagnosed & then a second surprise rainbow pregnancy at the end of the year.

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Arthur

What I learnt…

  • You should value your health more than anything.
  • Never count your chickens before they’ve hatched or celebrate your baby before it is born.
  • Hope can come in many forms.
  • Child Bereavement UK are amazing.
  • Rainbows can reappear as fast as they disappear.
  • A dog can bring you so much joy and unconditional love when you really need it.
  • Child loss changes you as a person and that change is a permanent one for better or worse.
  • The old me died and was buried with my daughter in September 2016 no amount of trying will bring her back.
  • You have to put loved ones before everything else but not before your own health.
  • Kindness is everything.
  • Just because a baby is small doesn’t make it any easier to birth.
  • Saying goodbye to a baby you never really knew and that gave you so much hope for the future is very hard.  Choosing to say goodbye early is even harder.
  • Distractions are invaluable.
  • Sometimes you can’t understand or fight genetics
  • You can try hard to plan things but often nature finds a way to surprise you
  • Pregnancy is stressful but even more so when you’ve experienced child loss
  • You are not alone others out there have experienced the same thing
  • Always stand up for those who are unable to fight.
  • Always do the right thing for you and other people even if it is the hardest choice

2018 – Key experiences were a successful rainbow pregnancy, finally answers in inquest from the coroner about Violet’s death, birth of our third child a baby girl, a house renovation/extension, the first Violet ball for charity & my Nan passing.

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Me and a tiny Aurora

What I learnt…

  • Seize control of what you can control and smile and breathe with those things you can’t.
  • If you feel part of your life is uncontrollable then begin a new project or task you can control.
  • What will be will be
  • Go with the flow those hippies knew something
  • Tommy’s baby charity is amazing.
  • Stand up and fight for those who cannot
  • Sometimes the best decision isn’t the easiest
  • Helping to advise and support others who are also suffering in a similar way can help yourself too
  • Sharing is caring
  • Sometimes there are no answers or explanations as to why
  • Sometimes all you need as a listening ear and some chocolate
  • Caesarean sections aren’t the easy childbirth option but it was the best option for me
  • Breast isn’t always best when your baby has other ideas. Alive and feeding is best no matter how they are fed.
  • Being a mum of three when you only have one child to hold and nurse is hard.
  • Tiredness has a whole new meaning when you’re the mum of a new-born and have experienced child loss too
  • Being a new mum is difficult. Being a new mum who has watched her first child die and had to feel her second one die inside her is near impossible stress wise but at least I finally have a child who is alive and healthy
  • To live a long, happy, healthy life is the best we can ask for. I hope I’m as lucky as my Nan who was in her nineties.

You can see here clearly that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year.  There is something constructive that comes from the most upsetting and distressing of situations if you really look closely.  Remember and recognise what an achievement it is to be a survivor and what you have been through.

It is also possible to squeeze out a tiny bit of happiness from it all too.  As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.”  So flick that switch or light that flame even if it is on a very tiny candle your baby or babies will thank you.

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Light that flame

If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing”.

Love Sarah x

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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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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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.

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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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

When you finally get your rainbow baby what then…

Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end”  Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?

When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.

Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child, when you have a new one you don’t throw your old one away and forget about them do you? Or you shouldn’t.  If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?

I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.

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I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.

Autumn photoshoot - Ian Scott Photography
Credit ianscottphotography.co.uk

I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.

The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler.  That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?

Family photoshoot - Manchester Photography courses
Family photoshoot – credit Manchester Photography courses

I wonder what Violet would have been like today and what she’d have thought of her baby sister?  Do you ever wonder what if?  I do every moment of every day.

Love Sarah x

Distraction number 1

You may remember a post I wrote a few months back now about how I tried to not worry about my pregnancy by deliberately creating other things to do or organize in my life in order to stay busy.  One of these was an extension and house renovation project.

This two storey extension project began back in April and comprised of two new bathrooms, a new kitchen, full house rewire and new central heating with new radiators.  Getting rid of a very narrow galley kitchen and extending the back of the house to create open plan living with a large kitchen dining space.  We would also get a new bedroom upstairs so we’d have more room for visiting family and friends to stay with us.

Our old boiler was ripped out in April so we lived in our house for 4 months with no heating or hot water and for the most part had no rear wall either just chipboard.  Thankfully we still had an old electric shower so that was the sole source of our hot water other than from a kettle.  A temporary kitchen was set up in our lounge and dining room so we had our oven, washing machine and dryer and sink all in the one room.  Our fridge freezer had to be moved into the hallway next to the front door.  It was a combination of camping and being in an episode of Steptoe and Son. Thankfully it did work in taking my mind off worrying about the baby for a lot of the time as instead I worried about the mess, chaos, ordering the relevant materials needed in time and we had to decide on design of the kitchens and bathrooms.  We also boxed and bagged our belongings so they could be stored in the loft as the rewire and new radiators meant all of the floorboards being ripped up.  Then was the day-to-day dealing with the dust, mess and noise from builders.

I remember the midwives and specialists telling me I should try to have lie ins and afternoon naps to help with fatigue caused by my pregnancy and the hole in my heart (see this earlier blog post for more details on this).  I just laughed when they suggested it explaining the builders arrived at 7am everyday and you try sleeping at lunchtime when there is hammering, drilling etc.

Unfortunately our building work also ran over schedule and our baby Aurora arrived ahead of time by a few weeks so it did mean we had to get alternative accommodation when we first came out of hospital.  Thanks to an AirBNB stay and then some amazing next-door neighbour’s, who leant us their house while they were on holiday, the baby avoided most of the noise and dust.

So now we are slowly decorating, unpacking and sorting out our new-finished house bit by bit which isn’t easy with a newborn baby but we are so happy with our new kitchen space, we can fit more than one person in there at once, and bathrooms are exactly what we wanted so despite the craziness and my doubts half way in we’re pleased we went ahead with it in the end.

So far we have almost finished the kitchen space.  We went for a navy blue kitchen with copper accessories and a white mistral worktop, which is a solid acrylic that can emulate marble but is stain proof so much more durable, with a baby and a clumsy mummy we felt that was essential. The pendant lights were from Wayfair.

The stools I adore and they are from Cox and Cox.  Whatever you do though if your health visitor says they love them and want to know where you got them from, don’t tell them to just google Cox.  That caused a lot of laughs when the hubby overheard!

The seating area of our new downstairs extension will eventually have a new sofa but for the meantime with the budget blown we have created a little lounge space with Ikea Poang chairs, stools and rocking chair.  Added into this is a gorgeous rug from Dunelm, a sheepskin rug for cosiness, an original Moroccan silver lamp purchased in Marrakesh in January and some silk cushions that I’ve had for about 20 years.  The best buy is probably the faux fur stool I purchased today from Aldi for only £14.95 but looks more expensive.

I love being quite eclectic with my décor so there’s a real mix of new buys from the high street, old vintage things like the silk cushions I have had for years and hand me downs like the lovely chunky wooden coffee tables.  I like to get the odd piece from our travels hence the lamp from Morocco, I also got bright coloured fabric from there that I will swap into that room for the summer when we can then open both sets of bi-fold doors across the back of the house.

Have you bought any lovely things for your home from your travels?  And if so please share your finds as I’d love to see them?

This project has really helped to take my mind off things and it continues to be a passion of mine, although I’m miss impatient so want to finish it all at once when it will be a long term project over the next few years as we have an entire house to decorate and dress.

Please share some of your favourite home photos.

Speak soon, love

Sarah x

P.s. please ignore the state of our garden we will look at that next year! lol

Luck, God or just random shit?

I don’t know if I believe in luck.  I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history.  I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back.  Similar to Karma in what comes around goes around.

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I still have a fondness for churches.  Here’s Hallgrimskirkja in Reykjavik, Iceland

The energy, karma and positivity mantra was the way I always lived my life.  Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.

Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck.  She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”.  Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy.  Other family members and friends prayed for her in a multitude of different faiths.

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The Priory in Cartmel a stunningly beautiful place

Her surgery was a permanent fix.  People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey.  We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.

Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her.  After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died.  When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.

We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.

Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him.  Over the years I have raised thousands for charity.  I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….

As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone.  The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her?   I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.

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We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city

I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.

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An autumnal walk in the park with colds and coughs hoping the fresh air does us good

I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist.  I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.

So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version.  If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all.  Each to their own and I think child loss survivors need to push on anyway they can.

How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?

What a difference a year makes?

Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy.  Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath.  If he had he would technically have been alive.

He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post) but we knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision.  We still wondered and worried as to whether we were right.

We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother.  We entered a period of darkness even darker than we could imagine and felt our little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur.  A few months later we got the surprise news of another pregnancy.  A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.

Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.

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Aurora at 3 weeks old.

We named her Aurora as it means “Goddess of the Dawn” and “Light”.  We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.

Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.

He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital and we set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here.  There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.

Love and thanks

Sarah xx