These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.
Lack of control
I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).
The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.
When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.
Regaining control on life
I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.
Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.
More of a control freak
Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.
My advice is to try to do other things you can control to try to balance out those things that you simply can’t.
Big hugs and lots of love
Always Violet Skies xx
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In early September when kids start or go back to school it’s not so much the hundreds of photos of them lined up in front of either a front door or a fireplace that irritates me but more the stupid comment(s) that accompany them. So to save me from adding a passive aggressive and brutally honest blunt comment in reply to some of these posts I decided instead to write this, so hopefully if you care you will read this and think before you write that irritating social media post.
Here are those comments
“I wish he or she would stop growing” errr no you don’t because that would mean they would die and then be dead like my daughter who remains 15 months forever.
“Oh they’re growing too fast” at least they are growing there are lots of parents out there whose babies are sick and not growing fast enough. Be thankful you’re not them and don’t insult these parents by complaining when your child is healthy and thriving.
“Oh I wish they would stay as babies forever” errr no you don’t see my earlier comment above. Would you like it if they died then they would always be a baby?
“I miss when they were little” that’s why taking photos is so important but be thankful you don’t just miss them because they are no longer with you.
“It’s all going too fast.” You know what life tends to go fast when you’re enjoying and/or loving things. Try sitting in a hospital chair next to a sick child and your days seem to drag on and on. Or heavens forbid sit next to their grave. There are lots of parents sat in hospital with their school age child who is too sick to attend school and I can tell you their days just drag on. They would give anything to be doing a school drop off instead and waving goodbye to a child at the school gate rather than in an isolation ward as they nip to the loo.
“I wish time would stop” no you don’t because then you would be dead. Do you want your child or family to grow up without you? Think how extremely lucky you are to be alive now and living in the reality you have. Embrace every second and live in the present not the future because you certainly don’t want to be living in the past or to only be alive in someone else’s past.
Share those photos
So folks if you feel the need to share photos of your little darlings in their school uniforms to celebrate that they are growing, healthy and happy. To thank the universe that they were born to you in a country with free healthcare and education, so they can actually go to school then great share away. But please out of respect to those of us not in as privileged a position as you don’t wish for your children to stop growing, for time to stop or say that you are upset they are going to school. Be happy and be grateful. Appreciate the now and embrace the moment because you are right about one thing it isn’t happening again. Relish the time and moments. Take the photos, make the memories and remember to feel happy not sad. Embrace this exciting new chapter in you and your child’s life – hopefully there will be many more yet to come too.
I know a hell of a lot of people who would love to be buying a new school uniform, waving their child off at the school gate and at the end of the day hearing all about how their first day went. Myself included. This September Violet should have been starting Primary School and that she isn’t hurts us beyond belief. We would do anything to have her here now. We know as a little book worm at 15 months that she would have loved going to school. So if your child is attending school this September be thankful and celebrate it but don’t for a second wish for something different.
Big love, Sarah
Always Violet Skies x
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So our little rainbow baby had her one-year inoculations the other day so we had a few days of high temperatures, a distressed clingy baby, waking every half an hour over night and whimpering in her sleep. It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day.
Our first born Violet died suddenly at 15 months old and looking back her health slowly deteriorated over her final months so slowly we didn’t really notice it until it was almost too late and then it was too late.
Our rainbow baby, Aurora Violet’s baby sister is now approaching 13 months old so we are ultra sensitive to any slight change in her behaviour, routinely checking her temperature and we whisk her to see the GP as soon as she coughs more than a few times. Over protective parents have nothing on us!
Violet in her final months started sleeping a lot worse than she did before and we assumed she was waking because of hunger but discovered on admission into hospital that it was because her oxygen levels were plummeting. Aurora is displaying similar sleeping patterns so we’re awaiting sleep study equipment to monitor and check her oxygen levels while she sleeps.
Our rainbow baby has an appointment with a top lung specialist too, even though as yet she currently doesn’t have anything wrong with her chest (that we can tell). It makes us feel better that she will be double-checked. You may think “what a waste of that consultants time if there’s nothing wrong with her” and someone expressed that to me.
Well her sister saw countless GPs, several paediatricians at two different hospitals, several accident and emergency consultants, a variety of different registrars at Manchester Children’s Hospital, with varying levels of qualification and experience. Yet not one of them managed to accurately diagnose Violet while she was alive. It wasn’t until after a full coroners inquest nearly 2 years after her death that we even found out what the issue had been. This top lung specialist was supposed to see Violet when she was in hospital but she died before he got around to seeing her and perhaps he may have diagnosed her or not we will never know.
So I’m not sorry in the slightest if by now playing the “my dead baby” card means that my rainbow gets the best specialist healthcare because you know what she and we bloody well deserve it. I have paid my taxes (as have my family all our lives) and we fully support funding the NHS which yes needs more funding today so babies like Violet don’t die in hospital while waiting to see a specialist.
Until you have been in our shoes and watched your child deteriorate, suffer and then die in front of you whilst no one has an explanation as to why. Then come object to me but until then I will stand and scream if I have to until I know my child is safe, healthy and happy.
If your child is ill too let me know as I’m happy to advise or scream for them too.
Maybe we didn’t shout loud enough with Violet? Maybe we didn’t kick up enough of a stink? Maybe I should have bundled her into my car when I decided Manchester Children’s Hospital weren’t doing a good enough job and driven her to Alder Hey hospital?
Well you know what this time if I need to then I bloody well will and god help any healthcare admin person who dares stand in my way!
Have you ever had to question healthcare professionals? During Violet’s short lifetime we experienced the very best of the NHS and the very worst too. What are your experiences?
Always Violet Skies x
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There’s been lots of talk this week about people having a “blue Monday” or a “blue week” as apparently people are skint from Christmas/New Year/Sale shopping and have fallen off the wagon when it comes to New Year’s resolutions. Well if those are your major problems in life to be upset over well boo f*cking hoo or at least that’s what I want to say to people.
Of course I don’t wish to belittle anyone who is genuinely suffering from depression, as it is an awful illness but those people who are sad because of minor issues like the weather I just want to grab and violently shake.
Feeling blue everyday
I wake up and every day is a blue Monday, as the first thing I think of when I open my eyes in the morning, like most parents, is my children. I’m then slapped in the face by reality and the fact only one of them is alive. My little girl Aurora makes me smile despite the blue start and proves there is always a little sunshine in the darkness if you focus on the light no matter how hard that can be. I’m so used to feeling “blue” that it has become just another part of me.
On the positive side because of this sadness within me other things going wrong seem to just be absorbed into the same abyss that’s already there, so I don’t feel anymore sad but exactly the same as I did before. For example our washing machine just gave up the ghost and a few years ago it’d have meant maximum stress about the cost but we simply ordered a new one on our credit card, to be paid for later all sorted. Minimum drama and less fuss as my mum says “don’t sweat the small stuff”.
So to those of you who think you have issues this week then….
You’ve put on a few pounds since Christmas and the diet you started on the 1stJanuary you’ve given up on already, so now you’re depressed. Think yourself lucky at least you’re not living on the streets homeless and hungry. At least you’re healthy too and not in hospital battling some horrendous disease or sat beside a loved one who is.
The weather is a bit grey and miserable so it’s making you feel down. Well you do live in the UK and it is winter so get over it or look to emigrate. Change your situation. Remember also that grey and miserable can be pretty too just change your perspective and wear bright colours to compensate.
Skint after Christmas
So you spent too much money over Christmas and New Year so you feel a little down. Why not start a side line business connected to a hobby or dig out some things you don’t want any more and sell them? Basically stop moping and get moving. Do something about it and change things. You have the power! (Now I sound like He-man I do apologise) Websites like Ebay have always been popular but also look at selling things through sites and apps such as Depop and Facebook marketplace. If you’re really struggling then get advice from the Citizens advice bureau they can give impartial advice on debt and other issues.
Put your money to better use
Given up on whatever New Year’s resolutions you started? If they involved spending money on gym membership, then cancel it and donate the cash to charity, think of the actual good you can do with it instead. The time you’d have spent in the gym you can spend volunteering at a homeless shelter, local dogs home (that’d be great free exercise!) or visiting elderly people? Think of the good you can do for others instead of focussing inwards on how bad you feel personally. Stop being selfish and think of other people instead. I can honestly tell you that you will start to feel much much better just try it!
You can easily find volunteering opportunities in your community via sites like the Do it Trust
Chin up; keep going and soon it’ll be springtime.
Always Violet Skies
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One thing I find a coping mechanism for my grief is to plan travel and adventures as I feel it gives us something to look forward to and a different focus for the future. So this weekend I’m spending a little time planning our travels for the first half of the year, which also include two family weddings on opposite sides of the earth!
Round the world with a baby
I’m often asked how we can consider travelling to the other side of the world with an 8-month-old baby well we have done it before with Violet when she was just 7 months old. I can highly recommend you travel with your baby’s while they are little, as even though they won’t remember the trip believe me the new experiences they will have and people they will meet will shape their personalities. You can like us take lots of photos to show them when they are older too.
If like us you unfortunately lose your baby at 15 months old then at least you will have more happy rich memories of them from travelling and spending more time together as a family. Priceless!
Anyway for those of you who might be considering taking my advice and travelling with your little ones here’s a blog post I wrote a few years ago after our first long haul trip with a baby Violet to New Zealand. I hope it inspires you to travel more in 2019!
Ten Top tips for flying with a baby
After travelling over 22,000 miles from UK to New Zealand and back via Singapore and Bali with a 7-month-old baby Violet in 2016 we now have some top tips for anyone flying with a baby.
Request a bassinet
If your airline is long haul then you should be able to request a bassinet for your baby which will mean you will need bulkhead seats so make sure you select these when checking in and choosing seats online. A bassinet will prove useful not just for when your baby sleeps but they can be propped up to play with toys too.
It goes without saying that you will have spare outfits for baby but make sure you have extra clothes for yourself in your hand luggage as there’s nothing worse than having to sit covered in baby vomit for the entire of take off/landing plus then 30 minutes of turbulence because the seat belt seat is still on.
Sleep suits and onesies we’d recommend for flying plus a zip up fleece or dressing gown anything snuggly and easy to remove. Layers and press studs are your friends.
We’d recommend packing a cotton hat for your baby as airline air conditioning can be fierce and surprisingly the vents seem to be above the bulk head seating so right near the bassinet.
If you’re on a long haul flight then a smaller change bag will be handier we bought one that was a mat that folded out with room for 2 nappies, wipes and change of clothing. It fitted into the seat pocket so saved time and easy to grab in a rush.
Extra muslin cloths
Take the large ones as these are multi-functional serving as dribble wipers, blankets if baby gets chilly, a stand in change mat, sunshade or a scarf for mummy!
If you are flying long haul and transferring on your journey then it might be worth investing in the use of an airport lounge as this can make a big difference when it comes to heating milk, food and changing your baby in a relaxed environment. Often lounge access isn’t too pricey either if you book in advance.
Some cabin crew will have the good sense to ask you, if you’re travelling with another adult, if you’d like your meals to be staggered so you both get to eat by swapping baby duties. This is a great idea and why not ask if this is possible when you board the plane.
Hand sanitising gel or spray
These no water needed hand sanitisers are a god send when you are on an airplane and its difficult to access a toilet to clean up before food.
Toys, toys and lots of toys!
Again it goes without saying but the more you have for your little one to do the better. We had a set of toys and books easily accessible for on board the first plane and another set in our other carry on so we could swap them over for the second connecting flight so she wouldn’t get bored.
Finally I advise you to relax – yes it sounds ridiculous to say this when you’re flying with a baby, possibly feeling totally stressed out like all evil eyes are on you the passenger from hell, but try your hardest to also make the journey as relaxing and as enjoyable for yourself, as your baby will pick up on your vibes so smile and see it as an adventure. Experience it through their eyes so the journey is exciting and new!
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.
Another year without them
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 two years
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 make resolutions?
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.
What I have learnt in last 3 years..
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…
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)
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.
Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.
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
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.
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
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.
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.
Focus on your learnings
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.
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”.
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.
I’m a mother of three
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 baby 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.
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.
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?
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.
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.
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.
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.