Lots of Aurora’s friends are now getting to the age where little brothers and sisters are arriving. She has been obsessed with babies for the last 6 months but now seems to notice and comment on photographs more than before.
The photographs she comments on are those of her big sister who technically should be older than she is now at age 5 but of course she died at 15 months so will be a baby forever. Aurora is finding it a hard concept to understand. She understands when she points at photos of my niece as a baby and I can say that was what she was like as a baby because she knows her as an older girl now.
There’s a baby in the house
When she points to say “my baby” at photos of Violet, because in the photos she is indeed a baby compared to 2 year old Aurora, and we say that’s your big sister Violet she looks very confused.
There’s a baby in the house
Today in the park she met her nursery friend Erin who was there with her new baby sister & on the way home she said my baby sister & I said yes you have a big sister who’s a baby. Even I’m confused goodness help a 2 year old!
Newborn Aurora at a Neighbours House
Any advice as to what we say to her so she understands better?
The unknown challenges you face with a rainbow toddler. Please let me know if you’ve been through anything similar.
Always Violet Skies,
Love Sarah xx
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So I have spent the last few years writing this blog about how to survive child loss and I’m pleased to say I have survived so far but then I saw the interview that HRH Meghan did when she was in Africa and still an HRH. Something she said in that interview really resonated with me and don’t get me wrong I’m not a huge royalist fan at all although I did love Suits!
Meghan said in that interview –
“it is not enough to just survive something, that’s not the point of life. “You have got to thrive”
This resonated with me as I suddenly realised that I owe it to my daughters (one an angel and one very much alive and thriving) and son’s memory to not just survive but to thrive.
Over the past few years the notion of enjoying something or loving life felt abhorrent to me. How could I do that when my daughter and son are dead? This abhorrent feeling has now been challenged by my rainbow baby who, as anyone who has met her will tell you, is larger than life and lights up a room as soon as she enters it; truly as her name means a Goddess of Light. How can we not strive to now enjoy life with her? I know Violet would want her sister to have a wonderful life and for us to enjoy our time with her too.
My why in John Lewis giving me the look that says “what are you doing mum”
Now my heart is finally fixed it is surely not enough for me to just survive life?
It made me think that the last few years have been about me working hard to continue on with life, to go through the motions and to try to rebuild my confidence, by to a certain extent, doing the same things I used to enjoy and have always loved doing.
I’ve re-evaluated a little now and thought about the things in my life that despite childloss I actually enjoy. I love photography. My hubby bought me a camera for Christmas after we lost Violet to try to encourage me to take photos of landscapes and architecture, which were something I enjoyed. Check out some of my photos in my gallery here.
Confidence loss is real after child loss. A friend a few years ago suggested my photos were good enough to be exhibited (I laughed it off), another friend offered to display my photography for sale in a boutique hotel (again I laughed it off as felt it was certainly not that good) and then more recently another close friend and client suggested I really need to do something with my amazing photos. Even just typing this now a little voice of the old me (pre-child loss) is screaming in my head “take every opportunity” as the old confident me used to seize every moment and opportunity that passed her way.
I suddenly realized and recognise that I need more confidence in my abilities again. That I should invest more time in this hobby that I enjoy and that people seem to think I have a talent for. I’m now doing a Diploma in Photography to improve my technique and confidence. Another friend has now offered to feature my work on the front covers of his magazines. Wow just wow I’m blown away and for the first time I’m going to seize this opportunity rather than just brush it away as I have in the past.
Travel is another biggie for me. I’m a travel PR at heart and I have a real passion for this industry. A friend told me about a new type of business where you can qualify as an Independent Travel Agent working from home and fit the training in around your current lifestyle and work. So I decided in my new “thrive” mindset to go for it so I have now qualified as an Independent Travel Agent and this I feel will be a game changer to my family’s long-term happiness. We love to travel. We don’t travel anywhere near as much as we did but I love travel. I love talking about it. I love planning it so why not utilize my passion to help others?
We have family and friends all over the world so why should we not be able to earn commission whenever we travel to see them. I love travel and have been to nearly every continent on earth so why should I not share my passion with others. If I can help them to plan and book their dream trip then this is amazing. If I can help them to do start this business too so they earn commission from their own travel also amazing. This is a business that neatly weaves in with my PR career and my photography passion too plus I get to take the family along for the ride.
I’m going to try to write a little more in my blog about motivation and health too as now my heart is fixed as I need to get active and back into shape again. Don’t get me wrong I won’t be running any marathons anytime soon but would be good to get healthier.
Also going to continue to renovate our home hopefully to make it a nicer place for my daughter as she grows and my hubby.
I plan to work further on charitable causes too to build a legacy in my son’s memory so watch out for something happening Spring 2021!
Thought I’d post this cute video just because….
I’ve now had a spring clean of my life. How about you what do you hope to change or build more of now spring is here?
If you want any advice or to share your hopes then I’d love for you to get in touch or post on here.
Big love
Sarah,
Always Violet Skies xx
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So today in 2018 was our son Arthur’s due date but he was born sleeping on 1stSeptember 2017. I don’t therefore know what you call today “a scheduled birthday that should have been”??? A Due Date Anniversary?
Confused situation
It feels odd being sad today because if all had gone to plan and he had been born today happy and healthy then we wouldn’t have our little girl Aurora as she was also born later on in 2018.
It is a confused situation entirely. Arthur doesn’t even legally exist as he was born sleeping at 22 weeks old so 2 weeks earlier than the legal requirement for human life however if he had drawn a breath at birth than he would have lived so then would have a birth and death certificate. He never drew breath so he has neither certificate.
Legally he never lived
Even though in the eyes of the law he didn’t exist to us he did. I felt him moving constantly inside me kicking over and over. We saw him somersaulting on scans and constantly moving even if no one else did. We knew him a little and met him whilst he was sleeping. He looked like a miniature version of my hubby with a thick head of dark brown hair. His name sits now underneath his big sisters name on their headstone at her grave. We interred his ashes with his sister Violet so she can look after her baby brother.
Their baby sister is continuing to light up our lives here living up to her name “Goddess of the Dawn” and certainly keeps us on our toes.
Rest in peace my little rocket man; keep kicking those legs making those rainbows up high.
November is here at last and I say that not because it is a favourite month but just because October is finally over. This year it was particularly tough.
October
I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all. The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.
A poorly rainbow
Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return. This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.
Our fear – this was Violet the morning she died.
Expert jugglers
We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.
Update
Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too. We will continue to juggle work commitments and childcare thanks to the support from family and friends. There’s no way we will risk losing this little girl too.
New parenting territory
It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day. It makes no logical sense why I feel relief at this but my stress has lifted slightly.
Is this normal with rainbow babies? Anyone else feel this way too? Or am I just odd? Please let me know.
So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.
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.
A beautiful cloudy Violet sunset over our house last night
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.
Poorly child
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.
Violet in hospital the day she later died suddenly
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.
Photo of our house during the renovation with Dexter our GSD in shot too
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
Sarah
Always Violet Skies xx
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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.
Violet
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.
The last photo ever taken of our gorgeous Violet the morning of the day she died in Manchester Children’s Hospital playing with a balloon.
Rainbow baby
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!
A sleeping Aurora – our rainbow baby
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.
The Why
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.
Violet in Manchester Children’s Hospital aged 15 months old.
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.
The Maybes
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!
The NHS
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?
Big love,
Sarah
Always Violet Skies x
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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. Then doing the same trip again with an 8-month-old baby Aurora this time taking in Singapore, Australia and Hong Kong too 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. Noise cancelling headphones are a great idea if your baby wakes easily (as modelled by Aurora in earlier photo!).
Violet sleeping on the way to New Zealand in 2016
Outfit change
It goes without saying that you will have spare outfits for baby. Make sure you have extra clothes for yourself in your hand luggage near your feet. 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.
Violet in her fleece & onesie watching the Snoopy film on the way home from Singapore
Hats
We’d recommend packing a cotton hat for your baby as airline air conditioning can be fierce. Surprisingly the vents seem to be above the bulk head seating so right near the bassinet.
Mini-change bag
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 & baby carrier
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!
Pack a small sling or baby carrier in your carry on luggage as they are handy for airport transfers. Disembarking down plane steps safely especially if they are slippy without having to worry about holding a wriggly baby is priceless. Also they are helpful if your airline fails to deliver your stroller to the gate as promised.
Lounge access
If you are flying long haul and transferring on your journey then it might be worth investing in the use of an airport lounge. 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.
Violet just chilling on the reception desk in Singapore
On-board dining
Some cabin crew will have the good sense to ask you if you’re travelling with another adult and 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. Then another set in our other carry on so we could swap them over for the second connecting flight so she wouldn’t get bored. The toys you can clip to a pram are best as you can attach them to the bassinet or airline seat belt so they don’t get lost under airline seats.
Violet sitting playing with toys in the bassinet while I eat breakfast!
Relax
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. Try your hardest to also make the journey as relaxing and as enjoyable for yourself. 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!
Sleeping like a baby what an ironic phrase considering most babies I know hardly sleep anyway I thought I’d write a little post about when you move your baby into their own room.
Moving baby into their own room
This is something most new parents worry about and then once they do it most say how much both they and their baby’s sleep improves. This was certainly the case with our first baby Violet. She actually started sleeping through occasionally once she was in her own bedroom away from daddy’s snoring.
A sleeping Aurora our sleeping beauty in name only – Violet Skies
Well now as a parent of loss I can tell you this is extremely difficult and no now she’s in her own room I don’t sleep better in fact my sleep is worse.
Monitors
Number one I’d like to say to those people marketing webcams and tablets as being “just as good as a baby monitor”. They are no good for a parent of loss. The fact they repeatedly pause to reset or reload is a nightmare for a mother who subconsciously listens to her baby breathing through the monitor while she sleeps. When it stops to reload my subconscious triggers me to wake with a jolt. My brain telling me my baby has stopped breathing. This happened 10 times during the first night she spent in her own room. Add into that the three times she actually woke up too then I think I got approximately an hours sleep.
This amazing first night triggered the purchase of a proper baby monitor through amazon via same day delivery so night number two was better. Just a shame baby then had a cold so awoke 6 or 7 times in the night and awoke to start her day at 5am.
Here’s hoping it gets easier as we’re very tired parents but you know I don’t like to complain. I know I’d rather zero sleep than zero baby as I’d give anything to have my first baby Violet back.
A sleeping Aurora who prefers to be cuddled as she sleeps – Violet Skies
Anxiety
My counsellor tells me it’s normal for a mother to be anxious and all mums have anxiety, to some extent. It’s just that most haven’t then experienced the worst scenario ever playing out in front of them. Most mums when someone tells them the odds of something happening to their child are really slim they can rationalise. They can’t then turn round to say well those odds have happened to me in the past. Unfortunately my experiences now compound my natural mummy anxiety especially at night.
How did you get on with moving your baby to their own room? When did you do it?
Love Sarah x
Always Violet Skies
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Now I’m no longer pregnant oh my word work and social events are a million times easier. Yes at a networking event, not looking pregnant, eventually someone will ask if you have kids but they won’t use the topic or babies as their opening line or icebreaker.
36 weeks pregnant with Violet in 2015
Networking events
When you’re at a networking event, obviously pregnant, people you’ve just met will use the fact you’re carrying a baby as their ice breaker and ask you about it, which if you hadn’t lost children in the past and were enjoying a relatively worry free pregnancy then that might be lovely. However when you’re on your third pregnancy having lost your first child and then lost a second at 22 weeks gestation it’s a topic you don’t really want to chat to a total stranger about.
I avoided events
Lots of work contacts now I’m out and about again after baby have asked recently why they didn’t see me at lots of networking events, launch events, industry gatherings, conferences etc while I was pregnant and this is the main reason why. Yes sometimes I was genuinely busy or grieving but other times I really couldn’t face the fact I knew that strangers would ask me about my pregnancy with a big beaming smile on their faces. Clearly wrongly assuming I’m pregnant and so want to chat babies.
Last night out at 37 weeks pregnant with Aurora
Difficult questions
Knowing I’d have to answer the following questions over and over to at least three different people at events filled me with dread:
“How far gone are you?” “Oh so not long now. What’s your due date?”
Then either – “Oh I think you’ll be earlier than that as you’re huge much bigger than you should be” thanks for that I actually have more fluid than normal but I didn’t want to really tell you a total stranger that personal information.
Or…
“Oh really but you’re so small. Have you had a sizing scan?” Yes I have actually I’m having scans every two weeks at the Tommy’s clinic but again I don’t really want to go into this with a complete stranger. “Oh what’s the Tommy’s clinic you say?”…
I’ve seriously had both of these opposing size comments at the same event!
Or they ask…
“Is it your first baby?” No my third.
“Oh you’ll be an expert then. Glutton for punishment bet you’ll have your hands full then. What other kids do you have?
Are they excited about their new sibling?” Ah no they aren’t alive unfortunately now that kills a networking event.
Or they say…
“Do you know what you’re having? Is that what you wanted? Are you excited about it?”
Or…
“Looking forward to the birth then?” “Baby will definitely take you by surprise by being really early.” Thanks for that I’m having a planned C Section so I hope not but again I don’t really want to go into that with a total stranger.
36 weeks pregnant with Aurora at my friends wedding
Advice
So folks next time you’re at a social event or networking for business and you see a pregnant lady perhaps instead you’d like to simply pay her a compliment and not think you can use her pregnancy as an icebreaker to ask personal questions or as an excuse to fondle her stomach unnecessarily. Yes strangers seem to think your stomach is suddenly fair game for a good old fondle!
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.
Sick baby
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 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!).
Poorly little girl but check out that fabulous curl!
Sleepless in Manchester
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.
Holding baby while she sleeps
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.
After a loooong 24 hours of hardly any sleep and at last she sleeps!
Rainbow baby’s are difficult
You might wonder why I’m even taking the time to tell you all this. 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. 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.
What are the chances?
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.
Living nightmare
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
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