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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I was quite shocked by a conversation I had with an elderly lady when out and about with my rainbow baby. Perhaps she didn’t like the name Aurora but what do you think?
This lady stopped me in a supermarket to coo and ahhh over her asking as most people do whether she was my only one or not. I said no she is my third baby but unfortunately her sister and brother died.
The lady said she was sorry to hear that and what was her sister called. When I said Violet she remarked about how pretty that name was. Then she said “so is that what this little one is called then Violet”. I said no she was called Aurora but she did have her sister’s name as a middle name thinking maybe the lady had gotten confused or misheard me perhaps.
She then said “what was Violet’s middle name”. I said Elizabeth and she said “oh that’s a shame as Violet Elizabeth is such a beautiful name I’d have used it again”. I was stunned. Why on earth would I name my second daughter exactly the same as my first as though she’s a replacement? I was dumbfounded. I didn’t know what to say and just smiled then walked off.
Where has this come from?
Then I decided to do some research into why she even had this belief and discovered during the Victorian era when child mortality was very high then giving a child the same name as a deceased older sibling was in fact quite common, especially if the child had been named after a parent. If you look through archives you’ll often see multiple children with the same Christian name in a family. I assume perhaps this elderly lady came from a family that had done just this so she felt it was a normal practise.
Some people are weird
I also think that some people are just weird. I remember someone telling me that as a child her family’s dog was called “Ben” and today her family’s dog is still called “Ben”. There have in fact been 6 Ben’s altogether. To me that is very strange but even more so to do that with a child.
What do you think? Would you give all your pets the same name? Would you use the same name again and again for a baby?
Always Violet Skies x
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After our extension last year we are now we’re looking at the next stage of renovation of our home. Looking at decorating the original rooms in the house and thinking of ideas to transform our garden.
Some of my photos
18 months ago we visited Morocco and I took copious photos of the amazing Moroccan architecture.
I have been scrolling through them for ideas and they are so stunning I just had to share.
Bahia Palace – Marrakech
These photos are from the Bahia Palace in Marrakech so stunning and such amazing outdoor spaces, the perfect way to fuse inside and outside together.
What do you think of these? Stunning hey?
Lots of the cafes and restaurants also had very beautiful interiors such as Limoni restaurant in Marrakech that had the prettiest little outdoor courtyard with lemon trees and mosaics. See below so pretty isn’t it?
Yves Saint Laurent garden
Then we visited the amazing Yves Saint Laurent museum and the stunning garden attached with vibrant Moroccan blue as the stand out colour. Here are some photos
I adore these mosaics but feel they won’t really work in suburban Chorlton. The blue can be transferred though. Is it too bright for the side of our shed do you think?
There are a few little Moroccan touches I’ve found that you can add into a garden from the high street. Here are my best picks…
There are lots of sale bargains out there at the moment and I bet more still to come so have a look out over the next few weeks.
A fellow blogger recently launched her own hashtag challenge #julyyourway and the first day was entitled “your authentic self”. I realised I no longer knew exactly who I was anymore and decided I needed to write this post in case some of you loss mums or parents are the same.
Who am I?
I don’t actually recognise myself anymore. I can tell you all about the old me in great detail as I spent 39 years with her.
The old me
The old me was strong, determined, unwavering and a great calculated risk taker. Her instincts about people and situations were nearly always right. The type of person you could drop into a room of total strangers and she’d be fine chatting to them making friends pretty quickly. If someone told her she couldn’t do something she’d make it her mission to prove them wrong. One of life’s dreamers believing in positive thinking and that with the right mindset you can achieve anything. Always working towards a vision of the future and undertaking the next challenge. Underneath the confidence she genuinely cared about all those she met, worked with and spent time with. It took me a long time to get to know, appreciate and love the old me.
Where did she go?
What happened you might ask that would fundamentally change your personality permanently well like most new mums four years ago I lost myself a little after the birth of Violet. All new mums will relate to the fact that usually you immediately become more risk adverse as your instincts to protect kick in and your self-confidence takes a knock too as your body shape changes. However most mums will tell you that maybe a year or two later they rediscover themselves again building up that old confidence. Their core self is fundamentally unchanged.
That happened to me too. I was starting to rediscover the old me again in September 2016 then the unthinkable happened.
When you lose a child they say your world changes, life is completely altered and things will never be the same again.
The air is completely knocked out of you but what you don’t realise is with the air goes your personality, as you knew it. All your hopes and dreams, your confidence, trust in yourself and others, All the things you’ve literally spent a lifetime developing, building & honing are wiped away in a moment. All the negative things cling on such as self-doubt, negativity, criticism, depression but the good things…
The old me was confident, fun and had a wicked sense of humour. She was lovely to her core because she genuinely believed there was more love in the world than bad. She truly believed in positivity and only saw the good in people. She believed in what her gut or core instinct told her about people and situations. She actually believed that eventually life will come good and that good things happen to good people. Work hard try your best and believe in others then good things will happen. She always looked for the silver lining in every black cloud. It never failed her until the day her daughter died.
Try a reboot
At first you think these stronger qualities are still there just diminished like they were post-child birth. Just like when you’ve had set backs or heartbreak in the past? Like a hard drive that just needs a reboot. You try to do that to reboot yourself by trying similar things you’ve done in the past to recover like rest, holidays and seeing loved ones. Over and over you try in vain to recover. Eventually you discover that these qualities aren’t dormant any more. They aren’t still there to be rebooted they’ve been completely wiped out. It’s like you’ve had a computer virus in your brain that’s wiped out the useful things leaving only that photo of you from a beach holiday 10 years ago that you didn’t even like and the only email messages that have been retained are spam ones about PPI.
You have a vague memory of the old you but it’s hard to imagine now you were ever that person. I can only explain it by saying that it’s as though I’m viewing an old movie about someone else. I miss her. I’d spent years trying to learn to love myself, to be confident in my own skin. This confident me enabled me to be very good at what I did career wise, especially as I was able to juggle twice as much work as anyone else and easily did 16 hour days regularly. I was a caring considerate person who loved life and loved having fun. I really did work hard play hard and excelled at it.
Now that person is gone. Yes physically I look the same. I still have the same cognitive abilities (sleep deprivation affected maybe but I can still ace an IQ test or two). I even the same memories but I feel as though I’m looking in at someone else. I miss the old me but after over 2 years of trying to get her back I’ve realised that she’s “left the building” never to return. I’ve accepted that I need to build up these qualities in myself from the beginning again, to build the new me.
Still a central core
I’d forgotten how I used to be really strong. There’s a central core of that original strength left that’s hardened up, so much that it takes a lot for me to cry now but every so often a bit of it crumbles. This core is still surrounded by kindness and compassion just not the huge volume I used to have. This has been coloured by grief and the realisation that really bad things can happen to good people. Karma doesn’t exist and positive thinking will only get you so far.
The new me comes with a great deal of darkness the old me didn’t have. This has shaped my sense of humour so it is very dark now. I don’t trust my own gut instincts anymore, as these have been proven wrong twice with the very worst results. I also no longer trust others especially those in the medical profession where I now take what they tell me with a pinch of salt.
Luckily over the last 2 years that I have been hitting reboot I have seen some of my wacky creativity come back and my ability to speak to total strangers on some days now is almost as good as it was. Although I find it extremely hard to tolerate fools and I seem to have become even less diplomatic than before so I can be quite honest and frank now. This is of course a work in progress. Some things like confidence and speaking to strangers just takes practise and stepping out of your comfort zone. That’s at least one good outcome in that I don’t really have a comfort zone rather a numb achy uncomfortable zone.
Version 2.0: Post child loss
Unfortunately unlike computer software I don’t think “version 2.0: after child loss” will be an upgrade on the one before. Hopefully I’ll eventually be able to patch over some of the holes and maybe even rebuild a few of the qualities the old me had that were great. It will take time though as it took 38 years of hard work to develop the old me.
Feel free to check in with me again at age 79 and we can see if the old me has returned just a wrinklier version.
On the positive side it has changed my outlook on life instead of planning for and looking to the future I try to live in the present. To enjoy the here and now making the most of every moment as I understand just how short life is.
Do you ever feel you have changed? Is it for the better or worse?
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!).
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.
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.
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.
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.
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.
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!
A few days ago I visited Prague with my 11 month old rainbow baby. Ordinarily I wouldn’t go away in the heat of the summer as we prefer to holiday in autumn, winter or spring but hubby was on a conference for work so rather than staying home alone with baby for a week I opted to go over too.
Unfortunately we chose the hottest summer days on record for the Czech Republic for our visit which was stifling especially when lots of places there didn’t have air conditioning. Keeping baby cool was a challenge so I thought I’d share my top tips in case they’re useful for the rest of you.
Ice cubes for play time
If you’re out and about it can be hard to both entertain and keep an active baby cool. My top tip for this is to order a glass of ice cubes whenever you stop for a drink or food then baby can play and suck the ice. Having fun and cooling down at the same time.
Chew toys in fridge
If your baby like mine is teething then keep their teething toys in the fridge over night then they will be nice and cold for chewing in the daytime. A cool bag is a good investment for when you’re travelling as you can not only use it to store food and drink but also teething toys and cloths (see my next tip!).
Cold damp muslin cloths
If you’re heading out into hot weather I find chilling damp muslin cloths to take out with you can help to keep baby cool in their buggy. I even wrapped some ice cubes in the cloths and popped two either side of baby in her push chair when I had to venture out in 37 degree heat.
Large muslin cloths are a great investment to take out underneath the pram as when I needed to cool baby down rinsing one under cool water then placing over baby’s legs can help to cool them quickly.
Pram with sun shield factor 50+
It’s worth when you invest in a pram or buggy for travel that you get one that has sun protection built into the sun shade. Ours has factor 50 in the canopy of it which comes in really handy when we travel abroad as we then know even it we can’t find shade baby can sit in the buggy and will be protected from the sun.
Sun shade for snoozing
Another top investment tip is to buy a Snooze shade cover that is SPF 50 that will stretch over a buggy, pram or car set to protect baby safely while they sleep. The one we have folds down into a small pouch you can pop under the pram or into a change bag easily for travel.
Lots of people mistakenly cover their prams with muslin cloths or blankets to shade their babies but inadvertently increase the temperature raising it to dangerous levels that could cause death. Please for the sake of £20 invest in a proper shade cover.
Home made fruit juice lollies
If you’re at home in the heat then you can make fruit and vegetable lollies easily for baby. You can even use ice cube trays for this. If your baby is refusing food because of the heat then this is a great way to encourage them to eat something.
Keep wet wipes in the fridge
This is an easy top tip that when I thought of it I couldn’t believe I hadn’t down it before. A cold wet wipe can be the perfect way to easily cool your baby down after time in the heat again you can keep these in a cool bag when you go out too.
Pop up play tents
A pop up sun tent with SPF50 is a great investment for play time on the beach or even in your garden at home. They fold flat so can easily be popped into a suit case.
Paddling pool DIY
If you’re travelling and baby is hot sometimes you dream of having their paddling pool from home. Recreate this easily in the sink of where you’re staying or even buy a cheap bucket or washing up bowl from a local store you can use as a little paddling pool to cool them down.
Ice cubes in front of a fan
At night without air conditioning it can be hard to keep baby cool. If you have a fan pointed towards them anyway then place a bowl or ice cubes in front of it so the air is chilled before it reaches baby. Or even place the bowl below the open window the breeze is come from. Home made air conditioning!
It goes without saying that sun protection is always a must for baby as are sun hats and protective clothing where best.
So four years have passed since I first became a mother since then there have been many ups and downs.
The ups have included meeting and getting to know two baby daughters. We travelled round the world with both our daughters having lots of adventures.
Our first Violet survived for 15 months and the second Aurora who is thriving, approaching her first birthday. Then in between there was Arthur who we never got to meet properly but held him in our arms when he was born sleeping at 22 weeks.
The downs have unfortunately seen us nurse a poorly baby, wave her off for open heart surgery, sit beside her on two separate occasions in hospital and then unfortunately watch her die. Then we had the trauma of a funeral and subsequent coroner’s inquest to try to find out why nearly two years later. We also had to make the difficult decision of TFMR seeing us say goodbye to our much wanted baby boy Arthur (read more about it here).
Even though the past 4 years have seen the most traumatic times of my life they have also been some of my happiest so if I had the choice to change things and not become a mother I would refuse. I’d take the pain in exchange for the joy everyday.
Last few weeks
The last few weeks have been quite tough emotionally, so please forgive my break in posting on here. I did question whether to continue sharing with you all or not and then I got this message through this website
“I hope that this finds you well and that you don’t mind me writing to you. I am so very sorry to hear about the losses of Violet and Arthur, I cannot even imagine what you have gone through and still continue to go through. I just wanted you to know that reading your work has given me comfort and made me feel a great deal less alone during my own sleepless nights during the last two months, and to say thank you to you for this. I had a tfmr in early April and my husband and I lost our desperately wanted and adored little boy at almost 22 weeks gestation (the first child for both of us).”
This wonderful message reminded me why I started this and how important it is. If I can help at least one person to feel less alone then it’s a success I think.
A wonderful friend from my past also got in touch making a large donation to Violet’s fund out of the blue meaning we have now smashed the set target to buy a cardio echo machine at £37k and what she said to me meant a great deal too.
“Your story has touched me for so long and when I seen the message on the alder hey group last night I wanted to help. With violets birthday coming up soon you will be able to give them that much needed equipment in her name. Stay strong Sarah you have inspired so many women including me xxx”
So to her and all those people who have held events or done amazing things in memory of my beautiful, should be 4 years old, daughter a massive thank you. You are all fantastic and this keeps me standing.
Always Violet Skies x
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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.
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.
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.
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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The other day I realised that I have spent the last five May’s with one of my baby’s. I have either been pregnant (for 3 of them including my 40th birthday) and the second one I was organising my first baby girl’s first birthday party. This was the first May bank holiday for 3 years that I have been able to have a glass of vino and weirdly enough I am thinking about a second daughter’s first birthday party (this time in July rather than June).
Last year in 2018 we were living in the middle of a building site, I was heavily pregnant and we were going through a very hot summer. I spent most of it in the shade with an electric fan and my feet in cold water.
The year before that, 2017, I was in the very early stages of pregnancy with Arthur and suffered tummy upsets for a fair few months. It was also my 40th birthday so my hubby threw me a bbq party where we disguised appletiser as Prosecco, as we hadn’t announced our news to anyone. Despite my tummy upsets, we had hope for the future and it ended up being the only May I would spend with my little boy. Our slither of hope was smashed when September rolled around and we had to say goodbye to Arthur (read about it here).
May 2016 was one of my happiest times as Violet was doing well and was nearly a year old. She was about to be a flower girl at my cousins wedding and she’d gotten a princess dress that she loved. We were planning her birthday party that was a joint belated wedding reception too. We made so many very happy memories that summer before the horrendous September came along. I was lucky enough to spend two May’s with Violet.
May 2015 I remember being heavily pregnant with Violet having so much hope for the future. Despite getting negative news about Violet’s heart we were convinced we were in the right specialist hands and thinking positively we told ourselves everything would be ok. Violet survived in 2015, and that was the main thing, all thanks to Alder hey children’s hospital. I remember it rained a lot in May but then we had hot weather as soon as I went into hospital in the June typical!
Not about Theresa May
Anyway I just wanted to write an article that wasn’t about the other May and one that highlights how vastly different one year can be from another. I would like for those of you struggling to get pregnant or to get a rainbow or just to cope with grief to recognise how different one year can be from the last. I hope it gives some strength and encourages people to remember happier times too. Keep your face always toward the sunshine and the shadows will fall behind you.
At this time of the year my sleep (when I get any as my rainbow isn’t sleeping well and yes I get the irony given her name Aurora!) is peppered with a variety of different dreams all following the same subject.
It is always planning and arranging a birthday party. This year it’s one for a 4 year old as Violet would have turned four this June.
So far I’ve dreamt about lots of party themes including flower fairy tea party, puppy and kitten party, sleepover pamper party, Disney strictly dancing party, trolls theme, unicorn sparkles…
The dreams are all enjoyable in the main as I usually wake when the party is all set up ready before any guests arrive but I become upset when I actually wake realising that Violet isn’t here and I dreamt the whole thing.
Occasionally the dreams turn into a nightmare like last night when her little friends all started arriving with presents and balloons excited for the party to come. They were all asking where Violet the birthday girl was and we searched and searched shouting but she was nowhere to be seen. All her friends broke down crying and screaming then I woke up.
When I finally fell back to sleep again I started to organise a pool party in a hired swimming pool and so my dream party cycle began again.
Party girl to the core
I am a party girl at heart after all. I guess it’s a way my PR brain tries to be proactive in processing things and it could be worse I could keep writing the same press release over and over!
If anyone needs a kids party planning and arranging then just let me know, especially if it’s for a four year old as I can literally do one for you in my sleep! Violet would have had the best parties and I can assure you so will her sister.
Last year planning the Violet ball helped to halt these dreams, so I may have to start up plans for the Violet ball 2020, anyone fancy coming?
Always Violet Skies
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