Someone asked me recently what my plans were for the next 5 years. I laughed and said ideally I still want to be alive and I hope my family are all still alive too. Then I’d like us all to be healthy and happy. That’s about it.
A 5 year plan?
Not sure that was the answer he was after as he said I meant professionally and for your business. Well it’s not much use wanting anything work wise if I’m not here is it was my answer?
Maybe they shouldn’t ask parents of loss who have a heart defect that will hopefully be repaired before Christmas that question?
I used to be a planner
I used to be into forward planning years ahead at least as far as work, holidays and home went but these last few years have taught me that there’s no point putting too much effort into future plans when something could happen unexpected at any time that can change your world in a heartbeat.
Now I try to live in the present
It much better to live in the present as much as you can and also to try not to dwell too much in the past either as there’s nothing that can be done with that now.
Don’t get me wrong I still plan a little because I have to with work or family plans but i only tend to plan a few months ahead at a time.
How about you? Are you a planner?
Always Violet Skies
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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.
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.
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.
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.
Never mind Halloween please light candles on 1stNovember to mark the first All Saints day today “Día de los Inocentes,” a Mexican catholic tradition that honours deceased children and infants. They are remembered on this day when the veil between worlds is thought to be the finest.
All Hallows Day
In Mexico, All Saint’s Day also known as the Feast of All Saints, All Hallows’ Day or Hallowmas is celebrated with the first day of the Day of the Dead (Dia de los Muertos) known as “Día de los Inocentes,” honoring deceased children and infants. The 2nd November marks a second day for all deceased. Some religions and cultures call November 2nd All Souls’ Day and this is the day that is often chosen for the Day of the Dead parades and celebrations.
Catholics traditionally take flowers to the graves of loved ones and Saints who are innocents on these days. Perhaps you’d like to light a candle at home instead to remember those babies or children who have died on the 1stNovember and then again for any adults on 2ndNovember too.
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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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I was honoured to be invited along to the first performance of new musical “& Juliet” and in return I wanted to write a small review about it.
A varied audience
I went to see the show with some friends whose ages ranged from 10 to 50 so it was interesting to get a perspective on the production from each of them.
The general consensus was that it was a riot of lights, colour and music. It is a show that is a great deal of fun with excellent comedic timing and some clever writing.
Romeo & Juliet
The show’s pre text is that what would have happened if Juliet from Shakespeare’s famous Romeo & Juliet didn’t die alongside Romeo but went onto survive. Cue some amazing songs about girl power written by the musical legend Max Martin who is only second to Lennon and McCartney in terms of top ten songs in the US.
Songs include Britney classics such as “Hit me Baby One More Time” and the Back Street Boys “I want it that way” plus lots of other classics from the naughties by Pink, Katy Perry and Bon Jovi.
Highlights of the show were David Badella who placed Lance and Melanie La Barrie who played Nurse. Their chemistry and comedic timing was brilliant resulting in the entire audience in stitches of laughter especially with their performance of “Teenage Dream”.
Cassidy Janson who played Ann Hathaway was also amazing with a fabulous voice and great stage presence.
The solo performance by Arun Blair Mangat of “I’m not a girl. Not yet a woman” was I thought the best vocal performance of the show.
The volume of the music was unfortunately occasionally too loud and overshadowed the amazing vocals, which was a shame but hopefully that technical detail will have been adjusted for future performances now.
At a time when theatre visits by 11-15 year olds are at an all time low shows such as this one should renew interest in the arts. Hopefully this musical will make Romeo & Juliet accessible to a new audience too. A new audience that might not have seen Shakespeare before and might after this show consider taking another look.
A show for 2019
It was also a great show for 2019 showcasing exclusivity, equal rights and gender fluidity too. It caused some members of the audience to seem a little uncomfortable with some parts but hopefully that means it will help to encourage new mind-sets and to provide a catalyst for important discussions too.
In a year that has seen the Spice Girls reform and enjoy renewed mass hysteria from an audience that were barely out of nappies the first time around. I think the timing for this rip roaring musical couldn’t be better.
There was something in it to appeal to each of my party’s varied ages so a definite must see from us whether you are 10 years old or 50 you will enjoy a thoroughly entertaining night out.
The show is running at Manchester Opera House until 12thOctober so get tickets while you still can here
From the age we first start school we are conditioned into the fact that September means new beginnings so much so that as adults, even when we have no school age children and are no longer in education ourselves, September can often still seem exciting as we prepare for autumn with new clothes, new stationary and a renewed focus for the future. This has always been the case for me. I loved school even more so a new notebook, accessories and clothes that came with it!
A New Beginning no one wants
September equalled new beginnings. I could always look at this month in a positive way until 3 years ago when that new beginning first came to equal a negative “new beginning” no one wants to ever face. That new beginning was the loss of my daughter and the new beginning that year was trying to carry on with some semblance of life without her in it. No one ever wants that kind of new beginning and this has become my biggest on going challenge to date. It’s tough really tough and never ending. Yes it was nearly 3 years ago but it feels like yesterday one minute and like a scene from a movie about someone else’s life in the next.
Another horrendous September
Then the following September after our annus horribilis we faced another “new beginning” to add to the stress of the one the previous year. This was the loss of a much-wanted son that came out of the blue with shocking news for me accompanying it and so we had to arrange a second child’s funeral in our second stressful September “new beginning”.
Bringing control back
So last September I organised the Violet Ball to take back control of my Septembers and that year’s “new beginning” was a black tie charity event for 200 people to raise funds for Alder Hey children’s hospital. Which as an experienced PR is the kind of event I have organised before but this time with a 6-week-old new born baby in tow event organisation wise that was a first for me!
An exciting New Beginning
This September we decided not to do a charity ball as we agreed we needed a summer to relax and decompress rather than run around finalising an event. I was dreading finding out what this year’s “new beginning” for September would be. But you know what this year’s is actually a positive (hopefully) and challenging one as I got asked to become a part time Associate Lecturer at MMU Business school teaching marketing. New starts and exciting new beginnings that are positive is exactly what I needed and I might treat myself to a new notebook.
Hope your September’s have been successful and less stressful ones too.
Always Violet Skies xxx
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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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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.