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 discovered last year that, whilst Mothering Sunday as a concept in the UK came from an 16th century English religious tradition (read my original post here), the more widely known Mother’s Day was founded in America in 1907 by a lady called Anna Jarvis. Anna wanted to do something to honour her mother who had lost 7 babies. This original version of Mother’s Day, that rapidly became the commercial juggernaut it is today, was in fact created to remember and honour a grieving mother.
The original story
Anna wanted to create a day where people could honour and reach out to grieving mothers to actually recognise their pain and suffering in a day of remembrance. Rather than society continuing to ignore and pretend that babies don’t die. That grieving mothers don’t exist, they would be one day a year when people are kind to them. She wanted to change things for those grieving mothers everywhere to help them to feel less alone and less isolated.
It took only a few years before this day, that was associated with deep emotions and grieving mothers, was hijacked by commercial organisations. In the US they saw it as an opportunity to sell gifts and greetings cards to all mothers. It was then that the commercial money making Mother’s Day as we currently know it was born.
Now a day of torture…
Now it is with deep irony that those women who are suffering the grief of losing a child or perhaps not being able to conceive one are no longer recognised by this day. Instead they often feel even more isolated and upset by the commercialisation and celebration of motherhood. A motherhood they are grieving the loss of and maybe struggling to come to terms with not having.
I’m a mum of three
Someone said to me the first Mother’s Day after Violet died that I wasn’t to let the day upset me. She was sure I would no doubt become a mum again in the future. I was devastated and not strong enough to reply that I will always be a mother. It’s just my child is no longer here with us. I still think like a mother, feel like a mother and to a certain extent act like a mother because deep down I am one!
This year I have my rainbow baby Aurora so some strangers may say “oh you’re a mum again congratulations” but actually I became a mum in 2015 and even though you can’t see all of them. I am in fact a mum of three.
Message for everyone
Anyway to all those grieving mums out there please remember this day was created exactly for women like us. Those who have to deal with the pain of losing or not having their babies with them every day, so don’t let other people make that pain worse. Or commercial organisations make you feel bad, as they’re just doing it to make money.
To all the mother’s out there who have living babies please remember why this day was created. That it is for grieving mothers, who are exactly like you, but who through no fault of their own unfortunately lost their children. Please do us grieving mothers or “wish we were mothers” all a favour, celebrate Mother’s Day and your wonderful children. Hug them close, love them and appreciate all the little moments. Remember that some of us aren’t as lucky. You are blessed not because of the gifts of flowers, chocolates and handmade cards but because of the little people you have in your lives. That others would happily give anything to have.
If you have a friend or family member who’s suffered child loss maybe use this weekend as a reason to go out of your way to reach out to them. Send them a message, drop off some flowers or invite them for a coffee just be nice people. Remember this weekend is really for them. I’m sure Anna will be smiling down if she sees people embracing the day as she intended. Spread the love.
Big love & hugs, Sarah
Always Violet Skies x
Have you read some of my other posts –
For those of us with angel babies this time of the year leading up to and including Mother’s Day is a really tough time as we’re reminded constantly about who and what is missing from our lives. I know it’s tough also for those friends of mine who’ve wanted children but for whatever reason it hasn’t happened for them.
This year is a little different for me as I now have my gorgeous rainbow baby Aurora but it’s still bittersweet. I should be waking up to a hand made card from a nearly 4 year old and perhaps she’d bring me breakfast in bed or a cup cake she’d decorated. I imagine she’d have dark blond curls by now and be constantly humming under her breath, as she loved music.
So please I implore you to be mindful of others during this next week. There are those of us who are missing a beloved mother and those of us who are a grieving mother so please be kind and gentle to each other.
Always Violet Skies
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The Challenge of a Rainbow pregnancy
I’m now heavily pregnant so that means that strangers and anyone I meet can tell instantly that I am with child, which is fine I’m happy to talk about it.
Is it your first?
The difficulty comes when they ask if it is my first pregnancy and I have a policy of always telling the truth so when I say it is my third. I get comments like “wow you’ve got your hands full then”, “you must really know what you’re doing”, “you’re a glutton for punishment” and “are your other two excited about their little brother or sister”.
Try to move conversation on
Often I let them make a comment and then I move the conversation on without having to tell them that neither of this baby’s siblings are alive. Occasionally the person I’m talking to will bring the conversation back around again by asking what my existing two children are? Are they boys or girls? Then I have to explain that they were one of each but unfortunately they are no longer with us. I’m sure they would have been excited to have a little brother or sister.
What happened to your first two?
They then usually ask me what happened to my first two children and I tell them honestly or they nervously say “I’m so sorry” to which I answer “it’s ok” when clearly it isn’t then the conversation moves on.
Third time lucky?
People often tell me “oh hopefully this one will be third time lucky then” and I know this comes from a very good place filled with love. I know we were very unlucky to have had the situation with Arthur but I don’t feel we were unlucky to have had Violet. I know we were extremely fortunate to have known such a special little person if only for 15 months. We were very unlucky to have lost her but would happily repeat the time over again and again in the style of Groundhog day if we could – well maybe not the very last 6 hours or 10 days in hospital!
It makes being pregnant bittersweet and we are simply hoping this time to have a stress free birth experience too, as with Violet bless her we certainly had a lot of drama.
Always Violet Skies x
Last week was a hard week for us as it was our daughter’s third birthday. Along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.
First 10 days in hospitals
This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital. In Liverpool she had open-heart surgery at just 4 days old.
We had to sign a million legal forms and contracts saying we knew the odds were stacked against her. That we knew she might not survive and return alive from the operating theatre. And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”. We also knew her chance of survival without the operation was nil. She was only alive because of the additional hormones and support she was being given.
Off for heart surgery at 4 days old
I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit. We didn’t want her to be alone without at least one of us. I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could I was discharged to head over to Liverpool.
We told her about exciting plans
The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital. We chatted about all the different people she would meet, describing friends and family members to her in detail. We spoke about all the places we would take her to including New Zealand to see her Uncle Tom. Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon. We chatted about her Grandma and Nanna. Said she would learn to swim.
We basically described to her then the life she ended up having crammed into a 15-month period. I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!
The journey to operating theatre
When they took her down to the operating theatre I couldn’t watch. I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing. Her brave daddy on the other hand walked her down to the operating theatre. Talking calming to her the whole time reassuring her. Reminding her how much she was loved. How strong she was and that she could do this.
Then we waited for an eternity
Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call. We finally received it saying she was out and still alive! We were so relieved but our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her. We thought oh no this is where we get told something bad has happened. We were told the opposite that the surgeon thought it was an 100% success. He felt she wouldn’t need any other operations on that part of her heart again ever.
You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix. This is the reason we are fundraising in her name for Alder Hey. So superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.
Now it feels like a story
Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.
Thoughts of ordinary things
The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it. Buying her gifts, cards and organizing a birthday party for her. Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.
Party and gift planning
This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old.
Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets. Then on her birthday we distributed them all around the area where we live. Including taking some to her nursery. Leaving some on the benches near the playgrounds in the local parks where she loved the swings. We left some near the mural on Beech Road that has a violet coloured balloon in her memory. Some near to where she attended Babel Baby classes. We placed some on benches in the cemetery close to her grave, after we took her birthday balloons.
The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.
Thanks for reading
Always Violet Skies xx
I’m not a stranger to travelling alone having worked as a PR for travel clients I have travelled all over the world on my own so when a friend who was working in Switzerland invited me over for the weekend I jumped at the chance.
Basil and Zurich
I got a cheap flight to Basil from Manchester and then got the train to meet my friend in Zurich. I’d been to Zurich before as I used to have a Swiss client but I had only actually experienced it in torrential rain looking grey and miserable. It was great to see the place flooded in bright sunshine and we walked around the beautiful old town and by the river. It was stunning.
Villa Honegg hotel spa
Early the following morning we got the first of many train journeys to visit one of the world’s best spas inside Villa Honegg Hotel in Ennetburgen.
It truly was one of the most breathtaking spas I have been to with a giant outdoor hot pool that looked out over the Swiss Alps and Lake Lucerne. It helped that we had glorious sunshine and a cool breeze that came down from the snow capped mountains. The spa is sat on the side of a hill that was surrounded by farmland lower down and flower filled meadows in front of it. Inside the spa there was an indoor spa pool and sauna facilities too.
The hotel had a restaurant that overlooked the spa with an outside terraced area so we ate lunch there with again stunning mountain views before we departed for the train station once again to continue our journey this time several hours travel to Interlaken.
Airbnb in Interlaken
Interlaken can be described as the tourist centre of Switzerland with coach loads of Chinese, Korean and American tourists arriving into the town in order to explore the nearby sights. We even noticed they have a Hooters bar to satisfy our friends from across the pond. The town offered a vast choice of accommodation including high end hotels and back packing hostels. We decided to book an AirBNB apartment as we were only staying for one night – would be arriving late and leaving early the next morning. The split level studio apartment was to a contemporary loft design, owned by the artists running the nearby modern art gallery, and was practical and functional with what we needed for a one night stay.
The following morning we headed again by train to climb Jung Frau the highest mountain in Europe. We stopped off in Grindelwald a very stunning Alpine town half way to Jung Frau that sounded like it belonged in a Harry Potter book. It is used as a base for hikers and skiing enthusiasts. It was breathtaking surrounded by snow-capped mountains. I could happily come back here to stay for a few days and enjoy the mountain air. Apparently this was the place Heidi was filmed.
We only stayed in Grindelwald for a quick coffee and then continued our journey up Jung Frau by train on the highest train line and ultimately train station in Europe. The sun was still shining so when we hit the snowy surrounds I was relieved to have my sunglasses. This was the most scenic train journey I have ever been on, absolutely stunning views from every direction and we climbed so high our ears reacted as they do on a plane. Once we reached Jungfrau station we then had to continue on foot to the Sphinx observatory, the highest point in Europe and it was truly spectacular. My friend even stripped off her layers as the suns reflection on the deep snow was so warming. Some of you James Bond fans may recognize the setting here as it was featured in Her Majesty’s Secret Service.
On our way back down the mountain we stopped off in Lauterbrunnen another pretty village this time it is one with stunning waterfalls where we enjoyed some dinner and chatted to some Australian tourists (yes they get everywhere!) before heading back on the train to Zurich via Lucerne.
Cham on Lake Zug
The following day I enjoyed a leisurely lunch in Villa Villette in Cham on the banks of Lake Zug before catching the train back to the airport for my flight home.
Switzerland Travel tips
Flights – I flew to Basil from Manchester with Easyjet however the trains are so efficient in Switzerland that it could be cheaper to research travel into various different airports.
Train – I recommend you purchase a Swiss rail pass if you plan to travel around as we did as this as it is the most cost effective way to travel.
Luggage – there are inexpensive luggage lockers in most train stations in Switzerland so you can leave items as you travel to collect as you pass through the main hub stations to collect on way back.
Accommodation – there’s a wide choice of accommodation in Switzerland but if like us you simply need a bed for the night then take a look at sites such as AirBNB that can be more cost effective saving more money to spend on 5 class spas!
Always Violet Skies x
Anniversaries after loss are always really hard for all those family & friends who were close to the loved one.
Talking from experience it really does help when others remember our cherished one on this day and when they commemorate their memory in some way, it reassures us that their legacy will live on.
Our worst fear is that our much loved child, brother, sister, mum, dad, family member or friend is forgotten so today take the time, observe the silence at 2.30pm today, light a candle, say a prayer or just give a thought to all those who lost their lives in the Manchester bomb last year and know by doing that you are fulfilling the wish of their families and friends in that they are not forgotten.
We will not forget them. Bee strong everyone. 💜🐝
Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.
Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.
Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.
Questions for barristers
My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.
Stress and worry
The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.
I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.
Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.
Always Violet Skies x