It never used to be this way. I used to love September. It was always one of my favourite months.
The starting back at school with a new year of classes. I was such a geek I couldn’t wait. New pencil cases, stationary, new uniform and shiny new shoes always excited me.
Then there was the turning of the leaves and the beautiful autumnal colours. The amazing sunsets as the weather starts to cool. The wearing of cosy clothes – knee length boots, fleeces, jeans, jumpers & fluffy socks. Open fires, comfort food, hot toddies and bubble baths. Watching the rain from inside a warm house and listening to the wind whistle round the chimney.
In the last ten years I’ve enjoyed spending time in Cyprus where it’s like a second spring with all flowers having another annual bloom so colourful and cheerful.
However all of this changed in September 2016 when my precious daughter died and in the following September my son Arthur was born sleeping too.
All of a sudden the changing colours of the autumnal leaves began to represent death to me. The darker nights and chilly weather no longer cosy but depressing and miserable. The pouring rain represents the tears I now shed at this time of year and the wind howls in pain for my lost babies.
I can’t face visiting my cheerful uplifting place either in the Cypriot sunshine with colourful flowers and amazing views as last time I was there I was with my daughter, but maybe I will visit again in the next few years.
This year in order to attempt to focus on something else, something much more positive, I decided to organise the Violet ball in memory of my beautiful daughter on 29th September, a few days after the second anniversary of her death, to raise money for Alder Hey hospital’s cardiac surgery fund. I hope those of you who are able to join us do so and that we all see the month of sad September out with a bang.
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.
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.
I often hear parents with more than one child talk about the guilt they feel about spending more time with one over the other. About how guilty that makes them, as they try to give equal attention and time to each child. Well what happens when you have several children but they are no longer living?
Second child syndrome
I frequently feel guilt over my second born Arthur because he gets forgotten in favour of his big sister Violet, who is centre stage in everything & poor Arthur as the second child is pushed to one side almost ignored.
Our rainbow Arthur
We never knew Arthur.
Yes I felt him move inside of me. People, our family & friends never met him. He never babbled at people. He never laughed or cried. He never pointed at anything he wanted looking for someone to fetch it for him. He never sighed and rolled his eyes when I attempted to sing poorly. He never looked annoyed when someone sang nursery rhymes to him out of tune. He never orchestrated control of a room full of toddlers & adults so they danced to his tune, despite not saying a word. He never made his displeasure felt through tantruming. He never banged a drum or read a book. He never smiled. He never held a balloon or shrieked with excitement if he spotted a cat or dog. He never saw or rode on an airplane or a boat. He never danced along to music. He never opened his eyes to look around. He never even took a breath or made a sound.
Legally he doesn’t exist
Technically & legally he doesn’t exist, as he was born sleeping at 22 weeks, so he doesn’t have a birth or a death certificate. He did have his own crematorium service and his ashes were buried with his sister. He has his own name in flowers on their grave and in time his name will be written on their shared gravestone but bless him he doesn’t have a lot to remember that he was here.
Easier to talk about Violet
It’s much easier for us to remember and to talk about Violet as lots of people knew her. There are lots of shared memories we can all draw on. We have thousands of photos and some video footage of her. She even had her own circle of friends, who we always remember at Christmas and their birthdays, as that would be what she’d have wanted.
No shared memories or friends
Arthur bless him doesn’t have any shared memories or friends. He didn’t impact any people other than our immediate family but he is still special to us. We still fight to try to get answers for his condition, in the hope that research might help others out there too. In time we will probably fundraise for charity for him also so he has a legacy alongside his sister’s. We’ve chosen to focus on our first child for now, as there’s a clearer legacy path for her. In her memory we will focus on helping other babies to have life saving heart surgery either here in the UK at Alder Hey Hospital or overseas in third world countries through a great charity called Healing Little Hearts.
This blog is full of photos of Violet and that’s great because we have lots of her. She loved having her photo taken too. It is important for us to recognise that just because we can’t share lots of photos of Arthur or share amusing anecdotes about what he was like as a person it doesn’t mean he isn’t thought about or loved by us.
I like to think too that if they were both still alive today that Violet would definitely still be stealing the limelight away from her little brother, as much as humanely possible. She would certainly boss him around so maybe him playing second fiddle is just a symptom of him being second born, whether he is alive or not?
What do you think? Do you feel guilty about spending more time with one child over another? Does one of them hog the limelight over a shyer sibling?
Music really does stir the soul and it can also retrieve memories you forgot you had made.
The other day I was driving in the car and a Whitney Houston song came on the radio “I have nothing”. The lyrics are pretty emotional anyway if you listen to them.
“Don’t make me close one more door
I don’t want to hurt anymore
Stay in my arms if you dare
Or must I imagine you there
Don’t walk away from me
I have nothing, nothing, nothing
If I don’t have you, you, you, you, you”
When I heard it start I remembered how much my daughter Violet had liked listening to the great divas sing. Then I remembered that this was also the first Whitney song she ever heard and the entire memory of that came flooding back.
I remember that she was about six months old at the time and already had her own playlist on my i-tunes. A playlist that already contained Katherine Jenkin’s 50 romantic arias, all the Adele albums and a few Jennifer Hudson tunes too. She had very particular musical tastes and disliked nursery rhymes. I would play different tunes to her and from a young age she’d let me know if she liked them or not. If she did then they’d be added to her play list. She enjoyed listening to her chosen songs while she read, played or relaxed.
Anyway as she was chilling out with a book that day I suddenly thought ohhh what about a bit of Whitney, I bet she’d like Whitney Houston and the first song I played for her was “I have nothing”.
Whenever a new song came on for the first time Violet adopted a look of concentration and would stop whatever she was doing to listen, making her mind up as to whether to continue focussing or not quite quickly. Violet continued concentrating on the Whitney song and then when she heard her hit the first big note a wide beaming smile appeared on her face. She continued to listen in silence, simply smiling after she hit all the big notes and then at the end of the song Violet was so delighted she actually clapped!
I rapidly downloaded all of Whitney’s Greatest hits onto her playlist for her. She had one of the most particular musical tastes of a baby ever. I often wonder whether she would have had a musical future either as a musician or behind the scenes.
The retrieval of this memory reduced me to tears in the car and luckily I wasn’t far from home but I gave the hubby a fright when I pulled onto the driveway in floods of tears!
Are there songs that have brought back happy or painful memories for you? Feel free to share them
I used to be a self-confessed shopaholic before I had Violet I loved nothing more than a shopping spree round town getting a new dress, looking at the sales, maybe some new shoes, new toiletries etc. Now I hardly ever shop.
Instead losing my children has taught me to appreciate the experiences life has to offer, rather than simply buying stuff. So now we’d rather spend our money on dinner out or save for a holiday somewhere or spend time in the outdoors.
Family and friends
It has also made us more grateful for our friends and family who have been so supportive, throughout these last few years. Yes we have had good friends fall by the way side but many more that have stepped right up to the plate to hold our hands during our lowest ebbs. We are so appreciative of these people, as it makes us realise that as cruel and evil as the world sometimes seems there are good, kind people out there.
There have also been near strangers and distant friends who have been so kind and gone out of their way to help us in small ways that mean much more because of the thought that goes with it.
Some people have gone out of their way to remember our daughter by doing Iron Man contests, swimming Windermere, organising events and other challenges to raise money for her fund helping us to create that lasting legacy for Violet we so crave.
There have been lots of moments of kindness from people that have reduced us both to tears and we love you all so thank you!
Love, Sarah x
p.s. if anyone wants to donate to her fund click here and tickets for the Violet ball on 29th September 2018 can be reserved here
It may sound daft but sometimes when I get up in the morning and make a brew then sit down in my ever so quiet house to have breakfast, I like to imagine what the me in a parallel universe would be doing now.
A Parallel Universe
If parallel universes exist that is, and I was never a huge fan of science fiction, but it’s one thing that gives me a strange comfort. I like to think there’s a me out there that’s heavily sleep deprived, complaining to friends about her 2 year old daughter’s tantrums and how her newborn baby who doesn’t sleep keeps getting nappy rash!
The other me will be struggling to juggle the demands of motherhood with two children, work, a husband and trying to stay sane. Her life would be crazy, noisy and sleep deprived but it will also be full of love. However she doesn’t realise how truly lucky she is and stresses about how she’s concerned her children aren’t developing at a normal rate. Are they eating enough? Are they growing?
This other parallel universe me has never had to face losing a child so she’s still full of the naive blind optimism I see in other women and people everyday. The way I used to be. When bad things happened to other people not to you, and whilst you were concerned and saddened to hear of others bad luck, even raising money to support these people, never in a million years would you think it’d happen to you. It gives me comfort to think there’s still an innocent me like that out there somewhere.
Anyway then I return back to my reality of being able to eat a quiet breakfast with only the demands on my time from a dog wanting a walk and of course that of my clients at work. So begins another week for me…I hope you all have a good one!
I am a proud and heart-broken mother to two angels.
My first angel
My first born was a beautiful baby girl named Violet who beat all the odds after she had open heart surgery at just 4 days old at Alder Hey Hospital. She lived a full and happy life for 15 months until passing away suddenly at Manchester Children’s Hospital. We didn’t know what happened and the coroner launched an inquest (read about it here)
My second angel
My second angel was our rainbow baby Arthur who was born sleeping at 22 weeks, almost a year after Violet passed away. He was a TFMR and had severe brain abnormalities. He gave us so much hope for the future and when we lost him in September 2017 we felt as though our hope for the future died with him. (read more about it here)
The last few years
It has been an extremely devastating and challenging few years for both me and my husband. Despite all of this devastating news we still strive to make the most of our lives, as we understand how fragile life is and how much our daughter Violet loved life. She wouldn’t want us to mope and suffer. We’ve learnt to be grateful for the 15 wonderful months we spent with her, that we might not have had if it wasn’t for the top NHS heart surgeons and care at Alder Hey Hospital we had in the very beginning. To them and especially top heart surgeon Mr Prem we will be eternally grateful. (link to our fundraising here)
A friend of mine suggested (over a year ago) I try to help others by giving advice and strategies for coping with loss. So this blog has been a long time coming but I have waited until I felt strong enough to share. It will detail the ways in which I have tried to deal with everything in case it might help someone else who has unfortunately found themselves in a similar situation.
It won’t all be heavy or emotional reading though as lots of my coping strategies include travel, eating amazing food and architecture/interior photography. Hopefully it will make enjoyable reading for those out there that are lucky enough not to be in a situation like mine. It will be full of photos showcasing some of the amazing places we have travelled to and the things we do in memory of our beautiful children.
I hope this site can give others inspiration and hope to overcome anything they are currently battling with in their lives.