Violet’s third birthday

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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.

Violet at Alder Hey
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.

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.

Me & Violet at Alder Hey
The second time I held her just before her heart operation

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!

Me & Violet in Cyprus
Violet in Cyprus in April 2016

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.

Violet & daddy in Alder Hey
The bond between father & daughter was strong from day one

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.

Violet opening birthday presents
Here she’s opening first birthday presents & getting excited about bows!

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

Love

Sarah

Always Violet Skies xx

A Mother’s Guilt

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Guilty

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?

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Their shared graveside

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.

Arthur scan
A photo of Arthur

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.

Photos

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.

Violet in a pretty dress
Violet at 1 year old

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?

Love, Sarah x

The Small Things

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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.

Violet in a pretty dress
Violet wearing a new pretty dress in May 2016 & it always cheered her up

Experiences

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.

Violet clapping bubbles
From the last party Violet ever went to and she loved a good party!

Legacy

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

Tantrums and wishes

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Lots of mums and dads dread going out to the shops or to restaurants with their children in case they throw a tantrum or cry, creating a scene in front of others.  I know this as I used to be one of these women, although thankfully Violet was pretty easy going most of the time, preferring to people watch or read books.

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Tantrums

As a parent if your baby cries or throws a tantrum you look around to see other people staring over and you imagine them tutting thinking you’re a bad mother. Or that you are doing something wrong.  Often you don’t get to finish your lunch and you have to ask the wait staff to wrap it up to take it home with you, that you promise yourself you will eat just as soon as baby/toddler goes down for a nap. You’re so busy though you never do get round to eating it.

I remember cringing when my baby projectile vomited everywhere in a cafe.  I was mortified.  Now I’d take that any day of the week!

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Annoyed?

Now I know, if the other people looking over at you are anything like me today, then they will be looking over not in annoyance or pity but longingly. Wishing they were sat there with a child that was crying, throwing food all over the restaurant or indeed creating a scene screaming, rolling around on the floor.  I’d happily change places, rather than be sat there having a quiet peaceful lunch on my own or chatting with a friend.

Never imagine you know what someone else is thinking.  You have no idea what they think or indeed what they have been through so next time your baby makes a scene smile at those looking over and I bet like me they will smile back or even help to distract your little one, snapping them out of it.

Love Sarah x