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.
A beautiful cloudy Violet sunset over our house last night
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.
Poorly child
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.
Violet in hospital the day she later died suddenly
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.
Photo of our house during the renovation with Dexter our GSD in shot too
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
Sarah
Always Violet Skies xx
You might be interested in reading these other posts –
Like most people I love bumping into people I haven’t seen for a while. Someone I used to speak to or deal with all the time perhaps through work or a project and who has simply drifted away. Now in these modern times, thanks to social media, quite a lot of these people are still kept up to date on the happenings in my life. They are aware of the sadness of recent times, however there are occasionally still a few that slip through the net.
Catch up
I met up with someone recently who I hadn’t seen for 5 years and initially I was so pleased to have ran into them, eagerly accepting the offer of a coffee in a nearby café. Then as I waited for them to get served with our brews my heart sank, as I realized the conversation I was about to have with them. I could forecast the surprised look then sadness before there would be pity and sorrow for my loss. Yes they would be sympathetic and the usual comments of “I’m so sorry” and “how have you coped” would be expressed. They would mention their kids and how they couldn’t imagine the pain of ever losing them. Then our entire conversation would take a different turn.
He brought the coffee and tea back.
I secretly challenged myself to see how long I could last before I would have to deliver the bad news to him. I asked him lots of questions, first about what had happened in the past 5 years in his life. He told me about his children growing up and how they were doing at school. About their different personalities with so much joy and passion proud of the people they were becoming.
My story
Then he asked “what about me” and I told him first about the happy things; our house, getting married, travelling the world and our three children. About Violet, Arthur and Aurora, then about the loss of two of them. I finished on a happy note talking about Violet’s fund, Aurora and our hope for the future.
Me and Aurora upset as she had to have her coat on.
I’m now adept at delivering the proverbial sandwich with the shitty grief filling in the middle.
Avoidance
It’s very easy for me to simply avoid catching up with people and avoid setting dates to meet up for fear that I’ll have to have the awkward conversation about what has happened in my life. Don’t get me wrong I’m getting better at delivering it now but somedays it is still very hard for me having to relive it over again along with the associated emotion.
I hate being thought of as “that girl” and “oh poor Sarah” as that’s certainly not me. My loss doesn’t define me as a person. Yes it may have shaped me into the person I am today and yes I feel the affects of that change every second of every minute but I’m still me.
I just wish I could hand that old friend an overview of what’s happened instead and say “here’s an update on me please read it and then we will grab a coffee to catch up”. That way I don’t have to relive anything repeating myself and having to observe their reactions too. It’s a little weird though and cold I guess so not me.
What do you think? How would you tell people if you were me?
Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy. Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath. If he had he would technically have been alive.
TFMR
He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post). We knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision. We still wondered and worried as to whether we were right.
Already grieving
We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother. We entered a period of darkness even darker than we could imagine. The little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur. A few months later we got the surprise news of another pregnancy. A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.
Aurora
Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.
Aurora at 3 weeks old.
We named her Aurora as it means “Goddess of the Dawn” and “Light”. We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.
Arthur
Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.
He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital. We set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here. There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.
Everyone talks about “rainbow” pregnancies and what a blessing they are.
Joy of a rainbow
It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life. We had hope for our future, as a family and truly believed the sun was shining on us again.
Optimism for future
Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok. We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.
Finally announced our pregnancy
We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting. That in January 2018 Violet was going to be a big sister.
Bad news at 20 weeks
Then we had the 20-week scan. Arthur’s heart did still look ok but what didn’t look right was his brain. The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist. Our world crumbled. We then had to wait over a week before we could see a specialist to get more details.
Heart broken again
We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain? The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.
You can’t repair a brain
When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan. The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain.
His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die. His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.
TFMR
We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy. Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear.
Having to give birth to him was traumatic and extremely upsetting. We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair. We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.
Guilt mixed with grief
We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too. In a way this makes it easier as we have constant beautiful reminders of our memories of Violet. I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.
The world can be cruel
Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway. Never been able to breathe or swallow unaided if he had survived to full term. It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear. I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.
After the rainbow
People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again. I’m often asked why I don’t believe in God and this is the reason why.
Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?
We look for the next one I guess and try to keep positive.
When I was pregnant with Arthur I remember we were so happy and filled with hope for the future; even more so after his 16-week scan where they checked his heart and confirmed that unlike his older sister’s it was perfectly symmetrical.
I threw myself into getting prepared for the new pregnancy and baby, which included signing up for Pregnancy Yoga and Pilates courses.
Mindfulness
I remember I was so looking forward to the classes. They’d give me chance to focus on this new little life inside me and to try to be positive about the future. I was also looking forward to building a support network of new friends who would be pregnant like me and so would be able to share the experience with some peers too. We’d done NCT classes when pregnant with Violet and gained friends from it. They were then like a support network through pregnancy and baby’s first year.
How chilled out I felt after the first Pilates session
When I registered for the classes I made sure to let the organisers know my sad story about losing Violet the previous September and she said she’d make the teachers aware of this.
Anyway my first class, which was Pilates went well and afterwards all the participants chatted together about their pregnancies. It was very welcoming and inclusive just what I’d have hoped for.
How I hoped my pregnancy yoga would be
My second class, which was Yoga wasn’t anywhere near as relaxing or positive as I had hoped it would be. Lots of the same ladies were at this one that had been at the Pilates class, so it started off very friendly and welcoming again at the start.
Lack of communication
We then took our places and mats to begin the session. The teacher announced that she wasn’t the one we were meant to have and she had been asked to step in at the last minute. Still no red flags in my eyes.
Then she asked everyone to begin by introducing themselves, what stage of pregnancy they were at and if it was your first baby or not. If it wasn’t your first baby then how old your other children were? Were they looking forward to their brother or sister? I felt my positive little safe space and new support network crumble like a house of cards!
Honest words
They went round the circle and I was one of the last, so I spoke about my second pregnancy. I told them all that I had had a little girl who died at 15 months old, just 9 months earlier. How I imagine she’d be delighted to have a new brother or sister but alas she was no longer here. There was total silence and shock in the room you couldn’t even hear anyone breathing. Finally the teacher said how sorry she was to hear the news and thanked me for being so honest in sharing with the group. I remember everyone being in shock and blankly staring at me. Even when the final girl had started talking about her pregnancy, they were still in shock looking at me. How I managed not to break down I don’t know.
Longest yoga class ever
Then we moved on with the class. I think it was the longest Yoga class of my life. Only one of the other participants looked over and smiled at me, reassuring me to check I was ok. Most other class members even those I had spoken to at the earlier Pilates class now avoided my eye contact. At the end of the class the majority of people rushed off desperate to escape quickly, so they didn’t have to face speaking to me or dealing with any emotional heartache. Perhaps they were worried I had some contagious “all my kids die” disease. Maybe they are right?
The one girl who had smiled at me earlier, came up saying how she was blown away by my strength and she just felt the need to give me a hug. The teacher then apologised for having put me in that position in the first place. She said how brave she thought I was, that I had shared what happened so honestly with the group. Then the tears came and I found myself crying all over the teacher and this poor girl who was 40 weeks pregnant and due to give birth anytime!
Devastated
When I got home I was so upset I wrote to the organisers to say how a class I was supposed to find relaxing had become super stressful and emotionally fraught. It certainly wasn’t the Zen experience I had hoped for! They apologised for the miscommunication with the stand in teacher and said they’d give me an extra session for free if I continued with the course. They reassured me all teachers would be briefed about my situation.
I continued with the sessions (Yoga and Pilates) but they just weren’t the same, as I now received pitying looks from all the participants who simply felt sorry for me. The welcoming feeling I had felt at that first Pilates session was now gone and I was an outcast in the group, cast aside by the others. A few of them occasionally spoke to me but it was more so they could settle their curiosity about what had happened to Violet.
Don’t get me wrong if anyone had openly asked about Violet or whether I had other children, I would have told them the truth anyway. I would have preferred a chance for them to get to know me a little first, before they learnt my sad news as that’s the basis of friendship. It needs to be built from mutual understanding and shared interests rather than pity.
Hope shattered
Then when I lost Arthur at 22 weeks of course I contacted the course organisers and they refunded my subscription costs. I asked then perhaps if I could switch onto a postnatal Yoga course so I could try to heal. I was told that they didn’t advise this as it would be too emotionally distressing as everyone would be talking about their babies and my story would upset everyone else in the class too. Instead I was recommended to try some other sessions that after further research were designed for the elderly and infirm. I decided I couldn’t face attending a class full of geriatrics!
I was devastated that when you think of how many women sadly go through miscarriages, stillbirths and other troubled pregnancies that there are no Yoga or Pilates classes designed for those who have suffered loss. Surely we need it even more than those who have birthed a healthy baby who is still alive?
