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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A fellow blogger recently launched her own hashtag challenge #julyyourway and the first day was entitled “your authentic self”. I realised I no longer knew exactly who I was anymore and decided I needed to write this post in case some of you loss mums or parents are the same.
Who am I?
I don’t actually recognise myself anymore. I can tell you all about the old me in great detail as I spent 39 years with her.
The old me
The old me was strong, determined, unwavering and a great calculated risk taker. Her instincts about people and situations were nearly always right. The type of person you could drop into a room of total strangers and she’d be fine chatting to them making friends pretty quickly. If someone told her she couldn’t do something she’d make it her mission to prove them wrong. One of life’s dreamers believing in positive thinking and that with the right mindset you can achieve anything. Always working towards a vision of the future and undertaking the next challenge. Underneath the confidence she genuinely cared about all those she met, worked with and spent time with. It took me a long time to get to know, appreciate and love the old me.
Where did she go?
What happened you might ask that would fundamentally change your personality permanently well like most new mums four years ago I lost myself a little after the birth of Violet. All new mums will relate to the fact that usually you immediately become more risk adverse as your instincts to protect kick in and your self-confidence takes a knock too as your body shape changes. However most mums will tell you that maybe a year or two later they rediscover themselves again building up that old confidence. Their core self is fundamentally unchanged.
That happened to me too. I was starting to rediscover the old me again in September 2016 then the unthinkable happened.
When you lose a child they say your world changes, life is completely altered and things will never be the same again.
The air is completely knocked out of you but what you don’t realise is with the air goes your personality, as you knew it. All your hopes and dreams, your confidence, trust in yourself and others, All the things you’ve literally spent a lifetime developing, building & honing are wiped away in a moment. All the negative things cling on such as self-doubt, negativity, criticism, depression but the good things…
The old me was confident, fun and had a wicked sense of humour. She was lovely to her core because she genuinely believed there was more love in the world than bad. She truly believed in positivity and only saw the good in people. She believed in what her gut or core instinct told her about people and situations. She actually believed that eventually life will come good and that good things happen to good people. Work hard try your best and believe in others then good things will happen. She always looked for the silver lining in every black cloud. It never failed her until the day her daughter died.
Try a reboot
At first you think these stronger qualities are still there just diminished like they were post-child birth. Just like when you’ve had set backs or heartbreak in the past? Like a hard drive that just needs a reboot. You try to do that to reboot yourself by trying similar things you’ve done in the past to recover like rest, holidays and seeing loved ones. Over and over you try in vain to recover. Eventually you discover that these qualities aren’t dormant any more. They aren’t still there to be rebooted they’ve been completely wiped out. It’s like you’ve had a computer virus in your brain that’s wiped out the useful things leaving only that photo of you from a beach holiday 10 years ago that you didn’t even like and the only email messages that have been retained are spam ones about PPI.
You have a vague memory of the old you but it’s hard to imagine now you were ever that person. I can only explain it by saying that it’s as though I’m viewing an old movie about someone else. I miss her. I’d spent years trying to learn to love myself, to be confident in my own skin. This confident me enabled me to be very good at what I did career wise, especially as I was able to juggle twice as much work as anyone else and easily did 16 hour days regularly. I was a caring considerate person who loved life and loved having fun. I really did work hard play hard and excelled at it.
Now that person is gone. Yes physically I look the same. I still have the same cognitive abilities (sleep deprivation affected maybe but I can still ace an IQ test or two). I even the same memories but I feel as though I’m looking in at someone else. I miss the old me but after over 2 years of trying to get her back I’ve realised that she’s “left the building” never to return. I’ve accepted that I need to build up these qualities in myself from the beginning again, to build the new me.
Still a central core
I’d forgotten how I used to be really strong. There’s a central core of that original strength left that’s hardened up, so much that it takes a lot for me to cry now but every so often a bit of it crumbles. This core is still surrounded by kindness and compassion just not the huge volume I used to have. This has been coloured by grief and the realisation that really bad things can happen to good people. Karma doesn’t exist and positive thinking will only get you so far.
The new me comes with a great deal of darkness the old me didn’t have. This has shaped my sense of humour so it is very dark now. I don’t trust my own gut instincts anymore, as these have been proven wrong twice with the very worst results. I also no longer trust others especially those in the medical profession where I now take what they tell me with a pinch of salt.
Luckily over the last 2 years that I have been hitting reboot I have seen some of my wacky creativity come back and my ability to speak to total strangers on some days now is almost as good as it was. Although I find it extremely hard to tolerate fools and I seem to have become even less diplomatic than before so I can be quite honest and frank now. This is of course a work in progress. Some things like confidence and speaking to strangers just takes practise and stepping out of your comfort zone. That’s at least one good outcome in that I don’t really have a comfort zone rather a numb achy uncomfortable zone.
Version 2.0: Post child loss
Unfortunately unlike computer software I don’t think “version 2.0: after child loss” will be an upgrade on the one before. Hopefully I’ll eventually be able to patch over some of the holes and maybe even rebuild a few of the qualities the old me had that were great. It will take time though as it took 38 years of hard work to develop the old me.
Feel free to check in with me again at age 79 and we can see if the old me has returned just a wrinklier version.
On the positive side it has changed my outlook on life instead of planning for and looking to the future I try to live in the present. To enjoy the here and now making the most of every moment as I understand just how short life is.
Do you ever feel you have changed? Is it for the better or worse?
A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change. We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.
The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.
For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages. The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.
Leonardo Di Vinci
This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing. I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too. He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.
Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s. What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.
Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans. They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.
All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time. I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news. Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death. So to say I was skeptical about what “experts” told me was an understatement but you know what? The Tommy’s experts or as I like to call them Angels were right!
So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh. The last time they had seen her she was on a black and white screen during ultra sound scans. It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.
Tommy’s is a charity
Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.
Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead. Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?
Also make sure you visit the Leonardo Da Vinci exhibition more details click here.
For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up). Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.
My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west. It meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.
Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.
Other “Mother Nature” surprises
Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed, thanks to medical science, then only to die from an extremely rare lung disease. Then I am diagnosed with a heart disorder too, that it seems I was born with.
My second baby was given the all clear as healthy at his 16 week scan. Then we were told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR. During both of these births medical procedures went wrong and I nearly died. Then I was told the issues both babies had were probably genetic and inherited from me. After tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).
Not all bad surprises
Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur. This time it went smoothly producing the beautiful Aurora. Perhaps she felt she owed me one!
So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock on the one day I really wanted to be able to see a consultant shocked me at all. I should be getting used to this by now.
Ride the Wave
I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up. It really is like the shipwreck analogy of grief. I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again. Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!
All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.
I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.
Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature. Keep warm.
Always Violet Skies
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Some of you who read this blog, know me or just follow me on social media may be aware that my daughter Violet died at the end of September but what you might not realise is that her funeral coincided with baby loss awareness week 2016. The second anniversary of that is today.
At the start of this week in 2016 we got the news that the coroner was releasing her body so we had to finalise things with the funeral directors and to make arrangements for her funeral, including making decisions like cremation or burial. We decided to bury her because I couldn’t face the idea of my baby being burned. Crazy I know as she was dead already but I still felt as though I was protecting her little body by burying her instead. Then we had to decide where to bury her and to pick a plot.
Choosing a burial plot
We decided on southern cemetery as it was close to where we live and there are lots of important and respected people resting there. I know it seems ridiculous but I felt as though she’d be in good company alongside Elizabeth Gaskell and Anthony Wilson – if it’s good enough for them then….
I remember us visiting Southern Cemetery and one of their team taking us to show us the baby section of the cemetery. They explained there was only one of these tiny plots left beside the road going through the cemetery. It was a small plot surrounded by other little baby graves. Next to it was a communal baby grave shared by many that must have had them all stacked on top of each other as though they were on a supermarket shelf. It made me feel ill and I decided over my own dead body would she be buried here.
Investing in the future
I asked the cemetery man was there not anywhere else and he said we could have a family burial plot but that would be more expensive. I said “fine she’s not being buried at the side of a road even if I need to put it onto a credit card”. I asked him to show us what they had available. He showed us several plots and one was under a big cherry tree opposite the grave of Kirsty Howard, the amazing girl who was so brave and raised so much money for Francis House. I said that one would do. None of the plots were acceptable or perfect because my baby being dead wasn’t acceptable. Our final choice was simply the least offensive and I strangely felt comforted knowing that Kirsty would be her neighbour. I hoped being kind and compassionate that she would look after my little girl.
The funeral plan
In the middle of Baby Loss Awareness week 2016 I wrote Violet’s eulogy. I wanted to ensure her send off did her memory justice and that everyone would know exactly who she was and would understand why we loved her, as much as we did. We selected her favourite songs for her funeral, a close friend agreed to give the service for us and we thought about what she would like. I know she was only 15 months old but she had very strong opinions and preferences on things. She loved balloons so we asked everyone to bring a balloon to her service. She liked to make people smile so we arranged for all the balloons to be collected then taken to the children’s hospital and her nursery. We set up her fund in this week too for Alder Hey hospital’s cardiac surgery fund and asked people to donate to it.
The day of her funeral, the 14thOctober, was the penultimate day of baby loss week 2016. I remember it was a crisp autumn day with blue skies and sunshine, even though there had been bad weather forecast we only had high winds that day. I went through the day in a bit of a trance almost as though I was an outsider looking in and I carried the angel bear that I had been sent the day before. I cuddled and sobbed into the bear throughout the service. The bear was a gift from an amazing little charity called Heart to Heart UK that also gifts bravery bears to children undergoing heart surgery. Their gift really helped me.
Wave of Light
The day after Violet’s funeral was the last day of baby loss awareness week. All around the world people lit candles at 7pm creating a wave of light in memory of all the babies lost. We lit a candle in our empty quiet house full of sympathy flowers and cards then we cried some more and had a drink.
I decided to write about our week in 2016 because sometimes you don’t think about what parents have to go through logistically just after their baby dies. You almost forget that they have to make important decisions during this most horrendous time. Decisions about choosing a funeral director and whether to bury or cremate? What to do for a service? Whether to ask people to donate to charity and if so which one? All these things would be difficult enough if your child hadn’t just died but they have. The world as you know it has just ended. The most important person in your world has gone and you have to make these decisions.
So please join in with celebrating the end of child loss awareness week by lighting a candle at 7pm on Monday to join the wave of light. Also have a drink with us as we mark the end of the anniversary of probably one of the most difficult weeks of our lives.
Thinking of our lost babies Violet and Arthur this week but about our darling daughter today. The day we laid her to rest with music, balloons and colour just how she would have wanted.