From the age we first start school we are conditioned into the fact that September means new beginnings so much so that as adults, even when we have no school age children and are no longer in education ourselves, September can often still seem exciting as we prepare for autumn with new clothes, new stationary and a renewed focus for the future. This has always been the case for me. I loved school even more so a new notebook, accessories and clothes that came with it!
A New Beginning no one wants
September equalled new beginnings. I could always look at this month in a positive way until 3 years ago when that new beginning first came to equal a negative “new beginning” no one wants to ever face. That new beginning was the loss of my daughter and the new beginning that year was trying to carry on with some semblance of life without her in it. No one ever wants that kind of new beginning and this has become my biggest on going challenge to date. It’s tough really tough and never ending. Yes it was nearly 3 years ago but it feels like yesterday one minute and like a scene from a movie about someone else’s life in the next.
Another horrendous September
Then the following September after our annus horribilis we faced another “new beginning” to add to the stress of the one the previous year. This was the loss of a much-wanted son that came out of the blue with shocking news for me accompanying it and so we had to arrange a second child’s funeral in our second stressful September “new beginning”.
Bringing control back
So last September I organised the Violet Ball to take back control of my Septembers and that year’s “new beginning” was a black tie charity event for 200 people to raise funds for Alder Hey children’s hospital. Which as an experienced PR is the kind of event I have organised before but this time with a 6-week-old new born baby in tow event organisation wise that was a first for me!
An exciting New Beginning
This September we decided not to do a charity ball as we agreed we needed a summer to relax and decompress rather than run around finalising an event. I was dreading finding out what this year’s “new beginning” for September would be. But you know what this year’s is actually a positive (hopefully) and challenging one as I got asked to become a part time Associate Lecturer at MMU Business school teaching marketing. New starts and exciting new beginnings that are positive is exactly what I needed and I might treat myself to a new notebook.
Hope your September’s have been successful and less stressful ones too.
Always Violet Skies xxx
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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 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.
Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end” Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?
When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.
I’m a mother of three
Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child. When you have a new baby you don’t throw your old one away and forget about them do you? Or you shouldn’t. If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?
I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.
I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.
I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.
The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler. That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?
I wonder what Violet would have been like today and what she’d have thought of her baby sister? Do you ever wonder what if? I do every moment of every day.
I don’t know if I believe in luck. I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history. I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back. Similar to Karma in what comes around goes around.
Energy and Karma
The energy, karma and positivity mantra was the way I always lived my life. Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.
Violet is born
Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck. She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”. Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy. Other family members and friends prayed for her in a multitude of different faiths.
Her surgery was a permanent fix. People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey. We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.
Violet sick again
Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her. After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died. When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.
We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.
Karma is fake
Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him. Over the years I have raised thousands for charity. I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….
As for God
As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone. The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her? I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.
I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.
Kindness and compassion
I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist. I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.
So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version. If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all. Each to their own and I think child loss survivors need to push on anyway they can.
How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?
When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”. Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.
It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.
Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!
Success measured in pounds
This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”. Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.
You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.
We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.
Sick baby is a challenge
Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones. And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.
To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,
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.
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.
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.
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.
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.
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.
Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too. I am a mother of three not one.
The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.
In a way this is probably also now the reason why both departments are now OTT with our care.
Are you sure you’re ok?
Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time. Although I’m led to believe this also happens often when you have multiple children who are alive too.
Anyway got to dash baby waking for a feed…thanks for reading.