Back in 2016 I felt the worst pain I have ever felt when I lost my beloved daughter Violet and then the following year I lost her brother Arthur at 22 weeks of pregnancy too. I knew then exactly what people meant when they described a broken heart. I have never felt a pain like it.
Ironically after I had lost Violet in early 2017, before Arthur, I sought medical advice for dizziness and lethargy that I’d had on and off since I had had Violet. When she was alive I was told it was probably because I was sleep deprived with a new baby and being a busy mum but when these symptoms continued after she had gone I got it checked out again. I was diagnosed with having an ASD or hole in my heart that will have been there since birth but possibly enlarged during the pregnancy and birth of Violet.
The hole it turned out was pretty large nearly 2cm in diameter and without a repair my symptoms would probably have got worse and I was at higher risk of clots and stroke too. So I have been waiting for a repair since early 2017.
I still remember that first diagnosis of a broken heart and laughing saying “well I know this already as my daughter has just died”.
So now it feels odd when I tell people I had a broken heart but now it’s fixed as though it means I am over the grief of using my children. I find myself having to say physically my heart is now repaired but of course emotionally it isn’t.
What’s great is that when I came round from the anesthetic I asked was there a window open as the air felt so fresh, like it does at the seaside or in the country when it’s full of oxygen. Of course there was no window open I just now have the ability to absorb more oxygen from the air so even today when I breathe in the air feels clean and fresh (yes even in Manchester).
I can’t wait to visit the seaside or countryside as I feel it will blow my mind the amount of oxygen I will have.
The other major difference already is that I don’t get out of breath as easily just walking down the road and my muscles don’t burn after even slight exercise either. I felt like the bionic woman initially!
It will take a few months hopefully before I feel the full affects of the operation as one side of my heart is still very enlarged so will take time for the pressure to dissipate but I’m hopeful that by spring I will certainly have a new lease of life.
I will never run a marathon but looking forward to having more energy to spend quality time with my rainbow baby and family alongside of course juggle work, charity and this blog too.
So at a time when lots of people have resolutions about losing weight or stopping smoking I am trying to remain as healthy and stress free as possible in order to give my heart a fighting chance to heal and recover properly.
What are you hopeful for this year?
Do you have resolutions or hopes for the decade ahead?
Someone asked me recently what my plans were for the next 5 years. I laughed and said ideally I still want to be alive and I hope my family are all still alive too. Then I’d like us all to be healthy and happy. That’s about it.
A 5 year plan?
Not sure that was the answer he was after as he said I meant professionally and for your business. Well it’s not much use wanting anything work wise if I’m not here is it was my answer?
Maybe they shouldn’t ask parents of loss who have a heart defect that will hopefully be repaired before Christmas that question?
I used to be a planner
I used to be into forward planning years ahead at least as far as work, holidays and home went but these last few years have taught me that there’s no point putting too much effort into future plans when something could happen unexpected at any time that can change your world in a heartbeat.
Now I try to live in the present
It much better to live in the present as much as you can and also to try not to dwell too much in the past either as there’s nothing that can be done with that now.
Don’t get me wrong I still plan a little because I have to with work or family plans but i only tend to plan a few months ahead at a time.
How about you? Are you a planner?
Always Violet Skies
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November is here at last and I say that not because it is a favourite month but just because October is finally over. This year it was particularly tough.
I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all. The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.
A poorly rainbow
Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return. This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.
We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.
Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too. We will continue to juggle work commitments and childcare thanks to the support from family and friends. There’s no way we will risk losing this little girl too.
New parenting territory
It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day. It makes no logical sense why I feel relief at this but my stress has lifted slightly.
Is this normal with rainbow babies? Anyone else feel this way too? Or am I just odd? Please let me know.
So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.
Never mind Halloween please light candles on 1stNovember to mark the first All Saints day today “Día de los Inocentes,” a Mexican catholic tradition that honours deceased children and infants. They are remembered on this day when the veil between worlds is thought to be the finest.
All Hallows Day
In Mexico, All Saint’s Day also known as the Feast of All Saints, All Hallows’ Day or Hallowmas is celebrated with the first day of the Day of the Dead (Dia de los Muertos) known as “Día de los Inocentes,” honoring deceased children and infants. The 2nd November marks a second day for all deceased. Some religions and cultures call November 2nd All Souls’ Day and this is the day that is often chosen for the Day of the Dead parades and celebrations.
Catholics traditionally take flowers to the graves of loved ones and Saints who are innocents on these days. Perhaps you’d like to light a candle at home instead to remember those babies or children who have died on the 1stNovember and then again for any adults on 2ndNovember too.
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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.
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.
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.
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.
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
Always Violet Skies xx
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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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In early September when kids start or go back to school it’s not so much the hundreds of photos of them lined up in front of either a front door or a fireplace that irritates me but more the stupid comment(s) that accompany them. So to save me from adding a passive aggressive and brutally honest blunt comment in reply to some of these posts I decided instead to write this, so hopefully if you care you will read this and think before you write that irritating social media post.
Here are those comments
“I wish he or she would stop growing” errr no you don’t because that would mean they would die and then be dead like my daughter who remains 15 months forever.
“Oh they’re growing too fast” at least they are growing there are lots of parents out there whose babies are sick and not growing fast enough. Be thankful you’re not them and don’t insult these parents by complaining when your child is healthy and thriving.
“Oh I wish they would stay as babies forever” errr no you don’t see my earlier comment above. Would you like it if they died then they would always be a baby?
“I miss when they were little” that’s why taking photos is so important but be thankful you don’t just miss them because they are no longer with you.
“It’s all going too fast.” You know what life tends to go fast when you’re enjoying and/or loving things. Try sitting in a hospital chair next to a sick child and your days seem to drag on and on. Or heavens forbid sit next to their grave. There are lots of parents sat in hospital with their school age child who is too sick to attend school and I can tell you their days just drag on. They would give anything to be doing a school drop off instead and waving goodbye to a child at the school gate rather than in an isolation ward as they nip to the loo.
“I wish time would stop” no you don’t because then you would be dead. Do you want your child or family to grow up without you? Think how extremely lucky you are to be alive now and living in the reality you have. Embrace every second and live in the present not the future because you certainly don’t want to be living in the past or to only be alive in someone else’s past.
Share those photos
So folks if you feel the need to share photos of your little darlings in their school uniforms to celebrate that they are growing, healthy and happy. To thank the universe that they were born to you in a country with free healthcare and education, so they can actually go to school then great share away. But please out of respect to those of us not in as privileged a position as you don’t wish for your children to stop growing, for time to stop or say that you are upset they are going to school. Be happy and be grateful. Appreciate the now and embrace the moment because you are right about one thing it isn’t happening again. Relish the time and moments. Take the photos, make the memories and remember to feel happy not sad. Embrace this exciting new chapter in you and your child’s life – hopefully there will be many more yet to come too.
I know a hell of a lot of people who would love to be buying a new school uniform, waving their child off at the school gate and at the end of the day hearing all about how their first day went. Myself included. This September Violet should have been starting Primary School and that she isn’t hurts us beyond belief. We would do anything to have her here now. We know as a little book worm at 15 months that she would have loved going to school. So if your child is attending school this September be thankful and celebrate it but don’t for a second wish for something different.
Big love, Sarah
Always Violet Skies x
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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 discovered last year that, whilst Mothering Sunday as a concept in the UK came from an 16th century English religious tradition (read my original post here), the more widely known Mother’s Day was founded in America in 1907 by a lady called Anna Jarvis. Anna wanted to do something to honour her mother who had lost 7 babies. This original version of Mother’s Day, that rapidly became the commercial juggernaut it is today, was in fact created to remember and honour a grieving mother.
The original story
Anna wanted to create a day where people could honour and reach out to grieving mothers to actually recognise their pain and suffering in a day of remembrance. Rather than society continuing to ignore and pretend that babies don’t die. That grieving mothers don’t exist, they would be one day a year when people are kind to them. She wanted to change things for those grieving mothers everywhere to help them to feel less alone and less isolated.
It took only a few years before this day, that was associated with deep emotions and grieving mothers, was hijacked by commercial organisations. In the US they saw it as an opportunity to sell gifts and greetings cards to all mothers. It was then that the commercial money making Mother’s Day as we currently know it was born.
Now a day of torture…
Now it is with deep irony that those women who are suffering the grief of losing a child or perhaps not being able to conceive one are no longer recognised by this day. Instead they often feel even more isolated and upset by the commercialisation and celebration of motherhood. A motherhood they are grieving the loss of and maybe struggling to come to terms with not having.
I’m a mum of three
Someone said to me the first Mother’s Day after Violet died that I wasn’t to let the day upset me. She was sure I would no doubt become a mum again in the future. I was devastated and not strong enough to reply that I will always be a mother. It’s just my child is no longer here with us. I still think like a mother, feel like a mother and to a certain extent act like a mother because deep down I am one!
This year I have my rainbow baby Aurora so some strangers may say “oh you’re a mum again congratulations” but actually I became a mum in 2015 and even though you can’t see all of them. I am in fact a mum of three.
Message for everyone
Anyway to all those grieving mums out there please remember this day was created exactly for women like us. Those who have to deal with the pain of losing or not having their babies with them every day, so don’t let other people make that pain worse. Or commercial organisations make you feel bad, as they’re just doing it to make money.
To all the mother’s out there who have living babies please remember why this day was created. That it is for grieving mothers, who are exactly like you, but who through no fault of their own unfortunately lost their children. Please do us grieving mothers or “wish we were mothers” all a favour, celebrate Mother’s Day and your wonderful children. Hug them close, love them and appreciate all the little moments. Remember that some of us aren’t as lucky. You are blessed not because of the gifts of flowers, chocolates and handmade cards but because of the little people you have in your lives. That others would happily give anything to have.
If you have a friend or family member who’s suffered child loss maybe use this weekend as a reason to go out of your way to reach out to them. Send them a message, drop off some flowers or invite them for a coffee just be nice people. Remember this weekend is really for them. I’m sure Anna will be smiling down if she sees people embracing the day as she intended. Spread the love.
There’s a lot out there about new mums being lonely and how as a new mum you can suddenly feel lonely as your world changes overnight when your new baby is born. People talk about how important it is to make new friends and to build support networks so you don’t feel isolated. I’ve been there and get why some mums feel that way so can champion the importance of joining groups or courses to meet other new parents perhaps NCT classes or pregnancy yoga (as long as you’re not a rainbow mum read my earlier post about my experience with this here) before the birth or a baby class afterwards.
Loneliness as a mother of loss
What no one really talks about though is how lonely it is when your baby or child dies. As a mum of a living baby yes it might be lonely but you only have to go into a cafe or shop or walk down the street with a pram before someone stops to talk to you, to coo and fuss over your baby. It’s more than acceptable in society to be a new parent and to have a baby. If anything society celebrates it as this great achievement, which it isn’t, and miracle, which it is. But what happens if your child or baby dies? What then?
Well I can say from experience that society ostracises you. The support networks you had as a new or expectant mum suddenly disappear and aren’t there anymore. You can’t go along to a mother and baby group minus a baby can you? Or a post-pregnancy yoga session when that baby didn’t survive even though perhaps you’re more in need of that session than others. Well why can’t you? Because society makes you feel like an outcast.
You should be able to attend these groups and classes but you’re made to feel unwelcome. I phoned one yoga school after I lost my rainbow baby Arthur at 22 weeks (read about it my experience with Arthur here) and asked could I switch my paid for maternity yoga sessions to a post-pregnancy class but she advised that it wouldn’t be suitable for me and gave me a refund instead. All of a sudden your mummy membership has been revoked. You aren’t welcome anymore. Suddenly you’re pushed out to the fringes of society.
When my daughter Violet was alive I was celebrated by that same society, who exclaimed, “Oh you’re doing such a good and thankless tiring job as a Mummy”, “wow you’re a working mummy too” and even though motherhood is stressful at least it is acceptable.
Then your child dies and you’re pushed out, ignored and no one knows what to say or do with you anymore, so it is easier for him or her to simply ignore you or your situation. It is as though your mummy label has fallen off, when in fact you are still a mummy but just not of a living child. You’ve had the sleepless nights and are still having them just now they are because of your tears not a baby’s.
The invitations cease
No one wants to invite you out anymore. Well we don’t want to risk upsetting you, they may say, if we talk about our children. Suddenly if you do see any of your old friends by accident they deliberately avoid talking about their children and mentioning yours for this reason, when actually having only discussed parenting and each other’s children for the past year or more that line of discussion might actually be a great comfort and more the “normal” you’ve been used to. It is actually lovely for someone to mention your child’s name as it shows they still remember them and that their memory lives on, as one of the fears a grieving parent has is that their child will be forgotten.
A few years before I became a mother I was a singleton for years and I was subject to a different kind of societal taboo. I actually found myself longing to be in that outcast group again as it was more familiar to me!
So what to do about it?
If you’re the parent of loss then don’t feel alone there’s a huge community of us out there who can relate to what you’re going through. There are some links on my site here and don’t be afraid to reach out to friends to invite them out for coffee/lunch even if you don’t feel like it you’ll feel better for it as often they just don’t know what you need so tell them.
If you’re a friend or family member of someone who has suffered loss please do the following-
People used to ask me what they could do for me & sometimes I knew but often I didn’t know or couldn’t think about what I needed. So instead perhaps say I’d really like to be here for you. Would you like to come out for lunch with me or would you prefer me to drop some food round to you? Do you fancy a walk & a coffee somewhere or the cinema or I can pop round to you? By giving them choices it makes it easier for them to say what they’d prefer. Multiple-choice questions are always easier.
When you do see them just listen and give them a hug if appropriate. Feel free to say – “I can’t imagine what you’re going through” or if you’ve suffered child loss yourself then “I’ve been there I’m so sorry I understand what you’re going through” (please note: don’t say this if the closest loss you’ve suffered is losing a pet, as hard as that to you is it really isn’t comparable to losing a child nor is saying everyone has bad times then comparing it to money worries or a sick parent). Don’t say “at least he/she didn’t suffer”, “it wasn’t meant to be” or “at least you’re young enough to have another”. Remember silence is golden.
The period leading up to & straight after the funeral is when lots of people will be fussing over the grieving parents but that will end one or two weeks afterwards, then everyone outside the family will go back to their normal lives as if nothing happened. Contact your friend then, as this is when the loneliness begins. Good friends of mine dropped in food, insisted on cooking for us in our home & dropped in alcohol. One bought us a voucher card for a meal out that encouraged us to leave the house. Others sent flowers to show they were thinking of us if they lived far away. Remember even something small like a card or text message can make them feel less alone.