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.
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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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 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?
At this time of the year my sleep (when I get any as my rainbow isn’t sleeping well and yes I get the irony given her name Aurora!) is peppered with a variety of different dreams all following the same subject.
It is always planning and arranging a birthday party. This year it’s one for a 4 year old as Violet would have turned four this June.
So far I’ve dreamt about lots of party themes including flower fairy tea party, puppy and kitten party, sleepover pamper party, Disney strictly dancing party, trolls theme, unicorn sparkles…
The dreams are all enjoyable in the main as I usually wake when the party is all set up ready before any guests arrive but I become upset when I actually wake realising that Violet isn’t here and I dreamt the whole thing.
Occasionally the dreams turn into a nightmare like last night when her little friends all started arriving with presents and balloons excited for the party to come. They were all asking where Violet the birthday girl was and we searched and searched shouting but she was nowhere to be seen. All her friends broke down crying and screaming then I woke up.
When I finally fell back to sleep again I started to organise a pool party in a hired swimming pool and so my dream party cycle began again.
Party girl to the core
I am a party girl at heart after all. I guess it’s a way my PR brain tries to be proactive in processing things and it could be worse I could keep writing the same press release over and over!
If anyone needs a kids party planning and arranging then just let me know, especially if it’s for a four year old as I can literally do one for you in my sleep! Violet would have had the best parties and I can assure you so will her sister.
Last year planning the Violet ball helped to halt these dreams, so I may have to start up plans for the Violet ball 2020, anyone fancy coming?
Always Violet Skies
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For those of us with angel babies this time of the year leading up to and including Mother’s Day is a really tough time as we’re reminded constantly about who and what is missing from our lives. I know it’s tough also for those friends of mine who’ve wanted children but for whatever reason it hasn’t happened for them.
This year is a little different for me as I now have my gorgeous rainbow baby Aurora but it’s still bittersweet. I should be waking up to a hand made card from a nearly 4 year old and perhaps she’d bring me breakfast in bed or a cup cake she’d decorated. I imagine she’d have dark blond curls by now and be constantly humming under her breath, as she loved music.
So please I implore you to be mindful of others during this next week. There are those of us who are missing a beloved mother and those of us who are a grieving mother so please be kind and gentle to each other.
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.