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
If you enjoyed reading this perhaps you might like to read these articles –
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
You might be interested in these other blog posts –
A few days ago I visited Prague with my 11 month old rainbow baby. Ordinarily I wouldn’t go away in the heat of the summer as we prefer to holiday in autumn, winter or spring but hubby was on a conference for work so rather than staying home alone with baby for a week I opted to go over too.
Unfortunately we chose the hottest summer days on record for the Czech Republic for our visit which was stifling especially when lots of places there didn’t have air conditioning. Keeping baby cool was a challenge so I thought I’d share my top tips in case they’re useful for the rest of you.
Ice cubes for play time
If you’re out and about it can be hard to both entertain and keep an active baby cool. My top tip for this is to order a glass of ice cubes whenever you stop for a drink or food then baby can play and suck the ice. Having fun and cooling down at the same time.
Chew toys in fridge
If your baby like mine is teething then keep their teething toys in the fridge over night then they will be nice and cold for chewing in the daytime. A cool bag is a good investment for when you’re travelling as you can not only use it to store food and drink but also teething toys and cloths (see my next tip!).
Cold damp muslin cloths
If you’re heading out into hot weather I find chilling damp muslin cloths to take out with you can help to keep baby cool in their buggy. I even wrapped some ice cubes in the cloths and popped two either side of baby in her push chair when I had to venture out in 37 degree heat.
Large muslin cloths are a great investment to take out underneath the pram as when I needed to cool baby down rinsing one under cool water then placing over baby’s legs can help to cool them quickly.
Pram with sun shield factor 50+
It’s worth when you invest in a pram or buggy for travel that you get one that has sun protection built into the sun shade. Ours has factor 50 in the canopy of it which comes in really handy when we travel abroad as we then know even it we can’t find shade baby can sit in the buggy and will be protected from the sun.
Sun shade for snoozing
Another top investment tip is to buy a Snooze shade cover that is SPF 50 that will stretch over a buggy, pram or car set to protect baby safely while they sleep. The one we have folds down into a small pouch you can pop under the pram or into a change bag easily for travel.
Lots of people mistakenly cover their prams with muslin cloths or blankets to shade their babies but inadvertently increase the temperature raising it to dangerous levels that could cause death. Please for the sake of £20 invest in a proper shade cover.
Home made fruit juice lollies
If you’re at home in the heat then you can make fruit and vegetable lollies easily for baby. You can even use ice cube trays for this. If your baby is refusing food because of the heat then this is a great way to encourage them to eat something.
Keep wet wipes in the fridge
This is an easy top tip that when I thought of it I couldn’t believe I hadn’t down it before. A cold wet wipe can be the perfect way to easily cool your baby down after time in the heat again you can keep these in a cool bag when you go out too.
Pop up play tents
A pop up sun tent with SPF50 is a great investment for play time on the beach or even in your garden at home. They fold flat so can easily be popped into a suit case.
Paddling pool DIY
If you’re travelling and baby is hot sometimes you dream of having their paddling pool from home. Recreate this easily in the sink of where you’re staying or even buy a cheap bucket or washing up bowl from a local store you can use as a little paddling pool to cool them down.
Ice cubes in front of a fan
At night without air conditioning it can be hard to keep baby cool. If you have a fan pointed towards them anyway then place a bowl or ice cubes in front of it so the air is chilled before it reaches baby. Or even place the bowl below the open window the breeze is come from. Home made air conditioning!
It goes without saying that sun protection is always a must for baby as are sun hats and protective clothing where best.
The other day I realised that I have spent the last five May’s with one of my baby’s. I have either been pregnant (for 3 of them including my 40th birthday) and the second one I was organising my first baby girl’s first birthday party. This was the first May bank holiday for 3 years that I have been able to have a glass of vino and weirdly enough I am thinking about a second daughter’s first birthday party (this time in July rather than June).
Last year in 2018 we were living in the middle of a building site, I was heavily pregnant and we were going through a very hot summer. I spent most of it in the shade with an electric fan and my feet in cold water.
The year before that, 2017, I was in the very early stages of pregnancy with Arthur and suffered tummy upsets for a fair few months. It was also my 40th birthday so my hubby threw me a bbq party where we disguised appletiser as Prosecco, as we hadn’t announced our news to anyone. Despite my tummy upsets, we had hope for the future and it ended up being the only May I would spend with my little boy. Our slither of hope was smashed when September rolled around and we had to say goodbye to Arthur (read about it here).
May 2016 was one of my happiest times as Violet was doing well and was nearly a year old. She was about to be a flower girl at my cousins wedding and she’d gotten a princess dress that she loved. We were planning her birthday party that was a joint belated wedding reception too. We made so many very happy memories that summer before the horrendous September came along. I was lucky enough to spend two May’s with Violet.
May 2015 I remember being heavily pregnant with Violet having so much hope for the future. Despite getting negative news about Violet’s heart we were convinced we were in the right specialist hands and thinking positively we told ourselves everything would be ok. Violet survived in 2015, and that was the main thing, all thanks to Alder hey children’s hospital. I remember it rained a lot in May but then we had hot weather as soon as I went into hospital in the June typical!
Not about Theresa May
Anyway I just wanted to write an article that wasn’t about the other May and one that highlights how vastly different one year can be from another. I would like for those of you struggling to get pregnant or to get a rainbow or just to cope with grief to recognise how different one year can be from the last. I hope it gives some strength and encourages people to remember happier times too. Keep your face always toward the sunshine and the shadows will fall behind you.
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
Here are some other blog posts you might find interesting –
This week has been a really challenging one for me because my baby has been properly poorly for the first time. Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.
Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful. Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.
The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.
Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).
Sleepless in Manchester
The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.
Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.
Holding baby while she sleeps
The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.
Rainbow baby’s are difficult
You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.
The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.
What are the chances?
Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.
I’ve seen what hell looks like and I’ve experienced unspeakable pain. I have sat by the side of a hospital bed for days and nights on end. I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs. I’ve stifled back my own crying and sobs so as not to distress my poorly child. I’ve told my crying child that all of this is to make them better and lied that they will be ok. I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.
You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow. I can tell you that hell is watching your child in pain, being tortured and then them die. Then you have to arrange their funeral before somehow going on with your life.
I never ever want to go back there again thank you. If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it. If I have to hold her while she sleeps then I will do. Anything I need to do I will do it.
I also keep having to repeat the same mantra over and over in my head.
“This is a different baby. A different person. She isn’t the same. ”
To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too. Sometimes it’s tough being a parent.
Sarah – Violet Skies
Have you read these other posts about Rainbow babies?
Like most people I love bumping into people I haven’t seen for a while. Someone I used to speak to or deal with all the time perhaps through work or a project and who has simply drifted away. Now in these modern times, thanks to social media, quite a lot of these people are still kept up to date on the happenings in my life. They are aware of the sadness of recent times, however there are occasionally still a few that slip through the net.
I met up with someone recently who I hadn’t seen for 5 years and initially I was so pleased to have ran into them, eagerly accepting the offer of a coffee in a nearby café. Then as I waited for them to get served with our brews my heart sank, as I realized the conversation I was about to have with them. I could forecast the surprised look then sadness before there would be pity and sorrow for my loss. Yes they would be sympathetic and the usual comments of “I’m so sorry” and “how have you coped” would be expressed. They would mention their kids and how they couldn’t imagine the pain of ever losing them. Then our entire conversation would take a different turn.
He brought the coffee and tea back.
I secretly challenged myself to see how long I could last before I would have to deliver the bad news to him. I asked him lots of questions, first about what had happened in the past 5 years in his life. He told me about his children growing up and how they were doing at school. About their different personalities with so much joy and passion proud of the people they were becoming.
Then he asked “what about me” and I told him first about the happy things; our house, getting married, travelling the world and our three children. About Violet, Arthur and Aurora, then about the loss of two of them. I finished on a happy note talking about Violet’s fund, Aurora and our hope for the future.
I’m now adept at delivering the proverbial sandwich with the shitty grief filling in the middle.
It’s very easy for me to simply avoid catching up with people and avoid setting dates to meet up for fear that I’ll have to have the awkward conversation about what has happened in my life. Don’t get me wrong I’m getting better at delivering it now but somedays it is still very hard for me having to relive it over again along with the associated emotion.
I hate being thought of as “that girl” and “oh poor Sarah” as that’s certainly not me. My loss doesn’t define me as a person. Yes it may have shaped me into the person I am today and yes I feel the affects of that change every second of every minute but I’m still me.
I just wish I could hand that old friend an overview of what’s happened instead and say “here’s an update on me please read it and then we will grab a coffee to catch up”. That way I don’t have to relive anything repeating myself and having to observe their reactions too. It’s a little weird though and cold I guess so not me.
What do you think? How would you tell people if you were me?
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
You might be interested in the following posts too –
There’s been lots of talk this week about people having a “blue Monday” or a “blue week” as apparently people are skint from Christmas/New Year/Sale shopping and have fallen off the wagon when it comes to New Year’s resolutions. Well if those are your major problems in life to be upset over well boo f*cking hoo or at least that’s what I want to say to people.
Of course I don’t wish to belittle anyone who is genuinely suffering from depression, as it is an awful illness but those people who are sad because of minor issues like the weather I just want to grab and violently shake.
Feeling blue everyday
I wake up and every day is a blue Monday, as the first thing I think of when I open my eyes in the morning, like most parents, is my children. I’m then slapped in the face by reality and the fact only one of them is alive. My little girl Aurora makes me smile despite the blue start and proves there is always a little sunshine in the darkness if you focus on the light no matter how hard that can be. I’m so used to feeling “blue” that it has become just another part of me.
On the positive side because of this sadness within me other things going wrong seem to just be absorbed into the same abyss that’s already there, so I don’t feel anymore sad but exactly the same as I did before. For example our washing machine just gave up the ghost and a few years ago it’d have meant maximum stress about the cost but we simply ordered a new one on our credit card, to be paid for later all sorted. Minimum drama and less fuss as my mum says “don’t sweat the small stuff”.
So to those of you who think you have issues this week then….
You’ve put on a few pounds since Christmas and the diet you started on the 1stJanuary you’ve given up on already, so now you’re depressed. Think yourself lucky at least you’re not living on the streets homeless and hungry. At least you’re healthy too and not in hospital battling some horrendous disease or sat beside a loved one who is.
The weather is a bit grey and miserable so it’s making you feel down. Well you do live in the UK and it is winter so get over it or look to emigrate. Change your situation. Remember also that grey and miserable can be pretty too just change your perspective and wear bright colours to compensate.
Skint after Christmas
So you spent too much money over Christmas and New Year so you feel a little down. Why not start a side line business connected to a hobby or dig out some things you don’t want any more and sell them? Basically stop moping and get moving. Do something about it and change things. You have the power! (Now I sound like He-man I do apologise) Websites like Ebay have always been popular but also look at selling things through sites and apps such as Depop and Facebook marketplace. If you’re really struggling then get advice from the Citizens advice bureau they can give impartial advice on debt and other issues.
Put your money to better use
Given up on whatever New Year’s resolutions you started? If they involved spending money on gym membership, then cancel it and donate the cash to charity, think of the actual good you can do with it instead. The time you’d have spent in the gym you can spend volunteering at a homeless shelter, local dogs home (that’d be great free exercise!) or visiting elderly people? Think of the good you can do for others instead of focussing inwards on how bad you feel personally. Stop being selfish and think of other people instead. I can honestly tell you that you will start to feel much much better just try it!
You can easily find volunteering opportunities in your community via sites like the Do it Trust
Chin up; keep going and soon it’ll be springtime.
Always Violet Skies
You might be interested in the following posts too –