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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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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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?
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.
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.
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
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