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.
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.
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-
Ask – 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.
Listen- 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.
Timing – 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, so 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 and 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 and 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, 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.
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 and 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.
Leonardo’s sketches of how the foetus develops in the womb
Leonardo’s sketches of how the foetus develops in the womb
Leonardo’s sketches of how the foetus develops in the womb
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 and those answers are being discovered thanks to Tommy’s.
Leonardo’s study of foetus development
Leonardo’s Infant anatomy that helped Leonardo paint the Virgin and Child
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, 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 and 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 and also 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 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, and 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.
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 to be 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, inherited from me and after tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).
Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur, and 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.
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.
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.
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.
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.
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
This time of year we find a little tricky because this is the week our baby Arthur was due to be born, and although we marked his official first birthday and day he died in September, I still feel a little tug that says we should be having a first birthday party for him in early January.
Grieving for Arthur I find harder and more complicated than I do for Violet as the situation is much more complex:
We never knew Arthur not properly. Yes I felt him move and kick inside me (a lot) but we never got to met him alive.
We were the ones who decided to end his life prematurely based on medical facts and delivered him early sleeping. The hardest decision we’ve ever made.
The bittersweet this is that if we hadn’t decided to lose Arthur when we did then we wouldn’t have had Aurora and she wouldn’t be here today. So that is hard to swallow – how can you feel sad about someone who led to the creation of someone else?
Anyway I saw my counselor this week and she said we should thank Arthur for giving us Aurora so tonight we will toast our little boy. She also passed me a really lovely article that was taken from a guy called GSnow’s Reddit account. Some of the original isn’t really relevant to child loss so I have edited it somewhat and also added some of my own words but you can read the full piece he wrote here.
“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating for me luckily it was my husband and we clung to each other. Some of my family and friends also floated nearby providing sustenance for us to carry on. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, seeing another young family similar to yours on the street, the sound of a baby crying. It can be just about anything…and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or a family gathering. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Occasionally the wave can come from no where and totally overwhelm you but again you rise up, gasp and breathe again.
The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.”
I started to write and plan this article before I read the sad news today about local BBC newsreader Dianne Oxberry who sadly passed away. I have lots of friends who were her friends and everyone who met her spoke fondly of her, so this article is dedicated to her friends and family. May you ride the storm of grief and find some lovely memories from the beautiful ship to cling to. If you know those close to her please help them to stay afloat. Do this through kindness and compassion.
Starting a New Year can give people much needed motivation to make changes in their lives and lots of people look to make resolutions for what they will do differently this year. This “new start” can be extra stressful and upsetting for those who have experienced child loss or indeed perhaps the loss of a different close loved one too.
The New Year marks another milestone in your personal journey of loss. Another year without them. Another year where you are a year older but they won’t age at all. Another year where you won’t hear them laugh, celebrate a birthday or just hold them again. Our loved ones are frozen in time and the changing year reminds us that the rest of the world is moving on without them.
The last 2 New Year’s were extremely difficult for us as the one thing we wanted to be able to change – to bring our children back – we just couldn’t do. The year before that we also found difficult in a different way because that was the year I nearly died in childbirth and Violet had open-heart surgery at the time we thought that was our toughest year but we had no idea what was to come!
How can you possibly have New Year’s resolutions when the one thing you want to change you simply can’t change or control ever? Instead I learnt to focus on looking at what I had learned in the past year and what if anything I could grow from. Was there anything positive I could build upon and develop for the following year? It really helped me to recognise the negative and bad things but also to then try to move away from them to focus on the good. To build on those instead.
So here in public for the first time are the things I have learnt from the last 3 years forgive the brevity with summaries as otherwise it’d be a novel…
2015 – Key experiences were getting married, father-in-law dying suddenly, difficult child-birth (both nearly died, spent weeks in hospital & Violet had open heart surgery to save her at 4 days old)
What I learnt…
Sometimes positive thinking can help to get you through.
Small can be very mighty indeed.
Science is amazing.
Even the cleverest most experienced people make mistakes.
Always trust your instincts.
Children’s heart surgeons really can be miracle workers and are near to God’s. I worship one called Mr Prem and still do.
Alder Hey hospital is amazing.
Ronald McDonald house charity is amazing.
I am very lucky to have such a close family – brother and sister the best in the world
My mum is a legend.
I made the right decision marrying my soul mate who turned out to be the best father and husband ever.
I have fantastic friends.
2016- Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.
What I learnt…
Always give back to those who have helped you – we raised £1,000 for Ronald McDonald at our wedding reception.
Travelling with a baby is amazing everyone should do it, although only visit places where you can drink the tap water until your child is old enough to know not to swallow water in showers or bath.
Your life can change in a heartbeat.
I would willingly give my life to save my child but I wasn’t given that choice.
There’s nothing more precious than family.
Sometimes doctors & specialists don’t have all the answers
All the positive thinking and prayers in the world sometimes can’t help you.
You only know your true friends when your world ends.
Child loss is a pain like nothing else.
You think you knew pain and misery before but you were wrong oh so very wrong.
My husband is the most amazing person in the world.
Focusing on helping others can help you to relieve your own pain.
Setting up fundraising can help you to try to take back some kind of control.
Knowledge really is power. It’s very hard not knowing all the answers or information or why’s
Some friends go out of their way to support you they are worth their weight in gold & others crumble by the wayside.
Family is everything.
Time is the most valuable commodity there is so make the most of every day.
Love never dies
2017 – Key experiences were a rainbow pregnancy, loss of our son through TMR, being told I probably have a genetic defect; having a hole in my heart diagnosed & then a second surprise rainbow pregnancy at the end of the year.
What I learnt…
You should value your health more than anything.
Never count your chickens before they’ve hatched or celebrate your baby before it is born.
Hope can come in many forms.
Child Bereavement UK are amazing.
Rainbows can reappear as fast as they disappear.
A dog can bring you so much joy and unconditional love when you really need it.
Child loss changes you as a person and that change is a permanent one for better or worse.
The old me died and was buried with my daughter in September 2016 no amount of trying will bring her back.
You have to put loved ones before everything else but not before your own health.
Kindness is everything.
Just because a baby is small doesn’t make it any easier to birth.
Saying goodbye to a baby you never really knew and that gave you so much hope for the future is very hard. Choosing to say goodbye early is even harder.
Distractions are invaluable.
Sometimes you can’t understand or fight genetics
You can try hard to plan things but often nature finds a way to surprise you
Pregnancy is stressful but even more so when you’ve experienced child loss
You are not alone others out there have experienced the same thing
Always stand up for those who are unable to fight.
Always do the right thing for you and other people even if it is the hardest choice
2018 – Key experiences were a successful rainbow pregnancy, finally answers in inquest from the coroner about Violet’s death, birth of our third child a baby girl, a house renovation/extension, the first Violet ball for charity & my Nan passing.
What I learnt…
Seize control of what you can control and smile and breathe with those things you can’t.
If you feel part of your life is uncontrollable then begin a new project or task you can control.
What will be will be
Go with the flow those hippies knew something
Tommy’s baby charity is amazing.
Stand up and fight for those who cannot
Sometimes the best decision isn’t the easiest
Helping to advise and support others who are also suffering in a similar way can help yourself too
Sharing is caring
Sometimes there are no answers or explanations as to why
Sometimes all you need as a listening ear and some chocolate
Caesarean sections aren’t the easy childbirth option but it was the best option for me
Breast isn’t always best when your baby has other ideas. Alive and feeding is best no matter how they are fed.
Being a mum of three when you only have one child to hold and nurse is hard.
Tiredness has a whole new meaning when you’re the mum of a new-born and have experienced child loss too
Being a new mum is difficult. Being a new mum who has watched her first child die and had to feel her second one die inside her is near impossible stress wise but at least I finally have a child who is alive and healthy
To live a long, happy, healthy life is the best we can ask for. I hope I’m as lucky as my Nan who was in her nineties.
You can see here clearly that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year. There is something constructive that comes from the most upsetting and distressing of situations if you really look closely. Remember and recognise what an achievement it is to be a survivor and what you have been through.
It is also possible to squeeze out a tiny bit of happiness from it all too. As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.” So flick that switch or light that flame even if it is on a very tiny candle your baby or babies will thank you.
If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing”.
All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?
For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.
I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.
I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.
He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.
Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job. Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.
Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?
It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.
The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.
Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end” Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?
When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.
Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child, when you have a new one you don’t throw your old one away and forget about them do you? Or you shouldn’t. If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?
I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.
I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.
I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.
The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler. That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?
I wonder what Violet would have been like today and what she’d have thought of her baby sister? Do you ever wonder what if? I do every moment of every day.