So today in 2018 was our son Arthur’s due date but he was born sleeping on 1stSeptember 2017. I don’t therefore know what you call today “a scheduled birthday that should have been”??? A Due Date Anniversary?
It feels odd being sad today because if all had gone to plan and he had been born today happy and healthy then we wouldn’t have our little girl Aurora as she was also born later on in 2018.
It is a confused situation entirely. Arthur doesn’t even legally exist as he was born sleeping at 22 weeks old so 2 weeks earlier than the legal requirement for human life however if he had drawn a breath at birth than he would have lived so then would have a birth and death certificate. He never drew breath so he has neither certificate.
Legally he never lived
Even though in the eyes of the law he didn’t exist to us he did. I felt him moving constantly inside me kicking over and over. We saw him somersaulting on scans and constantly moving even if no one else did. We knew him a little and met him whilst he was sleeping. He looked like a miniature version of my hubby with a thick head of dark brown hair. His name sits now underneath his big sisters name on their headstone at her grave. We interred his ashes with his sister Violet so she can look after her baby brother.
Their baby sister is continuing to light up our lives here living up to her name “Goddess of the Dawn” and certainly keeps us on our toes.
Rest in peace my little rocket man; keep kicking those legs making those rainbows up high.
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.
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 –
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.
Why is grief harder for a TFMR?
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?
Thank you Arthur
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.
Grief is like being Ship wrecked
“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.
At the start
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.
Some of you who read this blog, know me or just follow me on social media may be aware that my daughter Violet died at the end of September but what you might not realise is that her funeral coincided with baby loss awareness week 2016. The second anniversary of that is today.
At the start of this week in 2016 we got the news that the coroner was releasing her body so we had to finalise things with the funeral directors and to make arrangements for her funeral, including making decisions like cremation or burial. We decided to bury her because I couldn’t face the idea of my baby being burned. Crazy I know as she was dead already but I still felt as though I was protecting her little body by burying her instead. Then we had to decide where to bury her and to pick a plot.
Choosing a burial plot
We decided on southern cemetery as it was close to where we live and there are lots of important and respected people resting there. I know it seems ridiculous but I felt as though she’d be in good company alongside Elizabeth Gaskell and Anthony Wilson – if it’s good enough for them then….
I remember us visiting Southern Cemetery and one of their team taking us to show us the baby section of the cemetery. They explained there was only one of these tiny plots left beside the road going through the cemetery. It was a small plot surrounded by other little baby graves. Next to it was a communal baby grave shared by many that must have had them all stacked on top of each other as though they were on a supermarket shelf. It made me feel ill and I decided over my own dead body would she be buried here.
Investing in the future
I asked the cemetery man was there not anywhere else and he said we could have a family burial plot but that would be more expensive. I said “fine she’s not being buried at the side of a road even if I need to put it onto a credit card”. I asked him to show us what they had available. He showed us several plots and one was under a big cherry tree opposite the grave of Kirsty Howard, the amazing girl who was so brave and raised so much money for Francis House. I said that one would do. None of the plots were acceptable or perfect because my baby being dead wasn’t acceptable. Our final choice was simply the least offensive and I strangely felt comforted knowing that Kirsty would be her neighbour. I hoped being kind and compassionate that she would look after my little girl.
The funeral plan
In the middle of Baby Loss Awareness week 2016 I wrote Violet’s eulogy. I wanted to ensure her send off did her memory justice and that everyone would know exactly who she was and would understand why we loved her, as much as we did. We selected her favourite songs for her funeral, a close friend agreed to give the service for us and we thought about what she would like. I know she was only 15 months old but she had very strong opinions and preferences on things. She loved balloons so we asked everyone to bring a balloon to her service. She liked to make people smile so we arranged for all the balloons to be collected then taken to the children’s hospital and her nursery. We set up her fund in this week too for Alder Hey hospital’s cardiac surgery fund and asked people to donate to it.
The day of her funeral, the 14thOctober, was the penultimate day of baby loss week 2016. I remember it was a crisp autumn day with blue skies and sunshine, even though there had been bad weather forecast we only had high winds that day. I went through the day in a bit of a trance almost as though I was an outsider looking in and I carried the angel bear that I had been sent the day before. I cuddled and sobbed into the bear throughout the service. The bear was a gift from an amazing little charity called Heart to Heart UK that also gifts bravery bears to children undergoing heart surgery. Their gift really helped me.
Wave of Light
The day after Violet’s funeral was the last day of baby loss awareness week. All around the world people lit candles at 7pm creating a wave of light in memory of all the babies lost. We lit a candle in our empty quiet house full of sympathy flowers and cards then we cried some more and had a drink.
I decided to write about our week in 2016 because sometimes you don’t think about what parents have to go through logistically just after their baby dies. You almost forget that they have to make important decisions during this most horrendous time. Decisions about choosing a funeral director and whether to bury or cremate? What to do for a service? Whether to ask people to donate to charity and if so which one? All these things would be difficult enough if your child hadn’t just died but they have. The world as you know it has just ended. The most important person in your world has gone and you have to make these decisions.
So please join in with celebrating the end of child loss awareness week by lighting a candle at 7pm on Monday to join the wave of light. Also have a drink with us as we mark the end of the anniversary of probably one of the most difficult weeks of our lives.
Thinking of our lost babies Violet and Arthur this week but about our darling daughter today. The day we laid her to rest with music, balloons and colour just how she would have wanted.