2016. The year that SO many souls left this world. The year that saw the UK divide and shortly be followed by a division with the USA. The year that so many people want to be over. I have seen so much hate and sadness this for year. So much desire to just move into the next and 'write' this year off. I could have alot of hate for 2016 and a desire to just 'forget it' but I dont and I want to tell you why.
I feel honoured for there to have been so many souls on this earth. So many souls who touched others through their music, comedy, sport and acting. We can't prevent death but we can feel appreciative that this year, we remember the beauiful talent our world has. The beautiful souls who we are sad are gone but blessed to have been touched by their work. The souls whose legacies will be remembered and continute to inspire, truly a year of legends.
The divide within the UK and the USA has shown me how lost we all are. Regardless of anyone's political beliefs, the results this year paint a picture of anger and the despearation for people to search for something better. The results won't change and we can't force people in to a different way of thinking but we can pull together and put our differences aside. We can show the world that having a difference of an opinion is 'okay', it's what you chose to do from there on that matters. Do you chose to fight or work together to create something beautiful?
Positivity doesn't change the past and it might not change the future but I know that in a world full of alot of hate, sadness and regret, sometimes a positive mind is the only control we have. I don't want to be surrounded by a 'cloud' of 2016 when actually there is still SO much to be thankful for.
My baby died but I am happy to have met her and I wouldn't change her existence or swap her for a living baby. Out of something so hard and so destructing, I have been shown a deepness to life and the roots of where love come from. I wish Holly was here but I don't think she was ever suppose to be 'here'. My daughter was meant for other things, she was meant to spread love and share kindness. She was meant to show that life isn't a darkness and life needn't be full of hate. I will ALWAYS wish that she was here BUT she isn't. I will miss her for always, my heart will always be broken and my life always incomplete but I refuse to let the idea of a hated 2016 break me. I refuse to let her legacy die with her.
In 2016, I married my best friend, my soul mate with both of my babies present. In 2016, I met my second daughter and my heart exploded with love. In 2016, I have been surrounded by so much kindness from friends and famiy. In 2016, I watched my first daughter grow in to the most beautiful toddler. In 2016, I remember the famous souls who inspired us and the not so famous souls who inspired us too. In 2016, I chose to believe that it's what we do with a situation not the situation itself that defines us. In 2016, I feel pain but I turn it into kindness.
There is still SO much to be thankful for and so much love to be given.
Holly Dao, in 2016 you chose me to be your mummy. I am SO thankful and I wouldn't change that for the world. Thank you for showing me how to turn darkness into light and thank you for showing me that 2016 needn't be remembered with hate.
How will you remember this year?
A Holly Christmas
I have seen that so many bereaved parents often have a symbol that represents their baby. For me, one of Holly's symbols is the holly plant. It sounds silly, as its obvious that the holly plant is around at this time of year but seeing so much of it is helping me get through Christmas. When I see a holly plant I know that my Holly is with me and for that moment it makes me stop and smile. Holly is all around me right now.
The prospect of Christmas without one of your babies is unimaginable and unthinkable. There is a massive gaping hole that should be filled with the life of my little Holly. There are millions of these gaping holes where so many little lives should be this Christmas. Many of us are decorating our babies graves, buying them presents and hanging their stockings, all in a bid to try to keep them very much with us. Many of us simply can't bring ourselves to celebrate Christmas this year, so instead are simply focusing on just getting through the day.
I have always loved Christmas. It has always felt special and magical. A day to be spent with the ones you love. But the idea of spending it without one of your loved ones just adds to another surreal moment and flash of the reality that this is my life. I feel robbed that my daughter isn't here. I feel robbed that she will never experience the joy of christmas, the pure excitement, the love of family coming together and the magic of Father Christmas. This year I should be having Christmas with a very newborn baby and my toddler, not taking a visit down to Holly's 'spot' at the crematorium on Christmas morning.
I am trying to keep busy. That's part of the reason why I created the Remembrance Tree as I needed something to do for our babies, something to mother and something positive. I am so very fortunate that I have become part of (sadly) a growing community on IG who have included Holly in their Christmas's this year. Holly has literally been remembered all over the world which means just so much. She has recieved Christmas cards, taken part in balloon releases and also been on some truly wonderful gifts from special friends. It means so much to have people think of her and think of me.
I have lost the 'festive cheer' this year, it was inevitable but the love that people has shown me reminds me of why this time of year is important. It is the kindness, the consideration and the empathy which is helping me to get through it. When alot the world feels dark and Christmas feels full of 'what's the point' the love of others shows me why it is important for me. It is to keep going for my eldest and it is to keep going for my youngest, to continue Holly's legacy and hope that it reaches out to someone else struggling this Christmas.
Christmas doesn't stop when you lose a baby. I wish it would, I really wish it would but as with everything, life keeps on going. But I have realised that the support of those who love you keeps on going too. The support is quite literally holding me up, embracing me and showing me that I can get through next weekend. I am so grateful for those who have been including Holly this Christmas, it means more than I can ever explain.
I hope that when you see some holly it reminds you of my little Holly and how much love and kindness go such a very, very long way.
Three months later...
December 7th 2016. A day I had been dreading. Exactly three months to the day of our little Holly silently entering the world, we had our post mortem results appointment.
There is something quite surreal about walking back into an Antenatal clinic with no blooming baby bump or anticipation of seeing your little one on scan. In fact, the last time we were here was to have an injection put into Holly's heart, surreal is actually an understatement. I thought I would cope okay but as we turned the corner into the clinic, tears began to fall. It felt like when we turned the corner in the car at Holly's funeral to see all the people waiting for us. It is an odd feeling of needing to get there as it is so important but also a fear of reality. Luckily the waiting area had changed since we had last been and I was placed in the gynae section so that we didn't have to sit with any pregnant ladies. It was a small thing but my god it helped.
Our consultant came and got us and we sat down for what would be an hour and a half appointment. I had no idea what to expect, I just hoped and prayed that we would get some answers. We already knew that part of Holly's heart was bad due to investigations in the pregnancy finding out I carry Anti-Ro and Anti-La antibodies. Brutal little bastard antibodies which attacked her heart and had caused complete heart block. But we didn't know why the rest had happened. Part of me was hoping that something was seriously wrong with her. So seriously wrong that it would have taken the pressure off it being my body had that attacked her.
Something was seriously wrong with Holly. It was the heart block that was serious. And yet, up until that appointment I don't think I had really grasped that fact. I still hadn't realised how deadly heart block could be. I needn't had worried about anything else being wrong with her as the heart block alone was enough to kill her.
The post mortem found complete destruction of the cardiac conduction system. Holly would have never survived. Her heart would have continued to slow until one day it would have just stopped and I would have probably gone into a very quick and scary labour at home. We were too early into the pregnancy to have saved her as she wouldn't have survived being born that early. The reality is a harrowing lose/lose situation. The only comfort I have is knowing we did the right thing. We didn't prolong her weak heart struggling to pump. We let her go peacefully, comfortably and with our love.
They found that the heart muscle had started to calcify. It was dying and it was breaking down. Other structures in her heart were thickened and scarred. My antibodies had also attacked the attachment of Holly's placenta to my uterus. They too were breaking down. Our sweet Holly never really had a chance of life.
The cause was the antibodies. Something which I never knew I had. Something I wish I never knew about. It's likely that the antibodies are a mutation from an illness or even from a vaccine but as I have since been diagnosed with Sjogren's syndrome (in which they are related), god knows how long I have had them for.
The rest of Holly was perfect. Nothing genetically wrong and nothing structurally wrong. We know this because we read the entire report. The entire report which details what cells they found on what organs, how much her brain weighed and how her little ovaries had been seen. A report which hides nothing and which the details have been scarred in to my brain forever. No parent should ever have to go through this.
We talked about future pregnancies. Before having Holly, I would of had a 1-2% chance of this ever happening. 1 in 20,000. But now that it has happened I have a 20% chance of it re occuring and that is just so bloody scary. This was the 5th consultant to say that she only see's this once every 10 years and so she has referred us back to St Thomas's to see a specialist. As it is so rare and so recently discovered, the information that they have for medicine to help prevent it happening are limiting. There simply haven't yet been enough ladies to go through this for them to be able to have conclusive evidence of what may help. So far, trials have included taking steriods, which seem to show some small benefit and in America, having three weekly intravenous immunoglobulin which shows unclear results. They are the only options.
Scarily, heart block isn't picked up until between 16-24 weeks either. So any pregnancy we have won't have the 'all clear' for a long time. In all honestly, I don't believe any pregnancy can ever have the 'all clear' although I wish I had the naivety to believe so. It is incredibly scary and the fact of 20% 'odds' being in our favour give zero reassurance. After all, the odds of this happening in the first place were so incredibly slim.
Needless to say we are both exhausted from this. The last week has been hard as we try to come to terms with all this information, what it may mean for the future and of course just feeling so overwhelmingly sad for our poor Holly. The only comfort we have is knowing that we DID do the right thing but for me, it is so hard to come to terms with the fact of my immune system being the cause. Of course I didn't intend for it to happen and I know that but until your body has killed your baby it isn't really something that anyone can relate with. It is just something I will learn to live with.
I hope this post helps someone one day. I couldn't find anyone at the time of us going through the diagnosis who had been through this (which I guess means the occurance rate is true!) I had people to talk to who had lost a baby and terminated a baby but I really wanted to talk to someone who had this exact diagnosis. It is quite amazing how alone you can feel despite being surrounded in a network full of love, hope and good intentions.
We are both a little broken right now. But as with how our new life seems to go, one day soon the grief will ease its squeeze on our chests and we will be able to smile for a short time. Until then we are preparing ourselves for more appointments and more uncertanties. I am so greatful for medicine but I wish this wasn't the cause of my gratitude.
So we keep watching the clock, I know the ease will come soon.
Do you know how lucky you are?
Some days I just want to scream. I want to scream and tell people to wake the hell up. Do you know how lucky you are?
I want to scream at people to stop bitching about the NHS and maternity services. So what that you have to wait to be seen or wait to take your baby home? To BE seen. To take your BABY home. I would have given anything to take my baby home. Do you know how lucky you are?
I want to scream at people who tell me that things will be okay and that what happened with Holly won't happen again. How the hell do you know? Do you think that because the 20% odds of it happening again are in my favour that I should relax as surely it won't happen twice? You can't control what happens in the universe anymore than I can. Just because something awful happened it doesn't mean that I am then owed something good. Life doesn't work like that and I am tired of these empty promises and these positive thoughts. Positive thoughts don't do anything otherwise Holly would still be here. That's great for you if you don't understand what I mean and I truly mean that as it means you haven't felt this pain. Do you know how lucky you are to not understand this kind of pain or understand my constant fear?
I want to scream at people who take pregnancies for granted. I am happy for those who can just get pregnant and 'pop' babies out, I really am. I am happy that there are some who plan their conception purely based on what month they want their baby to be born and those who 'breeze' through pregnancy. I truly am happy but I just want to scream that IT IS NOT FAIR. If you are one of these lucky people then PLEASE dont be naive, make the most of our maternity services. Don't decline scans, self discharge because of waiting times or refuse to make use of maternity services for fear of medical intervention, it is DUMB. It does not make you a 'big' person, it does not make you clever and it does not make you a super mother. Do you know how lucky you are to have these services available in the first place? God forbid you ever end up with a pushing out your deceased child but sods law, it won't happen to you will it?
I want to scream at these utterly ridiculous arguments and belittling with regards to breastfeeding vs bottle feeding and sling wearing being best for baby etc. Who the hell cares? Just get on and be a mother to your baby. Do you know how lucky you are that you even have a baby to mother in the first place?
I want to scream as those who think they know how I should be grieving. It is my grief and nobody else's. I will do what I want and when I want. My grief is normal. If you are sick of hearing about Holly or think she isn't worthy of me being sad then please do me a favour and delete me off of your social media. Do you know how lucky you are to not understand why I do what I do?
I want to scream at everybody for just being able to carry on. For those being excited about Christmas, for those making plans and doing seemingly normal things like going out for a drink with friends. I hate the thought of Christmas, I don't feel able to make any plans and simple things are now monumentally hard for me. A lady I know was purposely avoiding me at babygroup the other week. I became one of those people to be avoided because people don't know what to say to me. It is hard enough with what I am dealing with, without others acting different around me. Do you know how lucky you are to be the person avoiding someone or be the person to struggle to find the right words rather than the person to be avoided?
I don't want people to understand this pain because then it means that you understand it all too well and I truly do appreciate people's support, despite how this blog may sound. But sometimes I can't help but be angry. People are so god damn lucky and they don't even know it. There is so much, SO much to be appreciated but yet it hardly ever is.
I am utterly exhausted, I am bitter and I am angry. I am beyond trying to sympathise with other people right now. I am self absorbed in my grief for Holly and you know what? I don't care. I know how lucky I am for my eldest daughter and I know how lucky I am to have met my youngest daughter, despite the pain that has followed. I know what matters. I know where my luck and appreciation is placed.
Do you know how lucky you are?
The Tree of Remembrance
In the middle of November I decided that I needed to actively do something this Christmas to remember Holly. I needed to do something public for her and something that would keep me busy.
I was struggling (and still am) with the prospect of facing Christmas without one of my babies and so I needed a project to keep me busy.
Since losing Holly I have become part of a community on instagram and facebook. Although I wish I never had 'met' these people I am truly thankful to have so many wonderful mamas and papas around the world who I can relate to. This Christmas I decided that I wanted to include them in a project. I wanted them ALL to be remembered and honoured. And so 'The Tree of Remembrance' project was born.
I decided that I wanted to create a Christmas tree decoration for each baby to then hang publically. I needed them to be seen by the public beacuse it is part of Holly's legacy, increasing the awareness for pregnancy loss and breaking the taboo which surrounds it.
I started searching for what decorations I could make and I put a shout out on my IG and FB pages for any parents who would like to take part. The response and love I recieved was overwhelming and spurred me on with my motivation to do something good this Christmas.
After searching different sites for 'weatherproof' Christmas decorations, I came across a beautiful page on making snowflakes out of wooden pegs. This felt just right to me, creating something beautiful out of something ordinary. The link to the page is here should anyone wish to make their own this Christmas!
My next challenge was finding somewhere to hang the decorations. Sadly, it was extremely disappointing to find that so many places wouldn't give me permission in letting me hang the decorations. I must have contacted well over 10 places to be told various reasons as to why they couldn't. I got a plain and simple 'no we cant help you' to a 'no it conflicts with those women who can't fall pregnant' (I still don't understand that one!) to a 'no we cant as then we would have to do it for everybody.' Every no I recieved was extremely saddening to me. I had 33 snowflakes to hang in total and I really was so sure someone would help. I decided not to be defeated as the constant 'no's' just encouraged me even more to help break the taboo surrounding baby loss. So I decided to just 'wing it' and I went down to my local, beautiful park today and hung them on a tree over looking the pond. We had lots of people walk past and comment on how beautiful they are and I am proud to say that many of them had tears in their eyes when they heard of the story behind the project.
I really hope that they dont get taken down too soon. We don't have permission for using the land but for the time they are there I KNOW that they will bring a lot of love, tears and hopefully encourage people to start talking when it comes to the topic of baby loss.
I also decided to set up a donation page to cover the cost of making the snowflakes waterproof with the rest of the money going to ECHO, a charity which is very close to my heart. Evelina Children's Heart Organisation (ECHO) based at Evelina Hospital, London, diagnosed Holly's poorly heart when I was 20 weeks pregnant and provided much needed love and support for the 5 weeks that we struggled on. The care and support that they provide is so very important to the parents and the children who are diagnosed with heart problems. After Holly was born I managed to raise a little over £1000 for them and I have made a promise that I will continue to support them for as long as I can. If you would like to make a donation then please follow this link, I would be so very thankful.
Now on to the important part, our babies! 33 snowflakes made to remember 34 beautiful babies. Mama's and Papa's it was an absolute HONOUR to be able to do this. Some of these babies I know so very well and some less so but I want you to know that they are all so very loved. I tried my hardest to make sure each snowflake was perfect for them. I have tried to keep families of babies together as much as possible and so you will see in the gallery that there are some groups of snowflakes together as well as all singles too.
Being able to honour your babies has given me something positive to do this Christmas. Holly isn't here for me to mother and so doing this project has really helped me in being able to 'mother' her in a different way. Thank you so very much and know tonight that our babies are playing in the remembrance tree together, swinging on its branches, watching over the ducks in the pond and gazing at the stars.
It has been an honour.
On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.