To my darling daughter,
Never in a million years did I think that I would be writing THIS sort of letter to you. I imagined, when we found out we were expecting your sister, that I would be blogging sometime after her birth about the struggle of looking after two babies. I am sorry that I am not struggling with looking after you and your living sister, I really, really am sorry for that. Instead I am struggling between looking after you and keeping things 'normal' whilst trying so very hard to keep the memory of your sister alive within me and creating a 'new normal' for us. I am sorry that our 'normal' has changed and although you are small, I know you feel the shift too. I am sorry that there is a dullness behind my eyes. My face knows how to smile for you and my body knows how to comfort you but I am sorry that part of me has gone. Know that it has gone somewhere very special and I hope one day that you will understand that. I am sorry that sometimes I cry and it makes you come over and put a hand on my shoulder. I wish you never had to know the reason why I cry because it means that one day you will feel some of this pain too. Know that I would have done anything to protect you from a pain like this, as I would have done for your sister. I am sorry that you wont remember meeting your baby sister. I have photographs of you pointing at her and calling her 'baby' (a memory which will last with me for a lifetime) but I am sorry that for you, it will only ever be memories from photographs. Know that when I had you both in the same room together, even though it was just for such a short time, in that moment, my life was complete and I felt whole again. I am sorry that you will be known as 'the girl whose sister died.' I too now carry a title but know that I will show you to become proud of that title. I will show you to embrace the title for its better to have loved and lost than never have loved at all. My darling, I am just sorry that your sister is not here. I am sorry that the sister you were suppose to have wont be here to play with you, to annoy you and to love you in person. Know that I will help you to create memories with her, even though she isn't here. Know that she will still be a part of your life, for you DO still have a sister. Know that she loves you and that love will become a very, very special part of you. My Eleni, right now it might not seem clear why I am here but my mind is not. You might wonder where it has gone and when it will come back. It must seem strange that my heart is divided although you can't see the presence that has caused it. You are so little still. So know that we have a lifetime ahead of us to love, learn and be together. Know that I will help you as you are helping me each and every day to live. Know that I love you with all my heart. I always will. Mummy X
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People pass judgment. Even if they don't intentionally mean to do it, people judge all the time. Every day we are asking ourselves questions based on what we see or hear going on in the world around us. Would I wear that piece of clothing or act that way in a certain situation? Would I parent my child that way or talk to a colleague in that manner? Without helping what our thought processes are, we are creating the world around us from our experiences.
Some people feel bad for what judgements they have made. Some people don't. Some people learn from their judgments and therefore try to feel or act differently. But when we experience such situations ourselves, ones which we have previously judged, it changes our entire perspective. I am going to be totally honest with you. Before experiencing losing Holly, I had my own judgement's on coping with loss although I don't think I would have ever voiced them. I would like to think that I have enough sympathy to understand its not my place to say, if not enough empathy to truly understand the pain. We all have our own ideas and judgments on what we considered 'normal.' That being said, the past me must think I am very 'abnormal' right now. I had photographs taken at my baby's funeral. I have photographs of me in tears. Would the past me have passed judgement on someone having photographs at their baby's funeral? Probably. I would have probably thought it was weird and maybe even inappropriate to have photos of a funeral. But on the day that I said goodbye to my baby, on the day that went past in a blur, I am so happy that I can look at those photos and know EXACTLY how I feel, its the feeling of the extent to which my heart can love. Would I have passed judgement on someone who decided to see their baby four weeks after they had been born and after a post mortem? Maybe. I might have wondered why would you want to see your baby in that state when you can take away what memories you already have. But for me (as I must stress that there is no right or wrong) I was so relieved to see her. I am so happy that I could make more memories with her, seeing Holly again helped opened the block in brain and allowed me to acknowledge that it was okay to mourn because there she was, my beautiful little girl. She had really 'happened' and she had come back from her post mortem safe. After the blur of the previous four week it helped me to see that Holly was real. Would I have passed judgement on someone who kept hold of their babies ashes? Yes, I think so. I always imagined that it would seem odd or even a little spooky to have someones ashes in your home! But now I understand why people want to hold on, its all that you have. I picked up Holly's ashes yesterday and brought her home. She came home in a tiny box, in a paper bag. That was my baby's home coming. Do I want to let go of her ashes? It might change one day but right now not a flipping chance am I losing her again. Holly is staying with me, exactly where she should be. Would I have passed judgement on someone who openly shared their feelings and experiences on losing their baby? I'm not sure. I may have felt sorry for them that they were still struggling. I would have thought they were very brave but I may have also felt some things are best kept to themselves. This one is important for me. Whatever you read on my blogs, whatever you read on other blogs or see on the news only scratches the surface of what we feel. You may think its alot to share but for us, its not even the first chapter in the book. The depth of our feelings is eternal. What we have experienced is so monumental that words will never be enough. The experiences we do share are the ones that we don't mind others knowing for most of it we keep locked, close to out hearts like a treasure box that only we can open. What I do write, I chose to share because it helps me to cope, It helps me to talk about Holly and it helps me to know that people care. I don't blog about Holly because I am not yet 'over it' or 'still struggling' because it is something I will never get over and missing her will never stop being a struggle. We write because its all we have. Prior to having Holly I cared ALOT about what people thought of me. I didn't want to be judged or disliked, I wanted to act the way I thought people wanted me to. Having Holly has showed me that it doesn't matter what people think of you. When something so soul destroying happens, its all you can do to put one foot in front of another. You don't have time to care about what other people think. You. Just. Don't. Care. Having Holly has changed my perspective on judgment. I still think its human nature to 'pass judgment' but YOU can change what you do with those thoughts after. Grief is so personal and so individual that there is no right or wrong way about it. Nobody is 'weird' for doing whatever they do to cope and no pity needs to be given if someone 'hasn't got over it yet.' You can't get over grief. I wont stop writing about Holly. I wont stop talking about Holly. I wont stop sharing her pictures or showing how I cope because it is all HOW I cope. I wont ever judge how someone copes because its keeping them alive. Everyone has the right to not be judged so be kind, be thoughtful and let those who are grieving just keep going. They are doing the best that they can. I love looking at quotes. Anyone who follows me on instagram will see that my account is full of them. I find that quotes can explain how I am feeling when I can't quite say it myself. I guess they make me realise that I am not alone as other people must feel this way too. They bring me comfort.
I came across this quote randomly yesterday, 'You are our greatest adventure.' It made me think of Holly immediately. Little did she know the impact that she would have on the world. So many people know her and love her which brings me SO much comfort. I think back to when I went travelling. Alone, at just turned 18 and in a hotel in Bangkok. I called my mum and cried, I called my then boyfriend, I spoke to my sister and I begged to come home. I was terrified of being by myself and exploring somewhere so alien to me. My family weren't going to give up on me easily though and in a way they forced me to stay. It turned out to be the most terrifying yet amazing, soul searching 10 weeks of my life. At the time I couldn't see it but it did turn out to be an amazing adventure. I can't pretend that I will ever find Holly's adventure to be amazing. I can't say that I will ever find a positive out of this experience or acknowledge that 'things always happen for a reason.' I will ALWAYS wish that a healthy Holly was here over any other alternative given to me. I will never be able to justify what happened to her because it is simply, the greatest pain I have ever felt. But I wouldn't choose another baby over her. As painful as this is, I will never regret carrying and meeting my Holly. She has shared with me what it is to be brokenhearted but in turn she has shown me how much love I am capable of feeling. Holly has exposed my heart and opened my soul. I have changed and a piece of me has gone forever but I will never, ever, regret any of this. I already knew that adventures were suppose to have some fear in them. Otherwise how would you grow from your experience? But I've learnt as much as they bring you fear, they also open you up and change your fundamental core. My adventure with Holly wasn't suppose to happen and that did scare me. My adventure with Holly will never be over and that did scare me too. But as much as she is gone, she is here. I've got her close in my heart and the feelings and emotions she brings, come and go just as much as the tides turns. I feel her ALL the time. Just because she isn't here, it doesn't mean our adventure is over. I know this is true because I'm learning more and more about my love for her every day and the change that she is bringing on my life is constant. This adventure is scary, it is soul breaking but it is also so full of love that how can I wish to not be on this ride? After all, if it wasn't this ride then it wouldn't be my Holly and I can't imagine a life now without her. Holly Dao, you ARE my greatest adventure and I am SO glad that it is with you. I've just been to see Holly. Four weeks to the day of me last seeing her and a postmortem later, I saw my daughter.
I didn't even know 4 weeks ago that I would be able to see my baby again. I guess I thought that was it once she had gone away for her postmortem. So initially, when the funeral director mentioned us seeing her, I held back. I retreated back into myself. I wasn't sure I could go through the heartbreak of physically having to leave her little body again. To be honest, I am still not sure how I will be able to do that again. However, I got home yesterday to my husband telling me that Holly was now with the funeral director and we can see her if we wish. There was a sudden change in me. How could I not want to see the person I so lovingly long for? Knowing that Holly was only about 10 minutes away from us, how could I not see my baby girl. Every fiber of my body was yearning to be reunited with her. So we get taken into a little room, dimmed and with candles. In front of us lies our little baby in her white coffin. I glimpsed at her little face and I was terrified. I started to cry. But not because I was scared of what she would look like but more because I was scared of reality. Allowing myself to open up to what had happened. I took another look and I cried, I cried and cried because there she was. Holly was real all along. The last four weeks have been sad. Incredibly, soul crushingly hard. But I have to keep going. You carry on doing things that need to be done. I think about her almost every second but although I wish it would, the world doesn't stop for Holly and there are things that I must do. Seeing Holly today though, it brought it all back. It did really happen, she was really there and she will always be there. I am so sad for her, I am so sad for my husband and I am so sad for my eldest daughter, who will only know her through our memories but I am so happy that I saw Holly today. I saw my daughter and she is just as beautiful as she always has been. So now I am talking to you. Isn't it sad that the happiest day in the last 4 weeks is seeing my dead baby girl? It is something that no one should EVER have to do. No one should EVER have to kiss their baby goodbye for the last time and no one should EVER have to plan a funeral for someone so small. Holly died from congenital heart defects. An abnormality of the heart which occurs soon after conception. They range in severity but sadly for us, Holly had 7 of these abnormalities. Having any one of these abnormalities would have been bad for Holly but the combination of them all made it rare and lethal. Congenital heart defects are the number 1 birth defect in the UK and the number 1 cause of death from a birth defect. It kills twice as many children as cancer every year. Most often, these heart defects are found too late and this was what happened to us. For the babies that do make it, they face an uncertain life full of dangerous surgeries such as heart transplants. More awareness needs to be raised which is why we are asking for donations to the charity, ECHO -Evelina Children's Heart Organisation instead of flowers at her funeral. I never, ever in a million years imagined that this would happen to us but it did. It can happen to anyone. I will never be in a place to find a positive from this situation but I hope donating may provide us some comfort in honour of our little Holly. I have set up a just giving page in the hopes that I can do something from this awful situation. If you aren't coming to Holly's funeral, then I ask that maybe you could donate in Holly memory and all the other babies who have been affected. https://www.justgiving.com/fundraising/HollyDao?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=HollyDao&utm_campaign=pfp-share #pregnancyandinfantlossawareness Anyone who has lost a baby understands how utterly heartbreaking it is.
Two years ago I had a miscarriage and I felt feelings that I didn't think were possible. I entered a darkness because I couldn't talk to people about what had happened. I wanted to but other people simply didn't know what to say. I did find however, that so many people had experienced a pregnancy loss. 1 in 4 to be exact. How are these numbers so high and yet so little discussed on the matter? There seems to be somewhat a taboo about discussing a pregnancy that never came to be. With my little Holly, born sleeping at 25 weeks, less so of a taboo but it IS still there. Is it simply because people don't know what to say? Or is it because it hasn't happened to them that they lack the empathy needed to understand the heartbreak? This is what we have these awareness weeks and month for. Its to help those who have lost a baby to feel that they can discuss it, without fear of judgment. I think, just as importantly, its for those who don't understand how pregnancy loss can affect someone, to be able to empathise and listen. The statistics for pregnancy loss are incredibly sad. 2.6 million stillborn babies were reported last year. 1 in 4 pregnancies end in miscarriage. Everyday, on average, 11 babies are born stillborn in the UK. Stillbirth, in particular, is 15 times more likely to happen than a baby dying of cot death. The statistics are HIGH. While somethings can be done to prevent miscarriages and stillbirths occurring, some simply cannot and that's were the need for emotional awareness is just as high as the need for healthy pregnancy awareness. This month, the annual Pregnancy and Infant Loss Awareness week is being held the 9th - 15th, concluding with an international wave of light, where candles are lit, all over the world at 7pm (local time) to remember babies and support the awareness. I hope you will all share in lighting a candle, sharing this post and breaking the silence because after all, you never think it'll happen to you, until it does. Just over three weeks ago I gave birth to my wonderfully beautiful daughter, Holly Dao. Sadly, this isn't a post on the struggles of having 2 under 2. It isn't a post on my worries of having another baby with GORD. Against all expectations and all the will in the world, Holly Dao was born sleeping at just 25 weeks gestation. I hope one day to be able to share my experience on meeting Holly but I am not quite there yet. Instead I just want you to meet her. I haven't shared Holly's picture with many people. Its not that she doesn't look well because she is actually the most beautiful little baby I have ever seen but more because of the worry of what people may think of me, posting a picture of my sleeping beauty. During the last three weeks I have searched, read and cried at other ladies blogs, sharing their experiences on losing their little ones. It helps me to see that I am not alone. But maybe more importantly, its shown me that I shouldn't hide Holly away. Holly isn't my little secret, she was a fully formed little being and to hell with it, I am so bloody proud to be her mummy. Giving birth to her was single-handedly the hardest thing I have ever had to do but I still want to show her to the world. I still birthed my baby and I am still her mummy, even if she can't be here right now. Like any other baby, Holly deserves her birth announcement. So in light of it almost being October and the month for pregnancy and infant loss awareness, this is me breaking the taboo.. Holly Dao Nguyen
Born on September 7th 2016 at 14.54 and weighing 1lb 7oz It's a funny sort of thing when your life changes in a heartbeat. Not a funny that makes you laugh or even resembles some kind of joke but more the sort of funny that can't ever be explained. The funny that has no reason or belonging but more a random turn of events.
You make think that you have had your fair share of battles but then out of the blue the biggest battle you may ever face knocks at your door and you have no choice but to open it. Bang your life has changed and whatever path you take now you know nothing will ever be the same. This time last week I thought that the hardest battle I'd had was that of my daughter and her reflux. With her I entered the world of reflux and thought myself rather a pro at the topic having seen the ins and outs first hand. Not in a million years did I think that I would have to deal with some thing much worse than that and yet again enter a world that I know nothing about and one that if I am honest scares the crap out of me. A few days ago I was lying in a scanning room in London having been asked to go there by my local hospital after they were concerned about what they had seen on my baby's 20 week anomaly scan. It had been a hard few days waiting for the specialist scan and google saw a fair share of me that weekend but despite it all I clung on to that glimmer of hope that sits inside the heart of everyone of us. The London sonographer had been scanning baby's heart for a good 30 minutes and she had remained quiet throughout it all. Mine and my husbands eyes were glued to the monitor trying to figure out what it could all mean. I kept looking at the sonographers face, knowing she was deep in concentration but trying to assess every inhale, exhale and frown. The minutes slowly passed and then the consultant came to scan me. Again, another 30 minutes of pure silence apart from hearing the occasional glimpse of our baby's ever so slow heartbeat. I knew it was slow, I knew my husband knew it was slow and I'm sure as the minutes passed my grip was getting gradually tighter around his. Suddenly we told the scan was over and we needed to move rooms to discuss the findings. My legs felt like jelly and when the consultant explained that she needed to get the nurse too, I broke down, knowing that never means good news. We sat in that room for what felt like eternity, trying to focus on anything to keep myself distracted until they returned back with the news that no expecting parents ever wishes to hear, 'I have seen multiple abnormalities with your baby's heart.' In that second, when those words are spoken it changes your entire life. It changes who you are. Our lives have changed in a heartbeat. Our little fighting baby has complete heartblock. Our local hospital consultant has only seen this 4 times in her entire career and unfortunately it seems to have picked us to be the next one for her. I still don't understand it all fully but I gather it means that her atriums and ventricles sadly don't work together. This is why her heartbeats at only 60 bpm, actually slower than mine. She would need a pacemaker shortly after birth and for the rest of her life. They suspect that she also has a VSD, a hole in her heart between the two ventricles and also a pulmonary stenosis, a blockage in the artery that goes to the lung. These would most likely require open heart surgery, which of course come with their owns risks. The doctors sounded hopeful that they can help her, at this moment in time but of course they don't have a crystal ball and she may not survive pregnancy. Sadly, she also has fluid surrounding her heart, should this spread to other organs then the chance of survival is slim. The news today is that the consultant suspects this fluid will spread and my heart breaks for what this will mean. We still don't know much about it all and we still have a million questions to ask but whatever happens, it will be so hard. My heart aches with us having to take one day at a time. It aches for what my pregnancy has now become and it aches with worry, fear and frustration. Most of all it aches for this tiny person that is fighting so hard to survive inside me. She barely moves but I know she is there, heart beating slowly and just trying as best as she can. I am trying my hardest to cope and find out as much as I can about her heart. I am speaking to the people who understand having experienced this themselves but the truth is just nobody knows. The only truth I do know is that what ever happens I will find we will belong into one of two groups and quite frankly, I wish I could belong to neither. When your life changes in a heartbeat its funny because it doesn't seem real. It seems too ridiculous of a situation to be happening, something which happens to other people, not to you. I don't understand what the lesson to this life story is yet and I wish I didn't have to find out. |
Holly DaoOn the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block. Archives
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