A year ago...

A year ago, you were home, in the living room amongst your toys, beside the warm fire. The house was full with your Mongolian grandparents and your arrival. You came home after staying in hospital for a month, in the neonatal unit. Mummy and daddy still have the medicine syringes and you bottles where they were in the kitchen cupboard. We can't throw them away, because they were yours. I know it feels like a dream sometimes, you were here and then you are not here anymore. Mummy visited a friend who had a baby last week and held the baby. The baby was so little, Mummy realised you were that size. Mummy needs to be careful now. Mummy feels like going and asking people with their babies to give me a chance to cuddle them for a minute. I know they are not you but I don't know why, Mummy just wants to feel the feeling again, trying to imagine what you were like. People might worry though, this desperate Mum, they wouldn't know. Why would they know. People don't know if they haven't experienced similar life experience. Mummy is lucky to have you all though, Mummy feels sorry for people who try and can't have babies. At least you were here and Mummy and Daddy had the chance to get to know you little bit. We had the chance to cuddle you, feed you, kiss you, change you, be happy and sad times with you. We had the chance to buy you a toy, a Christmas present, a stocking and clothes. Yes, we miss you dearly but we will look at the times we had with you and treasure the memories forever. Mummy's ginger haired tiny baby boy, wherever you are you are on our hearts and will be forever. Love you loads. Billy Buuz. XXXXXXXX

The songs and music we play

and miss you and find comfort are:

Philip Glass 'Truman sleeps' from the Truman Show film
'Somewhere over the Rainbow' sang by Israel "IZ" Kamakawiwoʻole
'Patience' Take That
'Say Hello Wave Goodbye' David Gray
'Summer Son' Texas
'I Would Never' The Blue Nile
'Other Side of The World' KT Tunstall
'Candy' Paulo Nutini
'Heroes' David Bowie
'Aduuchin Aaviin Huu' Ariunaa
'Around The Sun' R.E.M
'Love Will Tear Us Apart' Joy Division
'Bi Jargaltai' Sarantuya
'Eej Mini' Adarsuren
'Winter Winds' Mumford & Sons
'Theft and Wandering Around' Cocteau Twins
'Ashes to Ashes' David Bowie
'Solid Air' John Martyn
'Mad World' Michael Andrews
'Otgontenger' Batsukh
'Our House' Crosby, Still, Nash & Young
'Otriin aduuchin' Vandan Dulamsuren
'All Good Things' Nelly Furtado
'Why Does My Heart Feel So Bad' Moby
'Somewhere In My Heart' Aztec Camera
still more to come, baby...

Mummy calls your brother Billy by accident sometimes, but it's a good feeling. We love you so so much.... XXXX

Somewhere over the rainbow...

Hallo, Billy Buuz. Mummy has been well, but teary recently. Mummy is Ok in general, but has a sudden rush of feeling missing you, overwhelming. Mummy's tears are very easy to come out these days. Mummy went to a Psychic night, hoping you might 'come through' and 'talk' to me. I don't know why, but I go and hope to be in touch with you somehow. Mummy was moody because Mummy wasn't happy that you were not here. Mummy's baby boy should have been here in Mummy's arms, but we've got your clothes, books, toys and pram. Mummy turned to your daddy and said: Billy realy is gone, isn't he?! Mummy still has this feeling hoping you're there somewhere. Your daddy got 3 advent calendars for you three. Your sister's got The Simpsons, your brother's got Santa and his reindeers and yours is the one with Winnie de Pooh. Your brother opened it today and it was little chocolate Christmas tree, so he put it in front of your photo. Your sister was looking at your little nail clippers and found a tiny nail. It must be yours, so she carefully wrapped it in a little plastic bag and put it with your locks of hair in the little gray bag with blue Teddy on it. Mummy felt Mummy should have kept your last clipped nails, Mummy didn't know that it was the last time Mummy was cutting your nail. Mummy didn't think that that was it, once you were buried that was it. Mummy and Daddy held you when you died in our arms and your hands got cold last because were were holding you and the heat trapped between our hands. Mummy didn't want you to turn cold, but you got so cold like a stone the next day. When I kissed your forehead at the funeral director's Mummy realised you were gone, your body wasn't good enough for you. Mummy and daddy still go to the cemetery and light candles. Our red headed angel boy, love you loads. XXXXXXXXXX

Buuzanhuu - Billy Buuz

Mummy's been avoiding any writing recently, around your birthday. It was hard to bring myself and write about you. I know I do it more than others, but Mummy went through a strange phase, vulnerable. Today, Mummy is feeling not bad, in fact feel good that I've written half a chapter. So it was a good productive day. The newspaper article has been read by many people and now many people know about you. That's what Mummy wanted to do. It will be just a start. Mummy is going to write this book and it is done for you all, my babies. Mummy would be happy to look back. You would all know who your Mummy was and who Billy was and should not forget how life can be and help others if they are going through rough times. Nobody chooses to be disabled, nobody chooses to be unloved. Then again, sometimes you have to love yourself to get love back I guess. Many people will have different opinions, some might support us and some might not. Some people might feel that what Mummy is doing is extreme in dealing with your death. But Mummy will be happy to answer that. People need to picture themselves in our shoes. How would you feel if your own baby is gone? You will never ever going to see him or her again? You will never ever going to kiss them goodnight or hold their hands. Now... think again. Hopefully, many will understand and support us, Billy Buuz. Mummy'll take everything thrown at us, that's fine if it's what it takes just to raise awareness and help others to open themselves and feel Ok about talking about their hurt and pain. Ok, Billy Mummy'll go and pick up your smart pants brother from school. Love you, Love you, Billy. XXXXX

Troon mum writes about loss of baby son Billy - Ayrshire Post

Troon mum writes about loss of baby son Billy - Ayrshire Post

Your Birthday

Hallo baby boy. I know it looks anf feels like I'm pretending that you are not dead. But you are Mummy's baby boy and who can say it's right or wrong. Mummy was in tears and was very upset on Saturday the day before your birthday. On your birthday though - Mummy was fine. We made a milk chocolate cake. You brother wanted to make it as it had the word milk in it. He remembered you liked milk.:-) He also talked about you at school when it was the news time in his class. He said: It was my baby brother's birthday and we made a cake, put flowers and candles at the cemetery. You sister made beautiful flower arrangement in the shape of your name BILLY. She chose the flowers herself and decorated the oasis all evening. We had a candle on your cake and your brother and sister blew it out for you in front of your photo. It was a moving moment. We managed to hold our tears. I could see your sister's eyes were filling up, but she was brave. Your brother can't handle Mummy's tears, no wonder poor thing. He was asking me: What are you doing? What are you on? when I was writing on your blog with my tears running down nonstop. He gets teary himself, so Mummy stopped and comforted him and decided to do it while they are not home. They are both at school now. You daddy is working. He bought beautiful candles on your birthday and lit them at your grave. It was a calm day without any wind. The candles stayed lit all day and night. It was a clear day and night. We put your bunting outside our house to remember you and lit candles in the garden too. We went out for lunch celebrating your birthday. It was heavy emotionally, but we loved you and celebrated your birth and remembered our nice memories. The time flies, one year already. Mummy remembers you being born; and you are not here now. Mummy will make you live in people's mind and help others. Mummy's clever boy. Love you loads. XXXXXX

HAPPY BIRTHDAY BILLY BUUZ!

Happy Birthday, my Billy Billy Buuz! You would have been 1 this year.

Mummy cleaned your gravestone instead of your face
Mummy put a candle on your grave instead of a birthday cake
Mummy hugged your Teddy and wept into my pillow instead of
Mummy cuddling you and throwing you in the air with million kisses

Mummy wished you were here with me and us
Mummy washed her face after sobbing and missing you
Mummy wanted to hold you and rock you to sleep
Mummy wailed on your grave on my knees calling your name

Missing you, baby boy

Hallo hallo, Billy Buuz. Mummy missed you this week. Mummy was watching a film on TV and the missing girl came home. Mummy wished you would come home like that, but you never will. Mummy misses cuddling you, touching your tiny fingers and hands, looking at your beautiful soft face and changing you. Mummy misses everything about you and of you. Nothing will ever bring you back, Mummy even tries to dream about you and you don't come to Mummy in the dream. Mummy will wait to see you in my dream one day. Ok, Billy buuz, Mummy always gets upset when I write here, but this is good. I have you and it is the greatest thing. Mummy will make you live forever in people's mind. It's getting very close. :-) People will know who Billy buuz was, who this clever boy was. He was only 3 months old, but had the impact of lifetime in people's lives. Love you and grateful that you are Mummy's baby boy. XXXX

Love you, Billy Buuz

Hallo, baby boy. Mummy has been busy busy writing. It's a great feeling to be writing about you and Mummy's childhood. Mummy had a happy childhood. People think if someone is from Mongolia, it's a country that naked men riding horses! It's funny. Mummy wanted to share how life was and is in Mongolia. Not many people know that it's a country full of clever people as well as nutters like any other country. Mummy hoped you would come and see Mongolia one day. I know you can't physically now, but Mummy will take you there and show you in my head and book. You are Mummy's baby boy. It's so hurtful to see other Mums pushing prams with their babies. Mummy is getting better at handling my feelings, it was hard first, but now Mummy knows that you would be well known when Mummy finishes her book. People will talk about you just like anyone, because you are a symbol of many nice things. You are the voice for many people who can't talk about things because they are tied back with attitude in society, cultural barriers and blinding superstitions. Mummy is grateful that you are Mummy's boy. Mummy had hundreds of ideas before and never had the determination or guts to do anything about them. But now you sharpened Mummy, Mummy will do what I wanted to do for years influencing people in a positive way. Mummy want everyone to be happy and appreciate what they have instead of moaning about things and looking at the bad and the empty things. After all we need to start looking for nice and happy things in ourselves. Nobody can give it to us, just us, ourselves. So Mummy is spending my energy on this book for you and about you. Mummy wants to be strong for your brother, sister and Daddy. It's not that easy to keep it all the time, but Mummy will do it, because I have you. Mummy's celevr boy, watching over Mummy and with me all the time and all the way. Mummy knows nothing on earth will bring you back, but Mummy will miss you and talk about you just like any baby. Love you loads, your sniffly Mummy in her Mongolian blue deel. XXXXXXXXX

Our Billy

It has been a week or so since the last blog. Mummy has been busy with writing, asking people to proofread and help Mummy. It can be daunting sometimes because of the grammar, but Mummy loves writing. It comes out easily. Mummy doesn't know the quality, but Hey, you would be proud of Mummy, wouldn't you? Mummy has been missing you terribly last two days. I look at your picture and feel like hugging and cuddling you. It's such a shame, you are not here. Mummy tries to picture you sitting on my lap, looking around wondering what is going around you. Mummy and Daddy's friends' babies reached one this week. Mummy sent cards and little things. We were supposed to see your first birthday and more. Mummy will make a cake for your birthday and put it in front of your picture and put a slice at your grave. Your headstone is up now. It is dark green granite with silver writing. It says your names, date of birth and death, and a phrase in Mongolian 'Manai Billy Buuz Huu' meaning 'Our Billy Buuz Son'. That's how we called you. Mummy, Daddy, Granny and Granpa, we all called you like that. Mummy wants to help people through writing and give them the permission to feel happy, sad and angry. Mummy sees so many people keep their thoughts and grief to themselves, can't open it, even scared of opening the truth. Mummy feels it is healthy to talk about. Well that is if someone does not have something to regret. Some people realise the value of anything after it's gone. It's the same with people. It's better doing things for these loved ones while they are alive, not regreting afterwards. Then again it's easier said than done. Perhaps, Mummy can just help people to open up feel better through crying, talking and feeling emotions. Mummy saw a film called Eat Pray Love. It was a woman's journey in life. Interesting. People always find something to be unhappy about when life is perfect, or rather it seems perfect. We don't really know why I guess. Listen to your Mummy now. Mummy is talking to you about big grown up things. Mummy's clever boy, you are. Mummy will describe you with the best words in any language. Why? Because you are my boy, who would say that about you if your Mummy didn't. Mummy called you 'clever' when you were with us. Some people didn't like that. They said 'He would never be clever'. In Mummy's eyes, you are the most clever baby boy. Ok, Mummy'll go and write some about my childhood. Mummy is putting our story together in the book. You will live forever, in people's minds and in literture. Mummy is determined to do this for you three. You look out for Mummy and we'll get there. Billy Buuz, clever boy. Night night. XXXXX

Ginger Hair, Mongol Spots

Mummy has been writing a lot recently. It's great, it works as a therapy for Mummy. Mummy ends up in tears when writing about you. It's moving but helps Mummy to get things out of my chest. Your sister turned 12 2 days ago. We put a birthday cake for you, infront of your photos. We still visit the cemetery and light a candle every day. They had prepared the foundation for the headstone. So hopefully it will be up before your first birthday. I'm not sure how we would be on your birthday. It will be hard to accept you would have been one. You will be one, in Mummy's head. Mummy is making you live forever, writing about you and people will know who Billy was. The boy changed people, the boy who helped people to feel better, the boy who opened people's eyes. You made a lot of change already. Mummy's determined to do many things, charity work, writing, influencing people. So see you had done a lot already. My little baby boy with his ginger hair and Mongolian blue spots. Mummy's angel. Love you, Billy Buuz. XXXXXXX

Message from you...

Mummy saw a psychic today. It is not something I did before. Mummy wanted to see if it works. Mummy was in tears. The lady was telling me things about you and things you said. Mummy is happy that it felt real. I'm sure there are people out there think it might be mad. Mummy does not care. Mummy found comfort in those nice things the lady said.So you agree with Mummy and what we are doing. Mummy's got you on board now. :-) That's nice. We talk about you all the time. Your dad would say: 'Billy had blue eyes'. I think 'They were brown' and then we would look at your photos. Mummy started working in a charity book shop to get some research done for my book and to help in the community. There were children's books, lots of them. Mummy saw a book with a title included Billy in it. Mummy thought we didn't even have a chance to read a bed time story for you. Mummy could't teach you Twinkle Twinkle Little Star or Maamuu Naash ir. You are everywhere. Mummy is getting used to remembering you without getting too upset. Yesterday, when the post arrived Mummy saw some catalogues selling children's party things and 1st birthday presents. You would have been 1 year old in November. Mummy had signed up for these catalogues expecting everything to be normal. Instead, Mummy tore the magazines and put them in the bin. It hurts me that Mummy couldn't hold you and take you in your pram to meet your brother at school. Mummy sees other people with their babies and think that this would have been us. Yes, Down's syndrome, but who cares. You were my baby boy. Mummy loved you whatever you had. Mummy's ginger boy, you were too good for here. Night night, sleep well. It was nice to 'talk' to you today. Love you. XXXX

Come to my dream...

Mummy has been very busy lately, writing the book I told you about. So although I didn't write here last week, I was writing about you, Billy buuz. Mummy is finding a great comfort in writing and motivated to do this book. It's Mummy's Master's and PhD. This would be so much more worth than any degree. Mummy will have a written history for you all, my babies. It will be there written down about us, Mummy's childhood in a rural place in Mongolia, hauling water from spring, dragging sheep in both hands, milking cows at moonlight and dreaming of chewing gum. You see, you made Mummy very brave and Mummy decided to do things to make a difference for others. Although, Mummy is still finding it hard to talk about you. I do want to and I do talk about you all the time. Mummy burst into tears the other day when I started talking about different projects in hospital, trying to encourage people to donate more. The projects they were talking about were all related to you and your sister's stay in hospital. So Mummy felt emotional and felt as if we lost you yesterday. I didn't think we will get over you ever, but only can find a way to handle our feelings. Mummy still expect other babies around your age to be about 3 months all the time. I forget that they are getting older. You will always be 3 months old in Mummy's head. Mummy hopes that you are pain free now. Mummy loves you dearly. You are Mummy's good baby boy, come and visit Mummy in my dream. Miss you and love you, Billy buuz. Mummy's fairytale hero with golden chest and silver bottom. XXXX

Sunset ...continues

Mummy was going to the cemetery just around the sun was setting a few times. I didn't notice it until I got there. The sun shines through clouds, making the ray beautiful and reaching your grave and Mummy. It's such a great feeling. Mummy feels connected with you, you are saying hello to Mummy. Mummy's friends give flowers for us to put on your grave. It's so nice. Jackie, Susan and Jackie. Mummy has two friends called Jackie and your daddy calls Mummy's mobile 'jackie machine'. It's good to have friends here, because you see Mummy used to miss her family and friends in Mongolia all the time. I'm not saying I don't now, but having friends help to settle in a new country. Mummy was in Mongolia two years ago. Mummy hasn't seen her sister for two years. Mummy misses her so so so much. She is Mummy's sister who Mummy would do anything in the world. Mummy used to look after her when she was little. Yeye - your sister and brother call her. Mummy's got a 'brother' too, but he is actually Mummy's cousin. He was brought up by your granny and granpa. He is a good brother. He has his own brothers and a sister. Now he is grown up and he seems closer to his own siblings. I guess he was separated from them because they had to. Poor things, lost their parents. Mummy has a lot of cousins in Mongolia, lost the number now, it was over 30 last time when I counted. Big family in Mongolia, but a tiny one here. Mummy is so glad that this blog and you can 'listen' to me. Mummy does not have to feel judged or bad about things. Mummy couldn't say 'I miss my family in Mongolia' before because people would think I couldn't settle here and make a living. So Mummy hid that feeling shoved it to the back of my head. Mummy is upset just now, but Mummy will go on and make sure this book is done. Mummy loves you dearly and it seems this is Mummy's therapy and a focus to deal with your death. So that I can move on with my life. Love you Billy Buuz. Night night. XXXXXXXXXXX

Sunset ...

We still go to the cemetery every day. Mummy feels something is missing if we don't go. Although it is getting better because Mummy thinks you are everywhere. In the rays of sunshine, rain drops and soft light breeze. Mummy is getting carried away with writing a book in memory of you. It doesn't matter how long it takes and whoever believes in Mummy to do it. Mummy thinks this is the way Mummy's dealing with losing you and by writing a book I can make you live forever. In words, in minds and in hearts of not only us but also people who might find comfort in reading it if they are going through rough times, people who work with these vulnerable people and children who need help, support and hope. This would help them to understand what goes on people's heads when things are tough and make it easier to know why people behave in certain ways. Mummy has to continue later, your brother is not well, bye for now. Love you, Billy Buuz. XXXXX

Your brother and sister...

Mummy and daddy are little bit worried about your brother and sister. Mummy can tell that they miss you and it's very fresh in their mind how you you were and what you were like. You brother has been talking about you with his friend at school and the other boy said 'God, he died?!'. They are only 5 years old and having a conversation like that. Mummy is glad that your brother can talk about you, but it can be very hard to see his little eyes watering yet he tries to roll them disguising his feelings and shaking his head as if he is trying to be cool about it. He brought a heart shaped stone from the cemetery and said 'So that we remember Billy'. Of course we will know who you are, we will never forget you. Perhaps, your big brother is worried that we might forget about you and that's his way of remembering you, having something tangible. He put the stone beside your picture on the mantelpiece. Your sister is struggling. She can not sleep properly, worried about things. I don't think she had time to deal with her own burn shock and your death. Like your big brother her eyes start to water when she talks about you and then when it's about to turn into tears she quickly goes out of the room saying, she is going to have a shower or something else, another excuse to leave the room. Mummy feels like giving them hugs and kisses and I do sometimes, but most of the time they don't want me to feel upset. It's hard. Mummy will think and talk to your Daddy and we will look after them, we will do something or some things to help them. Your sister draws beautifully, she is excellent at art and craft. I call her 'my arty ...arty' and she laughs at me. She was surprised yesterday that someone at school said she was pretty. Mummy said 'Of course you are'. Then she said 'Of course, you would think so because you are my mum'. True. Mummy is proud of you three. Mummy spoke to the teaching assistant at your brother's school this morning. She said 'He is a lovely boy. Very polite'. Mummy felt good and made sure told your Daddy on the phone. Yes, at 5 being polite is good. It's already end of August. You died 6 months ago. 6 months on, Mummy did so many things to distract myself, not to give in to dark hole and be depressed because Mummy has your brother, sister and Daddy to think about. Your poor Daddy, didn't even have time to grieve for his mum. Mummy dreamt about your Scottish granny last night. I can't remember exactly, but she was trying not to be burden for anybody and Mummy was insisting to help. Mummy's going to write about a lot of things in the book, Mummy's childhood stuff. Ok, I'll go and do some housework. Love you, Billy Buuz. XXXX

Back to school...

Schools started today and your brother started primary and your sister started secondary school. Mummy and daddy made a huge fuss about their school ties, snacks and every little things really. Mummy was happy to see them moving on, but several times, Mummy missed you. We will never see you again, you will always be three months old in our mind. You were our baby boy, tiny little baby boy. Mummy is going to write a book in memory of you and make you live forever. Mummy liked the idea of every book published has to have a copy at the British Library. Mummy will make sure there will be one about you, telling people how you were born, what you were like and what happened. You will be an uncle in the future, and great uncle and more. So they can trace their family history through the book and read about their interesting looking great great granny and her emotions. Also it would be good for them to know themselves medically just incase. Mummy had nice news recently. Mummy's friend saw a psychic in Manchaster and she was told to pass on a message from you, saying you were looking out for us. What a nice thought. Mummy didn't really believe in that kind of thing, but now I would believe in anything if it's about you. Mummy finds comfort in believing nice things. Mummy and daddy has your William teddy bear on top of the bed, wearing one of your tiny tops and your name tag. Mummy still can't have your photo beside our bed, it's too hurtful, because Mummy can't give you a good night kiss. Mummy likes to watch the videos of you on my phone, it seems so real till it stops and I realise that moment can never happen again. Ok, baby boy, Mummy'll go and cook some 'mongolian food' as your brother and sister say. They are playing the Wii after a looong first day at school. :-) You keep watching over us and we will keep you inside forever. Till next week, bye for now, baby boy, Billy buuz. Love you dearly. XXXXXX

Butterflies

Mummy likes to think that you are everywhere and specially when I see a butterfly, I'm so glad to see it. I feel you are visiting Mummy, saying hello, letting me know you are ok, free from pain, flying up and down, paying visits to the beautiful colourful flowers, choosing which one you want to land. That's my boy, knowing what to do, not letting others making decisions for you. Daddy and Mummy are thinking of having a headtone for you, dark green granite with silver writing on it. The writing will be mixture of English and Mongolian words. You are a symbol of many nice things, relationships - personal and countries, religions and cultures. Mummy and Daddy did everything we could while you were here with us. You were scheduled to be baptised at 10am on the day you died, but the consultant who was on shift that night thought it was better to do it sooner than later because we almost lost you during the night. So we brought it forward and you were baptised at 5am in the morning, with your Mummy and Daddy and the hospital chaplain around you, in the middle of the closed curtains in the intensive care unit. Later, the chaplain managed to find a nun from the Buddhist community and we got you blessed, too. Mummy felt better having the Buddhist imput, Mummy felt complete and was ready to let you go and say my goodbye. It was very hard. We had to let you go because we loved you so much, it was harsh to keep you here with us when you were not enjoying life, depending on machines, every organ failing one after another. Yeah, that's why Mummy likes to see butterflies and hope that my baby boy is flying in the sky, pain free, waving hello to his Mummy with its beautiful wings, playing in the summer breeze, putting a smile on Mummy's face... my lovely baby boy, I love you very much. Billy Buuz XXXX

Fox superstition...

Mummy bought a wooden toy fox yesterday for you three when we were out at a local park. I forgot that in Mongolia, they put a model of a fox for a new baby. I think we were too busy worried about other things when you were born. Mummy put the fox beside the main door inside the house. So the fox would help my three babies. Mummy also got a little cotton bag with a teddy on it. When we got home, Mummy put your hair in it. Mummy wanted something special to put your hair, something Mummy felt right to keep your hair in it. Mummy went and saw a newborn baby today. Your brother and sister came with me. The baby is half Mongolian and half Scottish. Well, her daddy is a New Zealander with Scottish parents, I think. Seeing the baby girl made me miss you and think about you. Mummy's not too bad now, can hold babies and talk about you. Although your brother and sister might feel more sensitive about talking about you to other people. Mummy was watching one of the videos of you when you were in hospital. You were so lively and liked looking around, used to listen to loud noise and turn your head towards light. Mummy didn't realise that those moments would never happen again when you died. Mummy didn't realise once we buried you, that was it. I could never see you again. Ever. People say things happen for a reason. How about you dying? Was it for a reason? Was this world too harsh for you, my baby? Some people's attitude towards disability, the ignorance of understanding natural causes might have shocked and disappointed you. Today, the little baby girl's mum was very grateful for the mongolian food Mummy brought for her and the support. She texted saying God bless you. Mummy felt, it's too late to rescue my boy. Ok, Mummy'll stop before start crying. Mummy loves you very much, everywhere I go you are with me. Mummy's little baby boy. Night. XXXXXXXXXX

Mummy's little man...

Mummy wonders how you would have looked. Around now you would have been 8,9 months. Today we saw a baby who is a month older than you. He was crawling, playing, smiling and eating normal food. With you, Billy, Mummy and Daddy didn't have the fortune to do that, didn't have all that fun, tickling you and making you smile and giggle, didn't have the chance to read a story before you going to bed, didn't even have a chance to put you in a proper cot. You used to be in your pram top, basket looking top, because you were tiny and then you had to be admitted in hospital, Mummy didn't even have any opportunity to put your mongolian boots and hat. We went to Ediburgh for a couple of days, but I missed you. Mummy wanted something nice for you, but didn't know what. Mummy felt really emotional coming home in the car. Soon we'll get the headstone for your grave. Mummy and Daddy chose one a few days ago, Mummy stopped herself crying at the stonemason's. We were very quiet in the car, probably going through similar thoughts, missing you, wishing you were here with us. Mummy tries to be optimistic and motivated, but sometimes I feel I'm trying to keep busy and painting this picture of myself coping ok over my true emotions. Now, Mummy's tears are rolling down my cheeks and it's good in a way that I can let it go and it doesn't come out in other ways, like anger or feeling down and affecting others around me. Mummy's little star, bright little button, toughest little baby boy you are. Mummy wishes there was something, anything that I could do to bring you back. I love you and I'm sorry Mummy's crying, blocked up and missing you. Mummy'll go and light a candle for you little boy. Wherever you are, that's Mummy's good boy. Love you, baby. Billy Buuz. Night night. XXXXXXXXXXXXXXX

Keeping busy

Mummy hasn't written here for almost 2 weeks. It has been hectic recently, but in a good way. Mummy is trying to be involved in many things, keeping busy and motivated. I miss you, but Mummy is finding strength in that you are no longer in pain and you are in a safe place. Your sister made a beautiful flower arrangement for you today, she went and bought individual flowers with her pocket money and made it. She is so creative and artisitc. Mummy talks about you a lot, any opportunity Mummy talks about you. Sometimes, I feel the safest place for you was in Mummy's tummy. At least Mummy feels that way and it's a nice thought knowing that Mummy carried you to the best she could and looked after you, fought for you, protected you and did everything on earth there was to do. Mummy used to think 'Not my baby, everything is fine, should be fine', taking things for granted, not knowing anything can happen to anybody. Since you passed away, life seems short and Mummy is trying to make the most of it. Yes, Mummy will write about you, talk about you and make sure people know who you were and how wonderful perfect and clever baby you were in your own way. We lit a candle outside the house for you today, didn't go to the cemetery. The car was getting fixed and then Mummy went to teach. Mummy feels ok about not going today. Not sure why, but feels alright to do so, perhaps you are here with me anyway, everywhere we go you are there because you are in our mind, you are within us. Yeah, my baby baby boy you are Mummy's angel. Night night, love you baby boy, Billy Buuz. XXXXXX

Your names...

Mummy added a name on your other names just before you died. You were named after your Mongolian papa and your Scottish ancestors. The added name is Sanchir, it means Saturn in Tibetan. Mummy gave you this name, so that you will be bright in the sky and also because you were born on a Saturday. In Mongolian tradition, they don't name babies after a living person, they think the name will be too heavy to carry and the baby might face difficulties. On the other hand and on the other side of earth in Scotland, it's a tradition to be named after their fathers, mothers and relatives no matter if they are living or not. Mummy and Daddy thought it would be nice to have our boys named after our dads, your brother has your Irish/Scottish papa's name and you had your Mongolian papa's name. Perhaps, I wonder, I should have followed the Mongolian tradition? Then again there is a saying 'When you are in Rome do as the Romans do'. Well, now here in Scotland, you are buried, Mummy's flesh and blood is buried here. So Mummy feels my roots are planted here. So Mummy will make the most of what we have here and live life to the full. I miss you, I was looking at the photo of my three babies, you with your brother and sister. You look like a doll on your sister's lap. Mummy remembers how light you were, your sister loved holding you. She used to come home running from school to see you and give you kisses and cuddle you. She still sleeps cuddling your tiny baby suits. Mummy gave a block of your hair to your sister. Mummy was asking questions from your sister the other day and asked 'What 3 things would you take in case of a fire?' She said 'Passports, money and Billy's hair'. Mummy's glad that your brother and sister talk about you. They even made a character on the Wii called Billy. It's funny hearing them racing on the Wii and shouting 'Go Billy, Go'. It's nice to have you around like that. Also people address us including your name in the letters and cards. We are choosing your headstone and Daddy has been going to places to see the different types. Daddy printed off a sample and we stared at it and then we hugged each other with tears in our eyes. We didn't expect to prepare your headstone, we expected to hold your hands and walk down the street, we expected to see your smiles, your first tooth, first words and tantrums, not writing your name on a headstone. When we buried you, Mummy put you in your brother's mongolian deel, it's a brown silk deel that your granny made. I also dressed you in the top says 'My sister loves me', Mummy put your dummy beside you, too. You loved your dummy, Mummy hoped that it might strengthen your muscles in your mouth and help with your speech. Perhaps, it didn't help you, it might have taken all your energy and made you lose weight. Not sure, so many things that Mummy thinks, may be this may be that. Ok, Mummy'll go to bed and try to dream about you and see you. Night night. Billy Buuz, baby boy. XXXXXXX

The poems that give Mummy great strength written by your sister...

My Mum

My Mum is the one who makes the sun rise
The one who does great things no matter how big a size
Her love has the power of a million shooting stars
She can go faster than any of the cars

She smells sweeter than the sweetest rose in the world
She is the one who makes the galaxy whirl and whirl
My Mum is the pretty and amazing grace
She can make the most perfect meals you can't resist to taste

My love for her is enough to go up and down to Pluto million times
When she walks it sounds like the London chimes
The word Love is not enough to describe how I feel
Just one kiss can make anything heal
That's my Mum, That's my Mum.

Another one (2 years ago):

My Mum
My Mum is orange
She is the golden sun
She is the £10000 dress
and a smooth soft bed
She is america's top model
She is a juicy peach
I love my mum

Light at the end of the tunnel?

Today, Mummy is feeling not bad, but whenever Mummy talk about you or remember you or miss you the feeling is always there, never gets less hurtful. Mummy remembers Daddy talking about someone asking him if things are better now and if we see the light at the end of the tunnel. Well, I think your daddy and I both agree that time doesn't make you less dead or the fact that you were our baby boy. It's still the same. we can not just forget that and 'get on with our life'. Some people seem to think it is for the better because you would have had so much problems and difficulties. Well, Mummy was very angry and said that it did not matter at the end of the day you were our baby and you are not here any more. Mummy did not want anyone ever say that again about your disability and the way you were. Mummy had a sobbing cry today at your grave. I know and remember the poem that you are not there, you are in the morning rush, you are in the sun rays. Mummy held the little ornament of a blue eyed boy with red hair and cried missing you, kissing the ornament and thinking the time we had with you was just not enough. Mummy feels like digging the ground and bring you out from there and give you million kisses and cuddles. Of course, Mummy can't do that, shouldn't do that. Even I did that you weren't be there, you will be somewhere else. Mummy had a comforting thought that Mummy will see you when it's my time. I wonder what's after death, it would be nice if there was a life that we could meet again. Mummy and daddy couldn't beleive what we were hearing when we were told that you had Down's syndrome. Mummy was angry with the doctor who said there were signs of Down's syndrome, Mummy even almost hated her for bringing that news. Mummy now understand she was just doing her job, she was nice when Mummy got to know her little bit. It wasn't her fault, Mummy hurt badly and did not want to accept that news. Your sister wrote a poem for Mummy and your Daddy brought your brother and sister's photo for me in the hospital. Mummy got such a big strength from the photo and the poem. The matron of the ward said 'You changed just one day, totally different person you became'. Well, yes Mummy got in touch with this nice lady who had a 5 year old boy with Downs and she texted me saying that she remembered promising to herself to pass a day without crying. That text message was very powerful. Mummy got up and showered and held her head high, put my make up on and did my hair and went to see you in High Dependency Unit. Mummy expressed milk to give you through the tube, Mummy wanted to give you everything, everything Mummy could offer. Mummy got out of hospital after 5 days and went back and forth to the hospital to see you with Daddy, your granny and papa in turns. Mummy couldn't drive because of the ceasarian section wound. Jackie was there, too. She gave Mummy lift back and forth. One day Mummy took a bus which was empty almost, one other passenger. Mummy had bottles of expressed milk in her hands and waiting for the bus in cold windy rain. It was a cold winter with a lot of snow, tough all around the world. There were times, Mummy felt 'special'. One of Mummy's friends said 'I heard Billy had Down's and thought he was a lucky boy to have a Mummy like you, you are strong and resourceful'. Well, it wasn't enough, was it. Mummy remembers that in hospital just after you were born, this woman came into the room and asked if she could show me how to breastfeed. Mummy was so annoyed and said 'No, I don't want it, I don't even know if my baby is going to survive'. Poor woman left quickly feeling bad for asking the question. It was so scary and not knowing what to do, what to expect and who to turn to. All the nurses and doctors and cleaners were really nice in the maternity hospital. It's a beautiful world, but how can it be so harsh?! Love you Billy Buuz, Billy Billy Buuz. XXXXX

Your bib...

Mummy used one of her bags that not used for a while. Then in the small pocket, I found your tiny bib. The bib says 'Mummy loves me' and with a little giraffe on it. That hit Mummy very hard emotionally. We must have taken that bag with us when we went somewhere with you, propbably to a hospital or a GP. We only went out once with you for lunch during the time you were home. Most of the time it was this GP, that specialist, this hospital or the other big hospital. It was nice to take you out and about before you were admitted to hospital to get a feeding tube. After the feeding tube was put, things went more and more difficult. You needed oxygen, tiny little bit of oxygen that you couldn't come home, you had to stay in hospital. While you were in hospital you got a cough which turned into a chest infection. Mummy and Daddy couldn't bring you home when you were ready to go home because your big sister was in a different hospital getting a skin graft done. We had to ask the hospital to keep you one more night and then we took you home the next day on our way back from the other hospital where your sister was. We picked up your brother who was with Mummy's best, the best friend Jackie. She has been a rock all along, we called her in the middle of the night, we dropped your brother or your sister or both of them off at theirs any time didn't matter what time of the day. She was always there for us. Of course, we couldn't have done it without Jackie's husband's support either. They were there every time. We can't thank them enough. Doesn't matter how many times say the words 'Thank you', it's not enough to express how we feel. Your brother seems to think a lot of things. Mummy emptied your Granny's and found some of your Daddy's toys when he was little. A few cars in a little bag. So Mummy gave it to your brother and he took them out and then put them back. After that he said: Mummy, do you think you might have a different baby when I'm 10 or something?' Mummy said 'Pardon?', trying to clarify exactly what he is meaning. He said 'You know, from your tummy, will you have a different baby when I'm 10 or something'. Mummy said 'Not sure, we'll see'. Mummy and Daddy is scared now to even talk about a baby, may be some time later, after a few years, even just to talk about babies in general. Mummy is probably offending some of her friends who had babies, not going and seeing the babies or sending presents. Mummy found it difficult to even look at baby things, Mummy looks away quickly in shops if baby things are there as if they are there to remind you. Ok, Mummy'll go and get ready. Today is your sister's last day at Primary school, will go to the church and see her with your brother. It was his last day at nursery yesterday, he can't wait to go to school. Mummy's glad he had a very good teacher in nursery who helped a lot, making sure he was ready to go to school, giving him a positive experience and taste of what nursery is. Will go and light a candle at your grave as usual. Love you loads, Billy Buuz. XXXXX

Angry, empty and sad...

Mummy used to feel you around with everything, but yesterday I felt I couldn't feel you anywhere, you were gone and I felt empty. Mummy was putting the washing out and then started lying down on the bench, gradually my tears came out and dripping on the bench. It was sunny and Saturday, we all had a nice time home. Mummy went to empty and clean your Granny's house and missed her too. Mummy is doing it for her not other people. She would have wanted her house nice and tidy even after she is gone. Mummy and Daddy didn't want other strangers going through her things although it would have probably been easier to have people around and get everything done. Mummy went to the cemetery in the evening even though your Daddy and brother had been there already in the morning. Mummy watered the flowers, cleared up the dead flowers and stayed there for a while. Mummy used to worry about having any plants or flowers after you died. I didn't want anything else to die because even a petal of a flower was hard to see because it died. It reminded me of you dying. Today it's Fathers' day, your Daddy don't want to make it special this year, we'll go to the cemetery and might go out for lunch. I know it was hard for Mummy on Mothers' day, you were missing. Your sister made 5 models with clay. 5 of us. You are sitting on Mummy's lap. Your Daddy's glasses and beard look funny. She put every little detail in there. I'll continue later, Daddy's coming down...

Mummy is struggling...

Mummy's struggling today, can not stop crying, you are my baby boy, Mummy's angry that it happened, sad that you are gone, frustrated that there is nothing nothing in the world would bring you back. Your sister asked the other day: Mummy what would you do if you had a power for one impossible thing to be possible.' Mummy was saying 'Not sure' without thinking much while cooking. Then she said 'Remember, you would want Billy to come back, wouldn't you? You said that before'. Mummy felt bad and said 'Of course, I would bring Billy back'. If only there was something like that existed. The sun is shining and Mummy is still feeling rubbish inside, I don't think people would know or understand how it's like to lose a child if they haven't experienced it themselves. Sometimes, Mummy look at some people treating their children as a burden and think 'You don't know how lucky you are'. Mummy's golden chested silver bottomed baby boy, you are. When you were born, Mummy expected you to be on Mummy's chest beside Mummy and Daddy, but you were taken to the Special care, couldn't even see your face properly as Mummy was on the operating table. Then we didn't know what was going on for two, three hours, nothing, nobody came and told anything. The waiting time felt like a century, who would have thought this kind of waiting would become normal for you and us, waiting for test results, waiting for doctors and consultants to come and talk to us, tell us what's happening, what is working not working, and then the news, most of them were news we didn't want and we dreaded to hear. One tiny chromosome, who would have thought it had such power to destroy so much physically and emotionally. I remember when the doctors and nurses told us that there was no hope for you, the future looked very slim in surviving. They took us into this room, well they thought it's better to hear the news in a room with windows. Wonder it was for them or for us. Mummy and daddy didn't notice it anyway. Mummy was trying to be strong and asking questions and writing down, trying not to cry, biting my lips and squeezing the top of the pen, shaking inside, falling apart gradually. Your Daddy started sobbing holding his head and then the doctors left us to have a moment to ourselves. Mummy and Daddy held each other and cried, sobbed and comforted. Life was not fair. You died the next day. The world was mourning with us, it was snowy, windy, wet and cold. Your Daddy said it would make us angry if it was sunny. Mummy'll go now, get myself sorted and take your brother out. He was concerned that Mummy had tears. Mummy doesn't show much tears to your brother and sister, but occasionally like today they see it. I guess it's ok to show them that I miss you, so that they can feel they can do the same. Bye for now, my baby Buuz. Love you XXX

I miss you so much

Mummy is missing you so so much

I see a child with red hair and I miss you
I see a child in a wheelchair and I miss you
I see your little toys and I miss you
I see your tiny clothes and I miss you

I remember you looking around and I miss you
I remember you sleeping beside me and I miss you
I remember holding and feeding you and I miss you
I remember changing your tiny nappies and I miss you

I hear babies laughing and I miss you
I hear babies crying and I miss you
I hear your brother and sister talking about you and I miss you
I hear your daddy talking about you and I miss you

I go to your grave and I miss you
I go to the church your funeral was and I miss you
I go and see friends with babies and I miss you
I go and have fun but stiil I miss you

I love you, my Billy Buuz
I miss you my Billy Buuz
Why are you not here with me?
What have we done to be apart like this?
I miss you so so so much.

Well done to the Nursery and parents

It was a great news to know that the total of Bear Hunt and the toy stall came to incredible £851.13. The nursery staff were excellent in organising the Bear Hunt and the toy stall. We are so pleased about everyone's effort. Yorkhill Foundation will send a certificate and the nursery can display it proudly. They deserve it. Mummy is just back from the cemetery. We go every day, most days twice because your Daddy goes there after work. We light candles for you and water the flowers. It's nice to have a place to go to, to be with you, to think about you, to remember you, to miss you and to cry sometimes. Your brother spots cemeteries now wherever we go. It's sad but at the same time trying to make it normal to talk about you and be nice to people with disabilities. Yesterday me and your brother went to the beach to practise his sports day, Mummy was the person who goes: On your marks, Get set, Go. While we were there two minibuses came and there were children with disability and their teacher/helpers came too. They came from the other side of Glasgow, so it must have taken at least an hour to get here. Your brother usually pulls me to get away from people in wheelchairs or children might look a bit different in their looks because of their conditions or illness. Yesterday, he was fine, he said 'Mummy, Billy would have been like these children. We would have come to the beach with Billy like this, wouldn't we?' Mummy was happy that he was talking about you and also happy that he is getting used to people with disabilities. Mummy noticed his reaction before and used to say 'Billy probably would have been like these people. They are lucky, going for a walk with their Mummy, Daddy, brother and sister. You can't choose how you look or what illness you have, everyone is different.' So it must have helped. Your brother and sister both had inductions for their schools this week, both enjoyed their time. So that's good. Your sister is asking what we'll have for dinner. So Mummy'll continue later. Love you forever, Billy Buuz, Billy Billy Buuz. XXXX

Have to continue...

Mummy felt that I can stop writing the blog here and get on, but it was incredibly hard not to write here. It was almost like another grief, Mummy was struggling to find words to describe how I was feeling. I felt like a glass that is shattered into million pieces and ready to collapse with a tiny bit of touch. Mummy felt like falling down on my knees and have a loud sobbing cry, felt my chest getting tight and needed big deep breaths. So Mummy is just going to write here as before and get things out of my chest. So that it doesn't make Mummy feel down too much.
Your brother's nursery did well, they raised £560 already from the Bear Hunt and we are waiting to get the amount from the toy stall and the cans. This morning, you brother and I took them to Yorkhill. We asked if it could go to the Intensive care unit for more toys there. When you were really poorly, they didn't have enough toys and Mummy and Daddy were really upset that even before you died we wanted you to listen to children's music at least. You were kept asleep, so you couldn't really see things anyway, so it would have been nice to have something to listen to. One of the cardiac nurses got you a nice toy from her ward, which was nice. Mummy and Daddy think about you a lot. We got a card today for all of us including you, so Mummy's pleased that people remember you. Perhaps they noticed we sign their cards with your name. Mummy'll go now and see your brother's nursery concert, Mummy will thank everyone for their effort and the donation for Yorkhill there. They did well. Love you, Billy Buuz. X

Goodbye Billy Buuz

Mummy had a dream last night and realised I have to let you go. Mummy was clinging on, not letting you go and could not accept that you are not going to read this. Again just like we had to let go your body, Mummy now has to let go your spirit. Mummy can not depart from you, even though this blog is Mummy's and created it for you, Mummy feels as if it is something I can't let go easily. Mummy will never forget you my baby, you came for a very short time and left us tragically. Mummy's got a hole inside that nobody can ever fix or nothing can mend even tiny bit of it. Mummy will wish every baby to be happy with their Mummy not departing like us. Mummy is so so sorry that Mummy was not able to keep you safe and healthy. I know it was nobody's fault, but Mummy feels I could have done this or that or keep thinking what if...
I think Mummy has to accept now, we will need to get a headstone for your grave and perhaps that represents that we accept that you died. The word 'died' - Mummy could not use it until now, I was using words like 'passed away' or 'not with us any more'. Mummy will write about you, but Mummy is going to address it to others. This blog was for you and Mummy will finish writing here hoping that it would help you to go to heaven without having to worry about Mummy clinging on. You go my baby, go to heaven because you never did or think anything bad to deserve to go elsewhere. Mummy will pray for you and will keep doing things for charities and write in memory of you. I love you forever, goodbye Billy Buuz. XXXXXXXXXXXXXXXXXXXXXXXXXX

Mummy's birthday

It's been a week since the last blog message. A lot happened. Your brother's nursery organised the Bear Hunt which was excellent. 70 seat bus went in the morning and afternoon to a park and the kids went looking for animals and 'hunting' for the bear. The nursery and the school have been great at helping and putting everything together supporting it all. Another nice thing happened this week was Mummy and Daddy went to New York. Mummy was very excited to go to that continent for the first time. We went on a cruise on river Hudson, saw the sunset above the skyscrapers, went to the UN building and Daddy took Mummy to Mamma Mia in Broadway! I don't think your Daddy would have gone to it, but Mummy wanted the real experience and it was fantastic. Today is Mummy's birthday and we just back, it has been a very long day. This morning we went to the UN building and now we home and Mummy was in a hurry to write here. Mummy came home via the cemetery and lit candles for you, my red headed baby. Mummy almost lost control crying on the plane when we landed, Mummy missed you and had to control myself not to cry. It was a very nice break for Mummy and Daddy but we talked about you and missed you. Your brother and sister were good and behaved themselves with our friends while we were away. Well, to a certain extent. Mummy's friend in rural Mongolia phoned to say Happy Birthday to me and said 'so you are a mother of three now, how are you getting on?'. Mummy didn't realise she didn't know, Mummy lost track of who knows what these days. So Mummy said 'Yes, I had a boy and unfortunately he died'. I couldn't say anything else and I don't think she expected to hear that. She said 'Oh, I didn't know, I assumed good things and never thought about that kind of things. I'm sorry'. Mummy used to call her time to time, but I guess we were busy last few months. She lives in a place called Toson and is one of the coldest place in Mongolia reaching -50'C in winter. Mummy thought it's fair if she called me once in a while because it was me mostly the one who calls. Anyway, Mummy knows how things can be in the countryside, so it doesn't matter our friendship continues and we know that we are there for each other even though we speak to each other once in six months or a year. Mummy had a happy childhood, grew up in a traditional Mongolian round house with my parents and sister. Mummy loved sweeping snow from the top of the ger early in the mornings. You could see who got up already because of the smoke coming out of the chimneys. Mummy secretly used to compete with the neighbours' girls, trying to be the first one already up. In the summer, it was milking the cows first. So we used to get up before the sunrise and milk the cows, make yogurt and clean the house and have a nap in the afternoons sometimes. Mummy memorised English words, read books and played card and board games while looking after sheep and goats in mountains and the deserty parts of western Mongolia. We used to walk all day first and then Mummy learnt to ride a horse. So it was great, Mummy loved galloping and your great grandfather told me once with a smile on his face (clearly he was proud that I was brave enough galloping on a horseback): My daughter, you need to careful when passing neighbours' houses, people will talk about you that you didn't consider others'.
Mummy thought I would take you to these places when you are older and tell you all these stories. Mummy will write them here, so you know all about Mummy's childhood background, completely different from how you and your brother and sister's. Mummy would't have been here if I didn't meet your Daddy. He is a brave man, marrying Mummy (;-)) He is Mummy's other half as they say here, better half(don't tell him that though). Ok, baby boy Mummy'll go to bed now, was a long day, started in New York, jet lagged Mummy should sleep straight away. Nice to be home, nice to be near you and see your brother and sister. Love you all, my babies. X

Daddy's birthday

I know your Daddy doesn't like it when Mummy refers to him as Daddy. I'm sure he would be ok today though. Today's Daddy's birthday and we had a nice lunch out while your brother and sister were at school. We went to bed quite late last night and Mummy went out to get the washing in and saw only one star in the cloudy sky. Mummy started to cry because I thought it was you looking at Mummy and kept Mummy's company in the dark. One of Mummy's friends call you 'My wee star'. So just like everything else I saw you in that star. Mummy held a baby last week for the first time after you passed away. That girl is about the same age as you and Mummy couldn't control my tears and had to give her back. Last time, it was you and Mummy and Daddy held you untill you got cold and more after you died. You died three o'clock in the afternoon and we held you in turns till half six. Mummy cleaned your face and body with the nurse who was very nice. Having so many things attached to you made your skin all sticky and you looked so perfect when you didn't have anything on your face and body. Mummy wrapped you in the nice blanket that I bought before you were born and immediately held you against my chest and had a sobbing cry. Mummy didn't expect to hold you dead like that, it shouldn't have happened, you are supposed to outlive your Mummy and Daddy, but not this way. Mummy remembers going into the funeral directors the next day and said 'I'm here to arrange my baby's funeral' and burst into crying. Your Daddy was just behind me coming in after parking the car. Today, Mummy felt sad that you couldn't celebrate Daddy's birthday, but you are here with us all the time. Your sister signed the card from the three of you including you. So, you see, you are here but not physically. Your brother's nursery is doing the bear hunt on Wednesday. We got some nice things for the kids. So that they can have fun and we can raise some money for Yorkhill. Hope this will help with other families to be happier together and make their life even tiny bit easier. We are so grateful to everyone who were and are there for us and you. Some people say you might not want people around you etc, but Mummy does. The thing is these people were there for us when we needed them, why should I not want them now. I know people might want to give me some space etc, but I am a strong enough person to say 'no' if I don't feel like it. Anyway, Mummy'll go and do some work now, will go and light a candle at your grave on the way home. X

Mummy's secret...

Mummy is doing ok and coping well according to people. Sure, Mummy is not showing her tears or getting too upset in front of people. Mummy has this blog to get everything out of my chest, and cry while writing. So it is helping Mummy to be stronger for your Daddy, brother and sister. Mummy tries to look good, so that it helps how Mummy feels inside. You wouldn't have wanted Mummy crying all the time, you would have been happy if your Mummy looked nice just like your brother and sister. Your sister said once when she was little 'You are beautiful, Mummy. You have nice white teeth and no wrinkles'. :-)
It made Mummy laugh, I don't know if she can say that now though. Now Mummy's got wrinkles, deep ones since you died. Mummy's grateful in a strange way that you were born through section. I have the scar and it makes me feel you left your mark on Mummy and it's nice. When I miss you I touch it, it was your entrance to the world, to the strange big world. You didn't stay long, yet had a very hard time. Perhaps, some people would never experience what you and us all went through. I hope fewer people do. I wouldn't want it to anyone, but life is life we never know what's around the corner.
Mummy and Daddy keep your things in our room, your pram, clothes, toys and bath. Your Daddy said we will keep them for years. Some people think Mummy and Daddy can still have another baby. Some people think another baby would replace you. Well, nobody will ever replace you, you are our Billy and you have your own place and space in our hearts and souls. It was very hard for Mummy and Daddy to keep you alive for our sake just before you died, it was not fair to you. You had two feeding tubes in one side of your nose and a ventilator on the other. You had a catheter and a draining tube coming out of your tummy. You were only tiny and yet had so much to put up with. You were a very brave boy and I'm sorry that we lost you and we miss you badly. Oh, Mummy just heard a little birdie outside. Perhaps, you sent a message not to cry. Your brother's footsteps on the stairs coming up. So Mummy will pretend Mummy's just blowing her nose. Your brother has been a good boy and your sister has been a good big sister as usual. So Mummy'll go and spend some time with them now. Mummy's Buuz, you are. I called you 'buuz' which means a dumpling in Mongolian. Mummy made some for your funeral with your Papa. People liked them. Of course, Mummy put one in your coffin and your sister made one with clay and put it in there too. Love you, Buuz. X

Up and down

Mummy couldn't sleep well last night. I wish I could see you in my dreams. I saw you only once in my dream and you were about to walk and couldn't see mummy because mummy was just behind you. Then mummy woke up before seeing your face, your eyes. I wished I didn't wake up then, wanted to see you just one more time. When you were born, you were daignosed with Down's syndrome and it was a big shock to all of us. It didn't mean we didn't love you, we were not prepared for that news, that's all. It was hard and mummy felt like defending you and protecting you from people. I know they were just themselves didn't know what to do or say. Mummy still preferred to have cards saying 'Congratulations' or 'New Baby' because some people sent cards with messages saying how sorry they were to hear the news. I know they were being nice, but you were a new baby first and foremost. Mummy felt like taking you somewhere that nobody can treat you differently and promised to myself that I would do everything I could do and didn't matter what I had to go through. I remember one or two people said 'Perhaps people weren't notice Billy has Down's syndrome because of your background'. What an earth made them think like that? Is it because the term 'Mongoliod' supposed to be related to Mongolian nationality?! I don't think so, I am prepared to put up with a lot, but not an insult. Not all my kids look like as if they have Downs. Mummy took all sort of things from people when you were in hospital. In Yorkhill, this sister said mummy's name wasn't Scottish enough. Do you know what? Mummy did not care, but it made mummy angry when she overdosed your medicine by mistake. Sure, everyone makes a mistake, but not like this one. She was a two faced person, she was so nice to mummy when there were others around, but she was not when it was just her, me and you. Mummy thought as long as you were ok, it didn't matter how I was treated. The next day, you ended up in the intensive care. What a coincidence, eh?! Mummy will see how things are. At the end of the day, mummy will go miles and miles for her babies doesn't matter how they look and where they are, alive or dead. You are mummy's baby and mummy will do what I think is right. Just now, Mummy's too upset, so I'll continue later. Love you. X

Feels as if it's a dream...

People say to us 'You've been through the mill'. Yes, that is actually exactly how it felt like and now we are exhausted emotionally, shocked that you are gone and have to accept you are not coming back. You are not coming back. Mummy experienced the tears cutting my cheeks when you died, I felt this stinging feeling in my cheeks and really deeply understood how it happens and why it happens. Mummy knew now that these expressions exist because other people went through similar experience. Mummy feels very old after you've gone, it seems life is so short and you have to make the most of it. Life is a strange thing. Mummy used to beleive in karma, but now I can't tell you I do any more. All mummy did or does is wish people good and to be happy, I can't think of anything to deserve to get my baby taken away from me. Carrying you for months and picturing you playing at the beach putting sand in your eyes or rescuing your ice cream from midges, picking up the leftover food from the carpet and of course winding your brother and sister up, too. Your sister said ' Mum, you can't do what you were going to do now. You wanted three children in each stage of their lives, one in secondary, one in primary and one at toddler's'. Then she cried, perhaps mummy shouldn't have talked about you like that, because mummy can't take you to toddlers' group now. We will have to get on with what we have now and thinking of the future with you but in a different way. People ask 'how many children have you got?'. Mummy is finding it very difficult to answer, but mummy says 'three' which is true. It feels like strumming a vulnerable string inside me every time when someone asks a question which I'm not prepared for. Mummy is happy to talk about you, all day and night and more. It's just the unpreparedness makes it difficult sometimes. I'm so glad that Mummy's got this blog here, I can just write and write and write without having to worry about offending people, putting pressure on them to feel sorry for us, or fix anything. It is just mummy being mummy and decided to talk about it instead of hiding my feelings and pretend that I'm doing well or not doing well. This is your mummy and you changed mummy for the better and stronger person, mummy is so grateful that you were born to be my baby because you gave me the biggest present in life - to embrace life and enjoy it. Love you, your snuffly mummy X

Trying to get on with life ...

Mummy was feeling uneasy today, didn't have much motivation to do things, but at the end of the day it was not too bad. It's nice to see friends and Mummy just talks about you a lot, I'm sure people hear me saying the same things again and again. Mummy is kind of fed up with people saying: You are having such a hard time, it must be difficult for you. Of course it is difficult, but we don't need anyone highlighting how bad our life is. At the same time, when people say 'We are very happy' about themselves, Mummy is glad they are doing well and happy, but wonder if they couldn't grade their language a bit especially when they know that we are not that happy at the moment. Mummy is ranting a bit here today, but this is for that isn't it? Mummy saw your Scottish Granny's friend today, made me miss your Granny. She passed away exactly a month after you. She was a great person, so accepting and open minded. Mummy was lucky to have her as a mother in law, couldn't have wished for a better mother in law. We couldn't tell her about your Downs syndrome or that you passed away, because she was so poorly herself. We didn't want to upset or worry her. We are trying to do things as normal, but we always remember and miss you. You are everywhere, it's nice but sad. Mummy saw a couple who have a baby around the same age as you last week. The father recognised me and probably noticed me first looking at the baby desparately. Mummy tries to visualise you how you would have looked at that age. You would have been 5 months old, we should have seen your smiles at least. We couldn't even see your first smiles, it was nice to see you showing some smiles when you were asleep. Your smile would light up your face and you looked adorable, but the smiles were so short and Mummy used to hope that you would do that again and watching you sleep. Mummy is so grateful that we have so many photos, good mobile phone - I took lots of photos and videos of you. It's nice to go through again and see them. Mummy's helping your brother's nursery to do a fundraising Teddy Bear hunt. Sounds good doesn't it. It's in memory of you and the money will go to Yorkhill this time. So we'll see how we get on. Time to go to bed now, night night my baby. Mummy used to worry you would be cold after we came home from the cemetery, but now I think you are not cold, you are in a safe place, warm and calm. That's where you are. Sleep tight.X

Missing you badly

It's been a week since the last blog message. Mummy will write weekly here. We all miss you a lot and mummy can't leave your name out when signing any cards for people's birthdays and so on. Hope people don't mind. I remember when you were in hospital in the Intensive Care,your sister was braver than me she used to take your babysuit to bed with her. Mummy couldn't, it was just too hard. Mummy couldn't do it because I wanted to hug you, hold you, cuddle you, kiss you and you were still here, I wanted you not your clothes. But now, that's all I have. I look for your smell in your clothes, unfortunately there is not so many of them, because you didn't wear much clothes for the last month. Instead you were attached to machines and needles, keeping you alive and asleep. Mummy couldn't see you crying because it was hard for mummy not being able to hold you close to me and kiss you and comfort you and the bed was too high for mummy to get good kisses on your cheeks. Mummy did everything that I could do, sang Mongolian lullabies, stroking your hand whichever had a little space to hold and not connected to a needle. Mummy gave you good manucures, too :-). The nurses in the hospitals were very jealous of your perfect nails. Mummy and Daddy got four blocks of your hair from your head, you were born with a head full of strawberry blonde hair. Your Daddy could not get over the colour of your hair. It was funny in a nice way, because you were the only one with red hair amongst the five of us. We soon enough found out that your great uncle Billy had the same hair when he was younger. So you have not only the same name but also the same coloured hair, too. Mummy's going to do everything possible to help people now, so I will be taking part in a few projects and fundraising events for charities including Yorkhill hospital, Down's syndrome association and Down's Heart group. Nothing will bring you back, that is the hardest thing to accept, nothing is enough to see my baby just one more time. Mummy needs to go now and pick up your big brother from nursery. He is a good big boy and you are a good baby boy. X

49th day

I can't believe it's already 7 weeks since you passed away. It's been sunny lately and mummy thought about you a lot. Mummy dreamt of taking you out for a walk in your nice red pram, taking you to the beach and let you try ice cream. 14th April, Wednesday- we got up as normal and your daddy went to work. I could tell he was down and very vulnerable emotionally. He went to work because, what else can we do?! Your brother and sister are on holiday this week. It's the Easter holiday break. They took easter egg and a bunny for you, to your grave. Yesterday on 49th day, we took beautiful flowers and candles for you. The solar lamp is great, it comes on when it's dark and the light looks like candle light, nice and warm colour like flame. We put so many things for you and decided to keep some of the things in your keepsake box. You have 2 nice lanterns, the solar lamp, ceramic teddy,another teddy that James painted for you and it's holding a heart with a writing on it. The writing says: 'We love you, Billy. XXXXX.' He held that Teddy himself on the train and in the car till he put it on your grave. Also your brother and sister put some shells, pebbles and your sister made a ger for you too. You wouldn't know what ger is. It's a Mongolian house, made of felt and wood. Mummy grew up in one of those. They are very cosy and comfortable. After taking flowers for you mummy gave some money to the ice cream kiosk at the beach, so that they can give away ice cream for children. We stayed there for a short time and already people were very happy with their 'free' ice cream, they turned to us and waved saying 'Thank you'. The girl at the kiosk was telling people it was to remember you. Also there was a mini bus full of people. When the people started come off the bus, I noticed some of them had Down's Syndrome. Mummy needs to be careful now. She finds herself staring at them, trying to picture how you would have looked and to say 'Hello' to them sometimes. I guess people don't know why I'm staring at them and might find it weird and tell me to mind my own business. Mummy has a lot to write here, I'll continue later. We are going to your grave now and light some candles.

For my beautiful baby boy Billy Buuz.

17 March 2010

Three weeks ago we buried you my baby. You were only three months old. I can not believe how short time we had you yet it felt a very long time. Perhaps it was very painful for you and for us. Mummy feels comfort in believing that you are now in a pure place where there is no pain and suffering. Oh baby, mummy had such a wonderful but so challenging time when you were here. From the moment you were born, life seemed not fair and it was not real. How can it happen to anyone, not only us but anyone, I didn’t wish this to anybody. Yes, the question of ‘Why us?’ was there but I didn’t want it to anyone. I wanted to find the God and beat him up, push him against a wall and ask ‘How can you do this?! What did I do? What did we do? What did my little boy do? It wasn’t his fault.’ Perhaps, God doesn’t exist; otherwise everyone will be looking for him. I’m begging God to look after you now, I put money in your little Mongolian wallet, so you will be fine in any country you go, assuming you can change the pence anywhere in the world and in Mongolia that money should be enough to take you to your auntie Tseye’s. I put our photo beside you, me breastfeeding you. So you will know who your mummy is. Of course, the photo of all of us is there too. You had a beautiful red hair, people wouldn’t know you were a mixed race child. Your Celtic genes were showing in your fair skin. Mummy was very pleased to see your Mongolian blue spots on your bottom I would call you my boy with golden chest and silver bottom just like the fairy tales in Mongolia. Yes, you were a fairy tale hero.