Sunday 30 December 2012

Another Christmas

Hallo Billy buuz. Mummy's red head. It's been a busy few weeks with all the festive events. We are all well, apart from your baby sister's teething phase. You Daddy and Mummy have been up every night with her crying little bit. She was in a much better mood today.

We spent the Christmas day with your Daddy's cousin and his wife from north of Scotland. They stayed here for a couple of nights. It was nice to have a family around as you know the other side of the family is in Mongolia. Not so much of visiting each other can happen from the other side of the world. On Christmas day, Mummy and Daddy both visited your grave and lit candles, put a cracker, a few Roses chocolates, a mince pie and a lovely cupcake which was given by the relatives. It was a lovely day, calm and not so windy.

We had  a good day, especially your siblings, playing all day with their new presents. Your baby sister loved a tea set. She likes the tea pot that makes a pouring noise. Your brother loves his new watch. He was so pleased that the watch came in a ox with a window and it had even its own cushion. Your big sister is carrying her camera everywhere. Your Daddy took them to places where they could take nice photos. Mummy will be getting 'busy' ish with a lovely new sewing machine. And your Daddy is enjoying his new office in the attic, with new chairs and his gadgets. Yeah, it's been a good year on the whole. Tomorrow is the last day of 2012.

Ok, Billy buuz, you keep shining on us and we will keep you in our hearts forever. Love you loads. Good might. XXXX

Monday 3 December 2012

Advent calendars already

Hallo Billy Buuz. Mummy's bootiful baby boy! Bootiful, Mummy calls you because you are. It is December now. Your brother and sisters started opening their advent calendars. Yours is there too. Your chocolates are put in front of your photo on the mantelpeice beside the candle. This year your Daddy got you all the same advent calendars. They all have reindeers and Santa. We put them on our bookshelf in the living room. Every morning, after breakfast it's a huge rush to get to the calendars.

We are teaching your baby sister to say 'Santa.' She is funny. She is such a bossy little girl, telling and commanding everyone to do things for her. Your big sister is her favourite out of all of us. She loves playing with your brother too, giggling and twisting and wriggling about. Such a lovely picture to see them all happy playing together. Of course, there is always, always and always someone is missing. That little gap, a big gap, a tiny person, huge space, a puzzle peice from our family jigsaw. The hole for that missing puzzle is worn, the other edges stained with tears, heartache and love, stitched with kisses, nappies, tissues, tears and pain. The other edges lost that part forever and they will stay unfinished as long as they stay in that position for the rest of their lives.

While we were driving to your big sister's piano lesson your brother asked 'Mum, how does Santa come down if the house doesn't have a chimney?' He is lovely, he is seven and still believes in Santa. He talked about writing to Santa. So we will see. There is a post box in a cafe in our town for Santa's letters and the kids recieve letters back from Santa. How amazing is that?!

Mummy didn't know who Santa was till Mummy moved to Britain. She knew the Grandfather of Winter. He dressed the same as Santa. In Mongolia they celebrated New Year, not Christmas. Mummy loved it when your grandfather put the tree up. Your granny's pupils gave that tree as a present to Mummy when she was born. It's a tiny tree the size of a cat, probably. Mummy put the snow in front of it with your grandfather using cotton wool balls attaching them on strings.

Your brother and big sister were asking when we can put our tree up. Maybe another week or two. We will see. Mummy loves Christmas now. Your Daddy says that Mummy's gone crazy about Christmas considering someone who didn't know what it was until recently. Yes, Mummy will decorate the house with your siblings and put your toys out, too. You were home for Christmas even though you only lived for three months.

Mummy and Daddy's new room has velux windows which are on the roof. So it's so lovely when the sky is clear. Mummy looks at the stars and go to sleep having a twinkling thought about her little baby boy in the sky amongst the million stars. Good night baby boy. Love you loads. Mummy's bootiful baby boy. XXXXX 

Monday 26 November 2012

Birthday boy

Hallo Billy Buuz. It is getting cold now and our extension work is almost done. Mummy and Daddy have been busy with painting the walls, putting floors down and hanging curtains. The house is looking much nicer now. Today we had some carpet down on the stairs and the landings.

We have been lighting candles for you and every day, yes, every day we talk about you, think about you and share little things with you. In fact there is a chocolate cupcake in front of your photo at the moment beside a lit candle.

On your birthday we went out for dinner. All of us. Your sisters, brother and Mummy and Daddy. We also went to the cemetery and lit candles and put flowers. Mummy went first with your baby sister. She sat on her blanket while Mummy put the candle and the flowers down on your grave. It was a cold and rainy day. Your little sister saw the sweeties on your grave and started saying 'yum, yum.' Jackie had left a packet of Jelly Tots for you. So we had some of that. She enjoyed some of it and we brought it back home with us. Your big brother helped himself with most of that. It's better that way, otherwise it would have attracted all sorts left open outside.

You would have been 3 this year and probably thinking of going to nursery or something. Mummy's brave little man you were. Mummy still pictures you enjoying your bath in Mummy's arms and your big brother and big sister all going 'awww.' Mummy thought Mummy was doing well handling her emotions, but it's unpredictable. It can start suddenly, anything can trigger Mummy's tears reminding you, making her miss you. Recently Mummy bumped into a nice nurse who looked after you just after you were born. She was always nice, so kind. That kind of profession needs people like her. Mummy thought it must be nice for them to see the babies they looked after if they lived. Growing taller and walking and talking.

 Ok, Mummy needs to stop now, she started to sniff and wiping her tears in anything she can see past the tears, baby. Night night, baby boy. Mummy's brightest star in the sky. Love you loads. Hope there is a place that I can meet you again. Somewhere in the middle of million stars. XXXXX

Tuesday 13 November 2012

Why don't we grow more resilience?!

Hallo Billy Buuz? It's your birthday tomorrow. You would've been 3 years old. Exactly 3 years ago Mummy went for her check-up and all started from there. Now, we don't have you in our arms, noticing other children starting nursery, running around, talking and growing up. 

Mummy does not want to go on any more that we don't have you, instead Mummy is trying to leave something behind, do something worthwhile in memory of you. Mummy realised many people must have gone through similar situations and didn't have the chance to bring up stigma or stand up for themselves because of language issues, lack of knowledge and courage. Mummy is not saying Mummy has these all, all Mummy has is this drive to help people who are and who will face the same situation for years. Mummy comes across many obstacles challenging what Mummy is trying to. Mummy has to be clever and good at communicating with people even when she is angry inside.

 'Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed
Martin Luther King, Jr. 

Mummy keeps saying this to herself.  We would have still thought it's alright to have black slaves if that was the case. More resilience is not my excuse to stop the campaign we are planning to do. Mummy is not trying to 'clean' any language as another person commented. As you know Mummy is ambitious, but not that ambitious. Mummy is being prepared and it's a long way to reach what we want, but Mummy won't be satisfied until we do it. Another saying Mummy found recently was:

'It always seems impossible until its done.' Nelson Mandela

So we will keep going, Mummy will have to grow more thick skin not to ignore the situation but not to be wounded by unhelpful comments. Yes, why don't we grow more resilience towards cowardly comments?! 

Mummy is ranting a bit here, but Mummy's boy is there for Mummy. Do you know the interesting thing? Chinggis Khaan's birthday is the same as yours! Love you baby boy, Mummy's beautiful baby boy. XXXXXXX

Tuesday 6 November 2012

A poem in Mongolian

Хүүгийн минь төрсөн өдөр 11 сарын 14. Энэ жил 3 нас хүрэх байлаа.

Талийгаач болсон хүнийг дурсдаггүй гэж нулимсийг минь ширгээнэ
Таг өөрийгөө барьчихвал тамаас ялгаа алгаа
Арван сар тээсэн үрээ авсанд оршуулснаа тодхон санана
Аргадаж намайг зөөллөхийг хүссэнээс алт мөнгийг би хүссэнгүй ээ

Сэвлэг үсийг нь үнэртэж энгэртээ наасан үр минь
Сэтгэл зүрхийг минь цочиртол хорвоогоос халиад явсаан
Сүүгээрээ амласан эх нь мөнхрүүлэхгүй юм бол
Сүм дуганд хичнээн мөргөөд яах юм бэ

Тийм ээ, миний хүү богино насалж
Тэнгэрийн элч шиг л ээждээ зурвас үлдээж
Тэмцэж босоод нэрийг нь ээж нь түүхэнд үлдээнэ
Тэрлэж, мэлмэрч, тэсч байж хүүдээ би очино
 
They say not to mention someone once they die
Then it'd be like in hell, suffocating
The day coffin replaced the baby basket
Dream turned into nightmare


Thursday 1 November 2012

The sun

The sun is out
The sky is clear
My heart is heavy
My baby boy isn't here.



Tuesday 16 October 2012

A story that inspires Mummy

This story was put on Mummy's Facebook page by another mother who has a child with Down's syndrome. She said she values what Mummy is trying to do and this story reminds her of Mummy. 

One day, an old man was walking along the beach in the early morning and noticed the tide had washed thousands of starfish up on the shore. Up ahead in the distance he spotted a boy who appeared to be gathering up the starfish, and one by one tossing them back into the ocean.

He approached the boy and asked him why he spent so much energy doing what seemed to be a waste of time.

The boy replied,


"If these starfish are left out here like this they will bake in the sun, and by this afternoon they will all be dead."

The old man gazed out as far as he could see and responded, "But, there must be hundreds of miles of beach and thousands of starfish. You can't possibly rescue all of them. What difference is throwing a few back going to make anyway?"

The boy then held up the starfish he had in his hand and replied, "It's sure going to make a lot of difference to this one!

Exciting times ahead

Hallo Billy buuz. Mummy almost stopped writing the blog here. She means she wanted to write her diary but not as a blog. Then your Daddy was supportive and Mummy felt she can carry on, especially we have a lot on the go. The house extension work is almost done, we are painting and decorating ourselves. So we are very busy and tired too. You Daddy is working hard and putting the floor himself and Mummy turned into carpenter at times doing the scotia for a couple of rooms.

Your big sister turned 14 and she is a great help around the house and with your brother and little sister. Your baby sister is talking, well in her own way, mixed words in English and Mongolian. She can say Mummy, Daddy, yavya yavya (let's go in Mongolian) and buuvein buuvein (lullaby) meaning she wants to go to bed and have milk. She plays with your Teddy, she gives it cuddles and rocks it in her arms. Your Teddy is wearing your wristbands, the ones you were given from hospital when you were born. He moved with us downstairs into the new bedroom now and stays where he was, just above Mummy and Daddy's bed frame.

Mummy has been attending meetings with Down's Syndrome Scotland and we are definitely going ahead with the campaign on the term Mongol. Mummy is so pleased. We have another meeting next week, so it will be good to see how we will do it. Mummy has a lot of ideas and people have been keen to take part in different parts of the campaign. So it's all good.

Mummy and Daddy went to Down's Syndrome Scotland's fundraising dinner a couple of weeks ago. It was a lovely night, but we missed you and had to tell ourselves we had to control ourselves. It was a moving event. people would ask what our connection with Down's Syndrome Scotland was and of course we mention you and people don't expect that kind of answer. We had a nice meal and your Daddy won a bottle of champagne and a voucher for his favourite restaurant. Mummy was just telling him that she would love to win that prize for him when she saw it on the prize list. So there he was carrying the prize home. Maybe, our little angel sent that. We don't know, it just happened exactly how Mummy wished.

We haven't been to the cemetery as often as we used to go to. We have been lighting candles at home mostly. Your baby sister points at your photo and says Mama (meaning a baby in Mongolia) and we say it's Billy, you big brother. You two never met. Your baby sister will only know you from the stories and photos we have from you. Yes, it's so sad, but we will never forget you and you are in our hearts forever. Mummy is feeling quite tearful these days. You would have been 3 this November. Now it's that time again. mummy and Daddy start to notice other kids' birthdays and see them celebrating with candles on cakes and we light candles on your grave. Mummy's throat is almost suffocating because Mummy is trying not to cry and the emotions bursting to come out. Now it's almost midnight. Mummy can cry and wipe her tears in her dressing gown while others in bed. Mummy has a feeling that we will do what we want to do, because you are Mummy's baby boy and you made Mummy very brave. So she will raise awareness, go campaigning, make people think and understand and support. Yes, we will do it. Our book will get published, soon. We know it will. It would be good if it gets published around the time the campaign takes off.

Ok, beautiful baby boy, tiny tiny, little man, goodnight. Love you so much. Night night. XXXX

Tuesday 28 August 2012

Back from Mongolia

Hallo Billy buuz. Mummy was away to Mongolia with your brother and sisters. Your daddy didn't go as we have our building work not finished. Still.

We had a good time seeing your emee and ovoo and other many many people. Your brother was surprised how many relatives we had. He had a chance to go on a horse. So did your little sister. Mummy has to say it took a while to get into normality there. Mummy would have no problem on her own, but going with three kids was not that easy. Saying that they were very good.

Mummy wanted to talk about you with people, but realised it's different over there. In Mongolia, people do not talk about people who passed away much. They don't even mention their names, instead they refer as the 'taliigaach' meaning the one who passed away. Mummy hadn't seen any of her relatives apart from your ovoo and Yeye since you passed away. So Mummy wanted to tell people about you and share her feelings. Your emee was better, because she knew you. She still believes that your death was not supposed to happen. That is true in some ways, unfortunately it did. We lost you.

Having your baby sister with us must have given people some kind of relief. It seems they were heartbroken for us and scared to mention you in case Mummy starts to cry. By the way, your great granny was lovely. She is in her 80's now and she had eleven children. She still looks good. She has no hair as it has been shaven for years. Mummy doesn't remember when she started shaving her hair and making herself bold 'preparing to die without dirt and sins.' It's a strange tradition. She used to wear hat in bed in winter nights. We would wind her up and she would laugh and tell us lots of fairy tales. This time, Mummy recorded her telling us Mummy's favourite story. The story title is The Boy with a Golden Chest and Silver Bottom. Do you remember? Mummy wrote a little story about you and called you exactly that. That story was published in the Scottish Family Legends book the day before your sister was born.

Mummy is trying not to cry, don't know why stopping it. Mummy misses you a lot. Every day, not a day passes by without missing you, remembering you, longing you and the hole in Mummy's heart will never be filled. One day, Mummy will meet you hopefully. Be there and show Mummy around, will you?

Ok, Mummy will tell you better news. The campaign Mummy was talking about is likely to happen. How great is that?! Down Syndrome Scotland is supporting us and happy to do it together. Also there is a very kind person who is very happy to help us in different ways. So baby, fingers crossed.

Oh, Mummy has forgotten to tell you. Mummy was on Mongolian national TV and two other channels C1 and Chanel 25. Mainly talking about the campaign and our book. Mummy needs to get on with the book now. Having your baby sister and the building work, Mongolia Mummy had to pause for a while.

OK, Mummy's brightest star in the sky, baby boy. Good night. Love you, baby. XXXXXX

Monday 11 June 2012

Awards and more birthdays!

Hallo Billy Buuz. Well, baby boy we have had lots of exciting events for the last few weeks. Mummy went to London on 1 June.  It's a Mother and Children's day in Mongolia and Mummy went to London to attend awards ceremony. It was a combination of the two happy occasions. Mongolians in Europe were organising this event called 'Woman of the Year 2012' in London. Mummy was nominated for and award and got an award! How exciting! This is another one for you Mummy's babies and many who support us.

You can't believe it! Your baby sister is 1 now! We went to Edinburgh and celebrated with her godparents. We all had a lovely time, eating so much though. Karen cooks lovely meals and then we went out for lunch the next day. Your baby sister was so cute with her pigtails and smiling at everyone. She wasn't sure what to do with the candle, so Mummy helped her. We came home and put a piece of her birthday cake in front of your photo. Your big brother will have it later, probably. He is funny.

Your big sister is getting so tall, taller than Mummy. She's been nominated for an award too. We don't know what it is for or anything, it's the school award. So she must be doing well in something. We are pleased to hear it. Your big sister is a good girl, helps a lot and plays with her younger siblings.

We are going to Mongolia soon, just for a few weeks. Mummy is really looking forward to seeing your grandparents. The last time Mummy saw your Mongolian granny was when you were born and we saw your grandpa was your funeral. So it's been a while. Mummy is also looking forward to seeing her aunts, uncles, cousins and many friends. Yeah, it's a nice time just now. The extension is coming on and in fact we can see the builders building the roof just now.

Another nice thing is the Director of Down's Heart Group in London will have your name on her T-shirt when she is holding the olympic torch on 9 July. She is representing the Down Syndrome community around the world. So your name will be there amongst other people's names.

Baby boy, Billy buuz. Love you loads. Mummy's angel boy. Bye for now. XXX

Sunday 27 May 2012

Mummy and Daddy's birthdays

Hallo Billy Buuz. It's been very hot recently and we have been enjoying the sunshine. It was your Daddy's birthday last week and Mummy's this week. We both had a good time, spent our days with your brother and sisters. We also went to the cemetery and lit candles for you. We also put some birthday cake in front of your photo. Mummy was emotional on her birthday. It was just lovely surrounded by your sisters and brother. Your Daddy made a big fuss and gave Mummy a big bunch of roses. It was lovely, but Mummy missed you. Mummy looked at your photo and quietly missed you being here with us...

Yesterday, your brother spotted a beautiful butterfly and Mummy knew you were there, just saying hello and reminding Mummy that you were around. It was lovely. It's a simple thing, but Mummy loves it when we see any butterflies.

Your sister went for a sleepover recently and she had left a letter to your brother on his bed. So he read it when he went to bed. She had asked him to look after your sock that she keeps normally. That sock has your hair.

We have been busy with the building work and it is going well. So we will have a nice room for your baby sister. At the moment everybody is a bit cramped, but we'll get there soon. Mummy doesn't mind after all she grew up in a yurt.

Billy, Mummy misses you, but Mummy will do everything she can to raise awareness on the term Mongol and help people with learning difficulties and their families. Mummy has been experiencing many obstacles. Some people think Mongol means a disfigured child, some people think Mongol means stupid, some people think Mongol means Down syndrome when it only means Mongolian as a nationality. Mummy thinks it's time to change that, don't you think? Mummy knows you are there and Mummy is doing exactly what she said she would do. Remember, people will remember you, Mummy's baby boy. Mummy's baby boy changed Mummy forever. Mummy became brave and can speak for people who can't talk about social stigma, injustice and human rights. Well, Mummy was told that the world does not lack her input. Well, it does, because we all matter, because Mummy does not want your brother and sisters and other many young people feel ashamed to be Mongolian or feel hurt when someone nasty calls anyone Mongol. We can do it baby. We can. Good night, baby boy. Love you. XXXX

Tuesday 15 May 2012

The house

Hi Billy, who's mama's good baby boy?! We are very busy with the extension and attic work started. The house has a hole on top and they put the window frame on at the moment. So the house is cold and messy. But we are very excited as there's a change every day. The house you knew is changing into bigger one with more rooms. You know your Mummy grew up in a ger, so it's a bit too much for Mummy. But hey, who's complaining. :) Mummy is busy with different things as usual. Mummy met another mother who has a son with cerebral palsy. She is lovely and we set up a secret group for other Mongolian parents with disabled children. The group is on Facebook. The group is called Хайр Бялхсан Гэр in Mongolian, meaning a house that is overflowing with love. We thought this group would provide a help and support for parents and family members psychologically and emotionally. We definitely needed that kind of help. Mummy and Daddy and your big sister still go to the cemetery and light candles. Yesterday, Mummy went there on her own. It was a teary time, Mummy swallawed and swallwed her tears and it kept coming out. Then had to let it run. Mummy tries not to cry at your grave. Mummy remembers the poem saying:


Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

  Mummy is going to London soon to attend a big awards ceremony. This is for Mongolian women who live in Europe and have done good things for others or raised Mongolian profile in the West. The Mongolian Honorary Consul in Scotland and the Scottish Mongolian friendship society people are supporting Mummy and another woman from Scotland. It's very nice of them. Mummy is happy that the term 'Mongol' will be talked about and mentioned there. Also people will find out what Down syndrome is if they don't already know. So it is a good step to raise awareness. Mummy is also looking forward to meeting inspiring people at this ceremony and a Mongolian singer Jargalsaikhan singing, too. Mummy hasn't really been to any events like this since Mummy moved to Britain. Jackie is coming with me. Isn't she great?! Difficult times and happy times, she is there. Mummy's friend and your Godmother. Your baby sister is asleep now, in her car seat in the dining room. The builders are making so much noise, drilling, cutting, hammering and talking. So she couldn't sleep in her cot. She is the one most affected by the work not having naps. After all, we are making a room for her. So she'll have to put up with it. :)
 She is learning to stand and started to babble and copy words and sounds now. She is at that great stage. Mummy doesn't take your baby sister to parent and toddlers' group much. Mummy and Daddy are scared she would get all sorts of colds and infections. We want her to grow and become a bit bigger to fight any germs. After you, we are scared. Oh, this is good Billy buuz. Mummy feels so much better writing to you. Mummy's lovely boy. Mummy wishes she could kiss you one more time. The gravestone is not you, Mummy kissed your name a few times, but it's not you cold and still. Mummy's boy is in our hearts, warm and alive. Missing you baby. Love you baby boy. XXXX

Monday 30 April 2012

Mama's beautiful baby boy

Hallo Billy buuz. Hallo baby boy. Mummy has been busy, infact we were all very busy. The extension work is starting soon. So mummy and daddy were getting ready for the work. It will be great once the work is done, but before that there will be chaos in the house. It will be worth it though. Mummy was saying to you inside herself 'Mama's bootiful, bootiful baba.' That's right, that's how Mummy calls you all. All day, Mummy spends the day calling your baby sister 'Booty queen' and 'Beautiful, bootiful.' she will be a year old soon. Can you believe it?! Mummy is very pleased that Mummy's one tweet started a conversation and even made something important happen in history of Mongolian Down Syndrome association. Mummy prepared a talk with the chair of the association and she did a talk at TEDxUlaanbaatar Change event. Mummy is so pleased. Billy, this is you. This is all happening because of you, baby. Mummy remembers picking up the trophy in March. The trophy is for the book which is being written in memory of you. When Mummy was told our book had won the first place Mummy felt this urge of crying missing you and you made that happen, but Mummy held onto her tears and instead enjoyed the success. People kept saying 'You don't realise how well you've done.' Mummy was very pleased, but Mummy was grateful that someone, some people saw the important message in our book and valued it. So baby boy, as many of Mummy's friends said 'This is just the beginning.' We will do many good things and change attitudes and challenge stigma. Mummy's bootiful baba, goodnight. Love you, love you, love you. Billy buuz, baby boy. XXX

Sunday 8 April 2012

Newspaper Article

SHE’S been through every mother’s worst nightmare.
But brave Uugana Ramsay is turning her tragedy into triumph.
For the hardworking mum-of-three has bagged a top trophy for her story about her baby – and the book isn’t even finished yet. Read more on
Mummy's Trophy story in Ayrshire Post

Wednesday 4 April 2012

Burhan orshoog

God bless. Mummy started this blog with this phrase today because Mummy just read another little girl passed away on the other side of the Atlantic ocean. Mummy will light a candle now. Mummy feels for her family, her mother, father and the siblings.

Mummy was Skyping today to Mongolia speaking to the head of Down syndrome Association in Mongolia. Twitter is a good thing. Mummy only contacted the person who organises these TEDx talks in Ulaanbaatar a month ago or so and suggested someone did a talk on Down syndrome and the term Mongol. They were fantastic and agreed to do it and even put Mummy in touch with Down syndrome Association there. So this morning we prepared the talk.

Ok, baby boy Mummy needs to go and help your big sister. She has been looking after your baby sister and now she wants to cook. How clever is she?!

We went to the cemetery earlier and put candles. Bless you baby boy, good night. Love you. XXX

Sunday 25 March 2012

Patience

Just have a little patience
I'm still hurting from a love I lost
I'm feeling your frustration
Any minute all the pain will stop...

My heart is numb, has no feeling
So while I'm still healing
Just try and have a little patience...

I'll try to be strong
Believe me I'm trying to move on
It's complicated but understand me...

(Take That Patience lyrics)

This song sums up how Mummy feels. Mummy has found something to concentrate on constructively, instead of depressing and negative thoughts. But, but sometimes, it's not often but sometimes Mummy cries. She cries wiping her tears in her blue Mongolian deel sleeves and writes. She gets frustrated that her little boy left lying in the ground in the cold, in a dark place. All Mummy can do now is to write and hopefully influence some people who are using or misusing the term 'Mongol.'

Mummy was even told by someone recently that Mummy looks as if she has Down Syndrome because Mummy is Mongolian. He said 'Yes, the flat face!' Oh I know he didn't mean to hurt or offend Mummy he says. Do you know that was his ignorance and he was blind to it. He believes what he was saying.

Do you know what?! This British Dr John Langdan Down who lived in 1800s made up this term just based on his opinion, in his opinion, in his opinion. Yeah, let's just call these idiots 'Mongols.' They are not as superior as we are.
Now the consequence is the whole world is misusing the word Mongol. It frustrates Mummy. Now Mummy is really determined to 'change the world' not to use this term. Yes, change the world. It will change the world of many people including people with Down Syndrome, their relatives, friends and Mongolians. Mongolians don't have to feel confused about it, they don't have to feel uncomfortable about it, they need to know about it and challenge these ignorant people. Ok, Billy sorry baby, Mummy is just writing how she is today. She had enough of walking on egg shells, she had enough of people being 'polite' and not to offend others by challenging these ignorant people. Mummy'll end today's blog with this quote.

'In the End, we will remember not the words of our enemies, but the silence of our friends.'
Martin Luther King, Jr.

Friday 16 March 2012

A trophy!

Hallo Billy Buuz

We have won a trophy! Mummy went to the Scottish Association of Writers' Conference yesterday and your book, our book Mongol came first in the non-fiction book category. So we have a trophy in the house now. The trophy is called Janetta Bowie Chalice. Mummy put it beside your picture on the mantelpiece. Mummy is going to put the photo here. This is for you. You made Mummy to write and be determined.

Last few days have been very busy. Yesterday, Mummy went to London to get your brother, sisters and you registered at the embassy. Ella was not well either, she is teething and has a cold. She is getting better now. So you can imagine, your Mummy and Daddy walking round half asleep. Anyway, we are so chuffed and Mummy's dream of getting our book published is a few steps closer now. Bye just now, baby boy. Love you always and forever. XXX

Monday 20 February 2012

How do you cope?

Hallo Billy. Mummy started this blog post a while ago and keeps coming back and then something happens and not finishing it.

How do you cope? How do you get up in the morning? These are the questions we are asked a lot. Mummy and Daddy have to get on with our lives and look after your siblings. We don't want your brother and sisters to remember sad childhood. We know they always remember you and talk about you, we will never forget about you. At the same time, we want them to enjoy their childhood just like other kids. You would want that too. You would want us to be happy and do well.

After all everyone has their problems, sadness and they have to find ways to cope, manage their feelings. Mummy noticed life is more meaningful if you live for others. It does not mean you tell people that. You help and support people who need that little support. You might be surprised how it makes you feel. Mummy heard someone on the radio talking about heaven and hell. The story was: In hell people were struggling because they were trying to feed themselves with very long spoons. In heaven they had the same spoons only they were feeding each other and they were happy. Mummy likes that story a lot. It says so much about happiness, support and friendship. Mummy told your brother and big sister that story. Your brother was very interested and it made him think. Now he gives the bigger piece of chocolate or anything he likes, he offers it to the other person. He is going through exploring age. The other day he asked 'What does selfish mean, Mum?' Mummy explained and he said he doesn't like the word selfish and he wants to be kind.

Uh-uh your baby sister is waking up now. She has been a good girl. She loves her food, she started feeding herself. It's funny though half of the food is on the carpet and half on her face. We'll get there.

Billy buuz, baby boy. We love you. The anniversary of your death is on Friday. Mongolian New Year is on Wednesday. Mummy and Daddy might give it a miss this year. It's a bit close to your anniversary. We will see some friends and have a modest time. Mummy and Daddy can feel our hearts becoming heavier as the day approaches. But what did Mummy say in the beginning? We have to get on with our lives, we will never ever stop loving you and light candles for you. Our beautiful baby boy.

Mummy wrote about you in a magazine for additional support needs and the link is here. It's called Three Months into Forever.

Monday 23 January 2012

Emptiness

Hallo Billy. Mummy sat here for a while for the first time not sure how to start the blog post. It feels like writing a poem, perhaps in Mongolian, maybe in English. Mummy's thought went through the events of remembering you and sighing without knowing herself. Every time a toddler runs past Mummy remembers you. You should've been running round just like that. Maybe not. We didn't know how much the brain damage was going to affect you. Your brother still as always puts his sweeties infront of your photo. The other day we were in a shop and he grabbed a hat and wanted to buy it for you. Mummy had to say 'I know son, unfortunately Billy is not here to wear it.' Mummy quickly pushed Ella in her pram and walked away changing the subject. Just like that, you are with us. It's a nice feeling, but Mummy feels there is always something, someone, you... missing from everything...

It's a very windy winter this year. Not much snow, in fact we haven't seen any snow here at all. The year you were born, it had the most snow in years. Tough winter it was. Everywhere.

Mummy wants to do more on raising awareness of Down Syndrome and the term Mongol. Something to make people think and change attitude. It might just be a word for some, but it's a word that represents a lot.
Mummy started to teach Creative Writing to some people who experienced homelessness. One of them said: Oh, it's awful. How would we feel if they decide to call a cancer or something serious Scots or English as our nationalities.

Well, she has a point. We'll see. Mummy is thinking, writing, blogging, tweeting and of course living with our every day life. Ella is sleeping better at night, but she still wakes up at night. Do you know what?! Mummy does not mind. She is healthy, she is a baby. Mummy loves cuddling her, dancing with her from room to room, singing. Oh talking about singing, she is a loud one. She might become a singer, you know. She loves babbling aloud. Sometimes we can't hear each other because she is so loud. She's just happy, that's all.

Your big sister is in Paris on a school trip. How lucky is she?! She will be back in two days. You brother is already counting the days. She had left a lovely note in your brother's bed. So when he went to bed there it was waiting for him. They love each other, it's lovely. We know they have their moments, but hey who doesn't!

Mummy feels like something big is about to happen soon. Well, let's hope it does. Something good and big. Billy Buuz, night night red haired boy. Mummy wishes she could sniff your head one more time, just one more time. Your Teddy is still on our bed headboard. Mummy is not going to wash it ever, that top is the only thing we have you worn and left as it was. Who would've known you were going to eave us so soon? Night, baby. XXXXXX Love you.

Sunday 1 January 2012

2012 - A New Year

Hallo Billy Buuz

Christmas and New Year is almost over. We had a quiet Christmas. Just the five of us. Your sisters, brother, Daddy and Mummy. Daddy got you all your advent calendars. Yours was the one with reindeers and Santa. Ella's was the one with Peppa Pig. Your brother was good at making sure he shared yours. He would put some of his and yours in front of your photo and then he would eat them. So you had a row of chocolates of different shapes and sizes in front of your photo. We light candles beside your photos on the mantelpiece, too. Mummy is trying to enjoy your brother and sisters but we miss you very much. Today is the first of the new year and Mummy was feeling uneasy and teary. Mummy's Billy buuz will never come home doesn't matter how much we try to cope in different ways.

Mummy hopes that this new year will bring many good things. We might have a nice extension to the house and Daddy says we might name one of the rooms after you.

Also Mummy really wants the book published. So fingers crossed, baby boy. We will see.

Mummy is trying hard not to cry while writing this. Learning to hold her tears somehow, but not sure if it's healthy though. Your Daddy used to say 'Having fun?' in the early days. We both knew what he meant. Mummy would sit there behind the laptop with mountain of tissues and red eyes, sniffing. Now Mummy is busy with Ella and she makes Mummy smile a lot. Sometimes, it's unbelievable that she is here. Mummy feels like pinching herself to realise she is here and she is real. She looks like you so much, people comment on it. Her blonde hair with blue grey eyes compare to Mummy's oriental looks.

Once this woman on a train was looking at Mummy and then Ella, checking who is who. It was funny. Similar to you really. Mummy would turn up at hospital beside your bed and the nurses looked after you on the day wondered who Mummy was.

On Christmas day, Daddy and your brother went to your grave and put candles on and then Mummy and your big sister went and lit more candles. It was wild and windy. So Ella stayed at home, besides she had a bit of a cold. Mummy and Daddy feel we can't be the same any more. Any little cold or cough Mummy starts to think all sorts. Losing you made Mummy think human life is so so fragile.

Oh, great news to tell you is your Mongolian granny was awarded with a big award for her work. We are so impressed by this. Your granny deserves it. She always worked hard at teaching and working in the social and educational field in the country in Mongolia. She is writing a book too. Her book will be published very soon. See, your Mummy has a great role model. So 2012 should be a BOOK year for us.

Mummy's red haired angel, baby boy, beautiful boy. Love you so much. Nothing in the world would ever mend that broken holes in our hearts. Mummy will work on the mission you had and help many through writing. Goodnight, Billy. XXXXX