Monday 23 January 2012


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.


  1. Anonymous9.2.12

    I wonder whether you might be interested to read how Dave Hingsburger campaigns about the words we use to describe disability...?
    Very inspiring.

    Thank you for sharing your experience with others.

  2. What a tough road you are on but thank you for recognizing and finding a beautiful way to campaign. A presenter recently said what if I was introduced as Fat Patty? It's just not a good approach, these rude comments.

    Please eventually consider adding campaigning for the 9 out of 10 babies (at least in the US) who are not given a chance and are terminated upon diagnosis in utero. 92% termination ratio after an amniocentesis and now many cities have a non-invasive blood test which might make the ratio closer to 100% without accurate and adequate information. Informed consent, don't decide without getting the right information. I read today most happen at 18 to 22 weeks gestation too which means a horribly sick process. Sigh

    But nothing compared to losing a child and it's when these parents feel your pain upon reflection that pains me too. my heart aches for your situation and I LOVE your passion and ongoing love and love love love for your son.