Friday, 5 April 2013

A letter to My Big Girl...

I wrote this letter to Ella a few weeks ago and have been wondering when to put it 'out there'

There has recently been a dark cloud cast over all the good being done to raise awareness, promote equality and change public thinking towards people with disability. I have started to form a response several times, but can't seem to put down what I want to say or say what hasnt already been said by others. I have therefore left the approach of writing a post directly about this issue to other bloggers and writers who are much better at writing and getting a point across than I am. 

I did want to do something, be part of the great swarm of responses to Mr Brewers comments. And my way is to share this letter from me to my girl.

Dear Ella (The Bean/Sweetpea/Beanster/Beansprout/EllaBella)....

I feel very lucky I got to be your mummy.  I'll be the first in line to admit it's not always been easy but I'm glad you have always been there to light my way. 

Looking back, I needn't have worried about all the extra things I had to learn (or thought I had to learn) when you arrived. 
Over the last 2 years it's not been the doctors, therapists or books that have taught me all I need to know, but you (and I get the feeling that will always be the way it is!).  

From the day you were born, challenges were placed in your way but never once have you let them stop you.  
Unfortunately, there will always be challenges and obstacles you will have to face as life unfolds.  For the ones you can't conquer on your own, you will have me, Daddy and everybody else who loves you to help you.  Nothing is impossible.

You completely changed my pre-conceived ideas of what I thought being a mum is all about.  
Through you, I've been able to see the world from a whole new perspective 
- 'A Different View' - 
and that's a privilege that not many people get the chance to experience in their one lifetime.
This is not what I expected motherhood to be, nor is it the path I may have chosen if given a choice.

 However, from day one you've bettered my expectations and shown me that the best things are often those that happen by chance, not choice. 
I wouldn't change you or anything that's happened since all 7lb 4oz of you came into our lives that cold November evening in 2010.   

It's hard to explain to you that a big change is about to happen, that our time with only you is rapidly coming to an end.  
But the challenge of being a big sister is one I know you'll take completely in your stride.  And you have so many wonderful qualities to share with your baby sister...
Your fierce determined & independent streak, caring nature and eager desire to learn - all balanced nicely by your contagious sense of fun and a generous sprinkling of  eye twinkles and cheekiness.  
A girl couldn't ask for a better role model.

Thank you for everything you've taught me and for making me a better person and a stronger mummy.  

I can't wait to see you shine in your new role.  

Love you always

Monday, 25 March 2013

Lots of odd socks...

This is a positive post, I promise just bear with me while I give some background (or just skip to the bit with pictures...!)...

Down's Syndrome awareness week 2013 is now over.  And this year, it caused quite a lot of comment and raised a fair few eyebrows from within the DS community (and not all of it good).  

I'll take you back to the beginning of the year when Down's Syndrome International (DSi) unveiled this years awareness theme - 'odd socks'.  Maybe it's because I am still new to all this and for the fact that I know Ella for who she is and not as a diagnosis, but my initial feeling towards the idea was quite positive and to be perfectly honest, I didn't really think too much about it.  Others, however reacted very differently.  The idea of using the word 'odd' in relation to raising awareness for DS was clearly upsetting and disappointing to a lot of people - parents, charities and organisations the world over complained - open letters, blog posts, social media - the message from the people was clear, 'odd socks' was not a hit.  

And so DSi swiftly (and a little clumsily) changed their awareness campaign to 'lots of socks'. A less tangible idea in many ways and it was at this point I started to wonder whether we actually needed a theme for the day or if it should be celebrated and given the recognition it deserves by people choosing their own ways of raising awareness.  Last years awareness day marked the first year it had been officially recognised by the UN and there was a big, global sense of inclusion and celebration for people with Down's Syndrome.  This year has been seen by some as a step backwards and that a sense of difference, rather than inclusion was the overall message portrayed.  

That said, I stuck by the original idea of odd socks.  I wasn't aiming to change the world (not this year, anyway!) and saw the day as an opportunity to educate those I see at work, Ella's nursery, friends, colleagues - our immediate community (as well as raising some money for our local support group).  The way I interpreted the socks theme was this:

Socks don’t have to be the same to be worn together... The idea of the day is to celebrate difference, promote inclusion and to have a bit of fun. Regardless of colour, pattern, material or size, socks are actually more alike than different. And the same goes for people too.

Ultimately, it's important to remember that awareness week is (and has been) a positive, global and important part of the year for all involved, however money is raised and however it is celebrated.  

We have had a great week and I hope that all the people attached to all the feet below can say the same.  I received photo's from friends and family all over the world so thank you!

I like that I can remember who is attached to the feet shown and that some of them tell such poignant and brave stories.  Wearing odd socks for a daughter who's awaiting major surgery,  for a much missed and loved baby boy, to remember our children's bravery and celebrate the many things having them has taught us.   

I wore mine for Ella, for her friends and the wonderful people we know because of her and for those families in the DS community who will benefit from our fundraising efforts.   

My ward and Ella's nursery raised £126 in total, Granny Karen's workplace raised £270 and there is still money coming in from other friends and relatives.  We took the donations we had to the Chatterbox group on Saturday and they were very gratefully received.  Thank you to everyone who took part!

So there you have it - lots and lots of odd socks!

More on what Ella has been up to and what else we did to celebrate World Down's Syndrome awareness week soon.

Happy Monday everyone xx

Wednesday, 27 February 2013

Keep calm and get your odd socks on!

The Down's Syndrome Association have produced a limited edition T-shirt which is nicely timed for this years World Down's Syndrome Awareness Day, to be held on March 21st. 

Having seen several hundred lovely pictures of people proudly wearing their T-shirts pop up in my news feed on Facebook and Twitter I decided to purchase one for Ella... 

The global theme chosen for this years Down's Syndrome day is 'lots of socks'....

And there are many different ways people are planning to raise money and awareness...wearing wacky socks, extra socks, silly socks, socks on the ears, socks on the hands - you get the idea.  

We have decided to ask people to wear odd socks and donate a few pennies to raise money for our local support group.

This is my own interpretation of the 'socks' theme...

Socks don’t have to be the same to be worn together... The idea of the day is to celebrate difference, promote inclusion and to have a bit of fun. Regardless of colour, pattern, material or size, socks are actually more alike than different. And the same goes for people too.

'Socks' also tie in very nicely with Ella's newly acquired walking skill (even though she is barefoot in the pics!)...

Here is our poster for the day:
I would also like to ask that if you do take part, if you wouldn't mind taking a picture of you/ just your feet wearing the odd socks and sharing them with me. 

You can email pictures to with the subject line 'odd socks' or post them to our page on Facebook.  

I want to make a World Down's Syndrome Day montage/collage of people and their odd socks so by sending me your pic you are allowing me to use it for the purposes of the blog - thank you in advance!

So, Keep Calm & Get Your Odd Socks On!!

For more information you can visit the official World Down's Syndrome day web page:


Thursday, 21 February 2013

And she's off!...

Walking is now Ella's chosen method for getting around...

Our intrepid explorer

She's wobbly but determined and at the moment I'm grateful she wears a nappy as her poor bottom makes frequent contact with the floor.  The crawl remains her trusty back up - only put into action when she wants to make a speedy getaway (generally when changing her nappy or trying to brush her hair)...

She's been fairly confident walking short distances around the house for a few weeks now but less so outside. Or so I thought. A trip to visit Martin Mere last weekend allowed her to improve her confidence and practice walking in unfamiliar surroundings...

She did really well and walked most of the way round.  Getting her back in the pushchair was a battle of wills but her efforts were rewarded with beans on toast from the cafe.

With Uncle Henry & Granny

I don't think so...

With mummy, bump & Suz

Making a break for freedom!


And as the weather was so lovely, Ella was introduced to the off-side rule by Uncle Henry.  Her first footie training session!...

Even though Ella has begun letting go, my hand will always be there for her to hold and there will be many more treasured moments to come... 

So now I really do need eyes in the back of my head...

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