Tuesday 19 March 2013

MAD March!

March is always full-on in our house as all three of our children celebrate their birthdays (yes yes I know...don't ask!) as well as numerous other family members and friends so our feet never get chance to touch the ground. As far as the kids birthdays go we are two down with just Joe to go! Our eldest, Harry has now hit double figures whilst Rosie celebrated her second birthday last Friday.

Then to add to the March MADness I received the amazing news that The Future's Rosie has made it down to the last five in two categories for the MAD Blog Awards 2013. This came as a complete surprise to me, especially considering the remarkable writers I'm listed amongst. There have been no less than 65,000 nominations which may help explain my shock! The blog sits in the final for 'Blog of the Year' (chosen by a panel of judges) and 'Best New Blog' (down to public vote)...

So I guess this is the point where I put my head in my hands, peep through my fingers and cringe a little whilst requesting your vote in the 'Best New Blog' category. If you feel you'd like to vote (whether for myself or somebody else) you can do so by clicking on this link: www.the-mads.com Voting closes on March 26th with the winners being announced in September at a swanky do somewhere in London.

Making the finals alone has helped raise the profile of The Future's Rosie tremendously which in turn increases the chances of it reaching those who can benefit from reading an honest real-life perspective on raising a child with Down's syndrome (thinking anxious new parents) – I feel content with that as my 'prize' regardless of whether I take home an award or not and I would like to thank each and everyone who nominated and helped push The Future's Rosie further out there.

Now back to the real star of the show...

...Budlington has finally shrugged off her lingering cough & cold and is back to her mischievous best. Just the other day I came into the living room to find her investigating the mock coals on the gas fire, unsure how to react for the best I abruptly said, "Rosie no! You musn't touch those", she spun around in a flash, tossed the evidence aside and proceeded to try and babble her way out of the situation (see video below). It's taking us a while to adjust to the reality that Rosie doesn't stay put anymore since truly mastering the art of the bum shuffle. Time to reassess the house for potential hazards and install the fire guard again!

I still can't believe that Rosie turned two on Friday, so much has happened in her short life which has made the time fly by so quickly. With myself being at work and the kids at school we decided to celebrate properly on the Saturday by inviting close friends and family over and as per usual Rosie was on top form spearheading the entertainment – at one point she had all of us completely captivated with her rendition of 'Twinkle Twinkle Little Star' – a real moment to cherish!

Finally, March 21st (representative of Trisomy 21) is now officially recognised by the United Nations Assembly as 'World Down Syndrome Day' and this year people are being encouraged to wear lots of brightly coloured odd socks to raise awareness and get people asking questions, so I sign off by wishing you all a very Happy World Down Syndrome Day for Thursday!

Oh and erm yeah – please don't forget to vote :) x

Monday 11 March 2013

Bionic Boy

Today I'm taking the unusual step of writing a short post that is not about my darling girl but about a very special family and their baby boy who sadly passed away a little over three weeks ago, aged just 13 months.

I've been unsure how best to approach this – knowing I could write a books worth of words about this family and their Son yet I feel it really isn't my place to. What I am sure about is that I wanted to write something, such is the impact and influence they have had on me since we became friends. Although many of you will know them I've decided to keep it anonymous.

I've shed many tears in the last three weeks not only for our friends loss but also for everything that their little boy endured in his short but valuable life. No matter how big or how many hurdles he faced in the early months he would always find the strength to give his Mummy and Daddy a reassuring smile and after breezing through such a major operation early in his life he became fondly known by us all as the 'Bionic Boy'. He was, and absolutely still is such a special boy who touched and continues to inspire the many people who knew him.

My life is full of memories, some great and some less so – there are however only a handful of experiences that are so poignant I know they'll stay etched in the forefront of my mind forever. I had one of these last Tuesday at the beautiful funeral 'service of celebration' of our friends little boy.

Never in my life have I witnessed such a display of strength and courage as I did when I saw his Mummy and Daddy stand next to him at the front of the large gathering of family and friends to say a few words. Daddy stood first, composed himself and made a truly moving speech before Mummy got up and read him his bed time story. They both did themselves, but above all their Son so proud and words simply can't do justice to the overwhelming sense of awe and respect I have for them.

Their constant ability to find an inner strength, to conduct themselves in such a selfless manner and remain so positive at times when the rest of us were screaming mercy for them has been utterly remarkable.

I hope it's of some comfort to our friends to know that their Bionic Boy will live on, not just in their hearts but in the hearts of all those that had the priveledge to know him, from immediate family right through to online communities.

This little light will certainly shine on and continue to guide me forever.


Thank you to our dear friends for their kind permission to share this post.

Sunday 3 March 2013

STOP PRESS! Child model found drinking

As a result of Rosie's recent modelling for the kids fashion boutique Ten Little Monkeys we were asked if she would like to participate in a photo shoot of child models with Down's syndrome with the aim of creating a striking image to publish in the press that would help raise awareness and promote equality/inclusion within advertising. We met at the Langdon Down Centre in Teddington which is the Theatre wing of the old Normansfield Hospital where John Langdon Down lived with his family and pioneered his work into people with learning disabilities. It is now home to the Down's Syndrome Association and Down Syndrome International.

It was an emotional day for many different reasons. The shoot itself was in the Normansfield Theatre which was truly awe inspiring – it has to be up there as one of the most beautiful profound buildings I've ever set foot in. I stood in the middle of the theatre and imagined a hundred or so years ago people with DS being allowed to perform and express themselves at a time when having DS basically meant being hidden away and excluded from society. The shoot also allowed me to meet some truly inspiring people – many who, along with their families have been a great 'virtual' support to myself and Karen.

The photo along with a short text about each child model featured in The Sun last Wednesday. Some people may raise an eyebrow at the fact it appeared in this red top newspaper and I must be honest I was a little apprehensive myself as to how it might come across, however the fundamental task here is to raise positive awareness so the fact it made the biggest selling national newspaper in the UK should be seen as a huge positive.

Since returning from our family jaunt down to Teddington, Rosie has been rather under the weather, it's nothing serious just a bad cold with high temperatures and sticky eyes thrown in, but it has been taking her a while to throw it off. It does of course mean that seriously long cuddles are on the menu which is always a tremendously selfish positive for me! Although she's been unwell of late it hasn't prevented her from making more progress – in fact in this instance it's actually helped her...

Rosie's renowned for being lazy with her hands so we know that extra effort (and patience) is required in order to help her with hand related achievements. One we've focussed on has been encouraging her to hold her own cup and drink from it. In previous attempts she normally throws the cup away in anger and disgust that she might have to actually do something for herself – having two older brothers who dote on her means she's quite used to having everything done. As a result of being unwell she has been drinking copious amounts of water and juice. This morning she was so thirsty and after throwing one or two paddy's she eventually cottoned on that if she really wanted a drink she was going to have to do it herself, we watched as she eventually held the cup with both hands and took her drink. Which resulted in a rapturous family applause!