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
www.the-mads.com

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.

xxx


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

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!

A letter of love to my baby girl

Today is the first anniversary of The Futures Rosie. I had wondered how best to mark the occasion. Perhaps I would write a recap of the year, highlighting the major moments? Maybe do a photo montage of the best bits? I couldn't ignore the fact it fell on Valentines Day so settled on writing a letter of love to my Budlington explaining my reasons for starting The Futures Rosie and thanking her for inspiring me to do so. I'd also like to thank each and every one of you for your continued support this past year, it really is your encouragement and willingness to share that brings the blog to the attention of those that can benefit from reading about Rosie (thinking back to myself as an anxious parent two years ago).

A letter of love to my baby girl...

Dear Rosie,

I've never been one for writing, in fact rarely do I even make time to read, but then you came along and brought out a side in me I never knew existed. Without your inspiration I would never have known this joy of being able to share my love and affection for something so pure, so innocent and so beautiful – that 'something' my dear is you. See I started writing my blog because the feelings I had when I first learned of your extra special chromosome were so very new to me, I felt a little bit frightened at times to be honest because I didn't really know anything about Down's syndrome and the special powers its given you. There were also feelings of overwhelming protection (those ones will never ever go away) and all this before I had even laid eyes on you. Then you came into my life and changed it forever and for the better too. I wanted to let others know how your extra little chromosome is nothing to be afraid of, how very precious you are, how you have this amazing ability to make everyone smile, how you have fulfilled (over and above) my dream of adding a daughter to our wonderful family.

I consider myself a very lucky Daddy – so proud I am that I sit here writing my feelings down without being afraid to tell everyone, you may learn when you're older that it's not always the easiest thing for a man to do, but with you by my side I don't really worry about that anymore. You have taught me so much about myself, brought out a confidence in me that has been hiding away for years. 

I won't ever be able to thank you enough for all you have done for me, all that you have taught and continue to teach me, BUT I can promise to do everything within my ability to raise, protect and help you realise any dreams you may have for the future. You see Rosie, contrary to what some people may think or even sometimes say, you can (and most likely will) achieve anything you want to.

All my love.
Daddy. xxx

Ten Little Monkeys

It's been another busy couple of weeks since I last wrote a post, it has been 'exciting busy' though with the stand out highlight seeing Rosie doing a spot of modelling for the award winning Kids Fashion Boutique Ten Little Monkeys in Wilmslow, Cheshire. The pictures will be used on their website and possibly in-store too to help promote the new seasons range.

The whole thing came about via a Facebook comment a few months back. Emma, co-owner of Ten Little Monkey's, is an old friend of mine from school and as is so often the case these days we have kept in contact through Facebook. Emma had made a comment on a picture I posted of Bud, remarking on how beautiful she was. I returned a jokey message saying "maybe she should come and model for your shop one day :) ..." Emma responded with "yeah why not? I'm all for that!" I was taken aback a little at first and then thought about how exciting an opportunity this could really be in the promotion of inclusion and raising positive awareness. As many of you will already know this is already happening with the likes of M&S, Frugi, JoJo Maman Bebe, Boden, Next, Weird Fish, The Eden Project and Eureka Museum etc all including children with DS in their advertising and without making a big song and dance about it either which is why I take the opinion that it's genuine inclusion and not exploitation. It is a fine line granted and as a parent you ask yourself these questions over and over but I feel it is a real positive leap forward.

I was encouraged by recent conversations where I'd asked people if they had seen Seb, the little boy in the M&S Christmas advert who has Down's syndrome – many of responses were, "yes I've seen the advert but I didn't notice a boy with Down's syndrome?"... That right there is huge progress, the kind  that needs building on and I don't just mean inclusion of people with Down's syndrome I'm talking every aspect of disABILITY, we need to continue the fabulous work already being done by the likes of beautiful Natty G and the fantastic exposure and legacy left by the London Paralympics to stand a chance of permanently changing the way we as a society view disABILITY.

The shoot itself went really well, Emma made us feel instantly at ease and was so good with Rosie throughout the session, which lasted about an hour. We received the first pics a couple of days ago for us to approve and we couldn't be happier. In a couple of the shots I noticed Rosie's tongue sticking out and for a moment was foolishly concerned that this wouldn't be ideal for promoting inclusion, a little flashback to my own pre-Rosie ignorance raising its head perhaps...Anyway I mentioned it to Emma and this was her response:

"I didn't mind her tongue being out as I like that it captures her. I like all of the images and am happy to use any as it is who she is. I'm about people looking like they actually do look. For me the DS is part of what makes her her and I don't see any negative connotations to this. That said I won't use them if you don't like them but I think she looks lovely in all of them. totally your call."

I still get a bit emotional when people see Rosie for who she is and not a diagnosis and Emma's response above was no exception.

I have included the shortlist of shots below with the kind permission of Ten Little Monkeys. Please do take the time to visit their website to see their wonderful collections, Rosie's pictures will be making an appearance in the next week or so.

www.tenlittlemonkeys.co.uk

www.facebook.com/tenlittlemonkeys

New Toys New Achievements

It's been a while since the last post about Rosie as I've been wrapped up in the festivities and the more recent not-so-exciting return to work. I did contemplate sharing a post about our Christmas but decided I would keep this one to myself, it was such a special time for us celebrating altogether for the first time and truth be told I'd struggle to do it justice with my basic writing skills!

Having been thoroughly spoiled by everyone, the year started with plenty of new toys for Rosie which in turn has brought fresh challenges. One of her favourites is a drum – she loves the sound of the banging and puts a lot of effort into ensuring a good contact is made thus maximising our headaches! It's quite a large drum in comparison to Rosie and requires her to be sat slightly higher which ties in perfectly with the chair/stool supplied by her physio before Christmas. The movement used to bang the drum so energetically from a seated position means she's putting extra weight on the top of her legs and using muscles to counter balance without really realising. Playing with the drum has also shown a mini step forward in her co-ordination as she now manages to hold and hammer both drumsticks without dropping them.

I'm not sure how best to describe the next toy other than calling it a 'helter skelter giraffe type thingy'. The idea is to pick up the different coloured balls and place them in the Giraffe's mouth and watch them spin around it's neck back to the bottom whilst it makes one of those noises that only childrens toys can, you know – the type that drives you crazy after two goes. After much brotherly encouragement she is now able to pick up the balls and place them unaided into the giraffe's mouth. and quite rightly gives herself a clap at the end too!

Watching the three of them play together is brilliant and it's moments like these I really treasure knowing they won't last forever. I realise it's no revelation but Rosie, as with many younger siblings really does pick things up quicker with the boys encouragement as she loves to copy them.

Finally and arguably her most treasured gift was (brace yourselves for this because toys don't get much more exciting)...

...a silver scouring pad!

A tad random I know, however Karen had taken her to a sensory session once and within the box of items to explore was one of these and she absolutely loved it, it sparkles and has a rough texture which keeps her entertained for ages and will stand her in good stead for when she's old enough to wash the pots!

Finally, I have included a short video clip which provides evidence of our brilliant Bud becoming independently mobile. This is a remarkable step/shuffle for Rosie who has proven very lazy in her previous attempts to move, the only time of note was an attempted crawl backwards ages ago which she never did again plus the more recent encounter with the Christmas tree which also proved to be a one-off. This weekend however Rosie began to bounce a little at first and kept trying until the bounce became a shuffle and now there's no stopping her as she realises those items previously out of reach are now there for the taking!

Highs, Challenges and Hopes

This post forms part of a Blog Link and aims to answer three questions asked by Hayley at Downs Side Up...I said I'd have a crack at answering them so here goes... (Please bear in mind my answers will be relative to my life with Rosie and as a new blogger. Lets face it I'm sure you're not that interested in who I hope will win the Premiership this season or that I fulfilled a dream to finally see the Stone Roses play live!).


1) What was the high point of 2012 for you?

This is a very tough question! There have been SO many highs this year that to pinpoint one seems unfair to all the others. For starters every single new achievement of Rosie's has been so exciting we've celebrated them all with such immense pride.

Finally plucking up the courage to write my feelings down and start The Futures Rosie back in February has been a major positive too, without which I probably wouldn't have the contact I do now with a whole world of wonderful and inspirational people.

There's also the amazing moment we were told that Rosie's brothers (unbeknown to us) had stood up in front of the whole School and presented a talk about Down's syndrome. Read more here: Blown Away

Then there was the incredible moment my Mum (65), Sister and I, hand-in-hand crossed the finish line as team 'Running for Rosie' at the Manchester 10k. A huge final total of £4113.61 was raised for The Down's Syndrome Association and RMHC Alder Hey. Read more here: Running for Rosie 10k

As Christmas 2011 was spent in hospital with Rosie I think it would only be fair to say the ultimate high point for 2012 came when we finally spent our first Christmas altogether as a family at home (words simply cannot describe this feeling).


2) When was the most challenging thing, the part that tested you to your limit?

The year has been pretty kind to us on the whole so nothing has tested me to the limit as such. The third and longest stint in hospital for Rosie back in April became tough as it felt like a disruption too far for the boys, but complaining about hospital stays doesn't seem appropriate especially when there are people in far worse situations than we've ever been.

I did however find a very negative comment written about one of my positive awareness campaign posters particularly hard to deal with. I've had one or two comments from trolls before on pictures of Rosie that have been quite nasty but managed to rise above them. The comment on the poster however came from a parent of an older child with DS and deemed the poster 'dangerous' and 'unhelpful'. I don't want to dwell on it though as I did eventually overcome what was written after advise and reasoning by several close friends.


3) What 3 hopes do you hold dear for 2013?

1. That Rosie's recent run of good health remains.
2. That the groundbreaking positive awareness achieved in 2012 by everyone doesn't go to waste and can continue into 2013 with the same momentum.
3. If by continuing to write about my life with Rosie into 2013 can offer any form of support, comfort or hope to even just one new parent of a baby with DS then I'll be happy.

Wishing you all a very Happy 2013!