Tuesday 24 September 2013

MAD Night

I'm stepping slightly out of my comfort zone here as it's not my usual post about Rosie and her achievements, it may also be my longest post ever so bear with me!

Friday 20th September was the annual MAD Blog Awards held at the really rather posh (but friendly) Royal Garden Hotel in Kensington. What can I say... Wow what an amazing night! In fact the whole lead up to the evening has been a great experience. I feel honoured to have been on the 2013 finalists ride which has left me well and truly spoiled.

Those close to me will know I was really anxious about the prospect of being in a room full of extremely talented writers and in the case of the 'Outstanding Contribution' finalists – amazing selfless people who give up so much of their own time in order to help support and campaign for so many others.

So there I am all suited and booted in my very swanky hotel room trying to pluck up the courage to leave for the champagne reception where I was led to believe the women outnumbered the men about 20 to one! Eventually I 'manned up' and strolled out with confidence, I'd been through the scenario in my head 100 times in the weeks leading up to tonight. I entered the lift, composed myself, took deep breaths and as the doors opened I strolled out with a swagger so uncharacteristic my wife would have either been gobsmacked or in stitches (I think the latter). I was happy with 'new me' and strolled into the bar ready to take on the world....but wait...where was everyone? It was almost empty... wrong bar!  New confident Tom bolted for the nearest exit and I was left with old me scratching my head at how I'd already made a fool of myself without even meeting anyone!

Having not been to anything like this in the blogging community before my biggest fear was not knowing who was who and offending people as they introduce themselves and I look blankly (this didn't materialise thankfully).

Once I finally found where the reception was (it wasn't complicated it was just usual silly me) I immediately bumped into Hannah (Mama Bear With Me) who I had met very briefly at the Legoland day out. She made me feel at ease instantly as we raced through the champagne and although this was the only occasion we chatted on the night I feel I made my first blogging friend from outside the Down's syndrome blog community. Thank you Hannah for saving me from the dreaded billy no mates look I was inevitably about to sport.

I was (to the envy of most of the female guests) placed on a dinner table with our host for the evening, Dr Ranj (of CBeebies fame). Amazingly a tiny window appeared where he wasn't surrounded by swooning women and I took the opportunity to introduce myself. Discovering he is a fully qualified doctor of medicine I spoke to him about the often negative way news of a Down's syndrome diagnosis is delivered to new parents, like our case where the consultant tried to steer us towards terminating our pregnancy with Rosie. It was really interesting to hear the 'off the record' opinions of a professional doctor and whilst he wasn't surprised by our story he certainly appeared in favour of bringing change to the way news is broken and immediate after care. It was a real pleasure to meet him and I'm grateful for his genuine interest in my story with Rosie.

So to the awards...

I couldn't believe it when The Future's Rosie was read out as the winner of 'Best New Blog', especially in light of the quality blogs I was proudly sitting amongst. As soon as I got on the stage to accept the award I immediately realised why I'm not in a job that involves public speaking. I was stunned into silence. In my head (as I think back) I'm almost sure what I said made no sense and went along the lines of, "Erm [nervous chuckle], voted, erm thanks, Rosie, nominated, Thanks"

Now with the benefit of hindsight I wish I'd managed to say something that at the very least made sense, it might have been something like:

"I'm actually still pinching myself that I am here tonight at all, let alone stood here collecting an award.

Thank you to every single one of you that nominated and voted for The Future's Rosie.

Thank you to Sally and the MADS team, Parentdish and all the sponsors that put on such a great night.

Thank you to John Lewis for providing me with a personal shopping experience and sponsoring my suit and for Anna (JL Cheadle branch) for making me look vaguely presentable for a change.

Thank you to everyone who reads, shares, supports and recommends my blog to those who might find it offers genuine support and hope.

Thanks to my friends and family, my sons and amazing wife – who is very much in the background of all that is in the public domain with TFR. She is my constant rock, the person who listens, who tells me to keep going in the frequent times I want to throw the towel in and stop writing. I love you babe.

I reserve my biggest thanks of course to my little Bud, Rosie, for changing the way I see the world and for giving me the inspiration and confidence to start writing – the ability to put my deepest feelings down and share them with the world without a care for how it might effect my 'alpha male' status. Rosie I love you, I can't ever find the words to express just how much and I wouldn't change a single thing about you."

....on second thoughts that might have been a bit long winded for an acceptance speech?!

Blog of the year went to the very deserving Mammy Woo. I was extremely touched that she gave a mention to TFR in her acceptance speech before dedicating the award to Jennie at Edspire, who was the deserved winner of the 'Outstanding Contribution' category. Please read her inspirational blog here to find out just why.

All the 2013 finalists and winners are listed here.

Tuesday 17 September 2013

She's still standing...yeah yeah yeah!

This coming Thursday see's the second anniversary of Rosie's life saving open heart surgery at Alder Hey Children's Hospital. It's always hard emotionally thinking back to that time. Equally it's vital that I don't allow the experience to become nothing more than a distant memory – such was the importance of the operation, without which we wouldn't be able to celebrate all her amazing achievements. Last year, on the first anniversary we received a lovely card from our friends Amy, Ian & Ella which simply said, 'Happy Heart Day' – I've always loved that and shall remember the day with this phrase each year.

You can read my account of the whole experience here: Rosie's surgery

So back to 'today's' Budlington...
It's usually the case that Rosie will achieve something new, I'll excitedly write a post about it then she'll not do it again for months. However, on this occasion I'm really pleased to say that since my last post, Rosie is still going strong learning to stand up and strengthen her legs. I'm very proud of her efforts which in turn are pushing my fears of her never walking further away each day. There is such a long way to go yet but here we are a couple of weeks on and the novelty is yet to wear off!

She's still standing...yeah yeah yeah!

From here...

...to here in just under two years! Our little hero.

Sunday 1 September 2013


Just a quick post with some new achievements in the land of Budlington! There have been three significant advances since I last wrote.

In a recent post I mentioned about Rosie learning to throw and catch in the garden…well Karen has been encouraging her to go a step further by introducing speech into the play by saying , 'Ready, steady, go!' In the past week or so Rosie has begun to repeat it back before she throws the ball which is brilliant. Okay so she can't exactly say the words but she is making the right noises, it's more 'Eddie, teddy, dooooooe!' but its great progress all the same. The first video below shows her in full action.

After months of receiving cuts and scratches from Rosie clawing at our faces I think we've finally broken through to the other side and her quick grabbing has turned to a much more affectionate stroke of the cheek whilst saying, 'Ahhhhhh' and giggling. We still get the odd swipe after but it's certainly getting less and less – it's one of the few things she's learned that we'll be glad to see the back of! We may well be entering a biting phase but for now we're happy to see a positive change!

Finally and maybe the best of the lot, last week saw a major breakthrough in an area of Rosie's development that causes me a lot of anxiety. The fact she's very hyper mobile (over flexible joints due to low muscle tone) means getting her to stand up unaided is taking an awful lot of time and effort with very few signs of progress… until now. Karen had placed Rosie in her cot whilst she went for a shower and when she returned she saw Rosie pulling herself up and poking her head over, managing to stand upright for a few seconds at a time. Her legs weren't perfectly straight and her feet required the side of the cot to push up against but she tried and she succeeded which was a moment of huge joy for us. Karen encouraged her to carry on and caught the moment in the video below. She has an awful long way to go before she is even attempting to walk but this has given us real hope that with constant support and exercise we may just be able to take a step further to believing it will happen one day.

Ready...Steady...Go! from SwissBaldItalic on Vimeo.

Get up stand up from SwissBaldItalic on Vimeo.