Friday 17 May 2013

Stand Down

Many of you will be aware of recent comments made by Councillor Collin Brewer regarding disabled children. I'm not quite as eloquent as many other campaigners when it comes to 'fighting the fight' peacefully and with dignity, so my contribution comes with the image below.

To be honest I've 'err-med and ahh-ed' about what I should do and I'm still not too comfortable with tarnishing The Future's Rosie blog with his story, however the comments made were so vile, disgusting and out of touch it simply couldn't be ignored. Anyone new to The Future's Rosie who may have come here looking for some positivity please rest assured that the views of this man are a minority – our desire to call for his resignation comes from the fact he voices these small minded opinions from a position of power.

I will remove this post when he resigns.

A good article outlining the events can be found here:

A petition to call for his resignation can be signed here:

Tuesday 14 May 2013

Upon Reflection

Firstly, thank you all for the lovely comments, advice and (in many cases) words of wisdom in reference to my 'What if...?' post. I was so touched by the response. When I first started The Future's Rosie I never expected it to reach much beyond family and friends so it still comes as a great surprise to me to have the support of so many – through the good times and the wobbly ones! Having taken the time to reflect I'm pleased to say that your words of support have really helped me bring things back into some sort of perspective again (for now at least).

Which brings me on (rather tenuously) to Rosie's latest achievement of recognising and responding to her own reflection...

Rosie often sits in front of the mirror in our bedroom playing with her best Bud – hours of fun they've spent laughing together, touching hands and generally doing exactly the same things. Then on Saturday morning something dawned on her, she took a baby wipe out of the packet next to her on the floor and began showing it to her friend in the mirror, touching the glass with it at first before eventually placing it on top of her head. She sat there for a moment with a slightly puzzled look on her face, then, rather than reaching out to the mirror to try and grab the wipe from her friend, she reached up removed it from her head, looked at it then placed it back on her head followed by a big belly laugh. We are almost sure this is the moment she discovered that her little friend in the mirror was in fact her own reflection.

Back in January Rosie had a sleep test done to monitor her oxygen saturation levels which are consistently below the level that they need to be when she's asleep. As a result of this test an ear, nose and throat (ENT) appointment at the hospital was arranged for last week. The ENT consultant suggested that the low sat levels are a result of her tonsils being too large. So we are now on a waiting list for an operation to have both her tonsils and adenoids removed. A simple half hour procedure by all accounts. However rather selfishly one of the first things that sprung to mind was whether or not I can face seeing her put to sleep again and put through any ounce of discomfort – it's ridiculous really when I think of all she's been through already but right now the thought of her being in any pain (even for her eventual good health) is still difficult for me to stomach. As I write this it dawns on me that the real reason for my anxiety is having those memories of her heart surgery stirred up again.

Rosie had her first physio appointment with her new therapist last week. Due to staff changes it's been a while since her last appointment and we were hoping to finally get rid of the medieval looking standing contraption which she hasn't ever taken to. In all honesty we haven't perservered with it as we perhaps should have, figuring she wasn't going to progress much if it distressed her. How wrong we were as it appears her leg strength and standing ability has, if anything, dwindled in recent weeks... Lesson learned. So we are now back to putting her in it daily for as long as she'll manage which actually seems less stressful this time and we're hoping to see improvements here soon.

Wednesday 1 May 2013

What if...?

I've been really struggling to find the motivation to write these last few days, 'writers block' I think they call it... a perfectly feasible explanation if I were indeed a writer but I'm not. I'm just a Dad who rambles now and then about his beautiful daughter – nope writers block it isn't. Perhaps I'm feeling the pressure to deliver some sort of perfect and profound post since becoming a MADS finalist?

In all honesty these are just excuses for why my train of thought has been knocked off kilter this last week or so. My mind has been stuck in a little rut consuming itself with those dreaded 'What ifs'... 

What if I don't ever get used to the inevitable stares from the ignorant corners of society?
What if Rosie can't ever walk?
What if Rosie attends school and she's the only person in her class not to get a party invite?
What if she's bullied and picked on by her peers and she thinks they are her friends?
What if name calling leaves a lasting mental scar on her and/or her brothers?
What if she becomes too dependent when she's older?
What if I become so protective it affects her ability to become independent?
What if I can't do enough to help her reach her full potential?
What if I can't afford the extra classes or development tools she could really use to her benefit?
What if she does need that further heart surgery in her twenties?
What if...and the list goes on.

I'd do well to remind myself of all the 'what ifs' that spun around my head before she was born that never materialised and seem so daft now like, what if I can't bond with her, what if friends stop visiting etc... 

This post doesn't really sit well with the blog title The Futures Rosie does it?! However I've always promised to be open/honest and this is where I am at this particular moment of writing. 
I hope to look back on that list above one day when Rosie's older and laugh, maybe even feel a bit silly for ever worrying about them at all but for now its something I'm struggling with a little.

You'll be pleased to know that whilst I've had a wobbly few days Rosie has carried on as normal. Her brilliant sense of humour shining through as always and illustrated perfectly in the pictures below in her new glasses. xx