The parent room conversation I wish I could have had with Ashya's mum

December will mark 10 years of me riding the "parent of a medically complex child" roller coaster, I have seen a lot of things, been through a lot and I guess I can sometimes find myself in the position of sharing my experience and thoughts with other parents.

Often the best conversations I have had have been in the parent's rooms of children's wards, late at night when you try and have a few moments over a cup of catering tea, flicking through gossip magazines without really taking them in, your mind preoccupied and mulling over the day's discussions with the medical team.

Are you a clicktivist?

The Ice Bucket Challenge - that all went pretty viral very quickly didn't it?

One minute some sports people in the US are filmed pouring buckets of ice water over themselves  Then gradually videos appeared of people in the US doing the Ice Bucket Challenge for something called ALS.

Then suddenly one day, Bill Gates is getting in on the act, and the Beckhams and then it's everywhere.

Richard Dawkins & the danger of generalisation in 140 characters

You have probably noticed that I don't normally jump on the bandwagon when someone makes a crass comment about disability - I might send a tweet or two but that's as far as it goes, I tend to think the Cllr Colin Brewer's of this world are not the mass voice of reason and intelligence and only represent a minority.

But today I really feel the need to write about someone who commands a huge global audience and is well known for his reasoned arguments based on scientific logic.  Richard Dawkins is a respected scientist, Vice President of the British Humanist Association and Ethologist.  He is the author of many best selling books on Science and Atheism and commands a huge worldwide following.

I remember when...

I remember when you could walk

When you only had one tube

attached to a benign pump

when we dared to dream

about mainstream school

independence

sleepovers

a life of your own

when caring for you didn't need a nursing degree

or a 24 hour team

when we had hope

that you could just be a little girl

and not a patient

or a condition

or a diagnosis

now we just hope

that we can fill your time

with love and laughter

and take away the pain

I'd give you one.....

......and so would my children

We have had the conversation about what we want to happen to our organs when we die.

Have you?

Have you thought about it?

Have you discussed it?

Have you registered as an organ donor?

More importantly

Have you thought about what would happen to your child's organs if they were to die before you?

That's the tricky one isn't it?

They choose vanity, we choose life

This picture appeared on my facebook timeline this week....

I get a lot of medical pictures and information coming through my timeline, it's inevitable when you consider how medicalised our life has become.  But on closer inspection I discovered this is not a picture of two people on IVs in hospital.  No, this is the actor Ryan Phillipe and his girlfriend relaxing while having intravenous infusions of vitamins and fluids in order to give them an energy boost.

Take a stand for Daisy

Retard - that word hits me like a knife through the heart.  9 years ago it would not have.  I did not even know what the politically correct term to refer to what we now call learning disability was.  

I grew up in a time when  the word mongol for a child with downs syndrome, spastic for someone with cerebral palsy  were the accepted terms used by all.  In the playground we would let the words trip off our tongue without a second thought - spaz, thlid, mong.  It was the world we lived in at the time, we didn't really think about the meaning of what we were actually saying.

Thank goodness the world has moved on.  Thank goodness people took a stand and pointed out that these words were wrong, derogatory, insulting.

Make it so