They said you wouldn't make it

They said you wouldn't make it

the doctors, the medics.

They said go home, enjoy your time.

And what do you tell the children?

So how do you tell your children that their daddy has cancer?  How do you tell them that it's advanced cancer and he will need a huge regimen of chemo, surgery, radiotherapy, more surgery, more chemo?

And what about when one of those children has a learning disability?

We don't need Cancer to remind us to seize the day

There has been a big gap since my last post.   I have had a post in draft for a while, one about the arrival of our lovely little cocker spaniel puppy Pluto and how he has turned our world upside down and had such a huge impact on our family.

But along came something that turned our world upside down even more, and has had a bigger impact on our family than we could ever imagine.

Andy, my brilliant, opinionated, insightful, clever, rock of a husband has cancer.

And the world as we know it will never be the same again.

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?