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

Do I inspire you?

I heard this week that my blog has been shortlisted in the the Inspire category of the equivalent of the the blog oscars, the Brilliance in Blogging Awards or BiBs (some of you may remember that two years ago I reached the final of these awards).

Another brick in the wall

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support for special education needs - that's 3 out of four of our children who learn differently, who need support to help them access education and achieve their potential.  Realistically though it should only be one of my children who needs this extra help - Daisy is the one in special school with a learning disability, visual impairment and highly complex medical needs which limit the time she can spend in school.  It's completely logical that she should have a statement and funding assigned to her to help her reach her potential.  But my boys, differently wired, with their own unique learning styles, they have high IQ's, they are eager to learn, they just learn differently - the way they do things, their idea of success and achievement, it's totally out of kilter with our modern day, sausage machine education system.

...with a little help from my friends

This Sunday I am running the London Marathon again.  I ran it last year thanks to a golden bond place from ShootingStar-Chase, Daisy's Hospice.  Those people who know me well and follow this blog know that running is my thing, it's my way of keeping sane in this crazy world I live in.  Last year I  raised lots of money for our hospice when I ran the marathon, it was a way of giving back for everything they have done for our family over the years.