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?

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.

The right to be heard

Article 12 (Respect for the views of the child): When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account. (UN Convention on the Rights of the Child)



Daisy is constantly telling us about what is going on in her life, asking us to read books, singing, asking questions...she never stops.  Her mind is on the go all the time with all the things she experiences during the day at school, at home and out and about.  Yet Daisy doesn't speak - over the past few months she has been vocalising more and more and she clearly uses more and more words but for Daisy her main form of communication is through signing.  Her hands never stop, even in her sleep.  And when she is tired or unwell and cannot find the strength to vocalise her hands tell us what she needs.

This was a very early lesson we learned with Daisy - communication is not about speaking,  just because she cannot speak, does not mean she cannot communicate with us.  And it also does not mean that she should be denied the opportunity to voice her own opinion.