Time is on loan – only ours to borrow
What I can’t be today – I can be tomorrow

And the more I see – the more I know
The more I know – the less I understand.

I’m the changingman…        -Paul Weller

There is something about the lyrics of Changingman that speaks to me and the journey we are on with Charlie.  I spend hours and hours reading and researching potential therapies, learning principles of science like neuro-plasticity,  watching videos of practices- all things that might help my boy.  ‘And the more I see – the more I know. The more I know – the less I understand’ seems to describe a little of the helplessness I feel.  It seems the more I learn about things, potential improvements that could be made for Charlie, it brings home how little of it I can apply- the limited opportunity I can provide to bring these changes about.  Working full time means I can not spend the time required to do all the things I think I could do.  This often makes me feel like a bit of a failure but worse I think it sometimes makes me forget I am Charlie’s Dad and not his therapist.  I’m sure many parents feel the responsibility to do right by their child- I just don’t know what that is…

I sometimes feel guilty about doing things for myself- reading a book I like, watching an action film, anything that doesn’t relate to Charlie and his problems.  But Charlie doesn’t need a boring scientist constantly battering him with prods, squeezes and equipment; he needs cuddles and kisses and Peppa.  Lou needs a husband who doesn’t bore her with theory but one that can gossip and have fun.  I’ve lost mine- this journey is one that coupled with my addictive-personality type has meant I have been consumed as I am sure many parents with children with any type of disability have.

‘Time is on loan -only ours to borrow’.  I think I sometimes forget that I will only get Charlie’s childhood once- I often think I have a deadline ‘I’ll get him walking before he’s 3‘, then ‘I’ll have him walking before he goes to school’. This is unnecessary pressure- placed by no one other than myself.  Charlie will get to where HE is going when HE is ready- all I can do is facilitate and support HIM.  He is not a project and I must not see him as such- he is the son I adore, not just because he is my son but the determination HE has to succeed!


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