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Saturday, 2 July 2016

Thursday, 16 June 2016

I'm not ok

This morning I wheeled Seth to the school bus, came back inside and then cried so hard I wretched.

I get Seth ready for school in the mornings: carry him to the toilet, or assist him to walk there, and encourage him to use it while I get him dressed.  Then I carry him downstairs, or assist him to step down himself, to the kitchen where I feed him his breakfast in his wheelchair. His patience has improved and being in the kitchen helps so that I can talk to him as I'm microwaving his porridge (with added maple syrup and cinnamon), pouring his squash and drawing his meds.

He's really good at reaching for his spoon and I help him bring it to his mouth.  Sometimes he'll randomly slam his head back between mouthfuls.  Sometimes he'll let it all dribble back out but for the most part we enjoy this time together.  But once it's over and I'm trying to syringe in his epilepsy meds or offer him his drink then the real shouting and head banging often begins.

And I don't know why. I've tried getting him out of the chair for a cuddle but most of the time that just means he's screaming in my ear. I've tried leaving him to calm down but his head banging just gets harder until he's crying more because he's hurt himself. I've often got the door open to keep an eye out for the school bus and goodness knows what the neighbours think I'm doing to him!

The worst time is when he stops midway to chuckle before resuming his tantrum. Today wasn't the worst morning but it was the straw that broke my back. Literally - I actually pulled something when I was coughing and it's niggled all day.

This behaviour isn't confined to mornings, or me. Craig has it when Seth comes home from school.  And it wears away at him, too.

Normally I just shove it away and get on with my day, but this morning it stayed. I have felt sick, shaky and tearful all day. The recent harrowing events in Orlando and now in Yorkshire are not something to be shrugged off either.

And then I realised how important this blog had been for me and what an emotional outlet - therapy no less - it was. So I am going to make more effort to post regularly and lift some of this sadness that is weighing me down.