The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The night before - preparing for Little H's gastrostomy

I'm trying to pack.
But I keep stopping and starting.
To charge the camera.
To watch the jubilee celebrations.
To type this.
My mind is disjointed. 
Thoughts forming and being pushed away.
I am struggling to concentrate.

I have tried writing a list: it says nappies, wipes, pjs, eczema creams.  They are in the bag already. There are too many nappies. And too many pyjamas too.  I've packed his fireman Sam ones, but they might be a bit warm, so I've packed the bob the builder short ones, but they might be too cold, so I've put in the long Bob the Builder ones too.  It's like the goldilocks of pyjamas in that bag. 

I've reached the end of the list.  What now?

It's not like we've never been to hospital before.  But we've usually gone in a flurry of sirens and flashing blue lights.  No time to worry. No time to think. No time to panic.

This is different. I have to plan. I have to think. 

And it's in a different hospital. 
I know my local hospital. I'm familiar with the staff, familiar with the routines. I know where to find the sheets, where the toys are kept, where I can get a coffee. I know what I need to bring and what they'll already have.  
We've not stayed here before. I don't know what to bring.

Of course, it's in the centre of town.  There are shops. Even if it is a bank holiday. We are only 20 minutes from home. If I forget anything it's not the end of the world. 

But then it's not really the packing that's worrying me is it? But if I focus on that. And on getting all the beds changed. And on getting the ironing done. And on mopping the floors.  And on making sure the camera is charged. Then I won't think of anything else.

And wont think 'what if ...'
And I won't worry about the anaesthetic.
And I won't hear the seizure monster threatening his return.
And I won't notice the sick feeling weighing heavy in the pit of my stomach.
And I won't remember that my sister died during a 'routine' operation.
And I won't notice how much my hands are shaking. Or how fast my heart is beating.

And I'll get the overnight bag packed. 
And I'll have such great big cuddles with my beautiful bundle of joy.

And tomorrow will come.

And this too will pass.