Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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.

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