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…

Tonight We Have Respite

Tonight we have respite. 

And while Hugh is cuddled and cared for by competent nurses, trained in every aspect of his care, Sean gets the undivided attention of his mum and dad . Together. Not one, or the other, while someone deals with Hugh, or feeds, or medications.. Both of us. Together. Just for him. 

On account of a brilliant First Ever parents evening, we took Sean out for a meal - to a local curry house; where they make a fuss of him and bring him sweets and where we'd never be able to get Hugh and his massive chair through the narrow door,up the teeny tiny corridor, round the tightest of corners to the jam-packed restaurant full of tables and chairs and customers. And we ate and we laughed and we ate some more. It was lovely.

And tonight, I can go to bed at whatever time I like (it will be early!) - not at midnight because Hugh has decided (again) that sleep is for losers. I can close my bedroom door without worrying I'll miss an alarm ora pause in breath. I can sleep, without the fear of seizures, or choking on secretions, or his latest trick- sleep apneoas. I won't wake until morning, not having to get up 5 or 10 or 15 times to re-set alarms, do chest physio or put Hugh in the recovery position to aid his breathing.

And Sean won't be woken in the middle of the night by the screech of alarms, or early in the morning by the sound of his brother's crying.

Tonight I didn't have to mix feeds and weigh powder and draw up medication into syringes. I didn't put on creams for eczema, tape sats monitors to tiny kicking toes or switch on the video monitor.

Tonight is a break or us all. 
It is respite. 
A break away from the routine.

Which is good. 
And important. 
And necessary.

And ten miles away, my baby is in a bed, in a room, in a hospice, on his own.

While his family ate and laughed together, a nurse bathed him and put on his pyjamas.

While we sleep, a stranger comforts him in the night.

Respite is good, and necessary and important.

But tonight, before bed, I could only kiss one of my babies goodnight. 
And that doesn't feel so good at all.


  1. Hugs Emma. You sum it up perfectly. It is important and necessary but its bloody hard and feels so not right xxxx

    1. Thanks for commenting Jude. Exactly/ I know it's a 'good thing' but it feels hideous.

  2. Hugs Emma. you sum it up so perfectly. Respite is important and necessary but its bloody hard and never feels quite right xxxx

  3. Hugs Emma. You sum it up so perfectly. Respite is important and necessary but its so bloody hard and feels so wrong :( But it is important and necessary xx

  4. Your bittersweet post brought tears to my eyes (again!!)but just keep thinking of the memory Sean will have of that special night out with his mummy and daddy. xx

  5. I know Michelle. And it was a lovely night- Sean really enjoyed it. He misses him too mind you. He even asked if we could take Hugh with us next time! But it is good for him to have that time with us on his own, and its good for Hugh to get used to other people caring for him.

  6. I know exactly how you feel - as I read this, Smiley is in respite and I too will be going to bed early, but the house seems very quiet without her xx

  7. Hope you get a good night's sleep xxx I guess it will probably always feel a bit 'wrong', bt you learn to live with it xxx

  8. it is a tough life xxx

    1. That's life though I guess James' mum. There's worse than this and I'm blessed to have him back home again with metonight


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