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 School Bus

It’s not that I don’t realise that my son is disabled – he’s five years old and still can’t sit up, it’s certainly not what you’d call a ‘hidden disability’, but I just see Hugh.  I have two beautiful sons, just 14 months between them – I don’t look at them as ‘the older one with glasses’ and ‘the small one in the wheelchair’, I just see Sean and Hugh, my two boys.  Every so often though, it hits me again, and I’m reminded of Hugh’s disabilities.
 
It can be little unexpected things that get me, that remind me that life is a little ‘different’ than I expected; two brothers playing football in the park, a newborn baby holding his mother’s gaze lovingly.  Such little things that are everyday occurrences for most people pull at my heart strings and remind me what life could have been like – the life I expected, the life I don’t have.

The School Bus
Then there’s the more brutal, slap in the face kind of reminder – the day the huge hospital bed was delivered, Hugh’s first time in the gaudily decorated torture device also known as a ‘standing frame’ and then today, this – the school bus.


I was prepared to be upset though, I expected it. 

When Hugh was a few days old and I imagined walking to school hand in hand with my two sons, I didn’t anticipate that I’d be shipping one off to special school in a wheelchair.  I’ve resisted sending him on transport for nearly two years now, preferring to drop him off and pick him up myself. I’m lucky that his school is close enough to do that and with a bit of rushing and the more than occasional late mark, I’ve managed to get two children to two different schools.  But I’m trying to get back to work myself now and to get three of us to three different schools before 9 o’clock is pushing it a bit.


"Is the bus here yet, Mum?"
Hugh was dressed and ready in his chair well before the bus arrived, unusually happy given the time of day (he’s not really a morning person).  His bags packed we waited anxiously – or rather I waited anxiously, Hugh chilled out and Sean watched TV. 

We’re on a busy road and the traffic was almost at a standstill as the tail lift on the rear of the bus lifted Hugh and his wheelchair on.  The cars full of parents inched by, watching as Hugh was loaded on.  Memories of the cruel taunts I remember being used in childhood about *those buses* and the people on those buses – you know the ones!  I won’t repeat them.  I wondered if that’s what people saw as they passed.

I saw Hugh smiling out of the window excited about the new sensations and the new experience.  I saw my son going to school on a bus along with two of his class mates, just friends travelling to school together. 


And I didn’t cry. 

But as I took my eldest son’s hand and walked him to school and I watched the brightly coloured bus carrying my youngest son turn the corner out of sight, I admit there was a lump in my throat.


"Bye Mum"




Comments

  1. Wow, this is a huge step! I wouldn't have blamed you at all for crying. Well done for getting everyone off to school on time. You mention people jeering at the disabled bus. I think that people are more understanding and kind these days. I hope so anyway. x

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    1. Thanks Suzanne. I do think people are more accepting than we were as children. I think we see disability around us more and o are less scared

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    2. *so are less scared/ignorant of it. I certainly hope so anyway. Luckily we have never been the victim of any rude comments, people have always been very kind and friendly towards Hugh thankfully.

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  2. These reminders can be so tough! Like you say, we all live our own version of 'normal' and sort of forget everyone else isn't doing the same. Well done to all of you. Hope Hugh had a great day!

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    1. Thank you, he absolutely loves the bus thanks V xxx

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