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…

What do you see when you look at me?

When I look at my son
I see perfection.

The smile that lights up his face,
The twinkle in his eyes,
The little gap between his teeth,
And the way he sucks his fingers.

I see his long eyelashes,
And the mop of unruly dark hair
That sticks up in all directions,
No matter how I try to tame it.

I see the blush of his cheeks
Against his pale white skin.
I see his little button nose
And the tiny barely-there freckles.

I am filled with love and joy and pride for this beautiful child that I created.

What do you see though? 
What do you see when you look at my boy?

Do you see the way his eyes never meet mine
And his vacant stares?

Do you see the weakness in his body,
The supports and restraints in his chair
To hold him up right, to make him sit, to keep him safe?

Do you see the feeding tube? 

Do you see the oxygen?

Do you see disability?


Open your eyes and see.
See my boy.

See my son.





I am linking this post into the Mumsnet 'This is my Child' campaign which aims to support the parents of children with additional needs by busting a few unhelpful myths  - and to open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.



Comments

  1. Crying watching this - it's just like seeing my special girl when she was small, all over again xx

    ReplyDelete
  2. Oh, how lovely! You must be so proud of the boys. I love the way Little H's face lights up, especially when he's following his older brother on the bike. :) xx

    ReplyDelete
  3. Thanks Michelle & Blue Sky. Yes, I am so so proud of both of them. xxx

    ReplyDelete
  4. ooooh that smile is infectious, you have two lovely boys xx #thisismychild

    ReplyDelete

Post a Comment

Thanks for taking the time to read and comment.