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…

Drum Roll Please ...

When babies reach for themselves in the mirror or bat at toys, you don't even think about the thought process and control of movement that goes into it- you take it for granted as just another stage in their development. But when your child struggles, you start to see the miracle that these simple achievements are.  

I remember about a year or 18 months or so ago watching a video of a friend's son playing with a toy drum. He's a similar age to Hugh and developmentally delayed as well. I was delighted and amazed at how he'd reached and used his hands intentionally to hit the drum, smiling then at the loud noise that resulted from his actions. I couldn't imagine Hugh ever doing that- it seemed too big a step for him. He had (has) limited control over his movements and his vision is so poor that seeing and then reaching for objects seemed nigh on impossible.  It also takes a level of cognition I wasn't sure was achievable- a simple understanding of cause and effect; the ability to formulate an idea in the brain and then work out how to do it before finally telling and making your limbs cooperate.

Then one day, Hugh found his hands. He loves his hands. He eats his hands. He holds his hands for hours on end.

Then he started to reach for things- familiar toys; first with one hand, then with two. Two hands working together.

And he started activating switch toys, first by accident when his hand knocked the switch.  And then with concentration and purpose.

Little by little.

Step by step.

Until this week, he did this:



I'm linking this up to the linky on Ethan's Escapades which celebrates 'Small Steps; Amazing Achievements', because it is, it really is!


Ethans Escapades

Comments

  1. I love this video, we all watched it and I still have a big smile on my face. Well done little man, keep up the good work.

    Thanks for linking up with Small Steps Amazing Achievements :0)
    x

    ReplyDelete

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