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…

What's wrong with him?

The man who served me today at the McDonald’s drive-through (No, my healthy eating plan isn’t going so well!), leant out of the window, into my car and asked;

“What’s wrong with the baby?”

Initially I pretended not to hear him, but insistently he asked again:

“What’s wrong with the baby?”

How exactly am I supposed to answer that?  This is the point at which a diagnosis would really help; a simple one word answer that summed everything up and ended the rather inappropriate conversation there and then.  

In reality, what did he really want to know?  That Little H has an unusual rearrangement of his chromosomes? That he has a severe cortical visual impairment that effectively leaves him nearly blind?  That he is severely globally developmentally delayed and functioning at about the age of a 6 week old baby despite being nearly two?  I doubt it.  His real question, was ‘Why does he have that tube up his nose?’ as the myriad of other difficulties H has are not immediately obvious.  In the end I said “Epilepsy” which explains nothing really, as NG tubes aren’t a given in children with epilepsy, although it is in part responsible, since H lost his ability to swallow safely after a particularly bad run of seizures requiring heavy sedation for a couple of weeks.

Anyway.  My point is – I hate that question: ‘What is wrong with him?’  It’s not, as you might imagine, that I am insulted that someone is implying there is something wrong with my son, that he is somehow less than perfect. I know that that isn’t really their intention.  It may be out of kindness, concern or pure nosiness and it is a clumsy way of wording it I suppose, but the real reason I hate that question is because I genuinely never know how to reply. 

I was asked the same question, in a more polite way, later in the day when visiting a potential school for H; “What’s his diagnosis?”  and “What are his educational and medical needs?” It all means the same thing.

What’s wrong with him?

And I find myself listing medical issues, missed developmental milestones, impairments and difficulties; all the things that are ‘wrong’ with Little H and all the things he can’t do.  It’s horrible and what’s worse is how I detach myself from the whole situation and I simply reel off a list of words.  Those words don’t sum up how his beautiful smile lights up the room or how he laughs to music; they tell nothing about how he loves his feet being played with and enjoys flashing lights.

There was a time, about a year ago, when I was obsessed by getting a diagnosis, but I don’t worry about it that much anymore.  It is at times like this, however, when I am required to focus on all the negatives, that I think a diagnosis would help:  A neat little label that the Head Teacher could put on his form; a one word summary that explained it all. 

And I could instead tell them all about H’s infectious laugh and how much he loves swimming.


Comments

  1. And how he loves to tango and loves funny patterns and how now his beautiful face lights up when you smile at him and how he tries to pull his mitts of. He is beautiful and perfect and a credit to you as is Cheeky x

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  2. And his crazy crazy hair!!!

    Thanks Rach xxx

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  3. there's nothing wrong with him, he's unqiue. he's h! he's himself. i don't think that a diagnosis will help - it's a label, not who he is. not what he could be. h is h - your little h!

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  4. Thanks Ever hopeful Mummy. You're right - he is my Little H, and he is lovely! xxx

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