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…

Wishing for Normality

Sean said those immortal words today; the ones I'm sure many parents of a child with special needs dread.
"I wish Hugh was normal".
I froze, unsure how to respond, seriously contemplating ignoring him and pretending I hadn't heard.  It's not that I hadn't expected this.  He's danced around it for some time, getting notably upset last September when Hugh started at a special school and didn't join reception class at his school like so many of his friend's little brothers and sisters.

He sat at the table, his spoon poised half way between his breakfast and his mouth and he waited expectantly.
Sean's prayer for his brother

It's not that he doesn't love his little brother.  Far from it; he absolutely adores him.  Last parent's evening his school books referred time and time again to Hugh. I had a lump in my throat reading a prayer he'd wrote; "Thank you God for my little brother Hugh".  

I just wanted to get the answer right.  Over the years he's going to feel a huge mix of conflicting feelings about and towards and because of Hugh.  I want him to know he can talk about them to me, even the really not nice feelings, like anger and shame and guilt.  I want him to know that it's OK to feel like this sometimes.

"What do you mean?" I replied, buying time.
"I wish he was normal so he could play football with me".

So simple.  Such a simple thing to want.

"You know what son, sometimes I wish he could play football with you too!"
And I do.  It makes me so sad to see Sean playing on his own, when if things were different, Hugh just a year younger would be out there playing with him too.

But I pointed out all of the things he and Hugh can do together; swimming, playing on the swings, going out on their bikes.  And all of the things they don't do like fight over toys or tell tales on each other.  I reminded him of all the exciting things he's done because Hugh is 'different'; the trip to Legoland, the holidays in Wales, the visits to the Donkey Sanctuary, the stays at Acorns (Children's Hospice) and all of the people he knows now that we've met because of Hugh's differences.  The answer seemed to satisfy him, particularly as he was looking forward to going swimming at Acorns later in the day, and he went back to eating his breakfast.

I dwelt on the conversation for some time.  Should I have said more?  Should I have challenged his use of the word 'normal'?  Should I have used the opportunity to discuss difference, diversity and disability...?  In the end I decided that 8am was probably far too early for that kind of heavy talk with a six year old!

Later in the day we drove past Hugh's school and I mentioned there was a swimming pool there.  Sean was indignant.

"I wish I was disabled" he said.
I guess when you're six, it really is that simple.  Sometimes it's better being 'normal' and sometimes it pays to be disabled. 






Comments

  1. I've had variations on this over the years, and have always tried to stress all the benefits of having a sister with severe disabilities: "look, we can park right outside the shopping centre, and not get wet!' etc etc and even the way it's been character building: "look how patient you both are!" And they are also both jealous of having a sister who has a swimming pool in her school, and whose curriculum has included going to coffee shops to eat cake and horse-riding :)

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