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…

Loving Equally Does Not Meaning Loving The Same


I love both my sons dearly and equally. 

As I tuck in little H I look at his beautiful face and am filled with such overwhelming love. I caress his cheek and run my hand over his face-the on body sign for good night. I do a mental run though of the appointments and therapies the next day will bring. I check he is positioned correctly, lying symmetrically in the bed. I attach the sats probe to his toes, switch on the monitor and check his oxygen levels and heart rate. I check the angle he is sleeping at is sufficient, adjusting the gradient if his reflux is particularly bad or he is having problems breathing. And I kiss him goodnight. 

Then I go to Cheeky's room. He sleeps soundly, curled up in a ball, often the wrong way round in the bed. I lie my head next to his and listen to him breathe. Calm. Peaceful. He is nearly 4. He loves Ben 10, Disney Cars and Spiderman. He is looking forward to going to school in September. Life is straightforward. Simple. 

I lie with my head next to his, listening to the calming rhythm of his breathing. In and out. In and out. I take in the smell of his freshly washed hair and feel my heart settle, my mind still. Some nights I don't want to leave. This haven. This safe space. This simplicity. I long for the simplicity. 

I kiss him goodnight and return to my room. H's sats monitor flashes in the dim light. I check the figures again before getting into bed. 

I love both my sons wholeheartedly. 

And equally. 

And differently.

Comments

  1. The different feelings we have for our disabled & non-disabled children are complicated aren't they? - but, as you say, we love them equally. Thanks for highlighting such a valid issue. They sound like very lucky boys to have a mum like you.

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