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…

Me time? You’re kidding, right?

I think ‘me’ time goes out of the window a bit when you have children anyway, but when you have a child with additional needs it’s a whole new ball game.  Finding a babysitter?  Pah!  You’ve got to be joking!  In order to look after Little H, you need to be:
~        trained in basic life support, and be prepared to use it,
~        trained and prepared to use a bag and mask,
~        trained in administering emergency rescue medications,
~        trained in administering oxygen
~        trained in NG tube feeding
~        know him well enough to recognise quickly when something’s ‘not quite right’ and recognise very subtle seizure activity
~        and most importantly – nerves of steel
There’s also the three year old Cheeky to contend with if that wasn’t enough.

Funnily enough, we don’t get too many offers of babysitters!

So, my husband and I have nights out separately.  I genuinely think I would go mad if I didn’t get out occasionally, it’s just a shame we don’t get to do it together.  We are still waiting for support from the Complex Care nurses (four months later ...) and have just started spending time at our local hospice so there is a real possibility in the future that we may get to spend time together, if we are brave enough to leave H in somebody else’s care that is!

For me, spending time away from the house doing ‘normal’ things saves my sanity; even if it is something as simple as popping to the supermarket without any children in tow. Wow, what an exciting life I lead!  More interesting ‘me time’ is spent drinking copious amounts of wine with friends (often), going to yoga (sometimes) or zumba (rarely).  OK, so most of my free time, when I’m being me and not just ‘a Carer’ is spent drinking wine, but hey, it works for me!  :D

What about you?  How do you spend those precious hours off?

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Comments

  1. I know exactly how you feel, as life with Smiley was like this for the first 2 years of her life. Eventually when I got completely exhausted my district nurse arranged for the local children's hospital to take her in for a week - I still went in to see her every day of course! Now her medical needs are much less and I always have a couple of adult babysitters who are trained and can manage both cerebral palsy and aspergers! So things do get easier xx

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  2. Thanks Blue Sky. We can sometimes feel like we're the only ones that face challenges like this so it is good to know that you've been there and come out the other side! :) Xx

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  3. I know exactly what you mean. Sam's Grandparents wont look after him as they don't feel confident in doing so, so our only option (and at least we do have this) is our neighbour/NICU nurse Auntie C who can occassionally help. But it is hard. We should be starting respite soon & I keep being asked what I want to do with time off - I have no idea, never had proper time off in what feels like forever, don't think popping to the dentist really counts!
    Great post! x

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  4. Nope - popping to the dentist doesn't count Zoe! Or going for blood tests as my 'time off' was spent this week!

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