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…

Do you ever just feel like you can’t do anything right?

It’s one of those days!  It’ll pass I know.  And you’ll read this and will tell me what a great job I’m doing (I hope), how I’ve a lot to cope with, how it’s only understandable to feel like this from time to time.  Add to that I’ve been unwell of late (nothing serious – a bit of a virus) and I’m tired so it’s understandable to be all emotional etc etc.  Hang on, I’ll talk myself out of a blog post at this rate! But seriously ... do you ever just feel that you just can’t do anything right?

I just feel I’m letting everyone down.  I’m not a decent mother, a decent wife, a decent daughter, a decent friend.  My house is a tip. There are piles of washing everywhere. There’s no food in the fridge (though there IS plenty of wine). I shouted at Cheeky today and made him cry. Over nothing!  Just because I’m tired. I can barely manage a civil word to The Husband half the time and I can’t remember the last time I was able to have a proper conversation with a friend or family member and really take an interest – I’m just too tired, too distracted, too stressed to think about anything or anyone else. 

My whole life seems to be about being ‘A Carer’. Not a mum.  I seem to be doing chest physio, or thinking about it, or charging the suction machine, or setting up a feeding pump, or re-fixing the bloody tape for the NG tube for the 100th time, or chasing appointments, or reading flipping hospital letters day after day after day.  I don’t have time to play cars with Cheeky.  I can’t find time to wash up.  I can’t manage to get the two boys out to the park or the shops or anywhere.  I constantly feel guilty about all the things I’m not doing and all the things I should be doing and that just makes me more stressed and incapable of doing anything at all!!!

The respite that was promised in August still hasn’t materialised – though we are using the local hospice.  It’s not even respite I want – although an hour to have a bath would be lovely.  I just want someone to give me a hand. I just want to feel like every single area of my life isn’t slowly falling apart.

Do you know, I used to be fun.  Some days I struggle to remember the old me.  I’m not sure where she has gone.

Comments

  1. You probably don't want me to say that yes girl, you are doing a fabulous job.

    It's a bloody hard job and you have so much to juggle. I only have Sam and I find it tricky, but you have two to look after.

    I know it is easy for outsiders to say, but try not to be so hard on yourself. Your children, your family are so lucky to have you - you are stronger than you realise. You have to be for handling what you have to handle EVERY day.

    You are a marvellous lady. x

    ReplyDelete
  2. Thanks Zoe. That message came through directly to my phone late last night. It really made me smile and was a lovely end to a long day. Thank you. X

    ReplyDelete

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