Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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

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  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

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