Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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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