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…

Respite - is it wrong to take a break?



I was due four hours respite yesterday but they cancelled and have come today instead.  It has actually worked out remarkably well, because Cheeky is at nursery so it really is four hours ‘me’ time. 

This is what I had planned to do in that time: wash up, change the beds, put two boxes full of folded washing away, ironing, tidy up the pit that is our conservatory  Cheeky’s playroom, sort out all the paperwork dominating every available space in the kitchen, find the table under more of said paperwork, chase up Little H’s statement, find the floor under the pile of clothes in the bedrooms and hoover it, make lasagne for dinner.

This is what I did: watched last night’s Coronation Street, had a really long bath full of bubbles, read a few chapters of a book I started two months ago, had two cups of coffee, wrote this.

Heaven!

I feel a bit guilty about taking respite when H is well.  Because when he is healthy, he is actually quite easy.  He’s quite a content, happy, chilled out little man.  But when he is poorly, my God he is hard work.  But then, when he IS poorly, I wouldn’t trust anyone to look after him properly anyway.  So what’s the point of me having respite, if I get it when I don’t really need it and wouldn’t take it when I do?  Does that make sense?

After the upset of last week forcing me to acknowledge some horrible truths that I had buried in the recesses of my mind, I genuinely considered not taking H back to the hospice for respite.  We’re not really using it effectively as respite anyway, more as a family day out with an extra pair of hands.  I know, I know, it’s ridiculous not to consider going back because of what happened, but the blinkers were taken off for me and I’ve been confronted by H’s mortality.  I’d hidden away from it relatively effectively on a day to day basis – surfacing occasionally so that’d I‘d write a few words about it (here and here) and then block it from my mind.  I’m not sure how well I’ll be able to hide from it now if I go back there.  I say if, I know I’ll be back.  The boys love swimming there so I will just have to get over it.  I know I’ll get over it.  But, well ... you know ...

Being confronted by the awful reality hit me hard and I still feel tender from it.  You know that feeling you carry with you after someone has died?  An air of sadness that seems to hang around your shoulders and weigh heavy on your heart?  I feel like that.  A bit battered.  A bit war weary.  That day, after the conversation, I wouldn’t let H go.  The idea was that I was supposed to be taking a bit more of a back seat, do a bit of reading and let someone else take over for a while.  But after that, I wouldn’t let them near him.  He’s mine, he’s my son, my baby, it’s my job to look after him.  And I started to question myself – when the unthinkable happens, am I going to be happy that I read that chapter of the book or will I rue the hours I spent away from him?  I can’t get that time back.  I decided I needed to spend every second with him and make the most of them.

I digress slightly, though I’m not entirely sure what my point was to begin with.  Perhaps I am questioning whether I want respite, whether I need respite.  I feel so guilty about asking someone else to have him for a few hours so that I can get some peace/get some jobs done/spend some time with Cheeky.  And yet everyone, no really – EVERYONE – says we needs it, we should have it, we should want it.  But I can’t quite shake this feeling that I am wasting precious hours. 

I’ve tried to put it into context.  If H was a different child, an easier child, then I’d actually not think twice about asking his Granny to babysit, dropping him to a mate’s house so I could get the shopping done in peace, I’d relish those hours and that time.  It wouldn’t make me a worse parent and it wouldn’t mean I’d love him any less.  Cheeky has sleepovers at his Granny’s; he spends afternoons with his Grandad; has days out with his uncles and he spends three mornings a week at nursery.  I know this is a good thing for him (and me).  I don’t question that it means I can’t cope.  Why then all these additional feelings of guilt associated with someone else looking after H for a few hours? Perhaps it’s because it’s strangers doing it and not friends or family.  Perhaps the fact that someone else is being paid to do my job makes it harder to accept.  But H isn’t like Cheeky, he isn’t like other children and so this is the way it has to be.

Our community nurse pointed out something yesterday when I was going round in circles over this.  She said that a few hours ‘me time’ would help to recharge the battery so that I could cope in the harder times.  (Well she actually said time for me and Mr. M.  She is mightily concerned that we need a night out together but we had four hours out together 11 months ago, what more do we need?  Anyway, that’s a thought for another day).  And there’s no denying it, when Little H is well he is a delight, but when things are rough they are REALLY rough.  And I am exhausted.  There are no two ways about it.  I also look like absolute shit because I am so exhausted.  So today, I have put aside my guilt, taken a deep breath and enjoyed the few hours of peace.  And H had a whale of a time playing with his carer.  The jobs that needed doing still need to be done – some of them will get done (dinner) some of them won’t (ironing) ever!

I’d be lying if I said I feel like a new woman – I am still exhausted and I still look like shit but I’m cleaner than I was few hours ago so that’s a start.



This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate

Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.

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Comments

  1. I can relate to alot of what you said. We are still in the middle of sorting respite. But i feel absolutely terrible that i'm doing it. How can i leave Freddie with someone else while i relax or just do housework. I just don't feel right doing it. But i know i need it. Like you i have piles or washing/ironing/paperwork & definitely look like shit! A few hours just to recharge will do me the world of good.
    Glad you used the respite to have some you time. The jobs can wait xx

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  2. You sound a LOT more positive, and that has to be a good thing, especially after last week. It took me too many years to get my head around the idea of respite, and while it's not perfect, it works well enough so I don't worry about Smiley being there, hopefully you'll get to that point soon too xx

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  3. Glad you got some you time, it's necessary even if it sometimes feels wrong. I didn't claim DLA for my son for years, because he's MY son, I shouldn't be paid to look after him?! It makes no sense, but that's what I thought, and it took me a while to see myself clear of that. I really related to this, thank you for sharing x

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  4. Well done you, you need "Me" time to be able to keep going, but Im one to talk. We have a 12 year old boy who needs care all the time, but Thank God hes very good at night and when hes gone to bed thats it till morning. I now thats a blessing...I havent used respite yet but some one told me that just cause I may not be ready for it doesnt mean that it wouldnt be good for our boy!! I hadnt looked at it that way but Im getting there and hopefully in the next few weeks Il make that call and get it started!

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  5. What a love blog and so so true, well done for ignoring the house work and all the jobs and just listening to your body and taking the first steps to (me time)its very hard to accept someone been paid to spend that few hours with your child while you do nothing. I relate to everything you have said and you wroote it so beautiful too well done xxxxxxxxx

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  6. We don't do respite, but I do get a carer coming in for a few hours and never feel like I can sit there and do nothing while the carer is here, no matter how exhausted I am as I'm so sure she's judging me! Ridiculous isn't it. Consequently I take my hat off to you, it is a skill that we have to learn. I still get embarrased when people talk about my 'help' though, as though I'm incapable of coping, but I know that's my issue, not theirs.
    I truely believe that recharging the batteries means that you'll be in a position to enjoy your time with the family rather than existing in it. And yes I know that writing that makes me a hypocrit, but i mean evey word, lol

    Thanks for joining in the blog hop, fab entry x

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  7. Well done for taking some 'me' time. I think that by taking some respite you are also helping H. He will enjoy a different routine and you will benefit from that little break even though I can understand it when you say you don't want to miss any time with him. I believe that children can pick up on our feelings even though they may not understand what they mean, a break can help relieve the tension for both parent and child.

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  8. Thanks SwanFreddie - I hope you do get your respite sorted. I realise it is a 'Good Thing' and am quick to advise others to take 'me' time. In reality though, its harder to follow your own advice than it is to give it.

    Looking for Blue Sky - thank you, I am a lot more positive and I know in time I will get used to the idea of someone else looking after him. Glad you have found something that works for you and Smiley.

    Thanks Sally - yes I understand that point about DLA too. How can I claim DLA for being his Mum?

    Anonymous - that is a very good way of looking at it. Perhaps at 12 years old your son would like some time away from you. And likewise, it would be good for H to get used to other people around as well. Someone I know provides respite for a family but explained that she and the child she cares for have so much fun together, that that is more the main purpose of her role now, to play with and have fun with and entertain him. The fact that the mother also gets a break during this time is just an added bonus. I liked thinking about it that way.

    Swan Archie - thanks for your kind comments. I think a lot of people relate to these worries about respite.

    Renata - yes, youo seem to be very much of the 'do as I say, don't do as I do camp there' ha ha. Know what you mean, I have previously washed windows despite being so exhausted I just wanted to sleep, just so the carer thought that I was making valuable use of her time! Ridiculous.

    Nanny-Anne - I think you are definitely right about children picking up on feelings. By recharging my batteries I hope I will be a better Mum to both boys. And that is also true about a break in routine for Hugh too - he does seem to enjoy spending time with the carers that come in.

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