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…

If ...

If things were different, I'd be sat at home now, half way down a bottle of wine waiting for my takeaway to arrive. A curry, I imagine. With a nice peshwari naan. Mr. M and I would've chosen a film from the planner to watch and I'd be looking forward to a well deserved week off work. I'd be shattered; there's something about that last week before you break up for a school holiday where you feel like you've given every ounce of your energy and it takes all your strength to get to Friday; and I'd have a fun week ahead planned with th aim of getting all my marking and planning done on the first weekend. Invariably by this time next week I'd be stressing about all the planning and marking I still had to do!

But life isn't like that any more. Today, for me, isn't the first Friday of the half term holiday. Next week won't vary much from this week or from the week after. Except in that hopefully we won't still be in hospital and there'll be a few less therapy appointments.

Instead of my wine, I have a cup of weak tea, kindly brought by one of the nurses. The films of choice on a children's ward are Bee movie (I swear they've had that one on for over a year now) or Kung Fu Panda. No thanks. And a nice takeaway? Does another bag of crisps count?

So this Friday night is spent, like many before and many after will be, in the children's ward of the local hospital. H has been having breathing difficulties and we had reached a point that we couldn't manage them any longer at home, so here we are. Last night was dreadful, I think I had less than an hour and a half of sleep. H seems much improved this evening though so I am hoping for a better might. Just in case though, Mr M did the early evening shift here, so I could get a couple of hours sleep at home. And a shower! But as I returned, listening to the Friday night 'tunes' on the radio, gearing people up for their night on the town, putting them in the party spirit I thought how different my life was from the Friday nights spent in the pub and the Saturday morning hangovers. Of course much of that changed when Cheeky came along but Little H has changed my life again, beyond recognition.

If ... I thought... If H was different, if H was, well, normal ....

And I thought about putting my feet up after a hard week at work, the wine, the take away, the week ahead meeting friends and their children in the afternoons, nights out with mates and more wine! Generally after half term, I'd be even more tired returning to work after a busy week of catching up with the people I didn't see the previous 6 weeks. And I'd have a list of jobs to get done, mountains of housework which had fallen by the wayside because I'd be too tired to do it after work.

I stress and moan about not seeing my mates any more. But I didn't see them that often before. It was just that work was the reason then and I always had half term to squeeze them in. Now I make more of an effort to see them when I can, when H is healthy, rather than timetabling it every 6 weeks.

And I'd feel guilty about all the time I spent at work, with Cheeky and H in someone elses care, while I looked after other people's kids. I'd want to cram as many fun activities into the week off as I could, to make up for feeling guilty for all the time I wasn't there.

So maybe, I'm not so badly off after all. I get to spend time at home with my beautiful boys. My house still isn't tidy, there is always a mountain of washing to be done, but I realise it's not important. None of it is. what's important is my boys and I are together and we have fun, lots of fun.

Comments

  1. It is amazing how our little lovelies teach us what is important... Mr k has a good job, financially safe, but lates, weekend, bank holidays, we don't see him over Christmas much. But Master K has taught us never to take for granted you need to enjoy things and be together now waiting is pointless, which is why Mr K has been beavering away to get a new job, there is no extra money, but there are bank holidays, weekends, CHRISTMAS! Nothing is more important than just being together and loving, but if you can sneak in a glass of pinot and a chow mien all the better :) Though here my favourite nights are pizza nights, the small one chooses a film, we order pizza in our pyjamas and eat from the box in front if the fire... Perfect!

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  2. Who would have imagined that our lives could have changed so dramatically! I am lucky enough that I do get to go out and party some nights (last night being one so am very hungover today,but lets face it, this is not the life we had planned or imagined!Its different! I am going to go through the sleeping in hospital routine soon when my daughter has her operation in March and it fills me with dread so can only imagine how exhausted you are at this point. Brilliant post! Love your honesty. xxxx

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  3. You're right Katie - we should never take things for granted and I think the Littlies have really made us all realise what is important. Congratulations to Mr K and the new job - hope it makes a difference to you all and you get to enjoy lots more quality time together. I am sure he'll be delighted to join in pizza nights now!

    Thanks Jonty Babe - hope the hangover wasn't too bad, Still manage to squeeze a few of those in myself, even if my social life isn't what it used to be. Good luck for FD's operation, I can imagine how worried you must be. xxx

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  4. Gosh, I read your post and it did make me think. If things were different I would be back at work, writing press releases about goodness knows what, earning money to spend on goodness knows what, thinking about Samuel in nursey being looked after by other people. BUT with having to give up work it meant that I am always home during my husbands school holidays (he is primary school teacher) and I get to spend every day, every moment with Samuel and not miss a thing. xxx

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  5. It is strange the way things work out Zoe, bet you never thought that this is the way things would turn out when you fell pregnant with Samuel. It is wonderful that we get to enjoy every precious minute of our boy's lives. xxx

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