Pages

Tuesday, 12 November 2013

what if?


We had one of those conversations today.  You know, the ones where you give voice to those what if's?  Those dreaded thoughts that rarely emerge from deep inside of you, those scenarios from the worst of your nightmares.

But every couple of years Mr Manley and I seem to need to purge ourselves, to check on one another, to retread that dangerous ground just long enough to find one another again.  The rest of the time I feel as though by giving these ideas life inside my head, by even thinking about what could be, I've brought that possibility into existence, so it's down to me to stifle those thoughts.  As if by denying them the light of day, the solidity of being spoken out loud, I can somehow prevent them from becoming real.  But of course it isn't that simple.  Which is where the what if's conversations come in.

(Please be aware that you might find this post upsetting)

It's the waiting that I find most difficult.  Waiting for the other shoe to drop.  I think of Smiler as being pretty healthy most of the time, but while in reality he is much more stable than he was when he was little, he is still far from well.  It's not the conditions we know about that frighten me, it's the ones we don't yet know.  Every couple of years he has another crisis of some sort, but he's running out of systems, running out of organs that can be managed without, or can be effective if they run at a reduced capacity.  As far as we know right now, nothing that Smiler has (or doesn't have but should) is likely to kill him.  That doesn't mean they don't have the potential to do so, just that it would be unlikely.  But, when you get right into it, the stats are meaningless.  Imagine a specific heart defect that endangers the life of just one person in every thousand who has it.  You are probably going to be absolutely fine, but if you turn out to be the one who isn't - well, then you're not going to give a damn about the nine hundred and ninety nine people who are going to be okay.

So, every so often, we talk about the what if's.  Words, out loud, tempting fate, and anything is fair game, no matter how negative, or upsetting, or unlikely.  I've heard that a reason lots of pregnant women can have very disturbing dreams is because their mind runs through lots of negative possibilities, to kind of try and toughen them up, just in case.  So here's my worst possibility.

"One morning I sit in the kitchen, luxuriating in the quiet, enjoying the novelty of drinking the whole of a cup of tea while it's still hot.  I finish, and smile to myself as I realise he must still be asleep - so many extra Z'eds this morning!  Checking the clock, I sigh deeply, reluctantly deciding I'll have to wake him as his meds are due.  I open the door, expecting him to jump to attention as he usually does when he hears that little squeak the door has made ever since we swapped the hinges so it opened the other way.  No jack in the box today though - swimming yesterday must have wiped him out even more than usual.  I step over the threshold, hotly persued by Eli, who seems intent on getting his morning cuddle.  But he stops, freezing in position, and whines quietly, turning his head back to me as I close the distance to the bed.  I see Smiler is snoozing, snuggled under his standard requirement of layers - the multicoloured knitted blanket on top of the blue fleece blanket on top of the duvet.  His eyes are closed, his lashes soft against his cheeks, the picture of innocence and serenity.  His chosen toy of the moment, a floppy dog he's named Eli, is tucked under his arm, his hand splayed against the pillow, his fluffy curly hair doing it's fluffy curly thing.  As I step forwards and Eli whines again, I glance down at my gorgeous boy, and reach out to stroke his cheek, to coax him gently out out of dreamland, but his delicate skin is cold to the touch.  He doesn't stir.  He isn't breathing.  He's gone."

4 comments:

  1. Thank you for so honestly sharing the darkest fear that crosses the hearts of many SEN parents. Thankfully the what ifs day are not every day, but we certainly know how to make the most of each and every one of those.

    ReplyDelete
    Replies
    1. Thank you Hayley - hopefully now I've blogged it my brain will give me a rest!
      Take care
      L x

      Delete
  2. Hiya, I am so pleased that I stumbled on your blog. When my girls who are older than Smiler go out at night I do have this kind of unpleasant dark thoughts. What if..
    Have an excellent week. Nicky

    ReplyDelete
    Replies
    1. Hi Nicky, glad you found me! Unfortunately those worries seem to be part and parcel of being a parent, no matter how healthy and sensible they are. Have a great weekend, I hope you'll stumble back here again!
      Take care
      Lucas

      Delete

If reading this has made you smile, or left you feeling sad; if you're fuming in anger, or shaking your head in disgust; if you'd like to share something, or just want to say hi, please do so here. Thank you.