There are several things these last months we could have done without. Most significantly, Charlie's EEG results did not bring the comfort we expected. In fact, quite the opposite! Charlie is experiencing some seizure activity. Our first reaction to this was to be frank - disbelief! Having seen so many seizures in the past, surely we'd have noticed? However, shortly after these unwelcome results, came some unpleasant nocturnal 'episodes', and all becomes clear - You don't notice anything when you're sleeping do you?
So we're back to sleep deprivation. Well I say back, I don't think we ever left it. Charlie sometimes has a good nights sleep but do Paul and I? - Not really! When he's grizzly, you really daren't ignore it and when he's peaceful, you're worried he isn't making any noise so you go and check on him anyway! - Poor chap can't win!
To cap it all, by the time everyone's settled, one of the girls almost invariably starts their nocturnal wanderings. There's literally always something happening in our house!
Charlie has also had some unexpected weight loss and whilst he certainly doesn't look malnourished, there's obviously some degree of professional concern that his weight's moving in the wrong direction particularly as he isn't the most active little boy.
One of his therapist's recent reaction to the news he had started to wave 'bye-bye' was:
"About bloody time you started doing something Charlie!"
I'm surmising from this that she isn't overly impressed with his general progress!
People ask innocently "Is he walking yet?" I answer, "Not quite!" - This is diplomaticaly stretching the truth as he isn't even safely sitting yet and his physio is obviously concerned he needs to start weight-bearing.
So admittedly so far, the glass is sounding at least half empty...except that isn't the way I feel. I've noticed something recently and it's this...People are ridiculously kind towards us - Both people we know, and people we don't. I find the kindness of strangers immensely touching and simultaneously puzzling. Charlie elicits smiles, gentle touches, wistful looks and good wishes from almost every stranger that bestows him more than a fleeting glance. Older ladies want to hold his hands and are clearly entranced by his smile. Older gentlemen treat me with a strange kind of reverence and often squeeze or pat my shoulder, or offer some similar fatherly and affectionate gesture I've done nothing to deserve.
I've been told I should find this patronising. - Well I'm sorry I don't! I think it's wonderful, firstly that Charlie clearly touches people and after meeting him they take away with them not just the memory of his smile but a reflection of it, and secondly, the gentle pats and squeezes, I see as recognition of the immense pride and love I have for him - I think it's tangible - and that's why people touch!
I'm afraid I don't hold with the popular view that you shouldn't use words like 'normal' and 'disabled'. Why not? Charlie isn't normal and he is disabled! The term 'differently-abled' has that 'do-gooder' ring to it and I'm willing to bet it wasn't originally coined by someone with, or a relation of someone with a genuine disability. I don't feel stigmatised by or ashamed of these terms and labels and I'll make sure Charlie isn't. I think it's part of the same attitude that enables me to feel pleasure and not defensiveness in the face of these 'kindnesses'. I'm grateful for them. They are a huge plus amidst a stream of little minuses at the moment and I hope they continue!
People we know also show us great kindnesses. Too many to mention, although a recent one is noteworthy. My friend's husband recently made us a beautiful sandbox. Not a small affair but a great big, 'fit-all-three-in -at once', lovely piece of garden furniture. With the left over wood he made a lovely planter in which Caitlin, Claudia and Charlie now have their own miniature tree and flowers. He wouldn't accept any payment despite the fact that these gifts would have cost us hundreds to buy. His wife also reliably informed me that he would be mortified by the surprise gift we were planning by way of a thank-you, because he 'just wanted to do it!' He wouldn't even hear of a crate of beer which has always been Paul's fail-safe thank-you plan. Apparently it was reward enough to know that the children would get enjoyment from his efforts. So by way of a thank you Alan, there's some evidence at the top of this post and some more in the gallery at Charlie's website:
and also a personal thanks from Paul and I - it's acts of generosity like yours that keep us feeling that the glass is more than half-full - it's over-flowing!