So what does it mean when I say that MPS is a progressive disease?
Things change, but ever so slowly. Skills lost so gradually that I barely notice until months later when I’ll suddenly realise that something else has gone. And sometimes I don’t remember at all.
I know that he’s lost pretty much all his language now, and can list off many of the things he used to name when we looked at books together – cow (moo), bird, cat, clock, fish, shoe and so on. I can still hear his voice in my head sometimes but I wish I had so much more on video.
But Facebook reminded me the other day that he used to say ‘kick’ or ‘roll’ in context too. Both long gone. Even the way he plays football has changed – his skills used to be amazing and he can still wow strangers with his kick. But these days he’s more likely to simply pick the ball up and run away with it – of course with a big cheeky grin.
The way he used to say ‘Thank you’ would melt your heart – also forgotten until another MPS mum mentioned it recently. And just yesterday a memory came up from five years ago that he’d tried to sing ‘Twinkle Twinkle’. I literally cannot remember this at all, can’t even picture the possibility.
Maybe it’s just my memory keeping me safe from mourning too much. Maybe I’m getting better at living in the moment.
But sometimes I’m scared that I’m forgetting too much. And I want to preserve all these precious ‘last times’. Gather them up and hold them safe, even when I can no longer hold him.
