Memory

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. 

Pudding in the garden chasing a ball with a big grin on his face.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.

Letting go

I think over this Christmas period I’ve found the secret to happiness.

That is, I’ve found it before, but never really known how to articulate it. Letting go.

Letting go of the way things ‘should be done’. Letting go of preconceptions. Letting go of the idea that the opinion of strangers actually matters.

It’s a path that many parents of disabled children have to travel. We have all sorts of ideas about how parenting will be: the experiences from our own childhood that we remember and want to repeat with our children, and those that we want to avoid; the plans for their future – school, university, work, marriage. And then the slow realisation that things are going to be different to our expectations.

Maybe that journey goes faster for those with disabilities apparent from birth, I don’t know. With a condition like MPS though, when development is relatively normal at first, the realisation is slow. Painful at first.

Pudding with an enormous smile, watching TV

Over the last few years we’ve gradually adjusted to Pudding’s world and at Christmas I think it’s even more apparent how far we’ve come from what I would previously have planned. He is at his happiest with his beloved cartoon films on tap, and getting plenty of attention from people on his own terms. So that’s what we do. Christmas for us now is at home, with family visiting. TV stays on.  We don’t buy any presents for him – he doesn’t need anything and isn’t interested. This year, he even stayed asleep in bed until we’d opened all ours anyway. He definitely doesn’t feel that he’s missing out and I no longer feel guilty about that. I’m letting go!

How things ‘should’ be done really doesn’t matter. What matters is what makes Pudding, and us as a family, happy. This Christmas in our still-feeling-new house is probably one of the best I can remember. Letting go doesn’t mean giving in, or necessarily accepting second-best. Instead it’s developing new traditions and finding the joy in small things.

I don’t really make new year’s resolutions, though I do sometimes have aims for the year. But maybe this should be the theme for my year. Letting go, and finding the joy in small things. There are definitely worse ways to live.

I hope 2020 will bring each and every one of you some joy too. xxx