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.
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