For a long time now I’ve wondered whether we should be telling Twiglet more about MPS and what it means for his brother. Everything I had read about the subject suggests that the earlier a sibling knows about potential problems the better able they are to deal with it. Also, with Pudding going to the same school as him in September, inevitably more people will know about the diagnosis and there is always the possibility that someone, some day, will make an unthinking comment. I would never want to put him in the position of having to hear from an outsider what he should learn in the safety of our family.
But really, how do you talk about life expectancy to a six year old?
Every so often I have tried. I’ve edged the conversation round to Pudding and his condition and hoped that Twiglet would ask the question that could lead me into it. But that never happened.
So two weeks ago I did it. Twiglet made another comment about what Pudding will be like when he’s a grown-up and I bit the bullet. The conversation went a bit like this (should have written it down at the time):
Me: Do you know what the treatment he’s having each week does?
Me: Well, if he wasn’t having it, all the gunky stuff would be building up in his body – the heart, lungs, everywhere. So eventually they would stop working.
T: So his heart wouldn’t be pumping blood around his body, and he wouldn’t have any more oxygen, and he’d stop being alive?
Me: Yes, that’s right. But he’s getting that treatment now, to keep it all working. And the treatment that he’s getting in Manchester – we hope that will keep his brain working too.
T: So he could get to be really old like me.
Me: That would be good. But even if it does work well, he may not get to be as old as you, because all the gunky stuff will have done some damage already.
T: OK. Can I have my Lego down now?
Hmmm. A little easier than I expected, but don’t know that he really got the message. Hopefully though, that seed has been planted in his mind, and he’ll have a little more understanding and knows it’s something we can talk about.
For now though, I’m resting a little easier.
(Anyone looking for a good book on MPS for children, I also really recommend ‘My brother, MPS and me’. It doesn’t talk about life expectancy, but has good clear explanations about the condition. I’ve already bought a couple of copies for school)