‘But they look so well.’

I hear this often. Along with, ‘you wouldn’t know there was anything wrong with them,’ and ‘they seem fine.’

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And I smile and nod and say, yes, we really are very lucky. And most of the time I mean it. My sons are lucky to have such a normal life, but a little part of me wants to scream and shout and stamp my feet at the lack of understanding. Yes, my children go to school most days. Yes, they are well most of the time. Yes, they do look perfectly healthy. But they are not. And a hell of a lot of hard work goes in to keeping them ‘well.’

You know when you have a cold? And you have mucus in your chest and throat and blocking up your nose and ears? You know how crap and exhausted that makes you feel? Well, my children live like that everyday. Except they do not have a cold, they have a condition called Primary Ciliary Dyskinesia. It is a rare, life changing and potentially life threatening condition that has already resulted in my middle child losing two thirds of his right lung. But if you read my blog then you’ll know this, I’ve written about it all before, more than once..

But what you don’t know is that it’s taken me a long time to come to terms with their diagnosis. And that at times that process has affected my relationships. I’m not entirely sure if this is down to me, or the people I know. You see, I know no one in the same situation as me and it is so hard to get people who are not going through it to understand. Most of the time it’s fine and when I’m ok it’s all ok. But then, someone may say something insignificant and it’ll affect me. Our fears as parents are all relative, I know that, but maybe, just maybe, I deserve a bit of extra empathy, maybe, or understanding, some kindness. But then I know it’s hard to put yourself in my position. No one wants to imagine their children unwell.

Over the first few months after their diagnosis I know I was at times perceived to be a moody, grumpy person and it became somewhat true. For, if you’re perceived as something, it’s damn hard to fight against it, right? And I’m sure if my friends read this they’d say I was being most unfair – they’d shout that they did, and still do their best to support me. But, in all honesty, I’m not sure many of them really did. And it’s not only their fault, I know this. It’s also because I don’t tell them how difficult it’s been. Or how isolated I felt. Or how anxious I still am. I feel like I’m constantly having to remind people how hard it all is and then I imagine them rolling their eyes and saying I’m blowing it out of all proportion, because, and I quote, ‘they look so well.’

But not every disability is visible. Not every child running into the playground is well.

I’ve learnt to be more honest. And I’ve learnt to ask for support when I need it. But most importantly of all I’ve learnt from the boys to live every moment with utter joy and to just get on with it!

Edit: since writing this post for The Huffington Post I’m actually a lot better!! Some days it’s hard to come to terms with and looking after the boys and keeping them well is all consuming, but a life changing diagnosis is like a bereavement of sorts. It’s always there, but you get used to living with it and you learn to laugh again.