‘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.’
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.
When do we start planning the lives of our children? Is it when we conceive? Or is it earlier than that? Does everyone, unconsciously at least, absorb events, feelings, hopes and dreams, and hold them in a tiny part of their brains ready to transmit to those they may give birth to.
We may think, as a stroppy teenager, angry at the world that we will never speak to our children in the way our parents do to us. Or we will find a love in something so powerful that it absolutely has to be passed down to our children so they can exact the same pleasure we have from it.
However the hopes and wishes for our children manifest themselves in our minds there is always one enduring want – for them to be healthy. You often hear people comment when asked, probably for the millionth time, ‘Do you know what you’re having?’ that they don’t care as long as ‘it’s’ healthy.
And so, what happens, when your child isn’t healthy when they are born? Or are diagnosed with a life changing disease when they are still young and vulnerable? Do your ideals for their lives flash before your eyes, like time is said to do when on your deathbed? Do visions of what could’ve been dance and flicker before you when dealt with such a hand?
I should know. I should know because I have been there. I am that mum. I have sick children. And ever since their diagnosis I have been struggling to find the right way of describing how our lives have changed. How what we thought was before us was snatched and tarnished with the threat of a life changing and life threatening illness.
And until now I have found no way to explain how that feels. What their diagnosis has done to them, to my husband and I and to our family, who are all affected. But then, two nights ago, I watched a documentary on the Aurora Borealis, where the night sky is lit up by the most beautiful, natural lights in an awesome show of colour. And it got me thinking. Whenever I see the lights in photos, or on the television, they fill me with pleasure. One day I’d love to see them for real and experience nature at its most awe inspiring.
The journey there wouldn’t, of course, be stress free. Especially if I went with the children. There would be arguments along the way. We’d be oh so very tired when we got there, but would marvel at the relative ease with which we are now able to travel around the world. We’d laugh at the time our suitcases went missing and have fond memories of the time we caught a plane for our honeymoon and talked about doing this, seeing the Northern Lights, with our family complete. We’d be making the journey with a multitude of other people from all different countries and backgrounds. And there’d be a plan. A guide telling us what we needed to look out for and the best times to travel and see them. It would be an adventure and one that we would all be on together, with other people who, like us, would want to offer their children the very best experiences in life.
And then I took this dream and put it out of context. For not everyone gets to go to see the lights, even though they may want to. Some people are forced to watch fireworks instead. Something that is noisy, artificial, and dangerous. Fireworks have the ability to wow and hurt at the same time. They are not predictable. There isn’t just one destination where they can be seen – they are not always let off at the same time and in the same place.
My family wanted to see the Aurora Borealis, but instead we’ve been singled out to observe the fireworks. At first we watched from afar, not wanting to be herded in with the other people there. We watched the different colours and patterns and oohed and ahhed. But all the while believing this wasn’t go to be all we were going to see forever. We’d be allowed to go to the lights at some point. But then, over time, we were pushed deeper into the crowd. It didn’t matter if we closed our eyes to shut out the bright, artificial lights, or the noise – the fireworks were still there. And they had the ability to catch us off guard. Make us jump, like when a firework is set off at 5pm on the first of April instead of 5th November after it’s dark.
And fireworks burn. Scar. Leave you with physical injuries that, although they aren’t painful and raw forever, remain as a reminder of what happened and where you are. Where you can’t escape.
Some people in the crowd walk away from the fireworks. You can hear them scream, ‘I didn’t sign up for this shit,’ and as it’s all a bit loud and unpredictable, they go. To where I don’t know for I don’t believe you can fully ever leave the fireworks once you’ve been forced to go to the show. There’s always someone nearby ready to set one off and rock your world once more. It can be peaceful for a time, but never for ever.
And so at the moment, this is where my family is. We are repeatedly being surprised by loud noises and sudden fires, and even though we’ve remained relatively unscathed so far, it’s been bloody hard work. We have to tend to the field where the firework show is daily, and it’s tough fighting the fire to make sure we don’t get burnt. But we are doing it. We’re getting used to this new future. This new place we find ourselves in. The Firework Show. And The Northern Lights and all the hope and wonder they would’ve brought remain a distant memory. Nature has played us this cruel hand instead.
And all the while, the most important thing is to make sure the children enjoy the show. That not for one minute do they feel they are missing out on something more spectacular. So we embrace the show, buy them sparklers and candyfloss and take them on every single ride we can.
They know no different and for as long as I am fighting fireworks, I will fight to keep it that way.