The things about our life that are truly special

By Kelly Wilton

Over the school holidays I read a book – yes, an actual book! It was the first book I’ve managed to read in about 5 years and it did take me about 67 instalments (!), but it was just what I needed. It’s one that many of you may have heard about, or read yourselves – Special, by Mel Dimmet.

In the book, I read how other parents helped themselves during the early days of learning about their child’s diagnosis; the days where they would be confronted with the news that their future, and that of their child, would be very different to the one they had imagined.

It helped me revisit those early years again – not in a ‘triggering’ way but in a way that made me realise that had I known my feelings were absolutely typical of a parent in our position, I may not have felt so alone and isolated. But, like many others, I did feel completely alone and that the community I longed for wasn’t there or wasn’t within reaching distance. 

Little did I know, it was there – I just hadn’t found it yet.

I am sure that I am not alone when I say this – I’m in a very different place now. I am accepting of our situation and I’m learning all the time about the path of life we are on as a family. And it’s forever changing! 

I’m learning about sibling relationships, partnership stress, financial stress. And also about the unfairness and cruelness that is bestowed upon some of our most treasured people. 

And that last one continues to be difficult to comprehend.

There is a lightness vs darkness that I feel I live with at times. As an adult, I know that the world can be cruel, unkind, and not fair. And so can people. I only have to stumble across online opinions by a bunch of people who have not walked in ‘our’ shoes to be reminded of that.

What I have found to counteract this, is to focus on the light in our situations; the light our children bring into our world, the light that makes us take stock and re-prioritise what is important to us, our children, our families as a whole.

None of us know what it’s truly like to experience another’s reality, but as special needs parents we are all connected somehow and if we can cast some light into the darkness that others may be experiencing, then we are doing a good thing, right?  We are all travelling towards something. We look forward, not backward and bring those people who are struggling with us. We support them, we support each other. We try to. 

As well as taking me back to the early days of diagnosis, reading Special also made me reflect on the here and now. A bit of self-reflection now and again can help you see how far you’ve come as a family and as a person. You can see how you’ve changed and adapted to the reality of raising a child in a world that isn’t always accepting of our unique dynamics.

I don’t think any of us know exactly how to do this right, this different path we are on. We are all here learning and gaining support from one another. We live in a world that likes to portray perfection as the ultimate goal, but that’s not a realistic goal for anyone, special needs or not. Perfection doesn’t really exist – what’s perfect to one person isn’t to another. The most beautiful thing about life is that we are all different.

That in itself, is what makes life special.