Welcome to life on the other side of normal. I am glad that you are here. 

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I've deliberated for a long time about how to start, where to begin and what kind of introduction I could make to this space. The months went by and no jazzy introduction was forthcoming, and so I remained in a strange limbo land of having a lot to say but unsure where to start.

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There's been a lot going on behind the scenes, you see. I've known for a while that I have a story to tell, but first, in order to do this with integrity, I had to figure out why I wanted to tell my story. Was it for affirmation, encouragement or sympathy? Was it to educate and inform? Or was it simply a public way to process my pain?

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For a while, I toyed with the idea of whether I actually had anything to share. My journey is unique, but so is everyone's. Mine is not more special, significant or important. But I've come to see that my story is just that - mine - and only I can tell it.

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When I had finally decided to write (a decision which has taken a number of years and considerable encouragement from many people), I then had the timeless battle with the age old trio of perfectionism, fear and control. Don't they crop up whenever you are trying to be brave, with the sole task of ambushing all kinds of exciting endeavours?

 

Perfectionism grabbed me initially: "you can't write something in the public domain unless it's absolutely perfect." I had spent a lot of time churning out what Brené Brown calls the 'sh*t first drafts', a way of processing pain and experience through writing - but these certainly weren't pieces for sharing! Furthermore, I struggled with what the format, vision and USP of the blog would be. I felt that the sensible thing would be to tell my story chronologically, because surely that would make the most sense for people, but the reality is that I would be unable to do that. Some months I have written almost daily, and have a well documented catalogue of events, much like my highly organised ring binder of letters from the professionals. Other months are simply blank, because I was either too busy living my life to be writing about it, or too busy wishing for another life that I couldn't face writing about my reality. Either way, chronologically there are gaps, and I am not about to do a strange time-walk to write about them just for the sake of a seamless blog. 

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I finally got to the place where I was comfortable sharing something less than perfect and what you'll find on these pages are true, real stories, gritty imagery and the occasional poem that doesn't really rhyme. They tell a story but they are far from perfect - and I am OK with that. 

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When I made my peace with sharing something fluid, partially formed and definitely not perfect, then fear came along: "Are you not afraid of what people will think?" And the truth was, that I was. I run the risk of hurting friends and family who didn't see the depth of my pain, didn't fully realise it or maybe weren't shown. I risk looking very vulnerable to people I don't even know. And there's nothing like making your story public that makes it very real - utterly visible. And that is scary. But I decided to face the fear. I decided my story was needed, and was worth sharing.

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Finally that little voice came along and asked me if I feared loosing control. By making my story public, I was giving people a right to comment, allowing people access to me and my story, letting myself be seen. This felt scary, but at the end of the day, I decided to be brave. I decided to step out, embrace my imperfections and get my pen out to start sharing.

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I feel passionately that my story, and stories of many families like ours, needs to be told. It's an ongoing tale of a family whose lives were disrupted and untangled by a surprise diagnosis of disability. It's a story of a couple completely unprepared and unqualified to be carers. It's a story that keeps unfolding and we don't know how it ends. If my writing helps you to understand us and other families like ours, just a tiny bit more, then I'll always be glad I started.

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Welcome to life on the other side of normal.