I’ve had a bit of a break from writing this blog over recent months. I felt myself losing momentum over the course of last year and also not wanting to write. In retrospect I know this is because through the act of writing, I am forced to come face to face with just exactly how I feel about my given topic and there were events unfolding last year that were so stressful, and so loaded with importance for Orange’s future, that I dared not commit words to a page.
Perhaps worse, I knew we were treading a very fine line of persuasion with the local authorities involved in decision making for Orange, and I didn’t want to upset the political apple cart during that process. I knew that whatever I wrote during this period, I would have to self-censor, which defeated the point of keeping this blog entirely.
Now Orange is in school, some of those shackles have fallen away but thankfully so have many of the difficulties and challenges we were facing. We are moving into what I hope will be a happier and more settled time for us all, with Orange getting just exactly what he needs from his wonderful new school.
When I think of his future there, I see a fulfilled and exciting one, with great challenges and opportunities, and I trust them implicitly to do the right thing by our son.
And so this leads me to thinking about the blog again, and what to use it for. It’s taken me a while to figure out but now I have gathered some clarity on how this blog will progress. I’ve always wanted it to be a positive view of family life with a severely disabled child and I hope I can return it to being that now.
When I first knew that Orange was facing a difficult and uncertain future, and I was desperately scared of what was to come, it was other parents’ blogs that made me see through the quagmire of frankly terrifying medical terms, academic studies and reports to a brighter future. A future that included a sweet little boy, who is easy going, cute as can be, who is positively addicted to Peppa Pig and likes to shout at the telly when the rugby is on. A boy who can demolish a man size bowl of porridge, hates having his nose wiped, laughs when his sister is getting a telling off, listens sweetly to stories and who goes nuts in the swimming pool.
If he could, he’d be that boy bombing into the pool and splashing everyone while laughing his head off.
The truth is that his disabilities do not take away from the fact that Orange really is just a boy. A little boy who is part of a family like any other. This is something I just completely didn’t understand when I was holding my tiny boy in my arms and scaring myself witless reading academic papers on rare genetic syndromes. None of them, not even the fact sheets designed for parents’ consumption, actually communicated that through it all, whatever we were facing, he would still be just a little boy, a small person with likes and dislikes, a sense of humour and the capacity for love and affection in a way that I couldn’t possibly comprehend.
He is, to his very core, just a dude.
And so, in addition to the very necessary campaigning work that needs to be done on childcare and inclusion, that’s what I will use this blog for. To get right back on track and tell that story. To give hope to other parents, sitting, holding their tiny child and wading through the quagmire. Because there is every reason for that hope. And sometimes it just needs someone else’s story to help bring it alive.