This blog needs to change. I have been thinking a lot lately about what the purpose of this blog is. What exactly am I trying to do? What, realistically, can I do?
This bout of introspection has been prompted, in no small part, by the … backlash … from within the Down’s Syndrome community following the World Without Down’s Syndrome documentary, from people who do not see their experiences represented by those of us who share a positive view of life with DS. They tore down what they called our ‘poster boys’ (and girls) and shredded them with the words ‘they’re not all like that’, and dismissed the details of our lives as sugar-coated fantasy. While I understand that some people, some families, face greater challenges than others, that they feel ignored or forgotten if they do not see their reality represented, and that in some cases this may bring buried insecurities rising to the surface, I really resent being accused of being a liar by people who have never met me, and don’t know the first thing about me, my outlook, or my circumstances.
The truth is that just as our loved ones with Down’s Syndrome are individuals with different challenges, abilities, and personalities, so too parents are individuals with different backgrounds, abilities and tolerances. Each family is a collection of unique individuals living in endless different combinations of circumstance. Each has its own dynamic. We can each only tell our own story, but together each of us presents one little piece of the jigsaw-puzzle picture of life with Down’s Syndrome. Each piece of the puzzle is equally valid.
And that’s the angle I’m coming from now – I cannot tell anyone what it is like to have Down’s Syndrome, because I don’t have it. I can only tell the world what it is like to be the mother of someone with DS, or what it is like for me, at least. What this blog needs is an authentic voice, and an authentic viewpoint – mine: because my story is the only one I’m qualified to tell.
So I have decided to shift the focus of the blog somewhat, and to make it my ‘diary’, in other words, the diary of a ‘Down’s Syndrome’ mum (for want of a better phrase). Of course, the fact that my son has Down’s Syndrome is not a fact that exists in isolation; it exists within the context of my family, and my life, which (surprise, surprise) has not been completely swallowed up by my child’s needs. It will be the story of our life together as a family. Freddie will still play a huge part in the blog, of course, as he is a huge part of the family, and, being the most vulnerable member, is held securely at the heart of it.
I tend to be quite outspoken, maybe even a little sarcastic, and I do like to get up on my soapbox and rant, but hopefully, if readers can detect a genuine and particular ‘voice’ behind the blog, they will be less inclined to dismiss it as rose-tinted fibs.
I’m also a ‘stay-at-home mum’ (an often misunderstood, and sometimes maligned, creature), and so by also including this aspect of life in my blog, I hope I can call myself a ‘mummy blogger’, as well as a ‘Down’s Syndrome’ blogger, or a ‘SEN’ blogger, and maybe reach an audience beyond just the Down’s Syndrome community, where I’m preaching to the converted, so to speak (or annoying them with my obviously fake happiness and positivity).
What do you think?