By swan uk parent rep for essex and blogger, danielle myers - dylansstory.wordpress.com
The ‘P’ word, let’s call it ‘potato.’
Isn’t it strange how one simple word can make you quiver?
They’re a few I can think of but one new one has become part of my vocabulary this week.
The word yells ‘end of life’ at me. I’ve only just come to terms with the words ‘life-limiting’ and ‘life-threatening.‘ The words that made my legs crumble beneath me when I heard that and ‘Dylan’ in one sentence.
Now, those who follow my blogs may have noticed I’ve been a bit quiet of late. Sometimes words just flow. Other times I’m just like Dylan ‘non-verbal’ I apologise for my distance.
Firstly I would like to wish you all a very happy and healthy New Year.
Like every New Year, I think ‘this’ll be our year.’ However, (and I really don’t like to talk too soon) we have started each year, 2011 through to 2016 with a poorly little boy (thanks time-hop and Facebook memories for not letting me forget!)
Now 2017 (albeit we are only 17 days in) is proving to be a positive one. The most positive by far. For our gorgeous little boy Dylan is doing well, very well in fact. Our generally sick little boy is suddenly full of laughter and giggles, cuddles and naughtiness. He’s happy, fun-loving, cheeky, newly inquisitive, incredibly messy and extremely funny. Oh, and when he wiggles his toes to ‘if you’re happy and you know it‘ I could just eat him up.
Back to the ‘P‘ word.
When an appointment came through to see a paediatric consultant from the Palliative care team at GOSH I felt physically sick. This isn’t a general paediatric appointment. Not just anyone can see this type of doctor. Now, when he’s doing so well as well. The stigma of the ‘P’ word was making my eyes sting.
Stigma. I’ve experienced many of these in the six and a half years I’ve been Dylan’s mummy. A couple of years ago when we were referred to a children’s hospice I had the same feeling. Children’s Hospice; A nice place for child and family. Nothing else.
When I googled the ‘P’ word the definition was far from what I was imagining. In fact what defines the word described exactly what Dylan requires.
Palliative; To alleviate pain without dealing with the cause of the problem. This I can deal with. This is what Dylan requires. A doctor who specialises in pain management and can tweak Dylan’s pain relief in order to help him. Especially when the world’s renowned stongest drug rarely works.
The ‘P’ word. A word I am now not scared of.
The only ‘P’ word I will be using for 2017 is … positivity