I’m a blogging success because I have helped one person.
Doesn’t sound very impressive, does it? But to me, it has made almost a year and a half of blogging absolutely worthwhile.
When my youngest son had his first pediatrician’s appointment (after months of me worrying that something was not quite right) I hoped I would finally get some answers. I never dreamed that the answer would be Mucopolysaccharidosis II (Hunter Syndrome), words I’d never heard of.
Of course, when I got home I did what most people would do. I Googled it and started reading about this condition that includes in its definition the words ‘progressive’ and ‘life-limiting’. My first reaction was to find out as much as I could, somehow believing that the more I knew, the more I would be able to cope with this devastating news.
As well as the medical information, what I desperately wanted was to know that I wasn’t the only one to be feeling all this anger and guilt and desperation. All this messy emotion.
I didn’t know anyone in the same situation and felt completely isolated.
I would regularly be awake at 4am poring over internet pages and when I couldn’t find what I was looking for I started writing instead. At first it was just a private diary; me pouring out my feelings onto the computer in an attempt to be able to get through the day. But something I’d been told a few months kept going round in my head. When a piece I’d written about Pudding won a local writing competition, the judge had told me it would make a great newspaper column, that other parents would be able to relate to what I was writing. The idea for my blog was born.
It still served the purpose of allowing me to clear out my thoughts and emotions, and also let family and friends know how things were going without having to constantly ask me. But mostly, I hoped that one day a mum like me who has just received this diagnosis for her child would read it and feel just a little bit less alone.
Fast forward to July this year. Things were going better for us and Pudding is on a clinical trial to try and halt the progression of MPS in his brain. After one of our regular catch-ups our specialist nurse mentioned another family who had just found out their gorgeous little boy also had Hunter Syndrome. I had no hesitation in saying I’d be a contact for them.
After a few text messages back and forth with the mum, C, in which I said all the things I knew I had most needed to hear in the early weeks, I nervously mentioned my blog. Over the next two evenings C read the whole thing, start to finish, the highs and the lows. She has told me since how much it has meant to her in those awful weeks following diagnosis.
I don’t have many readers; friends, family and people I now know from the MPS community, but this one reader was the most important one.
To keep up to date with Sally and to read more why not head over to her blog www.hunterslife.co.uk