My Blog Manifesto!

This is my Blog Manifesto written in 2016, and I will always stand by it.

I love….

….My family, they are everything to me and this blog was set up to follow our life journey and record things along the way, good or bad. It’s my way of sharing experiences. I never really expected for people to be interested but if they are then that’s great.

I love sharing,  this year my daughter starts Secondary school which is going to be a difficult transition for us all. At the moment, Star is feeling calm and positive, I just hope that continues. There are lots of things we have to take into consideration and the journey is bound to be bumpy, but sharing is my way of dealing with all of this and I love having this space to do it.

I love my partner, I must do we’ve been together 15 years. This year I’ve decided to make an honest man of him and next month we are off the registry office to set a date for our marriage. It’s not going to be a massive wedding but I’ll let you join me on my journey.

Then there are the little things I love, our holidays and days out, our fun experiences and my mission to get the kids having more fun away from computer screens. I am always complaining that the kids spend too much time on their computers but now I realise that it’s up to me to get them interested in other things. I accept that times have changed a lot since I was a child, but so many of my childhood memories are based on playing and having fun, I would like my children to experience this too. They do play but it’s far too easy to just let them sit at screen while I get on with things. This has to change and computer time needs to be limited.

I Believe….

…..In spreading awareness about certain conditions that we have experience of which are Autism, Elhers Danlos Syndrome and Transverse Myelitis. I don’t want to turn this into a medical blog (I already have one of those) it’s just that these conditions play a big part of our lives. I want to share our journey of how we cope and live with these conditions and help others understand what it’s like.

My daughter was diagnosed with high functioning autism and hypermobility syndrome at 6 years old. At 7 years old she had a subluxation in her cervical spine (neck) and this led us to two years of recovery including five trips to the operating theatre. Finally she was diagnosed a year ago with Elhers Danlos Syndrome type three, but now the geneticist thinks that she may have another type of EDS or Marfan Syndrome. The journey is not over and we also have the additional worry of her transition to Secondary school. I will log our experiences here in the hope that we might help others or at the very least it will be something to look back on to see how we managed.

On January 1st this year I went into hospital with pins and needles and ended up paralysed in both my arms and legs. My spine was inflamed and the coating of my central nervous system attacked. The condition is extremely rare but I was lucky that I had a consultant who knew to diagnose me straight away with Transverse Myelitis. I have regained some strength in both my arms and legs but I’m still using a wheelchair to get around. I can carry on improving for up to two years, but no-one can tell me if a full recovery will ever be possible. I’m finding my blog a great place to log my journey and raise awareness of this rare condition.

I Am Committed To…..