Do I inspire you?

I heard this week that my blog has been shortlisted in the the Inspire category of the equivalent of the the blog oscars, the Brilliance in Blogging Awards or BiBs (some of you may remember that two years ago I reached the final of these awards).

Help me run the London Marathon again (my first VLOG)

I am delighted to be a finalist in the competition to be one of 4 official London Marathon Bloggers for the 2014 race.  I am down to the final 15 and now the competition has gone to public vote.  I was asked to make a 90second video on why I wanted to run the London Marathon and this has now become my first foray into Vlogging (video blogging).  Xanthe helped edit it and the ukelele soundtrack is also provided by her.

I was not given much notice to make the video and Daisy was also pretty poorly at the time so it was put together on a Sunday while we were also liaising with the hospital on what new antibiotics to start, delivering blood samples to the ward for analysis and dealing with her seizures and pain - no wonder I look slightly manic in some of the shots!

As you know, and the video explains, I love to run and it helps manage the stress with my life with Daisy.  I ran the marathon this year and here are the two blog posts I wrote about my experience with marathon running and why I do it

A tale of three marathons

A tale of three marathons - the postscript

So - if you would like to help me fulfill my wish to run a sub-4 marathon and raise even more funds for ShootingStar-Chase please click on the link below to vote (it takes seconds!)

VOTE FOR STEPH!

What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.

I'm a kitchen table revolutionary

I went to my first ever conference for bloggers last week. What an amazing experience to completely immerse myself in the world of blogging with hundreds of like minded women (and a sprinkling of men), hear some inspiring speakers, ask lots of questions and just have time to really think about where am I going with my writing.

I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.

Why do I do it?

So why do I write this blog and bare my soul to thousands of strangers week in week out?

I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years.  I wrote my first  post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.

Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome.  Similarly, Theo, our oldest son,  was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four.  We had no inkling of what was to come.  A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable.  It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post