Hence the title of this blog, none of us know what is in the plan, we may not have control of what is happening to us but we have control over how we respond to it. That's what this blog is all about, my story, how I chose to respond and hopefully by telling my story helping change the world, even just a little bit.
I've been writing it since 2008, initially just as a way of capturing events but it's grown and grown since then and in the near future will even become a book!
Until Daisy's arrival I was a driven, ambitious, marketing professional, working full time and worrying about childcare, global warming and the best route to get to work.... This all changed when she came into our lives. Daisy was born prematurely in 2004 and soon afterward was diagnosed with a rare genetic condition - Costello Syndrome. At the age of 3 she developed intestinal failure and since then has to receive all her nutrition directly into her bloodstream via a central line into a main vein near her heart.
Suddenly I was confronted with a situation which was not in the plan, my career went out of the window and I found myself a stay at home mum of a small, vulnerable girl with very complex needs. If that wasn't enough, not long afterwards my eldest son was diagnosed with Asperger Syndrome (now called high functioning autism) and we found ourselves on yet another special needs learning curve.
As if all this was not enough, in November 2014, my rock and soul-mate, Andy, was diagnosed with incurable advanced bowel cancer, the disease that killed my dad 15 years previously. We soon realised that our experience with Daisy had prepared us for this latest challenge and we met it head on with positivity, optimism and a fighting spirit (as well as a wicked taste in trench humour).
Andy passed away on 14th December 2015 and I began a new chapter of my life as a widowed parent.
Our hearts were truly broken, none more so than Daisy. Her health had begun to deteriorate before Andy died and 13 months after he died , Daisy joined him as she passed away in the intensive care unit at Great Ormond Street Hospital. Although the death certificate said septic shock I truly believe it was her time and she needed to dance with her daddy in the stars.
By writing this blog I try to reflect the issues faced by so many families like ours and speak for those who cannot speak out.
My other passion is running - it keeps me sane and allows me to eat cake. I have run several marathons (including 4 London Marathons) and an Ultra marathon and have raised around £10K for our hospice in the process. I'm branching out into open water swimming and cycling...you know what's coming next don't you? Some call it a midlife crisis, I call it an alternative to prozac!
And here's a few things to help you get to know me better:-
1. I love live music, especially going to festivals, Glastonbury festival is my spiritual home, it's where I go to recharge my batteries for the next 12 months ( and if I can't get to Glasto then I go to Latitude). I love being in a crowd singing along to my favourite song or discovering new music as I walk around the festival. I love the music of Bowie, Dylan & Cash. My blog strapline "don't think twice, it's alright" is from one of my favourite Dylan songs
2. I met my husband, Andy, when I was 20. I was at the University of Kent studying for a degree in Anthropology. We met in a pub, it was not love at first sight but over the weeks I fell in love with his intellect, wit and mutual love of food and music.
3. I was born and raised in Wales but on graduating from Uni, Andy and I moved to London so that he could attend Drama school, London is my home town, I love living here, I cannot imagine living anywhere else in the world. I consider myself London Welsh.
4. Four children were always in the plan, the rest we made up as we went along. (for those who are interested in the detail; Theo was born in hospital after a very long extended delivery with lots of interventions, Xanthe was a drug free hospital water birth, Jules was a drug free home water birth, Daisy was a premature caesarian delivery).
5. I liked gin before it was fashionable to like gin.
Have a look at this post I wrote explaining why I blog - Why I do it?