飛吧！格子籠......

I don’t know how many personal stories are on the internet. Thousands, tens of thousands; all those individual souls tapping away in their own homes, voices longing to be heard. So why am I here, adding my words, bidding for your time, begging for an ear? Some years ago my world was changed, suddenly and dramatically. Overnight there were new rules to learn, languages to speak and an emotional epic I was ill prepared for. I think I’ve been through all those stages of adjustment (what are they now? Fear, denial, anger, sorrow, acceptance?). I’ve had awe-filled spiritual highs and some soul-crushing lows and now I’m here. Still afraid, still angry, still sad, definitely accepting and wrestling with denial on a daily basis. Here, writing it down, working it out, trying to find a way to be in this extraordinary life. And I’m doing it publicly because human contact is everything to me, and a little company on my journey might help keep the demons at bay.

Mine is a long story and maybe I’ll go over the background properly at another time, for now the salient points are: My youngest child, Felix, is severely disabled; his identical twin brother, Theo, died aged 7 months; I have 2 other children, Evie who is just a year older than Felix and a teenage son Joey (from my first marriage). I am married to my soulmate, Danny, and we live in central London.

I’m a writer. Much of my work is around the issues, both good and bad, that my family and I have faced over the past 10 years: disability, bereavement and addiction, but also love, joy and hope. I have been politically active since my early teens and this also informs most of my writing in one way or another.

Felix, born in April 1999, is has a condition called Nemaline Myopathy. It’s classified as a rare form of muscular dystrophy although the jury’s still out on whether it’s a truly progressive disease or not. Felix has the severe form, he is on a ventilator, tube fed, uses a power wheelchair and has a whole set of issues arising from his profound muscle weakness. Before Felix and Theo were born, disability was something that didn’t touch my life, now it is at the heart of virtually everything I do. I want to make sense of all this. I want to be a good mother to all my children of course, but I want more than that. I believe that we are all creators here, that the facts of our lives provide the raw material from which we build our own worlds. I’m trying to build something good and beautiful for myself, for my family and (in my more grandiose moments) for posterity. Sometimes it’s very hard to remember that, to not be swallowed by negativity and fear. Writing is part of my attempt to keep hold of the bigger picture and looking at the stars.

I have another motive for writing. As Felix reaches school age, as he starts to become socially independent, the reality of life as a person who is disabled starts to sink in, for him and for me. Getting him the education and opportunities he needs is already a challenge, and there seems to be no well-worn trail for us to follow. A child, kept alive by machines and living in the community is still very rare (this technology is quite new), no one really knows about long term implications. So, we are breaking new ground and trying to create a space for Felix in the world. There are certainly many battles to fight, but also a golden opportunity to create a template for the care of these children based on dignity, respect, optimism and love. This will (I hope) serve as a record of our journey, and maybe a signpost for others.

Thank you for being here, it matters to me. Don't underestimate the power and importance of an audience, however intangible. I have already gained so much comfort and support from my ethereal, virtual communities; invisible friends have carried me through some very dark times. If you want to comment on anything here or write to me, please do. You can also sign up to be emailed whenever I add to the site. Welcome.