A friend recently commented that I used Facebook like a blog so why don’t I just start a blog? After years of being teased mercilessly about the frequency of my posts, I thought he may just have a point. So here I am. My life is complicated for someone who doesn’t work. I am a Californian in her early forties, who moved to England when I was a child. I was on my way back to California via London in my early twenties, when I met Mr G and that was that. Never quite made it to California to live. I have worked in investment banking, trained as a make up artist, run my own wedding planning company with a dear friend and am now a full-time carer for my 6 year old daughter, Moo, who has bonus features, including a tracheostomy, due to a very rare genetic condition that she inherited from me called Osteopathic Striata and Cranial Sclerosis (OS-CS). Hence the title of my blog as I am, what is known as, a spontaneous genetic mutation. The sperm met the egg and went ‘whoopsadaisy’. Last year, she also developed Moyamoya disease which was completely unrelated and was just pure bad luck. We three live with our two cats, George and Rudy, in suburban London. I also have an eclectic range of interests and passions, mostly of the creative persuasion. I am a jack of all trades, master of absolutely none, but what I don’t have in talent, I certainly make up for in enthusiasm.
The ambition I have for this blog is really to share my journey, my interests and also to share my experiences in the realm of special needs. OS-CS affects two in three million people. The chances of finding out any useful information on the web is slim. When parents first get a diagnosis, it is terrifying and by sharing Moo’s and my journeys, I am hoping I will be giving them some hope that all is not lost. I wouldn’t change my Moo for all the world, even during the bleakest days and, boy, were they bleak. We are not out of the woods yet. She is still classified as having two life threatening conditions but we choose to accept that and live a full life.
My blog will also incorporate some of my views, which are strong, about various things in life and I so hope not to offend anyone but I am bound to. The light relief will no doubt come in the way of things that Moo does and says (she is hilarious) and my mad ass family who live all over the world. It won’t be all doom and gloom and ranting lectures, I promise. So thank you for taking the time to read this and hope I haven’t bored you into kingdom come.