Not sure for whose benefit I am writing this blog?
My facebook musings are getting too long and too frequent, I have a lot to say and nobody to say it to, so I have decided to start a blog.
A bit of background:
I am Jo. 41, mother of two, fairly recently separated, haven't had a decent nights sleep for 7 years (and you can tell!)
In my previous life before children (BC), I had a "decent" job, not a lot of worries, a few spare quid and a "normal" life.
My eldest child Ollie (Boy 1) was born 8th June 2006. It was clear after a few weeks that all was not well. We were swiftly moved to the care of Great Ormond Street hospital, where a diagnosis of bone marrow failure was given.
To cut a long story short, Ollie had a bone marrow transplant, spent most of his first year in hospital, and finally came home in May 2007.
Thinking that the nightmare was now ending, we waited for Ollie to start making his developmental milestones as his health improved. Nothing happened. His health improved. Still nothing.
As the next year unfolded, it became clear that there was more to Ollies condition than the medical "stuff" .
The next big thing was the arrival of Harry on 16th Jan 2008. Conceived the week we left Great Ormond Street (oops), a horrific pregnancy marred by the prediction that Ollies medical conditions carried a one in 4 chance of reoccurring, God awful pregnancy complications, and the day to day difficulties of looking after a tube fed, non sleeping and very hospital based older sibling. However, all the worries disappeared once Harry arrived. It was like having a different species of pet this time around, I had no doubt that he was going to be fine.
Fast forward several years to now. One failed marriage behind me (dad is still actively involved but the day to day responsibilities are all mine), and a dramatic change in lifestyle.
I was made redundant while Ollie was in Great Ormond Street, and it is now clear that I will never return to my past glories, the cost and impossibility of finding childcare for a disabled child mean that working a few hours a week for minimum wage on a zero hours contract is the best I can manage. I hate it, I am reliant on tax credits and the value ranges in the supermarket to get by, but I discover it isn't all about the material stuff (although if anyone is offering, I wouldn't say no).
However, it is not all bad.
Harry is now a bright, healthy and active 5 year old, I feel bad that his life has been blighted my my inability to keep my relationship together, and the fact that due to his brothers needs, he has had to grow up fast and become self sufficient. However, despite my failings, he is a caring, happy and loving boy, who gives me massive pleasure and drives me nuts in equal measure.
Ollie is now 7. His health is stable currently and our hospital time, although still there, is way less than it ever was.
He has completed 3 years at Samuel Pepys special school, a fantastic place where he is much loved and where he loves to be.
He can now walk, in fact he can run. Bloody fast. He has a lot of physical issues, his movement is very "C3-PO" and he cannot jump etc. However, the big deal is his learning disability.
He has no speech at all, very little understanding, and exists in his own world for most of the time. I am no where nearer finding out what his overall condition is. We have collected labels and diagnoses for various parts of his condition, but lack a name for the overall problem. This labels him as a "SWAN" child, possessing a syndrome without a name. For the record, his recorded issues are:
Rothmund Thompson-Syndrome (explains the fact he is diddy small and has his facial disfigurement)
Myledysplasia (the bone marrow thing - now controlled by the transplant)
Autism (although not a formal diagnosis as he is too developmentally behind to be formally assessed)
Global development delay
Sensory Processing disorder
Lack of Propreoception (his brain gets no feedback from his muscles so he doesn't know where his limbs are - hence the weird walking)
A fairly impressive list in anyone's books, and it gives him a set of hospital notes way heavier than himself.
Ollies likely future is very much unknown, and it is a little spoken of fact that his condition is likely to be life limiting. However, due to the fact nobody really knows the extent of his issues, I have no idea whether that will mean living until he is 8, 18, 28 or 80. So, for the moment, we live in the present. There is plenty that day to day life offers in the way of distraction. Intolerant of much, liking what he knows and knowing what he likes (very small list), presents a lot of challenges.
I love my boys, they make me laugh frequently, cry often and question my sanity constantly. Going it alone is way harder than I thought it would be, but I have good friends, some great family (no names, no pack drill) and if it all goes wrong, the support of my two mates, Pino and Grigio, to help me though.
That will do for now. Hope you are still awake and I will post more soon.