For most of my life for one reason or another I lived in fear... then I became a mother and as if by magic I was no longer afraid... With my new role I changed, I grew and I blossomed. No one fitted the role better or more perfect... She was my beautiful girl, my heart-beat and I would always make life comfortable, safe, secure and happy... Unlike me she would have more than the basics in life, I would go with-out and I'd always make sure she felt the sparkling, enchantment of her precious childhood...
If you’re like me then sometimes in this life you may wonder ‘what the hell happened’ or better still ‘how do we get through this’ or maybe more realistically ‘how do we live with it’... the ‘IT’ in my world is continuing to deal with the fallout that we as a family are still experiencing since 2009... If you have read my brief but personal account of that horrendous time http://angeljanesworld.blogspot.com/2011/08/desmoid-tumour-research-foundation.html then I’m sure you will know, maybe even understand the devastating effects that something like that can have on a family... During the past two years my journey has been hard, because not only am I struggling to accept that my beautiful girl has a lifelong condition but also the intense horror knowing that to date, there is no known cure... the doctors, even specialists all seem to have different view points and no two treatments appear to be the same, which is terribly disconcerting.
I use to visualise my life’s journeys as a magical, shiny yellow brick road, the one from the film, ‘Wizard of Oz’ that path has not been an easy one and like others I have occasionally veered off from my journey, but since the’ IT’ came into our lives, it’s been extremely hard to visualise anything... sadly this has managed to send me spiralling emotionally out of control towards a darkness that I really didn’t want to penetrate... As a mother I don’t need to tell any parent how it feels not to be able to make it better, but when not making it better means not being able to do anything at all to ease your child’s worry’s or hurt then it’s hard to come to terms with. For me personally, it’s fallen into me being just ok, managing and supporting everyone else, to me screaming silently for someone to save and support me. All this accumulates into a deep, dark stress which overwhelms a person into believing the opposite of everything they once believed... I use to believe so much prior to this and I always produced a happy face believing even if I wasn’t really happy, the fact I was able to convince others I was, made it better...
During the last two years I believe I developed illnesses when there wasn’t any. I felt darkness come and it stayed, because I made it easy to remain... I stopped confiding in my loved ones because I felt they had enough to cope with without me adding even more pressure. I genuinely thought I might die if I allowed myself to think of the unthinkable and although I’m not through the hoop yet, I made an important decision a couple of weeks ago... I sensibly decided, I’m no good to anyone in my present state and the best thing to do was tell the Doctor, tell him how I truly felt about things, instead of keeping most of my thoughts to myself, pretending to be half ok... With that enlightening admission, a wealth of help and support came and do you know what? ~ It meant I didn’t overwhelm my lovely family with all the gory details of how I was feeling, which helped me feel much better... After my disclosure, my clever GP referred me to the Gym, where I‘ve taken up Tai Chi. I also start Buddha meditation classes next week, something I’ve always been interested in... Already my pulse rate has lowered, maybe that’s an indication of how it’s going to progress. I’ve read recently about the Buddha principles, of their way of life and what it means. I don’t quite understand meditation except to say its explained simply as a tool for developing qualities such as inner peace, love and patience, all of which I need right now. On that note I will keep you posted and blog about my first night... which will be next Wednesday.
To update my girl’s progress... A couple of weeks ago Christies offered her amputation, I can tell you right now, at that moment in the clinical, pristine consultation room, our world stopped,collided and crashed... I didn’t want to breathe, when I looked over at the consultant, I saw clearly he'd also stopped breathing... such news is obviously as painful for them as it is for us to hear... looking over to my girl, I saw big blue frightened eyes, they said it all... to this day, I’ll never know, how I managed not to cry my heart out...
If I tell you I have the strongest girl in the world then please believe me, because within 10mins of hearing that dreadful conclusion, she was up using fighting talk, advising me that no way was anyone taking her arm off... Her words not mine>>>She continued without taking a breath>>> I would rather live a short life being able-bodied, then a long life disabled and miserable... I tried to talk to her about people managing with these very sad conditions, her argument, we are all different mum and for me it can never happen... For someone so young It struck me I'd brought up a very strong, opinionated individual, who has her own mind and is ready for the fight. My own conclusion to that awful day in the consultation room >>> If she can fight this, then so can I...
We’re a team, bonded heart body and soul.
