Where it all began

I started blogging two years ago when my littlest boy L was diagnosed with a rare genetic disorder called 18p deletion. The emotion, stress and pressures of our lives at the time sent that blog account spinning towards the recycling bin soon after.
Today, Friday June 3rd 2009, fresh from the first upsetting and draining school appeal for my J (that I’ve just attended and lost) I am back, wanting and needing to howl at the (virtual) moon.
I’ve lived a lot of life in the past five years with deaths and illnesses and the life-changing news about my little L and his magic DNA. To spend 9 months of pregnancy, ill, scared and knowing something was wrong with my baby only to be treated like a neurotic hormonal woman. To spend a further 9 months rushing that child in and out of hospital laid flat by simple colds, breathing so loud you could hear him in the other room, missing milestones and silently imploring me to keep banging until someone heard. Clarity came with the grey haired wisdom of the paediatrician who listened, checked and finally found what I always knew had been there. To spend the next two years acting counter-intuitively as a loving mother by continually telling people that he wasn’t normal, that he isn’t perfect, and having to self diagnose his now numerous medical, neurological and behavioural disorders.
Two years on and I realise my DNA changed at the beginning of this journey that with tears in my eyes I’ve just read back to myself. But because of the magic and wonder, curls and smiles of my glorious boy, those ripples haven’t started moving out yet. Life is just the same for everyone around us. One family and their reluctant inability to get it. The other that gets it but is too far or busy to be part of the support network. The medical world and the lack of facts that they like to find comfort in. The authorities who hide under paperwork and red tape, hoping you won’t find all that they could be doing for you. There’s no box to put L in, or support group to help shout and bang my drum and having banged and crashed and seen with such clarity for so long alone, I find it almost impossible to ask for help, even when it presents itself.
My battles are just beginning and I am made whole by knowing that this is my job and that I wouldn’t trust anyone else with it. And nor would he. I feel his pain and am surgically attached to him when communication or his high pain threshold means that he can’t recognise if something bad is going on. So two years on and life is no less confusing or lonely, except for the small and globally scattered handful of 18p- parents that I found, was overwhelmingly welcomed by and despite them feeling like the ghost of Christmas future, could not now do without.