Since May I have made some terrible decisions.
Some I have had to make.
Some that I wanted to make
And some that I made and regretted.
Very few people know about the full extent of what was being expected to happen today, I didn't find it necessary to furnish or indeed burden the world with the anxiety put on us about this particular day.
But all my decisions to come, go, yes and no have all been based on my emotional stability centred around something that happened today.
The timing was rather bad in light of Belle going back to school and the progression of her medical care (which is unsteady).
I went, with Belle to a tribunal to have to fight for her mark on this planet, her identity within the community and a foothold within a system that has failed her.
I didn't want to initiate a tribunal but when the "men in grey" make decisions based on uniform standards, the system kind of caved in on the lack of flexibility. This in turn let Ellenor down (oooh Sunday name coming out there!).
So we had to get our fisty cuffs on and start a fight.
Both Mark and I would do anything for Ellenor.
It is our prime goal in our life.
She really is the apple of our eyes.
We love her so much that it makes us want to cry.
Do you know that feeling?
When you look at someone you love so much you can feel your heart wrenching inside and you get choked up and you just want to protect them forever and love them forever and hold them so tight. You want to smother them with affection and breathe in their scent and kiss them all over their cheeks and look so hard into their eyes to search for that little signal that you mean that much to them too.
You see, the Disabled Living Allowance cant make a decision about Ellies problems because the Medical system can't pin point her condition. The Local Education Authority have no grasp on the finer needs of children with "Mysterious" syndromes - mix all that in the pot and you get people scratching their heads and throwing darts, blindfolded, on a score system to come up with random answers that create tribunals.
Both Mark and I have to fight and fight and fight and it gets to the point where I have nothing else to do but bang my head on a brick wall.
Nobody comes up to you and leads you by the arm for a nice chat about all the possibilities and support necessary for a child like out beautiful little girl.
Nobody volunteers simple solutions to everyday problems.
You really do have to roll your sleeves up and push and scream and beg and cry and bleed to get one rung on the ladder of acceptability, reliability, sensibility or indeed responsibility.
I know I am talking like I expect you to understand and for that I apologise, bear with me. **Those with children who have special needs so know where I am coming from - please holler and help me out please!**
So anyway, we pitched up at the tribunal (part deux, I may add - they couldn't make a decision first time around due to lack of evidence... can I just say that the lack of evidence was a total and utter fake-o fob off. THEY actually hadn't read her notes and were not in receipt of all the facts and they are the ones dealing with the tribunal).
Eeeeeer, where was I?
I'm not going to go into every detail but lets just say that with the questioning from one Doctor alone I actually felt I was on trial for terrorism. I know its his job to ask questions but we were only trying to get her a mobility allowance to help with getting out and about.
He wanted to know why this and why that and why the other in such a fierce and humiliating manner.
He was aggressive, he demanded why we didn't use public transport to get Ellie about (Er, hello.... RANDOM and erm - pushchair for starters and the fact we have a car).
He wanted to know why we hadn't seen a certain Neurologist (you tell me, Mr Spitball).
Why Ellie cant walk (You tell me, Mr Vein-popping-out-of-your-head)
And he continued to ask me questions that even a surgeon, clinical geneticist, a dietitian, occupational therapist, orthotist, peadiatry technicia, speech therapist, optician, neurologist, orthodontist, heart specialist, physiotherapist, the frikkin street cleaner, the world and his dog cannot answer. He literally was foaming at the mouth with his questioning and I don't know how the hell I kept my cool but I didn't even cry.
And I always cry.
In fact i wanted to burst out laughing even though it wasn't the slightest bit funny - do you know that feeling?
Perhaps Im hard skinned after all and never knew it.
I get prodded and dissected by two other people on this "independent" panel. Both asking questions with furrowed brows and peering over their glasses like Im a naughty girl. I swear down I wanted to stand on the table and do the wedgy dance just to lift the emotion. I thought about it but realised that I would have broken the table else. they asked Ellie a lot of questions too, lots of leading, intrusive questions in hope of catching mark and I out. they asked why she didn't play out and did I allow her to play out. They asked her about her feelings and she answered honestly without any interruption from me. I was really chuffed with her. Little love.
So anyway, they asked me to leave the room to make a decision which I did. And we got called back 10 minutes later with Dr Rabid Dog still firing evils in my direction.
**At this point I would like to point out that I am not generally disrespectful but today I am allowed to be judgmental because this guy was a complete and utter *********** - fill in the blanks**
The decision, although not entirely fabulous, was enough to prove that we were not swinging the lead and that being presented with Ellie for them to actually **SEE* was enough to sway them into our best interests - which is Ellie. A result, but at a price. The fight goes on still, this is one battle in a bit of a shitty war.
Flamin nora, Im knackered after typing that.
Well done if you managed to stay awake.