Am I wrong? Am I crazy?
Apparently I am over anxious… a nervous, neurotic mum.
Yesterday I sat and listened once again to a room full of people discussing what they feel is best for my warrior.
There were three of us present who know our warrior inside out, there were one or two people who know our warrior well enough to speak up for her… the rest were people who have seen our warrior once or twice and read about her on bits of paper.
The facts speak for themselves….
For four years I have been asking for support for my daughter’s seizure triggers…. for seven years I have been asking for better monitoring of my daughter’s epilepsy…. for two years I have been asking for her medication to be reviewed…
Since social services were involved over my refusal to agree to any medical procedure that would harm my daughter, all of the so far useless agencies have been made to do their jobs properly.
And the results of that is that our warrior has gone from needing rescue meds 3/4 times a week to only needing them once every three weeks.
Her seizures have reduced from 20+ a day to 5 a day.
She is happier, brighter and we are ecstatic!
So, everyone should be celebrating, right? Everyone should be looking at what’s working and pulling together to make sure this continues, right?
Everyone who loves our miracle and cares about her is thrilled.
Her beloved ta’s at school who worked so hard to get this result have been banned from talking to me… at the meetings these people who in my mind are worth more than the god-complex consultants are pulled to pieces, their invaluable knowledge of my daughter is dismissed.
My daughter’s siblings, one who is medically trained and was a young carer is ignored.
I am patronised and accused of being anxious and overly worried about nothing.
My daughter’s respite care was removed, her carer (my mum) is not listened to.
The people that DON’T know my daughter are being given the floor.
These arrogant, misinformed people have decided that my daughter is best placed in a facility, alien to her, away from everything and everyone she knows for a minimum of three weeks.
They can’t after four months of asking, give us an explanation of what they will be doing, why they will be doing it or what they expect to get from it.
They have said that they want a complete assessment of her seizures, behaviour, triggers etc…
We’ve pointed out that to take a child with complex issues, who is reliant on routine, familiarity and who is reactive to environment and put her somewhere utterly different with so much change will trigger seizures and meltdowns.. Will distress her and has a high risk of a status seizure resulting in coma and possibly worse.
They agree this is a risk. But, they say it’s worth the risk, even though right now she’s doing well.
Even if we could support her enough to prevent a status seizure, how do they expect to get an understanding of how she responds to her world, when they’ve taken her out of her world?
What knowledge can they gain from this? Why is the knowledge we’ve provided dismissed and rejected?
Unless they’re not interested in our warrior as an individual but more interested in what paper they could produce with results from any experiments, I mean assessments they were able to do…. (hmmmm)
It’s a circus.
Am I wrong to refuse? Am I wrong to ask that her best interests be the most important thing? Am I wrong to ask that we find a way to get results without putting her at risk?
I’ve soul searched on this… I’ve looked at it from every angle…
I’m not wrong. I’m not crazy.
Our warrior deserves to be heard… and if they won’t hear her roar, mama’s going to roar for her.
Am I wrong? Am I crazy?