I have well and truly lost the plot.
Life is rather full-on, Sam is having yet another growth spurt so his meds need tweaking to keep things stable and I never realised how much admin one human would be expected to do on a daily basis!
I’m a Mum, but at times I’m also my son’s social secretary, appointments clerk, general manager and when needs be resident fire-breathing dragon… it all takes a phenomenal amount of juggling.
Currently however, the bane of my existence are meetings; EHCP meetings, care agency meetings, and this week an absolute joy to attend: a continuing healthcare (CHC) meeting to ask for more funding to ensure our son’s safety.
Mutters darkly into mug of luke-warm coffee (already twice reheated in the microwave)
Of all the appointments and meetings we navigate with the Dude, I think this one is the one I find toughest.
While at the same time being incredible grateful that we have such support available to us, it’s the meetings equivalent of a slap round the face with a plank of wood.
There is no getting away from the hard facts that our son is very vulnerable, and that even the additional support he receives in the way of a wheelchair taxi specifically for him together with his own passenger assistant is no longer enough to keep him safe on his journey to and from school.
It is a very bitter pill to swallow.
The extra funding is needed because the Dudes seizure control has deteriorated, and his wonderful passenger assistant is not allowed to give him oxygen, emergency medication or use his suction machine should he have a severe seizure while in the taxi.
It means he needs a nurse or other trained person to travel with him and that costs.
We’ve been through this circus before. Twice.
First time we applied for funding for overnight care – it was granted but no care agency took up the contract.
We reapplied, this time to be rejected because he basically wasn’t disabled enough.
I think that was the day something snapped as I realised that we would have to fight tooth and nail for everything he needed.
We’ve been fighting ever since.
I don’t know what the outcome of this application will be. For now Sam is happy, enjoying life and having a blast at school so I’m happy.
After all, that’s all any parent wants for their child isn’t it?
Today is a good one. For now, tomorrow can take care of itself.