So this week I’ve had the unenviable task of keeping a detailed diary for our continuing care assessment.
Every nappy change, wake up, seizure and activity detailed in nauseating detail. And it really really HURTS. Why?
Because it forces me to record all the events that make our lives so different to what we had expected. It means I have no choice but to acknowledge just how many of the vile seizures my little man suffers on a daily basis.
He is such a lovely, happy little boy but when you have to examine every smile and every laugh to ask whether its joy or seizure activity.... lets just say it sucks the very life out of you.
It's a truly hideous experience, however it is a necessary evil, a means to an end.
It will hopefully drive it home to the people who make the decisions over whether or not we get the care and support we so desperately need that we do, DESPERATELY, need it.
The agreement is there in principle, however now we have to show just what life is like on a daily basis, and if I’m honest a lot of the time while we don’t ignore Sams seizures or how much we have to do, there is a certain level of acceptance that this is just how life is.
Its no better or worse than anyone else’s. it's just different.
One upon a time they had a terrible power over me; they would leave me terrified to let my child out of my sight, too afraid to fall asleep in case one hit in the night and I missed it, and the fear of one hitting while we were out and about meant that I was in danger of becoming a prisoner in my own home along with my precious boy.
Over the past 4 years we have learnt that life is for living, and that while SUDEP (sudden unexplained death in epilepsy patients) is a very real and very frightening thing indeed, it is also not a common occurrence.
That doesn’t help if it happens to be you it happens to - just like with Sam's condition statistics means bog all when you’re the 1 in x many 1000 affected.
Our defense is to live and to cram as much joy into every day that we can; and to ensure that Sam is treated like any other 4 yr old little boy as much as possible.
We try not to wrap him in cotton wool, for example sending him off to school in a taxi with an escort.
But today having to note down each and every twitch, every seizure, and so on.... today there is a small chink in my armour and I’m feeling very vulnerable.
There is but one cure for this situation and I intend to make use of it.
I am off to bed, to cuddle my favourite little man in our bed while his Dad, bless him, sorts out the laundry and makes sure all our animals are fed, safe and in their respective beds.
Three days of the diary done, only two more to go.
The portable activity kit. Fun therapy at home or on the moveFind out more