I'm only human to!
Another sleepless night for both of us. My Son he just won't sleep. 3am we are still awake. He's to afraid to sleep you see the seizures scare him so. He tosses and turns all night whilst they are at their worst. I lie awake and watch him there's nothing I can do. Make sure he is safe and not lying face down.
It's such a weary life at times no one understands unless suffering just like you. Was supposed to go swimming this morning, cancelled as so very very tired.
My Son he is at school sleep deprived also. He manages as best he can. What he really does not grasp is lack of sleep a major contraindication of Seizures. His medications are vital which he really does detest. They have to be strictly monitored and given by mum, or he would forget to take. His awareness is none. He does not see the full impact of not taking them.
One day at a time' the song goes, which is very Apt indeed. We cannot plan ahead. We cannot plan anything. You see, we really just don't know when the Seizure will occur. The Events are numerous and sometimes lasting seconds, blink and you will miss them. To a vigilant eye you'll see the strangest in his eyes.
I cannot emphasis enough that Epilepsy is much more than people's perceptions. It's very much a curse which renders sufferers lives and families very much. Some are lucky enough to have family support. Some are maybe not. Invisible illness and the total lack of knowledge from people make Neurological Conditions ambiguous to say the least.
As a Parent/Carer for my Son the battles have been fought. A few they have been won but the quest carries on. Sometimes it's gets too much as I am only one. This Voice will carry on its the least I owe my Son. He was dealt the cards in life which were not very nice.
Epilepsy needs a cure and it's out there don't be fooled, it's simply underfunded globally.
This very tired mum will carry on as usual. I have to be his rock as who else would care for him.
Sleep is so important for the sufferer and their families.
Local Authorities need to know that having a child or young person with multiple disabilities, needs high levels of care and interventions.