Tightrope sleep walking.

The early hours of yesterday morning were quite tough for me. Nothing has changed really it’s the norm and has been all my life caring for that matter. My son had a seizure in the early hours and he was very loud. The morning had broken that’s for certain. It started at 2.00 am and the aftermath caused it to last until 4.30 am.

My son had had a seizure and he was so distressed as it was going on he thrashed about in his bed screaming ‘like he was literally fighting ‘something’ for at least 20 minutes. During that time I was unable to gain entry to his bedroom as he was hallucinating and even trying to talk to him was making it worse and intensifying the situation. He wasn’t with it and nothing can change that once it starts. When he had calmed down a little it was possible to enter his room and not before. This is not new this is something he goes through very often at night and has done so for most of his life. He is brain damaged, there is no cure.

Eventually, when he had calmed down a little it was possible to enter his room. I put his light on and he cried intensively, shaking like a leaf. He shifted up the bed as he wanted me to comfort him. I hugged him tightly and reassured him it wasn’t his fault. He was saying sorry which he always does. I wiped his eyes and he blew his nose and I continued to reassure him everything was okay now. It’s heartbreaking situation as he can’t control the terror associated with these seizures and it is pure terror he’s experiencing. An intense feeling of terror, he can’t prevent happening and terror he never knows just when will happen either.

No-one can ‘take it away’ no-one can stop it happening. No medication can stop it happening many have been tried and unfortunately medical science does not hold an answer to a cure. It is very technical and very complex to deal with.

I’ll describe just how complex it is from my point of view as the one who has been and is caring for my son for 31 years. It is more difficult than learning to walk a tightrope without a safety net. Most tightrope walkers learn very young how to perform the skills of ‘walking the tightrope’ and only then are they skilled enough to be able to balance without falling off.

I have learned the skills of caring for a complex combination of disabilities and mastered them enough never to fail to be able to deal with the extremes of what my care entails for my son even in the early hours.




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