All night long

On our drive home this evening, Joshua started to roll his eyes and threaten a seizure, having been seizure free most of half term week. So I kept my eye on him in the passenger seat next to me all the way home – he kept saying ‘go’, ‘bed’ and ‘home’ so I was reassured that he knew where we were heading and what he was going to do when we arrived. I unpacked the car and gave him some cereal when we got home, then changed him into his pyjamas and popped him into bed.

Just five minutes later, he was out and bouncing around in the snug, still with his staring eyes. I felt his hands and feet and they were bitterly cold – he has poor circulation – so I suggested that we take a bath to warm him up and get him clean ready for school if he was not ready to sleep. He eagerly accepted my offer and headed upstairs to the bathroom. He almost nodded off in the bath so I was still fooled.

So we both snuggled into his bed, I always share when he is threatening a seizure, so that he is not alone when the fit finally comes.I was ready to nod off as soon as my head hit the pillow but not my naughty companion – he proceeded to tug at my hair to keep me awake. After an hour of that torture, I relented and we both came downstairs. My scalp was actually sore and he was excited to have won. I gave him some weetabix with warm milk, to try to encourage him to sleep, but so far, at 2am, there is no real sign of sleepiness. I think that we both might well be sleeping with our eyes wide shut, if this goes on much longer .

We have had a relaxing half term, he has both slept and eaten well, but now he is going to return to school with blood shot eyes from a night of no sleep. He is likely to sleep on the giant beanbag in his classroom and may even have the seizure that he has been brewing all night, and yet there is nothing that I can do about any of that, which is so frustrating.  Just because I can read the signs, can sense when we are anticipating an ‘all nighter’, it does not make it any easier to handle. The fact that we have had this scenario several times before, really does not help me much. I fear that it is going to be a long night….

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