Devil on the Shoulder

Joshua was with my good friend yesterday and I had received photos to show me the fun that they were having together : Playing fetch with her dog, sitting in her garden, playing her son’s guitar and walking out in the park. A picture really does say a thousand words and I could relax, knowing that he was having fun and that he was in good hands. I had some chores to do in our home town and as it was sunny and we were Joshua-free, I decided to cycle into town and just because he could, my husband joined me. A sunny bike ride is a real luxury as we cannot both go out together when we have Joshua in tow. So even though my husband soon developed a flat tyre and had to try to fix a puncture, then bought a new inner tube, I was still smiling as I sat in the sunshine while I watched and waited for the repair, so that we could resume our bike ride. We collected Joshua’s prescription from the chemist, we collected my tupperware and funds raised from the hairdresser went to the Bank and then we cycled up to a retail park, where I bought some bargain walking shoes and we ordered a new bed for Joshua. So it was a very successful morning, we even had time to relax with a latte in the sunshine.

As soon as I got back, it was time to drive to my friend’s house and I texted her to let her know that I was on my way and she sent me a picture of Joshua having a nap on her settee. When I arrived at her house, she opened the front door for me then disappeared quickly inside, so I knew something was afoot : she had needed to give Joshua his emergency medication, to stop seizures, just 5 minutes before I had arrived. Joshua was lying on her settee twitching with his eyes rolling, which was not the welcome reception that I had hoped for. I replaced her and slid in behind him, allowing him to snuggle into my chest and we assumed a familiar pose. My friend was upset that his visit had ended in this way, as he had been having fun but I reassured her that she had been an Angel; that she had done the right thing, the Midazolam had done its job and stopped the seizures and Joshua had come to no harm, he was safely on her settee. I stayed in that position for about an hour, while he dozed and she brought me a pot of tea and we chatted. The threat of epileptic seizures is always there and they like to catch us out and remind us who is boss, it really is the devil on Joshua’s shoulder, but it could not take away from the fun that they had had together and the break that it had given to me too.

After about an hour, we had decided to move Joshua which was a two person job; he needed changing as he had soiled himself during the seizure and I needed her to help him to stand up by leaning against her, while I changed him. Then he sat down while I put his splints and boots back on, but he kept wanting to snuggle up on the settee rather than being bothered to get dressed and leave. We walked a wobbly Joshua to the car, which raised a smile as I had the roof down of the car, and he loves an open top drive on a sunny day. She bid him goodbye, still sad that their time together had ended badly, again I tried to reassure her that she had done everything right and he had chosen the best time really, as I was on my way already. He dozed for most of the drive home and I reversed into the yard so that he had the shortest walk possible into the house and I called for my husband to help us walk inside. I removed his boots and he curled up on our settee instead, where I could keep a close eye on him while I made a rhubarb crumble in the kitchen.

He was weary all evening, though he did wake up enough to eat all of his mash tea and then to warm and clean up in the bath. When Joshua has seizures and has Midazolam, his hands go clammy but cold, which is a really odd combination, but then, only a bath will warm him up. In his clean PJs , he climbed into bed ready for me to read him a story and then take his bedtime medication. He only got up once, to be put back into bed and he briefly came into my bed for a cuddle overnight, but he is back in his own bed now. I will allow him to wake naturally this morning and when this is, depends whether or not he will make it to daycare today. I am hoping that he wakes up his usual time, with his brain reset and happy to go to Play, but if he is not up to it, I am happy to take good care of him at home.

Joshua’s seizures have unfortunate timing, as often they can be brought on when happiness turns to a more manic giddiness, perhaps he was having too much fun – if there is such a thing? or perhaps it was just due, it is a couple of weeks since he needed emergency medication on the way home from the dales. Whatever the reason, epilepsy is always lurking for the most inconvenient moments and likes to keep us all on our toes.

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