Daisy And Me People I meet when on my walks with Daisy

2Nov/140

Halloween

Fred Halloween

This was a week of great days. Days when nearly everything goes right and Fred’s life as well as our own knock along as normal as possible. Fred will always ensure that every day is different no matter how normal it may appear. He’ll find a way of doing things or saying something that is just off centre making us either laugh or cry in the process. Our man has a knack of looking at life differently, sometimes with a single minded purposefulness that would take me years to get down on paper not to mind do justice to his way of thinking.

On Tuesday Ed Galvin paid us a visit, killing time between appointments . Fred came with us on a trip to the electrical shop as we needed bulbs for the kitchen. When I was growing up we had one bulb for the kitchen, a strip-light in the ceiling. Today in our kitchen, which isn’t much bigger than the one I grew up in, we have nine ceiling lights, six under shelving ones plus the two in the hood over the cooker. Energy crisis? What crisis? Anyway I needed to replace some bulbs and we drove over in Ed’s Bentley.

Fred took the front seat, Dad was relegated to the back and at the store Fred took Ed’s hand. In the store he stood near Ed watching what he was doing and taking in the new experience. For me it was great as Fred stood still, wasn’t pulling at everything and not asking to buy a torch, for once.  No doubt Ed had an influence but Fred too has grown-up a lot lately and he came through this test in flying colours.

That was day twenty-three in the current cycle, a record equalling day for Fred. When Ed extended an invitation to lunch we thought it better not to push it and Fred stayed at home with his Mum. We still live in fear of something happening in public places; no matter how well life has being going for the man. He didn’t mind too much though and when I came back he was happily watching a movie. For the rest of the day all that was on my mind was would be make it to a record breaking day twenty four.

Wednesday dawned and Fred had made it. He got up as usual and had a good breakfast. Ruby had gone off to Cork with the Currans so when Lisa went to work at noon it was just the two of us. He wasn’t quite himself though he had lunch and I worked around him. During the afternoon he asked me to sit with him on the couch which I gladly did as I had one of those feelings. We watched a movie and some TV. About four o’clock he gave me his glasses and rolled over on his side, immediately falling into a deep sleep. Twenty minutes later and the seizure struck and so day twenty-four became our new milestone.

Lisa came home an hour later just as the second broke through and she wasn’t surprised. Neither of us had really spoken that we expected a seizure but we both knew it was on each other’s minds.  In the way only Lisa can she took over Fred’s care and got him through the rest of the evening. It was a bad cluster, spread out over the night but at 2am Lisa called a halt by giving him the Stesolid. We try not to give him the shot as it can stay in his system for days, making him lethargic and it reminds us of the boy he was just a couple of years ago. But after five or six seizures you give up hope of the VNS stopping the run and intervene.

Fred was wrecked the next day but asked for his breakfast about 2pm. As he hadn’t eaten since lunchtime the day before I made him plate of fried eggs and toast which he ate. His appetite was good and he was sitting up watching TV, all back to normal in under twenty-four hours which says a lot for our man.

That night going to bed Fred asked for a bedtime story. I found him a book and he sat up on his pillow waiting for me to get ready:

“Ooh,” he said.

“What?” I asked.

“Ooh, ooh,” he repeated and slipped into a seizure.

That last one, almost a goodbye from the epilepsy as it leaves after a cluster. Sometimes it hits in the morning, other times in the evening and now just as he was going to sleep. We made him comfortable and he slept through the night.

Friday was Halloween, a day Fred had been looking forward to for weeks. Ali and Hannah came in for a sleepover, adding to the excitement for Fred. Once it got dark Fred started to get ready and the two of us set-off trick or treating. At each house we went to I stood back and Fred rang the doorbell, sometimes twice if they didn’t answer fast enough. As we were the first out Fred did well, very well indeed. So much so that I had to carry some of the loot in a separate bag, much to Fred’s delight. Back home he showed Mummy how much he’d gotten and poured it all into a bowl to look at.  He showed it to the girls after they came home from the cinema, proudly offering them to take a sweet.

That evening I watched the original Halloween movie and Fred, sitting next to me, did as well. Though it’s a bit dated now it still has some scary bits. Going to bed Fred asked me:

“Dad?”

“Yes Fred,”

“So there isn’t a man with a knife and a mask in our house?

“No, of course not,” I laughed.

“Not on the stairs? Not in the bathroom? Not in the bedroom?”

A good scare makes a perfect Halloween.

Yesterday the two of us went to the cinema. For some reason we got out of the habit of going and the new Teenage Mutant Ninja Turtles was on, in 3D. We queued, bought our tickets and the 3D glasses. In our seats we put on the glasses and the movie began to roll. The 3D was new to us both but Fred loved it, taking off the glasses and putting them on again, seeing the difference. For about twenty minutes all was well but it got quite dark and noisy. Fred said he was scared, that there was too much jumping. Whether this was due to the surround sound and 3D or maybe a throwback to the Halloween movie I don’t know. We left but the manager kindly put us into an animated movie and all was forgotten. Fred ate some of his sweets from the night before, pulled up the armrest and cuddled up. A great way to help with his recovery.

This morning he slept in and came down for breakfast about 10.30am.

“I’m back to normal now,” he announced, clearly rested after the long sleep.

Another one for the books.

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Posted by John Verling

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