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

2Mar/140

Fred’s Nightmare at the Museum

Last week Fred had a nightmare about the museum. When he woke up in the morning I was told all about it. The big dinosaur and the pterodactyl had chased Fred through the building, trying to catch him.  Fred described in detail the big teeth of the T-Rex and the wings of the pterodactyl has they tried to track him down for dinner. I asked Fred which museum all this had happened in and he answered...

“The big one in town, where I went with Jaden and Denise,” his eyes wide open and the fear still written across his face. In his dreams he’d created a mash-up between his favourite movie, “Night at the Museum”, and a favourite school trip of last year. Some imagination at work in our Fred’s head.

So this week ,when back from the mid-term break, we got a note home saying they were planning another trip, this time to see the exhibit on medieval life, it seemed very appropriate. Denise explained to me that they would be going over on the bus and spending about an hour digging for bones. Heaven for our Fred, a trip on the bus and an archaeological dig, he couldn’t be happier.

All the talk was of the bus.

“What day is it today?” he’d ask.

“Tuesday.”

“Four more days and we’ll go on the bus,” half a question and half a statement of fact but the excitement was building.

Before the excursion Fred had to get through the week at school. On Monday he was a very sleepy boy, not wanting to get out of bed and not waking fully till at the breakfast table.  Even when getting ready for school he was rubbing his eyes and complaining of being tired...

“I’m too tired for school, my Dad,” he said, struggling to button his shirt, yawning and trying to snuggle into me for a snooze.

We eventually got out the door and Fred was happy to see Denise and Jaden at the classroom door.  As it was getting into the red zone with seizure free days I was a little concerned but Denise and Rose are well capable of reading the warning signs. I said it to Denise that he might be a bit tired and she said...

“We’re all tired this morning Freddie, I could barely get out of the bed myself.”

There was something reassuring about the way she said it that made me knew Fred was in good hands, that he was being well looked after.

He came home lunchtime full of talk about the museum and the tone was set for the week.

Swiping his VNS with the magnet started again this week as well. The effect of the double jump had been too much and under advice we left it alone for two weeks. We were worried that the renewed swiping might knock him but he didn’t seem to mind the extra jolt. The only side effect was the strained Marlon Brando for a few minutes afterwards but nothing else.  Every twenty minutes or so either Lisa or I will find the VNS under his skin and swipe the magnet over it in an X shape. The little black magnet has become part of the furniture now, wherever Fred is you’ll see it somewhere nearby. Even when he’s asleep he gets a swipe, no escaping the swiping in this house.

On Tuesday Fred came home saying he wanted to quit school, he’d had enough of Denise and her rules. Apparently he’d wanted to go home and Denise had told him he had to stay. They’d been playing ball in the yard and Fred got a ball in the stomach. Now I’ve seen these balls, they are soft and with some air left out, so they can’t hurt anyone or break a window. The effect of one in the stomach can’t have been bad but Mr Dramatic saw it as an excuse to slip off home. Thankfully Denise is up to his ways and put her foot down...

“But Dad,” he said to me, palms out flat, imploring me, “I’m sick of that school and those rules.”

“Well if you don’t go to school you won’t see Jaden or get to go to the museum on Friday.”

“Oh, all right but I’m sick of their rules,” was the resigned reply.

Not a man for rules is our Fred.

Each day this week he’s had Ms O’Se over for the afternoon session so there hasn’t been any escape from the homework. On Wednesday Fred pulled the headache card but Lisa and Ms O’Se were having none of it. Fred took a couple of painkillers and Ms O’Se got stuck into the homework. As I left the kitchen I saw Fred settling down to the work, Ms O’Se wasting no time. Fred knows when the game is up and taking on the might of his mother and Ms O’Se just wasn’t a battle worth fighting.

Friday morning was the day of the big trip. Fred was excited about the bus and said he was going to sit with Jaden. In the playground Denise met us and Fred gave her a big smile...

“Good morning Denise,” he said very politely, “When are we going on the bus?”

She laughed, “Oh Freddie, not until twelve o’clock. We have school work first.”

No escaping the schoolwork for our man.

At midday Lisa drove down to the school and watched them all file onto the bus, Fred walking out with Jaden. She followed the blue bus across town and took up watch outside the museum door. Fred filed off and walked up the steps of the museum with Denise on guard beside him. In they went and Lisa settled in for the duration.

Then her phone rang.

Fred had made it in the doors but collapsed on the hard marble floors. Lisa was in like a shot and Fred was just coming through the seizure. Rose and Denise were with him. He’d crashed off Denise and slid down, giving his head an awful wallop. The lump on the side of his head when he got back home was the size of a tennis ball. The three managed to get him up and with the help of the museum attendant got Fred into the back of the car.

Fred had made it to the museum, the aim of his week but not beyond the lobby doors. That afternoon when Ruby came home he told her he’d been on the bus and gone to the museum but he’d fainted inside.

It was day twenty seizure free, a slight improvement on the last break and illness aside, he’d had a clear run of it. The day itself went fine, under the circumstances. Lisa took charge and she nursed our boy through the worst of the cluster. In all Fred had seven seizures, Lisa had given him a shot of diazepam after the sixth and as always,  epilepsy had one last shot before he went to sleep. Just before he got into bed it threw Fred to the floor, Lisa as always there to catch him. That besides, he had a very peaceful night and stuck to me like a limpet, even getting in a few dreams, judging by the running legs.

In the morning when he woke up Fred looked up at me through his battle weary eyes...

“Dad?”

“Yes, my man.”

“I’m sorry I fainted at the museum, I couldn’t help it.”

Just now I heard him coming up the stairs. I’d left Fred and his Mum in peace downstairs an hour ago. There was a knock on the door and Fred came in, looking sorrowful through his sellotaped glasses. They too had gotten a bashing off the museum floor.

“Me and Mum were fighting.”

All is back to normal in the house.

The cycle begins again.

 

 

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Posted by John Verling

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