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

22Dec/130

Jayden and The Cream Buns

This is the first pre-Christmas Day weekend in three years that Fred hasn’t been in hospital. It’s a line that I’ve been hoping to write all year and it’s a sure sign of the one we’ve just had that I was confident it would be written. This time last year Fred and I were in CUH Cork waiting to hear if we’d be discharged or not; today we’re sitting on the couch, at home, under a warm blanket. What a difference in a year, gone is the constant jerking, gone are the thrice-weekly seizures and in their stead is the relaxed, happy boy wrapped around me, watching the TV, while the hail lashes the windows outside.

Part of the success of this year has been Fred’s return to school. When I was a boy, the week before Christmas was my favourite at school. My only favourite. It was all part of the build-up to the big day. Now that Fred is happily settled at Blennerville, he’s had that last week of school excitement, too. During the week they were doing art, singing carols and no doubt talking non-stop about who was getting what from Santa. On Wednesday the school arranged a Christmas themed day at the local museum. There was to be a treasure hunt, movies, games and plenty of fun. The idea of Fred going on such an outing twelve months ago would have filled Lisa and me with dread. In fact, we wouldn’t even have considered it.

So on Wednesday morning I dropped Fred at school and went back outside to wait. About 9.30am, a big 50-seater bus drove up and parked at the gate. After a few minutes the lines of kids, two by two snaked out from the school and onto the bus. Bringing up the rear were Fred and Jayden, walking hand in hand with Denise in close attendance. Out on the footpath Jayden looked over at me and waved, as if he was telling me all was ok, not to worry. Denise smiled over and waved too. Fred was busy concentrating on getting up the steps of the bus but Jayden must have said something cos Fred looked over, before disappearing inside.

Once they were all safely inside, the bus started up and headed off. As they passed, Jayden waved out the window and I could just see the excited face of Fred at his side. Off I followed and reached the museum just as they pulled in at the bus stop. The excited kids trooped off and again Fred and Jayden were last out, Denise a step behind. Jayden waved over again, like some secret sign during a cold war spy mission. It was lovely seeing Fred in among the kids, laughing and joining in with excitement. They crossed the road, up the steps and disappeared inside. I got my paper out and settled in.

About 11.15am the kids lined out and crossed over to the bus stop, Jayden giving me the wave again, how he knew I’d moved I don’t know. The bus arrived to cheers and on they all piled. Once they were all on the doors were closed, and off they set for school. As they passed, I got the wave again; all was ok, mission accomplished was the message. At the school gate I collected Fred; we’re still worried about too much excitement and it was a very tired Fred who got into the car. He was also sad about something…

“Did you have a good time?” I asked.

“But Dad I didn’t get one of the magic balls,” the sad eyes looking up at me.

Denise, giving me Fred’s bag, explained that in the treasure hunt they had to find one of nine sweet filled balls hidden in the building. Fred and Jayden had slipped up on that one obviously and Fred wasn’t happy. All was forgotten by the time we got home as Fred was too busy telling Mummy of his morning.

That afternoon Fred had Olivia over for his hour of resource teaching. Olivia is a lot tougher than Elaine was last year. Elaine was no match for Fred and he’d have the duvet down off his bed for her to cuddle up with him. With Olivia though, it’s at the kitchen table, books out and homework done. Both brilliant teachers with their own style but I think Fred preferred the reward of tickling for hard work done that he got from Elaine. He likes Olivia, or Ms O’Shea as he calls her, and greets her at the car door when she arrives each day. Whether he’ll get her under the duvet only time will tell....

About half an hour into the session and Fred started complaining of the confusion. Recently Lisa and I have been wondering if Fred has copped how the confusion can get him out of situations he doesn’t like. Olivia was concerned but happy to continue but Fred was adamant, though his eyes looked clear. We don’t take chances and we have to trust that Fred isn’t pulling a quick one, but he is boy too. So Fred went inside for a snooze and Ms O’Shea left. Within a few minutes Fred was up and looking out the window as if nothing had happened. He’d slipped up in the full execution of the plan or had he? We grilled him on if he really had the confusion and explained how important it was that we could trust him. Nothing was said, but then Fred called me back in…

“Ok, ok, you got me,” he said, head down, voice full of remorse.

“What?” I asked but he didn’t elaborate, just kept his head down while Lisa told him again the importance of telling the truth about his confusion.

If he had it or not we’ll never know but the last thing we want is for Fred not to tell us. Fred’s biggest problem is that he’s a terrible liar, not as bad as his mother but poor enough. With his mother she laughs when trying to lie, Fred just can’t deal with the guilty conscience, yet.

Thursday morning and the two of us are getting ready for school. Lisa was up early and there is a big container full of chocolate flapjacks and cream buns on the sideboard waiting for us. The flapjacks are for the kids, the buns for the staff-room. When we get to school, Fred insists on carrying the big container inside, delighted to be bringing the pre-Christmas treats. I tease Denise about not eating all the buns and she looks at me accusingly.

Oh, the fun.

At 11.00am, Lisa takes over and I head off to do the last of the Christmas shopping. When I get home at 1.30pm, Fred is unconscious on the couch. Just as the morning was finishing at school, Rose had noticed Fred wasn’t looking well. Lisa rushed in just as Fred went into a seizure. Rose had managed to get Freddie into the hall and into a chair just in time. It was a mild seizure and after a few minutes they were able to rouse Fred and walk him to the car. With Fred secured in the back, Lisa drove home, got him into his pyjamas and settled for the day.

It wasn’t the worst of clusters, in all he had three big ones during the afternoon, with a few small frontal lobes thrown in for good measure. When Fred roused himself in the early evening it was just as Ruby, Hannah and Sibeal came in from school. The girls were going Christmas shopping and having a sleepover. Fred managed a bite of dinner even, not much but something was eaten for a change. He stayed up for a while, watching DVDs and looking at the girls going about their business. Around 10pm, he fell asleep in my arms but about thirty minutes later, he had another big seizure. Lisa and I got him upstairs and when he had two more within the hour, Lisa intervened with the Diazepam. Fred slept the night through and I got the expected text around 5am that the boy was looking for his Daddy.

Overall, it wasn’t a bad cluster but Fred did miss the last day at school. Teacher Rose had called the evening before enquiring after him and hoping that they would see him the next morning, just to wish him a Happy Christmas. But, as always he slept the morning through, recovering from the day before.

Fred only got to day thirteen this time. The good side was that it was mild in comparison to previous days and he recovered quickly. Whether the VNS was responsible for the relative ease of Thursday is open to question, Lisa did swipe him with the magnet a few times so maybe. Thirteen days is less than other gaps but far better than the every few days of last December. Also, hopefully, that’s him till after Christmas. The last thing we want is the day he’s been looking forward to so much ruined by epilepsy.

During the week, Fred kept asking when Christmas is and when Santa will be coming. I tried getting him to count down the days but when it’s the biggest day of the year, it’s difficult to reason with any kid. One day Fred let out a big sigh…

“What’s wrong with you?” I asked.

“I’m getting bored waiting for that Santa,” was the reply, “he’s taking forever.”

Well he does have a big job to do but one thing I do now is that Fred won’t be bored come Wednesday morning.

 

 

 

 

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Posted by John Verling

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