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

8Jun/140

Who Lives in Pineapple Under the Sea?

There is an episode of SpongeBob SquarePants where the writers hit a peak of creativity. SpongeBob and Patrick hide out in a box and use their imaginations to create all sorts of scenes. The much maligned neighbour, Squidward, doesn’t get imagination and doesn’t understand from where the boys are getting their fun. It’s a scene I’m reminded of whenever I watch Fred playing with his action figures such as Iron Man, Wolverine, Batman and many different Godzilla characters.

As a kid of eleven maybe he should be more into hanging around, getting ready for the teenage years of being sullen. There may be a grain of truth here as his years out of school have lead to him being behind what other kids are doing. I know Jaden has no time for them, preferring to be on his phone or tablet. But watching Fred build complex story lines from a couple of figures, battles that go on for ages and conversations of which a Hollywood scriptwriter would be proud, assures me he is on the right track.

During the week, when we were on our way to school, Fred found two old dinosaurs figures on the floor of the car. From the house to the school gate they battled, chatted and fought to the bitter end,  as much to my entertainment as Fred’s. Great imagination. The recent school fundraising initiative also confirmed Fred’s imagination.

They20140604_195101 had a clever idea of the children to do one piece of artwork, the subject to be of their own choice. The finished paintings were professionally framed and priced at €10.00 each. An exhibition of the entire school’s work was held on Tuesday night and I went down not knowing what to ex20140604_194930pect. It was beautiful.

The exhibition was laid out in a classroom, all 130 pieces of framed work, mixing age groups and classes on freestanding display units. There were lots of dogs, other animals, mountains, skies, cars and country scenes. Finally I found Fred’s, three musical instruments on a strong red background. A flute, a violin and a trumpet; they may not have been drawn as well as some other works but from what I could see it was the only one of its type.Needless to say it brought a tear to my eye.

Every parent went along with the fundraising bit and the work came home with the children the next day. When paying, I asked the curator what the take up was like... “Nearly 100%” he said proudly.

Fred came home Wednesday showing off his framed work, which now hangs proudly in the front room.

Not that the week hasn’t been without any lows. Fred was fighting most nights with his mother over going to bed. The long evenings have him confused as to what time it is, plus he’s finding the brightness difficult when trying to sleep. When I was a kid it was the same. Going to bed at 8.30pm when it was still light outside was a tough one. We lived in an old house so the shutters would be closed and the heavy, lined blackout curtains drawn. Still I’d be awake when the others would be going to bed and I remember asking my sister Ella if it was still bright outside, which it would be, much to my amazement.  Fred has inherited the inability to drift off easily from me, much to his mother’s annoyance. Behind this lies the worry of Fred not getting a good night’s rest as sleep deprivation is a key epilepsy trigger. This has been evident since going back to school on Wednesday.

Fred was off school Monday and Tuesday and the Friday before, part of giving the kids a break in the sun. Fred loved his time but got into bad habits of not sleeping, not that he needed much encouragement. On Tuesday morning he was having breakfast when his right hand shot into an involuntary jerk spilling orange juice across the table. “I got a fright,” he said, a look of fear on his face, not understanding the why. Lisa took him inside and much to our relief nothing else happened. Other little bits happened such as small, five second frontal lobe seizures as he was, eventually, going to sleep. Whether these are all connected we don’t know but Denise was on high alert at school, swiping him continuously. Maybe it’s a new progression in the VNS adjustment, maybe because his last clusters were so mild that his brain didn’t right itself, who knows. Funnily enough he didn’t get any confusion, the portent of seizure activity and had a great week in every other way.

Fred has been getting himself up in the morning, following me down after a few minutes and helping with the breakfast or emptying the dishwasher. His schoolwork has been praised and he’s still playing with the older girls. On Friday evening he and I went to collect Ruby after her Maths exam, the two of us laughing all the way to Dingle. All great fun and just what the doctor ordered, literally in Fred’s case.

Lisa was away Friday, supporting her wonderful sister, Clare, who was doing a fundraising ‘Let’s Dance’ in Kilkenny. Ruby, Fred and I had dinner and settled in the front room on a cold, wet evening. We had received an invitation from a new arrival on the estate, just drinks from 7pm to 9pm. At 7.30pm I went off, leaving Ruby in charge of Fred. As I walked across the green the though struck that here I was off on my own and Lisa was in Kilkenny, while the kids were home alone. A first. Not that I was more than five minutes away. I was planning to just have a glass and head back at 8pm. But I relaxed, got to know people from our estate and even had a glass followed by a bottle of beer. At 9pm I headed home, Fred looked up momentarily to say hello but outside of that I doubt if I was missed.

Just a great, normal week but one that would have been beyond our imagination not that long ago.

Now it’s not anymore.

SpongeBob would approve.

 

 

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Posted by John Verling

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