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

13Apr/140

A Life More Ordinary

Two full weeks in a row for Fred at school, in fact 3 weeks but the first one was only three days long due to holidays. No coming home early due to confusion, no late starts, no days off and the poor man didn’t even get to dodge Ms O’Se in the afternoon with one of his excuses.  We are seeing something of a transition in our boy, going from permanently zonked to an ordinary eleven year old. Of course there is more to do, more catching up and we have to be constantly on our guard still but Fred’s life is improving, bit by bit.

At school now Fred doesn’t want to stay inside at his desk, nor is he content with playing gentle games of throwing the ball. During the week I was on duty for break times and I watched as Fred and Denise went striding around the playground. Striding is the only word I could use. The two did laps of the school yard Fred with his head up, confident walk and going at speed. At one stage I saw Denise almost running and I immediately thought Fred had gone down. On looking I saw it was only Fred walking so fast that Denise had to pick up the pace. They’d stop to talk to other kids, play ball and even one morning Fred was jumping hurdles laid out on the yard. My heart was jumping hurdles too, a lot bigger ones than the foot high bars Fred was negotiating. Denise was probably worse than me and she got him away from them quickly enough.

Where all this confidence is coming from we’re not sure. The VNS must be helping, making him more aware of his surroundings, that fog his head has been is finally lifting. The school too have been making big efforts to move Fred on, get him out of his comfort zone. His teachers, “the women who care for me”, as Fred puts it, are very proactive and are always encouraging him. The other kids are great with Fred, everyone seems to know his name and he gets big hellos everywhere. The overall ethos though of the school is what matters; they all pull together as a team. Nothing is too big for them and a year on since his enrolment at Blennerville Fred has only blossomed under their care. Lisa and I don’t know how to fully express our gratitude but I can say with confidence that Blennerville National School has been the making of our Fred. Lisa did bake the most sumptuous cream buns for the staff on Friday as a small gesture but we really do owe them so much.

This week they went to the Aquadome for the usual swimming lessons. It didn’t even occur to me to be worried, it was just another bus trip for Fred. At Halloween I had followed the bus from the school to the museum, waited outside and followed it back again. On Wednesday I didn’t even leave the house, mind you he couldn’t have been closer but still the level of worry is way down. Lisa was at a cookery demonstration and I was at my desk, life couldn’t be more ordinary. Although, on Thursday Denise asked me if it was ok to take Fred on the egg-hunt the next morning. They were going to the playing field, about a five minute walk away and would be hunting for a half hour or so. I agreed but Lisa was worried, which got me worried. Fred is the important one though and so Friday morning I went down to keep guard while the hunt was on. 10am I was outside the school waiting for them to leave. By 10.15 they hadn’t come out and when the school came out for the mid-morning break at half ten, I rang Lisa. She didn’t know when they were going but thought it was at 10am too, so she texted Denise. The call came back, they’d been and gone. Fred was actually out doing the hunt when we thought he was at school. He found one of the eggs as well. Jayden found two though.

 

Not that it has been all plain sailing this week. Getting Fred out of bed is still a struggle some mornings and there have been plenty of “I don’t want to get up!” moments, perfectly natural for any boy. He still manages a fight with his mother most days about something or other. This week was worse than a lot of recent weeks and Lisa thinks it may be due to seizure build-up. It is a strange phenomenon but it does seem epilepsy builds up to breaking point and we were getting close to day 17. Day 17 seems to be the tipping point these days. Before recent improvements, the build up would include a lot of confusion, dizziness and headaches but those days seem to have given way to irritability. Fighting with his mother is standard but with me he usually doesn’t too much and he certainly doesn’t dare with Ruby.

However this week the old small things, like coming in when asked or being unhappy with dinner because it isn’t what he wanted, they all made a reappearance. On Tuesday he was upstairs in Lisa’s bedroom under the duvet watching a DVD, Fred does like his comforts. At about 7.30pm I went up to ask him to come down. Fred said he wanted to go outside to which I answered no as it was too late and he was in his pyjamas. Off he ran and when I got down the front door was open. Outside there was no sign of him but when I went around the corner he was standing in the classic male pose, legs spread and peeing in the neighbours flower beds. I had to swallow a laugh but still it wasn’t good. He looked up and saw me...”fuck” was all he said, quickly trying to put everything away, followed by “oh hi my Dad.”

He was strong armed in and sent to bed. Later when Lisa went to get him all he could say was “I hate being grounded.” That boy watches too many American movies. But tough love has been the order of the day for a while now. The zero tolerance policy of coming down hard on his immature behaviour has paid dividends. Lisa, I and Ruby are intent on pushing him on, making him use his brain and not allowing Fred to get away with being too childish any more. Not that we want him to be wearing a smoking jacket and espousing the sublime beauty of Yeats’ later works. Just no more getting into pyjamas as soon as he gets home from school, no outside in the evening in his pjs, no baby talk only proper conversation, doing what he’s asked, when he’s asked and so on. Small pieces of behaviour that should make him aware of his age. No doubt it is tough for Fred but he has really made an effort, this week’s irritability aside.

The little bits of bad behaviour became too much for me as the week went on.

On Thursday evening I asked for the remote control, to which Fred shook his head. This was after maybe two or three days of constant battles over the smallest things and I just gave up, walked away as I couldn’t bear to fight with my boy again. Ruby stepped in and handed me the remote. A few minutes later Fred came up to me. I explained that getting in fights over small things was just too much, not good and I’d had enough. Fred looked me straight in the eye, mano a mano, and I feared another row... But the little man just said, “Sorry, my Dad, I won’t do it again.” What could I do? Only open my arms and have the man cuddle in for the night.

That boy.

Yesterday morning, day 20 in the current round, a seizure hit at 5.29am. Not too unexpected but horrible all the same. Fred went through it and a couple more, well spaced apart and by 11am he was down sleeping on the couch. Lisa was swiping the VNS like there was no tomorrow and he did have a comfortable day. By about 5pm he’d had six in all but he was beginning to wake, a sign that maybe the worst is over. The amount of swiping could only have helped and by 8pm Fred was awake watching a DVD. Another cluster when we didn’t have to intervene with the Diazepam. The two of us went to bed about 10.30pm and though he had a few small, frontal lobe, two second long seizures he slept well. By about 2.30 am I gave up on the swiping as it seemed to wake him and the frontal lobes only kicked in when he was dropping off. One more little twitch later and he was in a deep sleep, so deep that he woke like a new boy this morning. He even got up before me and went down to his mother, just back from her run.

Yesterday was just one day in twenty. All the other days matter so much more. Though Jaden couldn’t come over he is doing so tomorrow. Lisa and I worked around the epilepsy, did our jobs and tried to have as normal a day as possible.

Whenever I looked at Fred yesterday I thought of our visit to the bank during the week, instead of thinking of the epilepsy. At the bank Fred had sat on one of the comfy seats, reading the book he’d gotten from the library. In the queue I looked over and saw my beautiful boy sitting up straight, book in hand and looking like any other eleven year old. When he caught me looking he smiled and waved.

“How did I do?” he asked afterwards.

“Excellent,” I answered.

We walked out hand in hand, carefree, back to the car.

That’s our Fred, the boy we love.

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Posted by John Verling

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