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

16Jun/130

Neither Here Nor There

After last Saturday we tried to get on with the weekend as normally as possible. Though Fred had got a bit of a kicking from the epilepsy on Saturday by Sunday it all seemed behind him. A curious side of this epilepsy, and there are many sides to this condition, is that if Fred doesn’t get a good going over on the day of attack he only seems to get a week before another big day of seizures. Its if, as Lisa says, his brain doesn’t clear itself, as if it hasn’t reset fully and needs to come back for another go to right itself. So while it’s wonderful that his attacks aren’t as vicious as some recent ones, the payoff is that he doesn’t get as long as break as he was getting between episodes.

 

On Monday he didn’t seem himself as he went off to school. On the drive over I asked him a few times if he was okay and he answered each time that he was fine…

 

“Yes, I’m fine Dad,” he’d answer in his annoyed voice, wondering if I’d ever stop asking, no doubt.

 

At school, Denise collected him from the car and he went in chatting to her, forgetting to say goodbye to me until reminded by Denise. At about 10am Lisa took over and I went home. Lisa was worried about him too and suggested that we take him out before break-time but then we don’t want our fear of epilepsy take control of him anymore and so Fred stayed the full two hours at school.

 

When he came home at 11am, he looked a bit dopey and Lisa said that Denise thought he was a bit off in his work. A bit slower than usual in his thoughts and play. Of course, this worried us and we put it down to not having had the full reset at the weekend. Curious stuff this epilepsy.

 

Fred did manage a screaming match with his sister though. On Monday afternoon I heard screaming and swearing coming from downstairs. I was not getting involved if I could at all help it. Ruby was screaming at Freddie to leave her alone and Fred was goading her in return. If he knows Ruby isn’t in the mood Fred will go on the attack, try to get a reaction and get Ruby in trouble in the process. If Ruby is in the right mood he’ll succeed in getting the reaction but he’s a far braver man than me. When my darling daughter isn’t in the mood I steer well clear, only offering her food and drink when it’s safe to do so. Eventually Lisa intervened with the help of a UN peace force and I kept myself upstairs.

 

All was quiet in time for Elaine’s visit later in the afternoon. Fred wasn’t expecting her and much and all as he loves her he was none to happy to see her coming in the door. After a couple of minutes, Elaine came out to say Fred wasn’t feeling too well. Freddie was following behind saying he had the confusion and couldn’t do the work with Elaine. Lisa suggested that they take it easy on the couch and just do some reading. To this Fred agreed and the two got some work done, in between tickles and joking.

 

When I got home Lisa told me about the confusion episode and how she had her doubts…

 

In the front room I asked Fred how he was…

 

“Oh, fine,” the usual answer.

 

“Did you have the confusion?” I asked.

 

“Just a little bit,” he scrunched up his face and showed a gap between his thumb and forefinger, a tiny gap, “maybe this much.”

 

“Did you really?” I tried again.

 

The gap became even smaller.

 

Lisa and I agreed that the little fecker had feigned a confusion episode in order to try dodge homework, even though he probably wasn’t up to it anyway.

 

You couldn’t be up to him.

 

On Tuesday we set off for Dublin. All four of us travelling for the first time in a while. The journey was a peaceful one, Ruby slept for a while as did the mother and Freddie in the back.

 

In Inchicore Cathy was left on her own to look after us. We quickly settled in.  Freddie, though he missed Conor, found his usual spot on the couch and cuddled up to watch TV. As a special treat we got a Chinese takeaway. Fred ordered ‘vegetable noodles and white crisps’ his favourite. Soon all five of us were sitting around the dinner table, sharing our dishes and drinking our wine. Fred made short work of his chow mein and was munching down his prawn crackers to beat the band; it really was a feast for the little man. He shared some of Ruby’s prawn balls and was soon stuffed. He waddled back to his place on the couch where we  joined him, all of us with that bloated feeling you get from a good Chinese meal. At about 11pm, later than usual for the man, the two of us went off to bed, Cathy tucking Fred in with a big kiss goodnight.

 

In the morning, we set off forTemple Street and another session with Cathy Madigan. On the way over Fred was looking forward to his lunch in the basement restaurant. At the moment he is on a diet, trying to cut down on his carb intake, so a trip to Dublin gives him a small chance for a break. At the restaurant he was planning on the lunch he was going to have, the soup and sandwich which he’d had last time, with maybe a small portion of chips.

 

Fred gets to be a bit tunnel vision about things; he can obsess about a thought for days on end. It is a side effect of the condition but I think it’s his way too. Maybe I thought, that was why he was off for the last couple of days, his thoughts where being taken up by the Dublin trip. Who knows?

 

We dropped Lisa and Ruby on the way over. They had money to spend and were going to hit Jervis Street while we were at the hospital. It was nice for Freddie and me to do something on our own away from home, good for us even. We parked up the car in the impossibly tight car park run by the two Polish guys and walked over to the hospital. Up we went in the lift, Fred chatting away about the restaurant and what we were going to have for lunch.

 

After he was in with Cathy for less than an hour, she came out to me in the waiting room. Freddie wasn’t performing too well, he seemed very slow to Cathy, as if his brain just wasn’t functioning fully. It fitted in with his last few days at school which I told Cathy about. She thought there maybe something in his brain not fully resetting itself after a small seizure episode. Also I told her about the tunnel vision Freddie has about things, how Dublin had been on his mind all week and all morning he was talking of the lunch he wanted. Cathy laughed at this, the one thing Fred had done for her was sketch his lunch.

 

Single-minded is our man at times.

 

We agreed to give him an hour of a break and that she’d give it another go in the afternoon.

 

Freddie and I headed down in the lift and took our place in the queue. From the sandwich selection he found the plain ham sandwich he wanted and put in on the tray. Then we got the bowl of soup, leek and potato, and went to pay. Thankfully there weren’t any chips on the menu that way. Fred was looking at the dish of new potatoes…

 

“Can I have some potatoes?” he asked.

 

“Too late,” I answered,  “I’ve already paid.” Thankful that we’d avoided a row over extra carbs.

 

Then the lady behind the counter filled up a big bowl of new potatoes and put it on our tray.

 

“For the little fellow,” she said in a warm Dublin accent.

 

I asked how much extra was owed.

 

“Ah its all right,” she continued, “they’re for the little fellow.”

 

The two of us went off and had our lunch. I ended up eating more spuds than I’d planned, they were delicious and Fred was working his way through the bowl. Afterwards the two of us went up and out on the street for a walk. A few months ago I wouldn’t have been brave enough to do this, but slowly I’m getting my courage back. Outside it was a busy street but the two of us walked around hand in hand, looking atDublingo by.

 

Back inside Cathy wasn’t getting but more out of Fred but at least she got to see him on a bad day, its not always good. She took it on board but now she needs another meeting, this one was supposed to be the last, if that what it takes then that’s what it takes. Plus it gives us another trip toDublin.

 

On the way home Fred fell asleep in the car, we weren’t even out of Dublin and he was sawing logs. He stayed asleep till we got to Adare, a good three hours. Obviously he needed it, maybe that was why he was underperforming, tiredness.

Who knows?

 

He has been much more alert for the rest of the week, doing well at school and impressing Elaine.

 

Epilepsy is a curious condition.

 

On Friday Fred came home with a Father’s day card that he’d made at school. A beautiful card with lovely words and he couldn’t wait to give it to me. He was really proud of it but I was the proud one, proud of what my man can achieve despite what life throws at him.

 

This morning Fred put a cheese grater on his him, pretending to be a Transformer. When Lisa went to give him his shower his arm had swelled up and they couldn’t get the grater off. Eventually they slid it off his arm but he got some bad scratches.

 

Now he has a big plaster on the cuts.

 

Only normal for a boy to have cuts and bruises.

 

Thankfully this time Fred got them for normal reasons.

 

Long may that be.

 

 

 

 

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Posted by John Verling

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