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

8Dec/130

Buttered Eggs For Breakfast

The day we’d been expecting for a while eventually came to us on Friday. It’s not that we were wishing it but we knew it had to happen sooner or later...Fred had his first seizure at school. In a way it was good to have that hurdle behind us because there is a certain inevitability about epilepsy. Everyone coped well which had been the main worry for Lisa and me. It happened just as Fred was making his way to the car at lunchtime.

Denise, as always, was with him. As Fred had his bag on his back his fall was somewhat cushioned. Of course Lisa was there in about two seconds, Usain Bolt was still be in the blocks wondering what the streak of beauty was that had just left him for dust. Thankfully all the kids were back inside, leaving just the main players, Denise, Teacher Rose and the Headmaster Terry to witness what happens when a seizure strikes. Now that Fred has had the first one and everyone coped so well we can relax, a bit. In fact Terry rang later in the day to see how Fred was doing and he spoke of how happy they were that, in the circumstances, it all went so well. Denise the star of the show, coping like a trooper.

All week I’d been expecting something to happen. Friday was day 23 in the current cycle and so Fred equalled the current record. We tried swiping him with the magnet. It’s early days with the VNS, and he did have just the seven as opposed to the twelve he had during the last cluster. Whether it made any real difference we don’t know but it’s unlikely to have, at this early stage. On Friday we’re going  for the first cranking up of the stimulator, the first of many trips to try find a therapeutic level, so all this will be discussed no doubt. For now we just hope that he equals the record again and Fred will have a peaceful Christmas.

One definite improvement I’ve noticed is in Fred’s schoolwork. Again whether it’s related to the VNS or not we don’t know. However Fred’s reading has improved dramatically which could of course be down to the excellent schooling he’s been getting. Now that he’s also getting the resource hours, an extra one on one with a dedicated teacher, his abilities are beginning to shine. When we were doing reading homework together I noticed that he now sits up and reads almost without hesitation. No longer is Fred pointing to each word, hunched over the page, as he was just a few weeks ago. Plus he doesn’t fight me when it’s homework time, well not too much.

Fred’s resource hour sessions began the Monday after Lisa did a fundraising bag-pack in Tesco. Fred asked me where Mum had gone and I explained that she was raising money for his new school, planning permission having recently been granted.  As Fred started with Ms O’Shea in a different part of the school, a portakabin out the back, he told Ruby that he had a new school which Mummy had built.

That woman really is a superwoman.

The build up to Friday hadn’t been as dramatic as previous times. He didn’t have terrible jitters or too much confusion. On Monday though he had to come home just after the mid-morning break. Denise came out to tell me he wasn’t feeling too well and when I went to collect him Fred looked very sad. The two teachers were worried that maybe they were being too careful but also worried that he was ok. As I explained we want them to be too careful until we all have a bit of confidence in the VNS. As Fred and I walked back to the car he left out a big sigh...

“I had a bad day, Dad,” he said looking at me with those big brown eyes, the eyebrows furrowed in sadness and worry.

What a sweet way of looking at his morning and in retrospect it must have been bothering him all morning, as back home he slept till about four o’clock. He didn’t even wake for lunch.

On Tuesday we took him out at break time just in case. He had been a bit tired before going to school but we have to build confidence and not let our fears constrain our days. On Wednesday Fred had a full day without any repercussions, though he was too tired for homework when Mummy suggested it....

That night when I went up to bed Fred was lying out flat on his back, eyes closed, looking the picture of innocence. Just as I got into bed he spoke...

“Look at me Dad, my eyes are closed.”

And then...

“How am I doing at sleeping?”

He has a bit to learn yet about not letting the cat out of the bag.

Thursday was library day at school. Every two weeks the Mobile Library, run by the county council, calls to the school. For about a couple of hours all the kids pour out of the school and queue to go into the truck. It’s a lovely sight, the big white truck, full of books and kids lining up full of excitement waiting to make their choices. Fred loves it and usually goes out with Jayden, Denise as always by his side. One week Jayden forgot his library card and Freddie was very upset that he didn’t have a library friend. This time too Freddie was on his own, but I think Jayden was in a bad mood, as Fred explained to me later.

The truck had parked right in front of me, head on so I could see straight in to the mini library. Fred headed for one section but took his time pouring over all the books.  Denise was picking out other ones but Fred was determined to find a particular tome. It didn’t take them long and soon Fred and Denise were heading back across the yard, our man’s head stuck in his new book. At lunchtime he showed to me at home...Ben 10 and one he hadn’t had before, he must have known it was there or spotted another kid with it. The rest of the day he had his head in it, following the stories and identifying the aliens.

Now it is Sunday. Friday afternoon was a wipe out and yesterday was spent sleeping, recovering from the day before. Fred had breakfast this morning, his first meal since breakfast Friday morning. As Ruby had Ali and Hannah over it was an extra special breakfast with the girls. Yesterday I had been at the girls beck and call taking them skating in Cork City and taxiing them around the real capital to do their Christmas shopping. All I’d time for was quick sandwich and a browse around the English Market in the city centre. I actually like ferrying them around and love their excitement while on our drives.

On the way back Hannah and Ali fell asleep in the back, all that skating and shopping tires a girl out obviously.

The one purchase I made was the Cork speciality of buttered eggs, fresh eggs which are brushed with melted butter just after being laid. Fred and I had two boiled buttered eggs for breakfast this morning and they were only gorgeous boy.

Once the girls came down it was all chat about what they’d seen and bought yesterday.

Fred politely made his exit after a few minutes. Ben 10 held a lot more interest for him and he made a bed for himself on the couch, DVD on and a pile of discs beside him to be watched.

Now that’s a man with his priorities right.

Long may it last.

 

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Posted by John Verling

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