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

12Aug/120

Alone again, naturally…

The Verling men are alone this week, again. Not that we’ve been abandoned by our women folk, no its just that Lisa and Ruby have gone shopping leaving the men at home to fend for themselves. Its tough going, Freddie has got the duvet from our bed and now the two of us are under it, me writing this, Freddie watching Wallace and Gromit in the Wrong Trousers. He loves the nonsensical humour and slapstick nature of these movies. If you give him the chance he’ll recite each one scene for scene. Ask him what he read this morning he’ll look blankly at you but ask him to repeat a whole movie watched weeks ago and it won’t be a problem. The man has his priorities…

 

Freddie has a remarkable memory when the medicines give him a chance and we can only hope that changes in his regime will only add to this. Last week the two of us were cuddled up as usual on the couch. Fred was watching a movie he hadn’t seen for a while called “Arthur and The Invincibles”. The old DVD he had was scratched so badly that he hadn’t been able to play it so I eventually downloaded a new version for his media player. When we came to one scene towards the middle, he paused the player…

 

“Just one second Dad” he said getting his netbook from the shelf.

 

After a couple of minutes searching on YouTube and with me helping with the spelling, he found what he wanted…

 

“Just a second” he repeated getting the netbook and the remote control ready.

 

“There, that’s it” he said, starting both machines at the same time but turning off the sound on the TV and turning up that on the DVD player to full blast.

 

The scene on the DVD was of Arthur fighting the bad guys with the help of his friends. The music Fred been looking for was from some band that accompanied a Godzilla movie snip. So, there he had it, the battle raging on the TV in tune to the music he’d remembered from a while back and thought suitable. Arthur defeated the bad guys with “Let the Bodies Hit the Floor” blasting from Freddie’s netbook. How he thought to do it I’ll never know. The pause in the movie at the correct scene was perfect as was the introduction of the music. When he gets his normal life back a career in movie soundtracks beckons I reckon, as Freddie’s mixing was just perfect. In true Freddie style, he repeated this a few times until I couldn’t listen anymore and we went on with the movie watching.

 

Freddie’s normal life is continuing as before, with his playing curtailed and fun restricted. It’s a testament to this wonderful boy that he doesn’t complain but yet he often starts sentences with “when I get better”…the plans he has for when all this is behind him. Trips to Aunty Claire, trips to the beach, having friends around its all there in the planning, waiting for epilepsy to give him a break.

 

The week gone by has been a bit unusual and tough on him. All week he’s been feeling sleepy and having minor frontal lobe seizures, lasting five seconds at the most. On Tuesday he was having leftover Chinese from Ruby’s birthday when one hit, sending the meal all over the floor. The poor man was so disappointed to see his treat going to waste. Lots of other jerks and tiny seizures followed during the next few days, nothing major breaking through. An improvement of sorts but the poor fellow was wrecked from it all and sleeping a lot during the day. This could be from him getting used to the new medicine, Vimpat, helping the Tegretol do its job. Alternatively, it could be just a change in how the epilepsy is affecting Freddie. Let’s hope it’s the first but he has a long way to go yet before he’s on full therapeutic dose and a proper judgement can be made.  Being constantly tired is whacking him, throwing his sleeping patterns completely out of sync and leaving the poor man not knowing if he’s coming or going. Thence why we are here under a duvet and Freddie is drifting off to sleep again.

 

By Wednesday he was wrecked from it all and I came back from work to a very disorientated young man. He couldn’t get his sentences out and was only fit for sleeping. He woke to watch a movie and to have his dinner but by about 8 o’clock he was tired again. Eventually about 9 o’clock, a full seizure broke through, the usual minute long one but it was almost a relief that it had happened. The cloud he’d been under wasn’t going away and the full seizure served to clear the air. After he recovered, he opened his eyes to tell us he’d had a terrible fright, the seizure had taken him by surprise. A few minutes of talking, clearly again, he curled up to his mother and slept the night away. About 4.30 am, another one broke through; the two of us in a deep sleep but it woke me immediately. Those ones he has in his sleep are like an electric shock going through his body they hit him so suddenly. He jumped up in pain but in a minute, it was all over. Lisa came down to give him the shot of diazepam and he drifted off to sleep again. Lisa stayed with him and I went off down stairs to try sleep as I had work the next morning. About 8 o’clock, the two came down, Freddie looking for a big breakfast as if nothing had happened. That’s the one good thing about the nighttime seizures; he doesn’t get the shock and upset of the daytime ones…

 

As I said, the one big one sort of cleared the ‘confusion’ in Freddie’s brain letting Fred get on with a normal life, as such as he has one. He still fell asleep about seven o’clock last night and didn’t wake till seven this morning, so the routine may be starting again. All this upset to his brain, medicine changes, sleep disruptions, small seizures are so terrible but maybe things will even themselves out over the next month or so. There is an appointment with his neurologist this week, should be fun as we’re no better off than we were the last time Fred was up inCork….

 

One of the nights during the week, after Fred had slept through the afternoon,  the two of us were sitting up in bed about midnight and he was beginning to drift off. He laid his head on the pillow while I rubbed his hair…I spoke softly to him...

 

“You’re going to grow up to be a wonderful man,” I said.

 

He turned to me…

 

“Just like you Daddy” he said softly.

 

Broke my heart, that one did.

 

 

 

 

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Posted by John Verling

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