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

23Jun/130

Piano Playing, Chicken Rolls and Paddling

Friday was Freddie’s bad day in this cycle. In a good way at looking at things, and you have to find positives, is that Fred was back on the fourteen-day cycle. Well almost, thirteen days to be exact since his last seizure but far better than the seven-day turnaround he had slipped into recently. Thirteen good days we’ll take and it’s always better than the two-day gap he was enduring before Christmas. Now Friday is behind us, Fred and I are doing our usual Sunday morning…he watching Godzilla, me dozing beside him in the comfort of his warmth. In typical Fred style of settling in for a hard day on the couch, he has a stack of chosen DVDs out of the carry-case, lined-up to be watched as the wind howls outside the windows. However, we’re going out for a drive later, all part of the new normal, so the sun better begin to shine. Last Sunday it was so miserable we didn’t venture beyond the front room; Freddie watched a rake of DVDs whilst Lisa and I watched the Deer Hunter. It all ended about 7pm with Lisa in tears and me in the kitchen shouting “mao!, mao!” while making the dinner.

 

At exactly 4am in Friday, Fred’s clean run finished. The smallest of frontal lobes broke through, probably no more than 5 seconds but still enough to wake me. Lisa came down and we gave him his daily medicines, in an effort to ease the day that was ahead of him. Funnily enough he was off school anyway on Friday so it now means he’s only missed the one day to epilepsy since he started in Blennerville. At about 8am we got up and Fred had a big breakfast, I was conscious of building up his strength for a day of seizure activity ahead. Before he came down he’d a couple more of the frontal lobes so he was a little confused but got the breakfast eaten.

 

Mid-morning and I went off on a few jobs, by the time I got back he’d had the first big seizure. It knocked him and he was sleeping soundly next to his mother. Almost on the hour, for the next four hours, he had a big one with a couple of small ones in between. This was the biggest day for a month or so but we’re so used to it by now that we tried to carry on as normal. As the day went on I was coming and going, trying to keep myself occupied while Lisa just sat there, caring for Fred, coaxing him through every seizure without leaving him once. As Ruby was away, I had nobody else to put my energies into, normally I cook her elaborate meals or spend my time ferrying her about when Fred is having a bad day, my way of coping.

 

As the seizures weren’t leaving him be, Lisa decided to give him a shot of Diazepam. This was about four o’clock, the first time for a while that we had to do so, but he’d had enough. The problem with the Diazepam is that it stays in his system for a couple of days, even today two days later, he’s still a bit doped. The good side of it is that, combined with his evening meds, it eased him through the rest of the day. From then on he had only the frontal lobes but, as always, the epilepsy left with a bang; a big seizure about 7pm which seemed to signal the end. A bit afterwards he tried to rouse himself but though his eyes were open, it was just the thousand yard stare of man who had been through one hell of a day. The fighter was ready to put it all behind him, he’d gone toe to toe with the epilepsy and our Gorgeous Man was on the road to recovery.

 

About 9pm the two went off to bed, the day down and hopefully, hopefully, hopefully another couple of clear weeks ahead of us.

 

This last clean break has been wonderful, as it always is, wonderful for us and more so of course wonderful for the little man. It’s funny that when we were with Cathy Madigan last week and Fred didn’t perform, we assumed that a bad session was on its way. No, in true Fred style he did another ten days clear before succumbing. Why the medicines can only keep the epilepsy at bay for a period of time is beyond me, but then as I’ve said before it’s a curious condition.

 

In the last week Fred has been going through the spare room upstairs. When we moved in here, over a year ago now, Lisa put a lot of stuff in the spare room, stuff that she couldn’t throw away but didn’t want cluttering up the house. Fred calls it the attic and every now and again he remembers something and goes rummaging to find it. When he finds it and a few more things besides, he drags it downstairs, much to his mother’s consternation. I can usually tell this is happening by the despairing “oh for fucks sake Freddie,” that wafts up to my office. For such a lady Lisa can swear like a trooper, but with style. At one stage, I was thinking of applying to the registrar’s office to have Fred’s birth cert amended to read as “Fucks Sake Freddie.” Anyway, this week Fred came down with the electric piano he got for his birthday a couple of years ago. He’s musical and though not trained, he can follow a tune on the piano. So he had it in the front room for the evening, much to Ruby’s annoyance as the noise from it interfered with her YouTube watching.

 

As is usual with his figaries, Fred wanted to take the piano up to bed with him. To keep Ruby happy we’d put it at the foot of the stairs to stop him playing it in the front room. As he passed he tried to take it with him, but Lisa put her foot down and after much argument, it was left behind. They went up the stairs and as I heard the bedroom door close, I began to count…by the time I’d reached 28 Lisa was back downstairs retrieving the piano, laughing at how a Verling man had broken her down again. She carried it up to the bedroom with a blast of “for fucks sake Freddie.”

 

There it was at the foot of the bed when I went up a couple of hours later.

 

On Monday evening Tara came in for an overnighter with Ruby. As usual it was great to see her and Fred was delighted with a woman to impress. As we sat around the table having dinner Fred got in trouble though, by trying too hard. He gets himself so excited he overdoes the acting and it embarrasses Ruby when it slides into childish stuff. As we’re also trying to encourage him to be his age, Lisa and I also come down hard on any baby talk or playacting. Of course we don’t want to stifle him in any way but with the meds and epilepsy, he can slide into being a six year old when he’s a brilliant ten year old. So the little man got in trouble and was sent inside when the meal was finished, so as to give Tara a break. I went and sat with him, he had a look of sadness on his face and said that he was sorry but I asked him why he had been too silly at the table…

 

“I don’t know,” he said, his little eyes looking at me and then breaking into tears, cuddling up to me.

 

When Fred cries he becomes a blubbering little boy and the tears really flow.

 

“Its ok little man,” was all I could say as he apologised to me for misbehaving, in the process soaking my t-shirt with the floods of tears.

 

Then he said, through the tears…

 

“Dad, I’m sorry I can’t stop the fainting,”

 

He blames himself for the epilepsy, as if he’s letting us down, oh I’m so proud of this wonderful man of ours.  When this is all behind him, I really hope he can see how he took on this condition with a dignity far beyond his years. Even yesterday, when in recovery his smiling face and good humour would have humbled anyone.

 

Also during the week we drove out to Fenit. The weather wasn’t great but a trip to the beach is always welcome. On the beach we walked around, collecting shells just happy to be out doing such simple things after years of living with fear. After a few minutes Fred walked off to the waters edge, me holding his hand as tightly as I could. Fred was heading for the sea. He slipped off his shoes and with his bare feet had a paddle up and down the sandy beach. In my mind this was his first time in the coldAtlanticin about four years.

 

I had to drag him out, he loved the feeling so much he didn’t want to leave. Elaine was coming over so we had to head home, much to his annoyance, but the promise of Elaine’s tickles compensated for the disappointment.

 

Now it’s lunchtime Sunday. Fred has put a week down that would faze most of us. He’s getting ready for soup and chicken rolls, a favourite of the moment.

 

Later we’re going to go paddling again and put Friday behind us.

 

Fred has plans to go diving…

 

 

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Posted by John Verling

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