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

29Apr/120

Hope against Hope

This morning Lisa was outside trying to get Muttley into the car, so as to take him for a run in the woods. Listening to her trying to coax him into the boot reminded me of The Admiral Bar. When I was a kid, we used to sneak into the Admiral Bar on Cobh’s West Beach, aged about 15 or 16 we’d look around us, make sure there weren’t any parents about, slip through the front door and down the back. Always after school, never at the weekends, we’d throw our bags in a corner and just hang out. We never took alcohol, the bar owner knew us all plus we didn’t have any money, the hardest drink taken would have been instant coffee. No, we’d just sit around playing video games, pool, watch TV and listen to the jukebox. The Admiral was where I first heard Clearance Clearwater Revival, put on by Donal Randall, something a bit different from what was then on the radio all day and I group I’d still listen to from time to time. The Admiral was also where the Navy hung out, usually the guys in the Navy who weren’t from Cobh and certainly not the officers. When a navy ship was in from sea or leaving in the morning the bar would be full of men with Dublin accents, the air heavy with cigarette smoke and swearing. So listening to Lisa swearing at Muttley just now brought all those memories flooding back. It always amuses me that my beautiful, stylish, striking wife can swear like a navy listing of the 1980s. A woman who knows exactly what goes with what, what goes where, just the right make-up to wear, who still has the manners to call older people mr or mrs, can string a list of expletives together that would have got her barred from The Admiral and left the men blushing. The perfect lady.

Eventually I had to lift the dog into the car,  they went off to the woods, leaving the kids and me to get on with doing nothing. Ruby was yet again watching make-up videos on YouTube and at the same time texting her friends, probably messaging other ones on Facebook too. The king himself was in his throne, flicking through channels whilst having battles between Ben 10 characters and Godzillas.  Our week just gone by has been a relative quiet one. Freddie went seizure free till Friday, a week, a whole seven days and a record in the current series of events. Events are how they refer to seizures in the neurology department at Cork University Hospital. An event to me was something I looked forward to like a disco, a football match or a couple of pints with Con Flood, not something that fills me with dread and drags the life out of me. It’s going to take a long time before all these associations can be erased from my consciousness, but it will be a happy day as it will be the one when epilepsy has been shown the door. Then it will be time for some proper events….

The longer Freddie goes between seizures the higher the dread we feel that something is about to happen. Occasionally too if he goes a few days more than the norm we hope that maybe the medicine or to be precise, one of the medicines, he’s on, are working. Usually you don’t let that feeling or belief linger, as you know epilepsy is only just around the corner waiting to take a running jump at your little boy. So it was on Friday, seven days since the last one and I wasn’t too surprised when Lisa rang to say he’d had a small one just as they were heading out in the car. Ruby and I were in Dingle still, it was about 4pm and she’d just arrived in from school. As soon as was possible I closed up and we headed for Tralee, staying just inside the speed limit, always trying to stay aware of what I was doing, carrying my precious cargo back home.  We drove back in quiet, Ruby listening to her music on her phone, me listening to Lyric, not really taking in what was on. As usual, the journey seemed to take forever but we probably got home in the usual time. We drove up to the house but it looked very quiet, no Freddie at the window looking out for his sister or Lisa in kitchen cooking his dinner. After parking, I rushed into the front room to be greeted by Freddie, jumping up to welcome us home with a big hello and a hug.

“I fainted Dad!” he said, his word for a seizure, better than event in my book.

The sight of him awake and full of life was just wonderful. Soon afterwards he was digging into a big dinner and we tried to get on with the evening as normally as possible, checking him every two minutes, waiting for something to happen. All four of us fell asleep in the front room and I took myself off to bed around midnight. As per previous times’ the little man threw my door open about 2am and cuddled up to me for the rest of the night. We slept the sleep of the just till about 6.15am when he had another seizure, not a long one and he came around almost immediately. Feelings of elation are a side effect of frontal lobe epilepsy and he had a big smile on his face as I took him to the bathroom. After the trip to the toilet, we slept on till Lisa woke us about an hour later. He went off with his mother and I fell back to sleep, until Lisa woke me at 9am. He’d had another small one but again it hadn’t fazed him and he was up waiting for breakfast. Maybe and its only a maybe, the Tegretol is having some effect; I just don’t know anymore, we’re too bamboozled by it all to think straight. Experience has told us to discount everything, every sign of hope, every feeling of progress, unfortunately.

The rest of the weekend, at least up to now, about 4.30pm, has gone well. Ruby had a football match over in a place called Listry and I’m just back from collecting her, discovering a few more Kerry back roads in the process. As soon as she was in the door, she was back out again, some important shopping to be done with her mother.  Freddie is sitting beside me doing his artwork and SpongeBob is on in the background. Any time we stay away from the hospital when Fred is in seizure activity is a good time as far as I’m concerned and it’s a plus we’ll take any day of the week. This little boy deserves so much more than weekends like this and the sooner he gets the surgery or seizure control from medication the better.

It really can’t come soon enough for us all…it really can’t.

 

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Posted by John Verling

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