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

2Sep/120

Beer, Crisps and Liquorice

The week gone by has been the sort of week I’ve longed for, for a long time, well over a year I suppose. No, my man didn’t make it through the week seizure free but he did put another seven day stretch together, the third in succession. In our current life it’s the small things that matter, the milestones of a normal life. It may be that we won’t see such a week again for a while, let’s hope I’m wrong but at least we saw some semblance of normality.

On Tuesday, my son, Thomas, came over from England for a few days. An eighteen year old young man now and facing into his final year at A-Levels, trying to organise dates weren’t as easy as previous years. Tom had work and family commitments this summer so he wasn’t as free as before. But, over he came and I collected him fromCorkAirportTuesday evening.

Freddie adores his ‘brother Thomas’, as he calls him. All week, nearly every sentence was preceded by ‘my brother Thomas.’….

“My brother Thomas is having the same dinner as me”

“My brother Thomas is in bed”

“My brother Thomas is watching Jaws with me”

So, the running commentary went. When Tom went to Dingle with me and returned in the evening it was to Thomas that Freddie ran, running past me as he went. Thomas will never be adored as much but he handled the fame well and did a great job as the big brother. It hasn’t hit Fred yet that Tom went home this morning but I know the tears will flow at some stage along with the words “I miss my brother Thomas.” He had asked Thomas to stay for “a hundred days” which is forever in Fred’s life.

Last year Tom was over for a week and in that time Fred spent a couple of nights in hospital, started night time seizures and had one nearly every night that Tom was around. This year they were able to cuddle every night and Fred even had a sip of Tom’s glass of beer a couple of nights. They spent days under blankets on the couch watching movies or building tower blocks for Godzilla to destroy. When Tom came down in the morning Freddie was there to greet him, when Fred went off to sleep in the evening Tom was there to wish him a good night. That is the sort of normality that Lisa and I crave. It’s still not the worry free time we would wish for but better than what was passing for normal a few months back.

Another thing that I was able to do this week without worrying myself senseless was stay late in Dingle. Well, late being beyond 8 o’clock in the evening. A great friend of ours was over on a last minute trip from Canterbury. The friend is a collective term for the Swain family. Mark and Lorna with their daughter, Scarlett, arrived on a last minute end of summer trip to Dingle. Always a great pleasure to see them and as my confidence in Fred was up, compared to last year when they were around, I was able to spend some time with them too.

Mark has just written and published a book on his cycle trip from Dun Chaoin to Tokyo, a trip done four years ago with his son Sam. Over a few pints on Tuesday evening Mark was persuaded by Colm Bambury of having a launch on Friday evening. As the two cyclists had stopped in at Curran’s Bar Main Street, for a pint as they left Dingle that day in 2008, it was thought to be the perfect place to launch his book. On Tuesday morning, Mark was sceptical that a launch could be arranged in such a short time…by that night when he called me at 8pm it had been done. Friday night 7pm in Curran’s Bar. The power of pints and more importantly the persuasive power of Colm Bambury had won through. The fact that Mark had to be reminded the next day of that 8pm phone call showed how much powerful, persuading had gone on.

So, the week went on. Ruby started back at school and now I have company again on my daily journey to and from Dingle. All week we came home to an awake Freddie, even if he did push past us to seek out his brother Thomas. This week will be different, now that Thomas has gone, I wonder will he be as happy to see Ruby and I return? During the week, Fred’s speech got quite bad at times. He’d start talking to you and then stop, as if he’d forgotten the words. Which he probably had or at least his brain had forgotten where it had put them. The words he did get out were usually juxtaposed or made no sense to what he was trying to say. It was very upsetting for us to witness and worrying too. Lisa put it down to the Vimpat, of which he is slowly going up to a therapeutic level, an increase in dose every two weeks. A call to his neurologist confirmed that the speech problems may well be down to the Vimpat. As its new on the market all its affects on individuals aren’t known.  She recommended going back down a half dose for a while, that maybe we went up too quickly for Freddie to acclimatise easily. This was a major disappointment as we’ve put a lot of store in Vimpat working, the three seven day breaks we’ve had may be down to it working. He’s still on a fairly low dose so we were hoping for a lot of help as the drug increase progressed. After the chat we were going to go back down on Thursday evening. A backward step…

Then, as always with Freddie, he confounds the experts. Thursday morning his speech improved, not 100% but enough during the day that Lisa decided on not reducing the evening dose. On Friday and now all weekend its back to normal. Still not great, but not as bad as it was earlier in the week. Maybe now we’ll reduce the rate of increase but hopefully be able to stay with Vimpat for a while yet. His speech has improved enough for him to just tell me, that for a picnic tonight he wants to have beer, crisps and liquorice.  In that order and in moderation….

On Friday evening Ruby stayed with me in town, instead of getting the 5pm bus home as planned. Thomas, Ruby, Mark and I had a lovely dinner in theGoat Street café and headed for Curran’s for 7pm. The fact I was relaxed about the evening and not rushing home or anxious to get home was a major improvement. In Curran’s a nice crowd had gathered and a nervous Mark carried it off with aplomb. Colm did an excellent job as MC and a great evening was had by all. The only downside was the fact creamy black pints were flowing and I couldn’t have any as I was driving but I enjoyed the evening. We left about 8.30 and came home to Freddie pushing past Ruby and me to see if Thomas was with us…All was ok. I’d stayed away from home and all was ok. A big change for me. My major upset was that Lisa wasn’t there, it would have been her sort of evening, drinking GnT’s with Siobh and Paula…those days will come around again…

On Saturday morning I came down to silence…that sound I don’t like. After getting up at 7am Fred had had a small seizure on the couch downstairs. That was followed by a big, minute long one, that knocked him out. Seven seizure free days are better than six in my book. At about 10am he woke up and asked for breakfast. A good sign. He ate breakfast. By then his brother Thomas had come down and Fred spent the morning cuddled up to him. In fact, Thomas didn’t even know something had happened till I told him so at lunchtime. The day went smoothly with no further episodes and Fred slept the afternoon away. The only downside was that he was in no humour to sleep at bedtime. We sat up in bed reading and he turned to sleep about 11pm. The next thing I knew he was waking me about midnight because I was snoring…and again about half an hour later…and again a few times later until he drifted off about 2am…leaving me awake and listening to the night.

That was the week that we just put down. Tom left today, I drove him to the airport and we’ll miss him. The Swains left too, tomorrow is Ruby’s first Monday back at school, it feels like the summer is finally behind us and the autumn has begun.

John Boy Walton used to write about peace falling on the little house on the mountain or something like that. Well Lisa has just brought in the beer, crisps and liquorice…

Peace has fallen on the little house in Ballyard.

 

 

 

 

 

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Posted by John Verling

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