Hopefully and that’s a qualified hope, this is our last Sunday in Crystal Fountain. If all is to be believed Mrs Immovable is moving out this weekend; leaving the house in Ballyard free for us. However whether we’re in Ballyseede, Crystal Fountain or KGH things don’t change that much…Lisa is under her blanket with her kindle, Freddie cuddled up next to her and Ruby is lying out on the couch watching TV. No point in saying which program she’s watching as she flicks through the channels like…me! The apple doesn’t fall from too far from the tree there, though luckily for her she’s got the height, looks, legs and personality of her mother, all the good bits, as I’m constantly reminded. As Ed Galvin said to her this week, “it must be a crime to be such a clone of your mother!” The downside of all this of course is the constant “disagreements” over clothes, make-up, shampoo, styles and everything else in the universe. Luckily, Lisa is that bit too old for teenage boys or we’d have fighting there too! If I ever get the chance of a breakaway again it won’t be to the home of football in northLondonbut maybe the Gaza Strip, to put my peacemaking skills to good use.
It’s been, what is for us, a normal week. Since Freddie started the process of coming off some of the drugs, he’s gone through phases of total dopiness. It’s really hard for us to witness. He’s constantly sluggish, it takes about three tries to get the simplest instruction through, afternoon naps are the norm, limbs jerking and his coordination is totally off. These side-effects are there all the time and if left alone he’ll sit there watching TV in a daze, lower jaw hanging open, arms and fingers jerking uncontrollably . Lisa is forever calling him back, waking him from his daze not letting the drugs win and making him use his brain. All day she’s at it, whilst also trying to run a home all on her own, no wonder she’s so tired by the time Ruby and I are home. Through all this, Fred is still full of fun and trying his best too not to succumb to the withdrawal. Heartbreaking stuff, it really is. He’s finally off the Topomax and now the Frisium withdrawal has begun, to help with this the Tegretol has been increased, more messing with the brain. Heartbreaking.
When I came home Tuesday evening the poor man was particularly bad. Sleepy, working on only quarter-battery, jerking and just a wreck of a little boy. Now that he’s reducing the other meds it may be that the Tegretol is finally getting to work, adding to the confusion in his brain, as he’d put it. All I wanted to do was cuddle him and the two of us sat watching TV, it was pointless trying to have a conversation. About 7pm he went to the bathroom and I went along to keep an eye on him. These days he wants to do things on his own, indeed we’re encouraging him as much as possible but we can’t leave our Freddie on his own for too long anywhere. In the bathroom, he tried talking but couldn’t get the words out and went over into my arms. A longish 90 seconds of a seizure but they’re all horrible, no matter what length. Luckily, one of us was with him or he would have given his head an awful whack on the tiles. Lisa and I got him onto his bed, gave him some diazepam and kissed him repeatedly all over his little head. The most kissed man in the world, hopefully something that will continue into his teenage years! He dozed for about forty minutes or so, cuddled up to his mum, with me in and out all the time.
About ten-to-eight he raised his head when I came in and said “Hi Dad”. Instantly he seemed better. His eyes weren’t glazed over and though just awake, seemed alert, out of the fog.
“Do you want some dinner?” I asked.
He didn’t have to be asked twice and got out of the bed in double quick time. The legs still weren’t too good beneath him but he made it to the couch. Within an hour of going over he was sitting up eating a plate chicken and rice as if nothing had happened. The fog had lifted, why I don’t know but the seizure seemed to have reset the brain. After a second helping of dinner, he settled into watching his DVD player and we settled into an evening of Freddie watching. About 9.30 he fell off to sleep in his mothers arms but had three more little five-second seizures in the following forty minutes. The falling asleep seizures were preventing him from going into a deep sleep. We all experience the myclonic jerks from time to time when falling asleep, it’s as if you’re falling off a cliff, but when you suffer from epilepsy, they can develop in seizures instead of second stage sleep. Lisa gave him a half dose of diazepam to try rest the brain and get him stage on to stage two and it worked. Freddie slept the night through only waking at about 4am to come into me and keep me company while the sun rose. The two of us dozed in the early morning light and for a couple of hours all was ok in the world.
The rest of our week went as per usual. Ruby finished her exams; her first year in secondary school is over. This bad period in Freddie’s epilepsy began when she began school back in late August. Lisa and Freddie were down in CUH wondering what the feck was going on and I had the pleasure of driving her to school on her first day. The wonderful child Lisa and I had created was taking he first steps in the teenage world and Lisa wasn’t there to see her off. As she got out of the car, I tried taking a photo only to be told, “Fuck off Dad!” As a result, the only shot I had to show Lisa was a blurred one of Ruby is back as she left the car. That’s my girl.
Apparently, some unelected leader is celebrating 60 years of privilege this weekend but Lisa and I are marking an anniversary too. This week we’ll be marking 17 years together, not with any pomp but 17 wonderful years of laughing, adventure and happiness. We’ve had a few rows along the way, who hasn’t, but I wouldn’t swap one minute of one day for anything else. Sorry January if you’re reading but that’s the way it is!
A couple of months ago I entered a writing competition with the theme of hope, the piece I wrote is here at http://johnverling.blogspot.ie/ Have a read when you have a minute...It's about the hope a little fellow from Cobh had when trying to land a beauty from West Waterford who came to Dingle for the summer of ’95.
The audacity of hope.