Last weekend was a three day piece of heaven. Three days with the family, two of which I described in last weeks post, followed by a Bank Holiday at home on Monday, doing nothing, pure bliss. Lisa and Ruby went off early to get their hair done leaving Freddie and me at home. We were doing man things, sitting round, reading, watching Godzilla, and thinking about doing things… At about eleven I was thinking a fresh baked scone would be perfect. So it was great to get the call from Lisa, “Mr O’Sullivan is open do you want anything?”
Mr O’Sullivan’s is a family run shop in the centre ofTralee, O’Sullivan’s Delicatessen and Off-Licence is the full title as over the door. We call it Mr O’Sullivan’s as he’s always there when I go in and because Lisa always calls older people by their full title. It’s the way she was brought up, as was I, and it’s now become a family joke. At least we presume the older man running the place is Mr O’Sullivan. It’s the sort of place that does everything consumable, bakery, deli for homemade salads, sausage rolls quiches, vol au vents etc, wine, milk, even the lotto and at the back a no nonsense café. You don’t get many family run businesses on the main street of Irish towns anymore, high rents and the chains have chased them off. So it’s a pleasure to go in knowing that what you’re getting is good and maybe have a quick few words with Mr O’Sullivan. In the evenings he sends the staff home at 6 O’clock and stays open on his own till 6.30 “for people late on their way home” as he once told me. The same stock, no late night Fridays or Sunday opening, just 9-6.30, six days a week, 52 weeks of the year and it’s always busy.
As I wanted to go in, just to see if it would be any different on a public holiday and to check the second-hand bookshops in town, Lisa came home. An hour or so later in I went, no second-hand bookshops open but Mr O’Sullivan didn’t leave me down. Exact same stock, lots of it and I got a big bag of fresh scones. Within half an hour we were all sitting round the front room devouring the same scones with lashings of butter, jam and fresh coffee. Freddie loved his and scones have now become his new thing. As he’s coming off the Modified Atkin’s Diet, something we tried as it can help with epilepsy, these were his first in almost two years.
About five Lisa and Freddie went in to the kitchen to do some painting. Ruby was upstairs doing her stuff and I lay out on the couch, not doing anything just lying there. Half an hour later I heard that sound I hate, those painful wails of Freddie like he can’t breathe, the sounds that mean he’s in a seizure. Will the poor fellow ever get a break? Lisa was holding his head in her arms when I rushed in, his contorted body prone on the floor in full seizure. Thankfully it was all over in a couple of minutes and we carried him into the front room. Lisa laid him out on the couch. The whole day ruined in a matter of minutes, good old epilepsy. In the hope we could keep him out of hospital we gave him a shot of Diazepam and crossed our fingers. After a few minutes he woke up smiling, feelings of elation are a side effect of frontal lobe epilepsy but it always reminds us too of how sweet a kid he his. He staggered over to me and cuddled up, half awake half asleep. With him dozing in my arms I was hoping for the best but my stomach was in knots and I couldn’t relax. Almost exactly an hour after the first one he had a second, maybe the diazepam wasn’t going to hold the cluster back this time. Freddie fell back asleep and I went to make Ruby some dinner. One of the side-effects of all this is I can’t eat when he’s in seizure activity but at least cooking for Ruby would be a distraction, take my mind off the clock watching.
At seven-fifteen they started. Bang, bang, bang, one after another. After the second Lisa packed the bags and rang the hospital. He had the third as we got into the car at 7.35 and a fourth as we got out of the car outside the A&E five minutes later. The memory of the two of us holding Freddie in our arms, not being able to move as he was seizure, standing looking at each other will last with me for a long time. Another one for the Freddie memory bank, the bad bank and the one we’ll close down when all this is behind us. For some reason I was able to carry him in, normally I’m as weak as a kitten by now, to be met by doctors, nurses and other A&E patients looking shocked. Lisa took over and I went back to park the car. By the time I got back he’d had another and the doctor was putting in the line so he could have the IV drug Lorazepam, the stronger relation in the AED family. Soon he was in a deep sleep and there was nothing for us to do but wait. Hopefully this one would hold him.
We’d left in such a hurry I’d forgotten the bags so went back home to get them and nearly fell over them they were so close to door. How had I missed them earlier? When I returned they were getting ready to bring him up to the ward, he was someway stable by then. Up there Nurse Susan took over and the calm reassurance of the ward staff always breaks the tension. She made him comfortable, took his vitals and went off to make us a cup of tea. It’s been said here before but we really would be lost without the care and service of the nursing staff atTraleeGeneralHospital. The little man was so knocked out that Lisa couldn’t get the rest of his daily medicines into him and after my cup of tea I went home to look after Ruby. The poor child was coming down with a cold so needed care too. It’s always hard to leave the two behind and I can’t leave till I’ve kissed Freddie about a hundred times!
Back home my poor daughter was miserable and asked if she could share my room. The privilege is all my mine as I love having her on the other bed even though all I could hear all night was her sniffles. The next morning I was up about 6.30am and made some fresh coffee to bring over. After one look at Ruby I could see she wasn’t fit for school and told her to stay in bed. With the flasks ready and toast buttered I went over to the hospital. It’s always the same on such mornings, I don’t know what I’m going to find. If I call and there’s no answer my mind races to all sorts of conclusions, so I don’t, also I don’t want to disturb them. Those stairs up to the Cashel ward are well worn by me and I know every one of them intimately, every cracked tile, every streak, every creak. When I open the door its always quiet and peaceful probably not a reflection of the night the staff have just put down. Last Tuesday was no different and as I approached the nurses station Nurse Susan looked up; “He slept all night” she said those magic words I longed to hear.
Freddie and Lisa stayed in till Wednesday morning. Our life was disrupted but we work around it all, it’s the norm these days. My work doesn’t matter to me when he’s in so I slipped off early Tuesday afternoon to spend a few hours with him and to leave Lisa go home for a break. Unfortunately the Lorazepam makes him dopey and grumpy. On top of that this time he developed the cold too. The same one his mother and sister had. Maybe that was why the cluster was so bad this time, why the AEDs didn’t hold things. Illness causes all sorts of problems for people with epilepsy particularly with the effectiveness of their medicines. For that reason Fred gets the flu jab every winter but this time that nasty fecking cold slipped in to try give him a kicking. Despite all this he was a happy little man and we spent the next few hours laid out on his bed Fred watching movies, me reading my magazine.
Now it’s Sunday afternoon, the sun is splitting the stones and the family are all doing their own thing. As always with us we’re waiting for the next time but determined to live a bit too. Freddie has gone quiet; I think he’s slipped off to the kitchen looking for more of the scones his mother baked earlier.
Scones, the new addiction.
For the last seven days our life has been uneventful and there’s nothing wrong with that either. For the first time in a couple of weeks Fred’s gone seizure free for 8 days and it could be tempting fate to mention that here. Having said that there are a myriad of circumstances which I try to avoid because of their association with Freddie ending up in hospital. For a couple of weeks there when I came home early Freddie went over and now I try not to rush home in the evenings. Once I had a particularly spicy stir-fry and a while later down he went, no more stir-fry for a long time after that. Before that bad night in August he was out playing with the garden hose, even the sight of a garden hose now puts shivers down my spine. There have been so many occasions, so many associations that I could become very OCD about them all. However it’s something I have to deal with, coincidence is a very natural thing after all and we can’t be restricting our life anymore than it is already. For the last while I’ve been trying to reason everything that happens and not associate ordinary everyday occurrences with Freddie keeling over. Doing something doesn’t bring on seizures, misfiring synapses in the brain do that all on their ownio.
Saying you’re dealing with something and actually dealing with it are two different things. Yesterday morning we drove out to Dingle to watch the St Patrick’s Day parade and to collect our darling Ms Ruby. The same Ms Ruby had been at a disco Friday night and had slept over at a friend’s house. All the way out to Dingle I was tense, something I’d put down to the crap coffee we bought on the way. Throughout the parade I couldn’t wait to get home, worried that the little man would keel over and we’d have to rush back to Tralee. Again. Afterwards we picked up Ruby and headed for home over the Conor Pass. The tension at this stage was bursting out of my pores and I was snapping at everyone in the car. Ruby passed comment on my mood and this made me realise how wound up I actually was. By the time we hit Ballyseede I was someway better, calming down and seeing things a bit clearer. In the kitchen with Lisa it clicked with me…the last time I’d done a journey in the car with Freddie had been in February, to Cork and back to see his neurologist….and he’d had a seizure on the way home. No wonder I was so tense, I was associating travel with seizures and had worried myself into a tizzy. Now how am I going to deal with this one? In time I probably will by realizing what happened was a coincidence but time it will take.
During the week Freddie asked me to get some headphones from my shop. Don’t know why he suddenly wanted a set but I brought them home Friday evening. He put them on and all night he was wearing them. They are the ones with a microphone so he looked like a pilot sitting in front of the TV watching his programs. When watching his DVD player he had them on so as to listen to the movie, eating his snack he wore them and when it came to sleeping time he kept them on. Lisa slipped them off when he drifted into deep sleep. They were laid out on the bedside table for him when he woke-up; just as well as it was the first thing he looked for. Yesterday he wore them in the car, all the way through the parade and back home again, letting Ruby have a try for a while. Now today he’s on his chair watching Godzilla and Ultraman clips on YouTube. You’d think the earphones would be ideal for the all round experience, but where are they? Thrown beside me on the couch, forgotten like yesterdays news while some of the most ferocious battles for the future of our planet are fought on the other side of the room. No doubt he’ll use them again but he’s such a funny little man with his figaries. He becomes obsessed with things, food, toys, people and nothing will be done unless it’s done in a certain manner. These obsessions can last months or days and I could fill pages with their stories. His mother can be driven mad with them, she is the one with him all day, but we all love him for them, its part of what Freddie is.
After I’d calmed down yesterday I remembered the time as a 10 year old when I was in the St Patrick’s Day parade in Cork City. For some reason or other it was decided that three Cub Scouts from Cobh would go on the back of a lorry with the Cork Scouts and all of us would be dressed as scouts from around the world. This was before the worldwide television coverage of parades so in all likelihood nobody would see us but the good people of Cork. Plus the only thing that would distinguish us was the different countries scarves and nobody except the poor young fella wearing it knew which county he was representing. If memory serves me I was Sweden. So we set off on an open top lorry, nothing to hang on to but the wooden floor and each other, bouncing around the streets of Cork in the lashing rain. It poured and poured all day just like all the St Patrick’s Days in the collective memory. We got soaked to the bone and afterwards brought back to a hall in Douglas for soup and sandwiches but didn't stay for long because someone eventually realised we were on the verge of hypothermia. In the wisdom of elders nobody had brought a change of clothes, only our jackets which we couldn’t wear on the float as they would have hidden the all important scarves.
Wouldn’t happen today boy.