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

25Mar/120

Addicted to Scones

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.

 

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18Mar/120

Coincidences

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.

 

 

 

 

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11Mar/120

Bogie thinks he’s tough?

It’s funny how Lisa and Freddie argue, very like an old a married couple sometimes. Just now Lisa was going upstairs and Freddie wanted to follow, he needed the charger for his netbook which Ruby had taken to bed last night. They argued over who’d go up to Ruby’s room each of them offering to go and in the end both did, squabbling all the way up. Ruby wasn’t for handing over the charger; the teenage glum mood overturned the young man’s enthusiasm….a valuable lesson learned there by Fred.  Mother and son came back united in rejection, no longer fighting. Petty squabbles quickly forgotten are a hallmark of people who spend a lot of time together, eventually each knows what will rise the other and instinctively too, when to back off. Maybe with the help of a good counsellor they’ll get through the day in peace and return to under the blankets on the couch where I found them earlier this morning.
With the triumph of last weekend, staying out of hospital even though Freddie suffered a seizure cluster, I went through the week on a bit of a high. Even though we’re so well looked after it was such a relief not to have visited the Cashel ward for the first time in seven months and we all knew it. Ruby and I returned to our weekly routine of early rises and silent trips to Dingle. The beautiful early spring mornings make the journey so much nicer and the memory of dark, wet wintry ones is fading fast. Some mornings the gorgeous rising sunlight on the river at Blennerville accompanies us out of town and the crashing waves on the beaches of West Kerry make a stunning backdrop before we turn up the Connor Pass. There’s a little fellow, probably ten or eleven who stands at the gate of his house each morning waiting for the school bus. The house is just at the foot of the Pass and he’s been there since we started the route in September, dressed in a duffle coat, bag over the shoulder. Unless we’re very early or late he’s there and we always salute each other. The funny thing about him is that he waves each morning in the exact same way. Like an old man, elbow in at the hip, he raises his lower left arm slowly, slightly slants the hand and points the index finger in acknowledgement. Last week he had a friend with him and the two were looking at a comic as we passed, he won’t see me this morning I thought. However, without looking up the index finger went out as usual…what a man. One morning he didn’t wave at all and I was very disappointed until Ruby pointed out that it wasn’t the same fellow, my man must have been off sick or selling Mount Brandon to a tourist. More than likely the latter….
On Thursday Ruby went to the annual Fashion Show at school as put on by the transition year students and stayed over at a friend’s house. For a change I didn’t have to get up at the usual seven o’clock the next morning. Going to bed Thursday evening I was looking forward to my little lie in and a not too rushed breakfast. With Freddie lying beside me in a deep sleep and Lisa pottering round I was about to get up at 7.30 Friday morning when he went into a seizure. Holding him in my arms all I could think was will he ever get a break, will this epilepsy ever leave him alone. Thankfully it was a short seizure, no more than a minute or so, again a sign of the Frontal Lobe Epilepsy. After a little snooze he jumped out of bed to join his mother on the couch and though a little dazed he was ok. The fear for me was that another cluster was beginning but within half an hour he was demolishing a plate of omelette and toast, such a trooper. After my own breakfast I headed off to Dingle, not wanting to but needs must and knowing the hospital is so close makes all the difference. Lisa and I chatted over the phone throughout the day and all was fine, he’d put the morning behind him.
Ruby texted me during the day, she had basketball practice that afternoon so after work I wandered around town waiting for the call to collect her. After a night away she’s usually tired enough but with the basketball she’d be exhausted and grumpy. “Collect me now” was all the text said at about five-thirty and I feared the worst driving up to the school. She got in looking tired, glum even and I now know better than to ask her immediately how she’s gotten on the previous night, but we chatted a bit before the earphones went in, which was nice. An uneventful Friday journey home and we were in the door by half-past six. Straight into the front room where Freddie is seizing on the couch, Lisa holding him. What a kick in the teeth.
After another seizure at seven we gave him the Diazepam hoping we’d avoid the hospital again. No such luck as he keeled over again about seven-fifteen. The little man hadn’t recovered well after the first one so I feared the worst. Even though each seizure was mild, the last one went on for about four minutes so the bags were packed, the call to Cashel ward made and off we went. Dropping Lisa and Freddie at the doors of A&E is unfortunately so familiar and not what I was hoping for Friday evening. After parking the car I headed straight to the ward carrying his bags, its all so routine now. The hospital was packed and I was greeted by the sound of wailing kids when I opened the door to the ward. There wasn’t a nurse in sight as they were off looking after the kids so I went to the treatment room. However the door was closed and the blind drawn. A nurse was running up the corridor with breathing gear in her hands, she recognised me…”he’s in here” she pointed to the closed treatment room so in I rushed not knowing what I’d find. The little man was laid out having the line put in but doing ok, dopey after the seizures and the Diazepam. As usual they were having difficulty finding a vein but Freddie put up with the prodding only giving out a little bit and after a while the blood was flowing. Nurse Marie, who always seems to be on duty during his worst nights, popped her head around the door and lightened the mood as she always does. “Oh jesus” I said “its time we found another hospital.” She laughed at me and though I tease her it’s such a comfort having her there on these nights.
A bed was wheeled in and Fred was brought down to his room. In our rush over Freddie’s DVD player and discs were left at home so I had to go back to collect them, he’d need them if things went well. Back home Ruby was parading around looking at herself in the mirror, doing her make-up and I quickly grabbed the gear leaving her to it. Because he was so dopey when they took him to the room I feared the worst when I returned. Thankfully he was curled up in a ball in a deep sleep when I pulled back the curtain. The room was roasting so I stripped down to my t-shirt and settled into the chair, Lisa on the bed with Freddie. He had another three tiny frontal lobe seizures, his fingers wriggle a bit and his eyes flicker, all over in about five seconds, you’d miss them if you weren’t looking. Otherwise he seemed settled. Marie brought in tea and biscuits, being the wonder woman that she is. Lisa and I waited. Despite the circumstances we relaxed a bit, chatting, drinking the tea, munching the biscuits and before we knew it 10.30 had come round. Over three hours since his last big seizure. Lisa sent me home to look after Ruby. We had cheese on toast in the front room, Ruby doing Facebook, me watching Casablanca. About 11.30 we both were falling asleep so off to bed we went.
  
Saturday morning I was up at 7am, so much for a lie in, and with a flask of fresh coffee I headed over to the hospital. Marie smiled at me from behind the desk. Behind the curtain Freddie was lying out on his bed watching Spiderman, Lisa in the chair, he’d had a peaceful night, so much for my worrying. They came home at ten o’clock that morning, less than 12 hours after they went in. Home again, all was ok. Now it’s Sunday morning and he’s watching Godzilla clips on YouTube. Epilepsy had done its best but Freddie fought back. Bogart might play the tough guy in the movies but our Freddie does it in real life.
“Here’s looking at you kid.”
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4Mar/120

De Nerves

One of the drawbacks of working six days a week is that I have only Sundays to do my favourite day off things. One of them is a lie-in. That itself is now reduced to only an hour with my rising at about 8.15am or so. Getting up at this hour would have been anathema to my teenage-self; in fact at times I wouldn’t have been in bed too long by 8am on a Sunday morning, much to my father’s disgust. Not that I would be getting up to half of whatever he imagined….But since August and the 7 O’clock rises that extra hour or so on a Sunday is plenty, any longer and I feel like I’m on catch-up all day. So now after a leisurely breakfast I’m doing one of my all time favourites, cuddled up with Fred under a blanket on the couch. This little fellow is such a wriggler it’s impossible to stay too comfortable, for some reason or other he just can’t get close enough to me and isn’t happy till I’m stuck into a corner with the couch all his. His warmth and affection makes up for all the squeezing though. Right now he has me so I can’t raise my left arm to type, it’s wrapped around him, resulting in me typing write one-handed. Outside its cold but the sun is shining and perfect weather for walking Muttley later, another Sunday favourite.
This has been an eventful week for us. Fred seems to be on a twelve to fourteen day cycle at the moment and Thursday evening whilst drifting off to sleep he went into a seizure. Going with the recent diagnosis of frontal lobe epilepsy night time seizures are normal enough as is the quick recovery afterwards. After a couple of minutes he got up from his mother’s arms and with a big smile on his face stumbled over to me on the other couch. Feelings of elation are another quirk of FLE, as is the temporary paralysis of the limbs. Lisa and I decided to test if his neurologist is correct in her belief that his current main anti-epileptic drug, Tegretol, is working by not going straight to the hospital. Working in this case means reducing the seriousness of the seizure clusters he experiences. We gave him a small shot of Diazepam, a mild form of the IV drug Lorazepam they administer in the hospital when things are out of control. Lisa went off to pack the bags ready for the expected hospital trip and disruption to our lives but for once we got some luck, or should I say Freddie got a break. He slept through till 4.20am when he had another small seizure with two more mild ones at 5.45am and 6.50am. When I say mild they’re still horrible to watch, last about a minute or so and we wish our little man didn’t have to go through such anguish. After the last one he jumped out of bed, looked at me and shuffled off to find his mother. She was to be found wrapped up under a blanket in the front room; the poor thing not being able to take herself upstairs to bed and thus away from her little boy. Neither of us had got much sleep but it didn’t matter, we were at home and Fred had avoided the hospital.
As it was close to our usual getting up time I went to wake Ruby. One look at her tired face and I knew she’d had a bad night too. With all the disruption downstairs she’d been unable to sleep, probably expecting us at some stage to be charging out the door to the hospital. She’d already done training with two different football teams and her basketball team during the week. Eventually the tiredness had caught up with her.
“Do I have to Dad?” she said trying to open her eyes, her beautiful head of curls a mess.
“No, stay” I said, only too happy to go back to bed myself for a while.
After a bit of sleep, I got up and made the breakfast. Despite the night he’d put down Fred demolished a plate of toast, omelette and rasher, his mother taking just the fresh coffee to try wake herself. After a bit of recovery off I went to work.
In Dingle I went to the chemist for Fred’s monthly supply of drugs. Whilst waiting for the prescription to be filled I sat down beside an ex neighbour. As usual he didn’t recognise me and we had to go through the story of where I was from, again. He was in to collect his medicines plus an antibiotic for a chest infection. Knowing that he lives five miles out of town, doesn’t drive and it being only 10.30am I asked him what he’d do for the morning.
“Ah John I’ll go up to Foxy’s and then across to James Curran’s. I can’t really drink with the antibiotics so I’ll only have five or six before going home for the dinner” he answered without batting an eyelid.
Then he took out a bottle of Kerry Spring flavoured water, a not very new looking one either…..
“I carry this everywhere” he said taking a small drink
“It’s good for you” I replied, a bit surprised, bottles of water are usually carried by walkers or joggers in my mind.
“I keep it topped up with poitin” he said with a wink and smile whilst taking another sip, carefully screwing on the top before putting it back in the jacket pocket.
A different type of flavoured water……
Back home Fred got through the day before falling asleep at about 4 O’clock. Unfortunately the epilepsy hadn’t finished with him and he’d had another two seizures by the time I got home at six. It was obvious that something was wrong because the packed bags were still at the front door. Lisa was anxious, not surprisingly, but Fred was looking for dinner so we decided to let things ride for a while instead of heading over to the hospital. We put down a somewhat normal evening, Fred watching a movie and his parents watching him. About 9’Clock he collapsed asleep in my arms, almost immediately falling into a deep slumber. Every movement, every jerk and I jumped. My nervousness making Lisa’s worse. About an hour later he stiffened, raised his arm and I said “here he goes”. Lisa turned to help. Fred scratched his nose and left out a sigh, all was ok.
Our nerves are wrecked!
Freddie slept through the night, we stayed away from the hospital for the first time in seven months and he rose for another big breakfast at about 8.30am. Fred and I found his mother again asleep under a blanket on the couch. Beats curled up at the bottom of a hospital bed any day.
For once in these circumstances I went off to work with a skip in my step.
What a relief!
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