It was raining this morning. One of those September Monday mornings when everything is getting back to normal. The kids are well settled back at school by now and the Sunday evening dreads are a real feature of every weekend. Offices and businesses are at full flow and in a way it seems as if any holidays were months ago, stuff of legend and happy memories. The leaves are on the streets, the council is cutting back the hedgerows, the apple trees are heavy and the evenings are drawing in.
I waited for the rain to stop and did some work to get the day started. About 11am the clouds lifted and the sun came out, or at least there were a few spots of blue sky dotted along the horizon. Those early leaves make walking up Ballyard Hill a bit slippery but Daisy and I picked our way through them easily enough. At the top we turned left for Ballymullen and though the rain was gone, it was very muggy. The blackberries are rotting on the vine which is a pity to see. It was my intention to get out and pick some over the weekend and I hope it isn’t too late now. It’s a pity to see such a fruit going to waste when it can be picked for free and yet you see people buying cartons for €1.99 in a shop. Such is the way with our globalized markets and I often notice that the sparsely filled cartons are labelled as the produce of another country.
Coming back along the Lee River walk I saw a helium balloon stuck on a branch overhanging the full river. The water was flowing at speed and the balloon was hanging there like a spectator at a Formula One racetrack, moving in line with the motion of the water. It is fully inflated with the words ‘Congrats’ written in funky letters. Congrats on what I wondered? A new born baby? On reaching 18, 21 or maybe 85? Who knows but I doubt if someone waded out to tie it to the branch to congratulate me at the halfway mark of my walk. I didn’t get much of a lift from seeing it either. It looked sad and sort of took away from whatever occasion is was bought to mark. ‘Sic Transit Gloria Mundi’ as my Dad would say whenever a once successful football manager would get the sack.
Seeing the balloon hanging there also made me think of how much we waste in the world. The balloon is full of helium, a precious and unique gas. We can’t make more helium and it can’t be recycled. It is a finite resource and yet here we are pumping it into fairly pointless balloons that at the most have the lifespan of a day or two. Helium is used in MRI scanners, in space travel, to conduct vital scientific experiments and in the computer industry. The US stockpiles helium as it is seen as such a vital resource. They opened a facility in the 1920s and this is still in operation today at a place called the Bush Dome in Texas. Though a new field of helium gas was discovered in Tanzania a couple of years ago, it still doesn’t take away from our waste of the precious element. Are we going to spend millions exploiting the field in Tanzania only to blow it all away?
Along with the blackberries going to waste and getting angry at the helium being squandered in a fairly pointless balloon, I was like a green pioneer when on the last leg home. The home that felt warm when I got back inside, the one with the hot shower I then took and the fridge full of food from which I am now going to get my lunch. I probably won’t give up those comforts of modern living but I will go picking blackaas and there won’t be any helium balloons at my next birthday party.
During the early months of the summer, I went looking for a good walking route. A half hour, at least, of steady walking time and allowing me to get up a good rate of heart activity. I tried a few ways, though estates and along the roadside. They all had drawbacks; damaged footpaths or in some spots nowhere to walk at all, too much traffic or too much doubling back were other problems. So I tried the town park as I had never been inside and knew nothing about it. At 35 acres it is one of the largest urban parks in Ireland and only five minutes from home.
What a space to discover, with its multiple entrances and paths that link the town centre together. You can go in at Denny Street and come out on Dan Spring road or enter at Castle Demesne and end up by the Library. My first day inside and I’m surprised with the size and those connections it makes. I didn’t know that I could walk from home to the library in under twenty minutes. Nor did I know that my favourite off-licence can be reached by slipping along the side of St John’s church before coming out onto Castle Street. All at once Tralee becomes obvious, the layout of this medieval town makes sense and you see how it works.
Castle Demesne is my way in.
On my walk the Green school is to the right, quickly followed by the Pres and the back of the Gaelcholaiste Chiarrai. Just after the entrance to the Green is an unoccupied house. It is of the bungalow style as you would see in its original form in India. Maybe it dates from the time of the Raj and was built deliberately in this style. My friend Finbarr tells me that the park-keeper used to live there and did so for many years. As the council does not employ a full-time park keeper anymore the house is empty. Now on my wanders I wonder what could be done with this building and how important it is not left to go to ruin. A café? An arts centre? A meeting house? All of these rolled into one with other ideas thrown in?
Maybe if the park is better utilized, so this lovely building would find a function. The council could advertise health walks through the park. Leave your car at Siamsa Tire and walk to the banks, the town centre or the library. It would cut down on traffic in town, increase awareness of the park and help improve people’s health. With more people walking through the park, there would be a bigger footfall for that café. Possibly more people would use the park when they know they can drop in for a snack or see work by local artists. The house isn’t too far from the kids’ playground so parents could still keep an eye on the children. The community garden is right beside it, an obvious source of produce for a café. You can’t get more locally produced than a kitchen garden out the side window.
All of this gives people more contact with their town, gives them a sense of ownership of the park and makes us all better citizens in the process. A healthy walk must be preferable to being stuck in traffic and searching for parking. I’m not exactly sure about the current trend for wellness but twenty minutes among the trees, smelling the scent of roses in bloom and breathing fresh air must do wonders for your mental health. A bit of joined up thinking, just like how the park joins-up the town, might make even better use of the great resource that is the Tralee Town park. It wouldn’t take much, the raw materials are all in place and already well developed. Just a little bit of forward thinking may go a long way.
Daisy and I are coming back from our walk. It’s about 8 o’clock on that Friday evening which only comes around once year; the first weekend of back to school week. The kids stay out as long as possible, trying to recapture that feeling of the last three months, when they could stay out late without needing to get up in the morning. School hasn’t yet become a burden and it seems as if life will be carefree forever. When I walk through the arch the kids are running around in the last of the evening light, screaming and having fun, chasing a ball and ignoring time. Finbarr, one of the Dads keeping an eye on the late evening funsters, walks out as I pass:
“I suppose you’re going home to write about your walk?” he asks.
“Not tonight, nothing happened,” I smile in reply.
Nothing never happens though and I think about our walk, replaying it in real time in my head.
Sure it’s quiet going up the hill but the apple tree behind the derelict cottage surrounded, by the old stone wall catches my eye. The tree looks heavy with the unwanted apples and it gets me thinking about what I can do with them. Make jelly? Mix them with the yet unpicked blackberries into a crusty pie? I don’t have long to think about it as Daisy begins barking at another dog, a dog that sounds as if it has emphysema and I think it best to move away.
Going down to the left at the brow of the hill we pass a farm where an elderly lady is parking her car in the yard. Her grey hair is neatly done and the yard is very tidy, opening onto gently sloping fields, bounded below by a band of trees. I say ‘hello’ over the steel gate and she replies with a smile. In the fields to my left six or seven Charolais are on an evening stroll, fine looking animals with a bull strutting along behind, as if he is the farmer. The grass is high and a lovely shade of green, reflecting our wet weather and no doubt helping the cows achieve the weight yield for which they are famous.
Moving on, we crisscross the road a couple of times as there are a couple of blind bends ahead. The road also narrows as it goes through a patch of heavy tree cover, which makes visibility poor at this time of the year. Back on the footpath we pass a line of three women, dressed in regulation walking gear, walking in stride and chatting. Quite often we pass them and though I always say hello, I never get a reply. Tonight it isn’t any different, though one woman does look up when I speak, so I do exist, but still doesn’t answer.
“I always thought that too,” I hear and wonder what that conversation is about but I’ll never know now.
Around the bend the footpath finishes and we cross over to the one that runs along by the mixture of houses with the mature gardens, which looks like a suburban street in any Irish town. Not a soul, man nor beast, do we pass, though a couple of cars slow for the speed bumps outside the estates on the other side of the road. Just by Lidl, a woman passes with two girls, one on a scooter, the other on a bike and I say hello and yet again no reply. Am I invisible? Through the little park we go, and over the bridge that spans the Lee River.
Now I let Daisy go. She likes being able to roam free; she isn’t traffic savvy and at least here we are on a pedestrian walkway. We are separated from the roads by a belt of housing and further along by open spaces before the Rose Hotel. Daisy can run into the bushes, chase her shadow and tonight be scared by a tall plant blowing in the wind. She actually runs back along the path and when I call her she refuses to budge, her eyes pinned on the scary pink flowers that droop like a Triffid by the river’s edge. Her hair is standing up along a line down her back and her wide open eyes say nothing but fear. Eventually I coax her past but she doesn’t get over this easily. All the way along she jumps at every movement, reminding me of when I would do the same as a kid walking home in the dark.
The path winds its way along by the river, bending slightly in line with the course of the flow. Beyond the Rose Hotel is a series of apartment blocks, not any different from those built anywhere during the boom. At least these are occupied and I see people unpacking Friday evening shopping, with the young kids excited by what the parents have bought. A man passes with a dog on a leash, a Newfoundland of some type and Daisy hides behind me before running past as fast as her little legs allow. Now we are on the straight path and a couple of kids are canoodling on a bench. Not the worst place for it but the girl doesn’t look too happy, maybe she was expecting more than a Friday night by the river or maybe the young fellow has just said something stupid.
As soon as the exit appears I put Daisy back on the lead. A few weeks back she ran out in front of a car and was very nearly no more. The young fellow driving got a massive shock as he screeched to a halt inches from her. She froze in the middle of the road, making the drama even worse. Lesson learnt by me but not by Daisy and she is liable to do the same again. Out of the exit and we turn for home, under the arch and back closer to that ale in the fridge.
So nothing did happen but life went past, people went home, Daisy got scared and I got a thousand words.
During the Rose of Tralee Festival, Daisy and me were on an evening walk. As we climbed the steps into the park I could see a big black dog to the left but he wasn’t paying much attention to us, though Daisy was checking him out. He was eating a slice of bread, which he’d pulled out of a freshly dumped black bin bag. The entrance is also by a carpark and someone had obviously driven up and dumped their rubbish behind the closest tree. It is a secluded area and no doubt they did it without being noticed. The dog eating the bread had made big tear in the large bag and was delighted with his find. I wasn’t. ‘For fucks sake’ I said out loud which caused the dining dog to look over, though not stop what he was doing. Daisy growled a bit, not that the other dog took much notice.
Walking off into the park, I could hear the sounds of the festival ahead and see the crowds of people milling around in the early evening sun. What I could see also was more bags of rubbish, dumped in the brambles that grow along the edge of the path. Someone was getting rid of a lot of rubbish or was it more than one taking advantage of the secluded spot? Usually there is a van or a council worker somewhere in the park and though it was 7.30 at night, it was Festival week and maybe, I thought, there was one on late duty.
By the main entrance the food stalls were doing a good trade and the smells of frying meat, bubbling doughnuts and barbecue sauce were filling the air. A few of the escorts in their monkey suits were taking the shortcut to the Dome and other well-dressed couples were headed the same way. No sign anywhere of a council employee though and this was annoying me. At the gate I spotted a man in a high-vis jacket, with a blue polo short beneath it. He was wearing heavy duty gloves and was pointing up Denny Street, giving directions to a few tourists. ‘Just up there on the left, you can’t miss it,’ I heard him say as I walked up the short, sloped pathway. As the tourists headed off I stopped.
“Sorry, are you with the council?” I asked, just as I spotted the Kerry County Council logo on the jacket.
“Yeah”, he answered, looking a bit quizzically at me.
“It’s just that some prick has dumped a few bags of rubbish, big black ones, over the other side of the park,” I said.
“Where? Over by Castle Demesne?”
“Yeah, just as you come up the steps.”
“I’ll go over there now,” he said, with an enthusiasm not always associated with public servants, especially at nearly eight o’clock on a summer’s evening when everyone around them is having fun.
“Jesus that’s great” I said, “there’s a dog having his dinner out of one of them.”
“Don’t worry, I’ll take care of that,” was the answer.
The next morning, I bounded up the steps at about 8.45 AM. I looked to my left and there it was, it was gone. The brambles were clear too. The man was true to his word. The park was spotless wherever I walked. The bins were empty and except for the odd bottle left over from late night drinkers, you would never know that the previous evening had been the last one of the festival and that the town was heaving. It was as if it had never happened.
This came back to me this morning when I read of the reduction in council services due to deceased funding. Numbers of outdoor staff has dropped 19% in the last few years. I wonder if many are left of the likes of the man who had cleaned up someone else’s mess the previous evening? Very few and I guess he will not be replaced when his time is up. Yet you will hear people complain that the council should do this or do that and rubbish is a disgrace.
They can’t do much without the money.
We are on our morning walk. Setting off from home, we cut across Castle Demesne and through the pike gate, passing by what I guess is the ruins of a castle. Once up the few well-worn steps we are in the park proper and Daisy is in her element. This is her park and any dog we meet usually gets an earful, regardless of size.
Going along the path we walk straight into the Park Run. This Saturday morning 5K run starts at 9am each week and it is the same in town parks throughout the world. A simple online, once-off registration and fee of €5.00, allows you to turn-up each week, run the marked route and a scan of your tag gives you a weekly reading of your times. A simple idea that is very popular. So much so that when Daisy and I get to the top of the steps a herd of people are coming around the corner ahead. This is not what Daisy is used to and she takes refuge behind me, before we move onto the grass to make way for the runners.
All the way around the park we are walking against the flow. People of all ages, sizes, shapes, height, colour and creed are out this morning. To me the run is a perfect example of the mix of people now living in Ireland. The usual off-pink skin is not the only one on display and at least one of the runners is not of the traditional catholic creed. I have seen the man, now coming at a good pace towards me, many times around town looking very elegant in his white Salwar Kameez, probably on his way to or from prayers. He smiles a hello as we pass. There are long haired lovers from who knows where and other fans in their red Chevrolet shirts, who think their time has come again. I say hello to a fellow footballer from my Monday night five-asides who is encouraging his son and an eminent radio journalist greets me as she powers past. A few mothers are pushing buggies, with smiling babies sitting up front, wondering what the fuss is all about.
In the distance, over by the Rose Garden, encouraging music is blasting from a sound system. Before long I am singing ‘Runaround Sue’ by Racey and it worries me that I not only know the words but I also know the name of the band. A man plods past, breathing as if it may be his last moments on earth but he seems unconcerned and Daisy sniffs at him as he runs along. The long line of runners keeps coming, some walking, some jogging and some powering past. Just before we walk into the Garden of The Senses we pass some of the same people again, beginning their second lap.
Once through the Rose Garden we head away from the finish line and out onto Denny Street. The traffic is quiet and we cross the road into Pearse Park. Is there a town in Ireland that hasn’t got at least one public area not called after a 1916 rebel? Probably not. As we walk past the bust of Pearse I realize that Daisy hasn’t had a bark at another dog since we left home. Highly unusual but at the end of the path I see a man putting a pug on a leash. Maybe there is time left yet. The man in a red hoodie is bending down with his back to us. As we walk up Daisy leaves out a bark, just as the pug does the same. The man jumps, swears and turns around. The two dogs keep barking and I drag Daisy away before the incident escalates.
“Sorry about that,” the man says before I do. Nothing like getting your apologies in first.
“My fault,” I say, dragging Daisy out the gate.
Maybe this is the Ireland the 1916 rebels imagined. People of all races running around the park and barking dogs the only threat to the peace. Possibly, but ‘Runaround Sue’ is the only tune I’m walking to this morning and trying to get into the mind of the man on the plinth behind will have to wait.
The boy points and runs towards Daisy. He is full of smiles and says something to his Dad. We are between the mesh fence of the hurdy-gurdys and the low stone wall that runs along the grass by the Siamsa Tire building, a space of no more than four or five feet. The two obviously like the look of Daisy and she likes nothing better than a bit of attention.
“Does your dog bite?” I’m asked by the little man, who I see could be no more than five years old.
“No,” I say though I pull back on Daisy’s lead in case the boy is scared of dogs.
The smile on his little face would light up a thousand lives and he captures my heart immediately. The father is a big man, well over six foot and is powerfully built, in the way of someone who happily works hard for a living. His fair hair is combed over to the side and cut short around the ears and neck. The striped, long sleeved shirt is tight around the chest, open at the neck and tucked into a clean pair of chinos. On his feet are a pair of well-polished brown shoes that look like they may be only for Sundays or other days out. The boy is a carbon copy of the Dad; the shirt tucked into his trousers and the shoes scuff free, though not as polished as the older man’s.
“She’s just like the ones we have at home, isn’t she?” the father says.
I think they are chatting to me but I quickly realize the man is talking to the boy only. The boy smiles up at his Dad then turns to me. He who holds up two fingers before saying:
“We have two.”
“Lucky you,” I say.
He keeps smiling. Obviously a very happy young man. His Dad no doubt the same. The boy rubs his arms and points at my bare ones, while also shivering a bit. It is then that I notice the hearing aid in his right ear.
“I know,” I say clearly and loudly, “it is cold and I forgot my jumper.” I rub my arms too and pull at my thin t-shirt to show how little warmth it is giving me.
The boys hugs himself and I guess it is to show he is warm.
“Lucky you,” I say.
He smiles and bends down to rub Daisy. She licks his fingers which makes him laugh even more. The father, who may be a bit shy, just nods at me.
“We must go now Sean,” he says after a few seconds
“You’re a great man,” I say to the son, “and full of muscles too”. I gently squeeze the biceps on his right arms and he falls into even more laughter.
The father looks at me with a beaming smile.
“Thank you,” he says.
“Good luck,” I say and head off for home.
Two hours later and I’m still smiling.
How to begin the last one? For the last one hundred and eighty Sunday mornings, mainly Sundays as life has intervened at times, I’ve sat down and written of our week. What had begun as a short term plan to see if I could write, and write regularly, turned into Verlingsweek, at which I became very disciplined at producing. That Fred’s epilepsy took a turn for the worst when only two Sundays in was coincidental but Fred then became the dominant theme of each week’s post, so much so that the project evolved into a diary of his life. Over a couple of pints with friends recently they commented how they read Verlingsweek so they don’t have to ask me about Fred, which I now remember as being one of the reasons I initially included his epilepsy in the weekly posts. Now Fred is growing up he deserves his privacy and I can’t write of our week without his condition cropping up, his epilepsy is our week. This past Thursday Fred turned twelve and I’ve decided it is as good a time as any to stop writing Verlingsweek, to give him a private life again. Fred is becoming a young man and one needs to do that in private, not with your father cataloguing your every move...
All week Fred had been counting down to his birthday. For the last three Thursdays he’s been counting down to an event; Christmas, New Years and his birthday, they fall on consecutive weeks. Fred was planning a lot. One was for all his school friends to come over, one I think was a surprise party and another was for Ruby’s friend Sarah to come for tea. In the end we decided to keep it as low key as possible and to do some of Fred’s favourite things on the day.
In the morning Fred came down to breakfast with cards from his parents and Ruby on the kitchen table. We made a fuss over him; how great it was to be a grown up boy and how much we all loved him. Unfortunately for Fred he still had school, though he did claim that he couldn’t go as it was his birthday. Later when showered and dressed we set off and dropped Ruby first to her school. At Fred’s I left him at the gate; he now walks in on his own as any other kid would do and Denise waits in the classroom for him. It is lovely watching him head in, hands in the pockets and not even looking over his shoulder at me. If there isn’t anyone in earshot I’ll say ‘I love you,’ to which he’ll reply ‘Love you too.’
Before heading home I went and bought the ingredients for the chocolate birthday cake which he’d chosen. At home Lisa got baking while I went to my office. The postman arrived with a card from Granddad Jimmy which we brought with us when collecting Fred at lunch time. Unfortunately his Mecha Godzilla, which he’d also asked for, didn’t arrive though I knew it was on the way. Lisa and I drove over to collect him after school which is a special treat for him these days. Usually it’s just me.
At the school gate he came out all smiles...
“I did brilliant Dad!” he declared, to which Denise nodded in agreement.
In the car he opened his card but looked about...
“Hey where’s my Mecha Godzilla?” he asked.
“It didn’t arrive Fred,” I answered, “but as it’s your birthday we’ll go to the toy store and get you something until it does arrive.”
“The big toy store?”
“Yes the big one.” I answered.
“We’re going to the restaurant for a birthday lunch,” Lisa said to which Fred smiled in delight.
At The Grand, Fred and Mum got out while I went to park the car. When I arrived in the two were sitting at a high table towards the rear of the restaurant with the menus unopened. There wasn’t a need to look at them; Fred knew what he was getting. Soon the waitress came down and asked if we were ready to order...
“Ah excuse me,” said Fred, hand in the air as if in school, “I’ll have a white bread sandwich with ham and coleslaw, please.”
The lady nodded and took the rest of our order.
“Fred will have a hot chocolate too,” Lisa said.
“For his birthday,” I added.
The birthday lunch was eaten, the hot chocolate with marshmallows arrived and the waitress brought Fred a load of extra biscuits ‘for your birthday,’ she said. He was getting spoiled, no harm in that.
Afterwards we dropped Mummy home before Fred and I went to the ‘big toy store.’ Fred is like the proverbial kid in a sweet shop when in a toy store. He can’t make up his mind, keeps walking up and down the aisles, always looking for what in all likelihood isn’t there, or else, like his mother clothes shopping, he’ll go back to the first toy he looked at and decide it’s what he wanted as if he just found it. After a quarter of an hour of this I was losing my patience. On walking up one aisle Fred stopped one of the assistants...
“Ah excuse me,” he said, “I’m looking for a big blue dragon.”
“Ok,” she said and walked off, Fred following.
Down another aisle she found on a higher shelf a big blue dragon.
“How about a red one,” Fred asked.
She climbed up and looked at all on display but no red ones. Off the patient assistant went to check the stock of the computer but returned to say none were in stock. Fred sighed and said the blue one was fine. We bought it along with a batman DVD and headed for home. Back in the kitchen we opened the box and Fred went off to play with the blue dragon, the happiest man in Ireland.
That evening for dinner we had another requested meal. Fred wanted burgers and chips, “and the burger buns,” as he also insisted. The homemade oven chips, burgers and buns were eaten, nay demolished, by all of us and a fully stuffed Fred got up from the table.
“Wait for your cake,” Ruby ordered and Fred sat down again.
The lights were turned off, the candles lit and we all sang ‘Happy Birthday’. Fred was beaming; all was working out to plan. With cameras at the ready he blew out the candles and the most delicious of chocolate cake as baked by Lisa’s fair hand was eaten.
Squeezing in a slice on top of the dinner wasn’t easy but we managed it. Fred and I struggled inside to recover, Ruby went off babysitting and it really was the nicest of days.
The next afternoon I went to collect Fred from school. Ms O’Connor and Denise told me Fred was full of chat about his birthday, that he’d had a great day. We all had in truth. His Mecha Godzilla arrived Friday morning and on Saturday Ruby’s friends came over for the weekend, rounding off a great couple of days for the man. Now it is Sunday morning, Fred is watching Godzilla online while the ladies are breakfasting downstairs. Lisa has gone off for a run with Muttley and all is calm in Ballyard.
Verlingsweek is ending on a high note. Thankfully it was good one for Fred considering some of the weeks I’ve written about over the last few years. While his epilepsy has stabilised we’ve also learnt to live with it and to not let it dominate us. There is a long road ahead of us but at least we are on that road and many people are helping us. Fred is a wonderful, caring, funny, intelligent young man with a unique look on life. The next few years will be all about him fulfilling his potential, something I’m looking to watching Fred do in style.
For now I’d like to thank everyone for reading, for commenting and just for being a listening ear over that last one hundred and eighty Sundays.
Goodbye from us all.
By 3am this morning Fred was on his way to his mother’s bed for the second time, pillow under his oxtor, out into the dark night attempting once more to find sleep. He’d gone up to our bed about 10pm with Lisa, to go to sleep but when I went up at 11.10pm Fred was looking at me awkwardly as Mum was fast asleep and he was wide awake. In I got, Lisa went off to her bed and Fred cuddled up. By midnight I was finished my book and Fred was still awake...
“Maybe I’ll go to my Mummy,” he said, setting off for the first time.
Shortly before 2am he was back, pillow tucked up tight...
“I think I’ve found my sleep,” he said, standing at the bedroom door like little boy lost.
In this time I hadn’t been to sleep as I had a feeling he would be back and being a light sleeper these ideas prey on your mind.
“Get in,” I said, “and go to sleep it’s too late for all this wandering around.”
“Yes my Dad.”
I didn’t find his love for me cute at that time of the morning, all I wanted and needed was sleep, for the two of us.
Forty-five minutes later Fred was still sighing, rubbing his legs around on the bed, obviously not asleep. I switched on the light and took up a book of Raymond Carver short stories I keep by the lamp for just such occasions. Fred was lying on his back, eyes scrunched closed, pretending to be asleep.
“Go back to your mother,” I said sternly, patience long gone.
“Go back upstairs and don’t come down again tonight, you need to sleep.”
“Ok my Dad,” and off he went, trusty pillow stuffed up under the oxtor once more.
Raymond Carver wrote fast paced short stories and the subject matter is never the happiest. His sentences are short and his narration tends to fly along, probably not the best for helping one to sleep. Four stories later and I was still wide awake but at least no sign of Fred. At 5.35am I took one last look at the time on my phone and turned off the light, eventually drifting off to sleep.
Why Fred couldn’t sleep is anyone’s guess. He had a couple of seizures Friday afternoon which no doubt threw his system out of kilter. All this Christmas activity plays havoc with all of us and Fred has had a fairly lazy time of it. When he had the seizure on Christmas Day we feared it might be the change up to 400mg of Tegretol from the 200mg. Lisa went back to 200mg immediately after that and thanks to the kindness of a friend combined with the help of a pharmacy in Killarney we now have a supply to do us through to February, when Novartis say the 200mg will be back in general supply. The fact he now had another seizure a week later might point to the change not having had an effect, though we are not convinced, Fred is definitely better on the 200mg dose. Apparently ‘the holidays’ are the worst time for seizure control with bad sleep patterns combined with bad eating and little exercise leading to breakthrough events.
Who knows anymore, except that we do know Fred on 200mg and on regular routines tends to deal better with his epilepsy. Tomorrow sees the return to school, back to normal and, much as I’ve loved this break, it might be the best thing for us all.
Back to early morning rises, the school run and homework. Since the turn of the year I’ve been trying to get Fred around to the idea of the 2015 being the year of the big steps in improving himself, becoming the great young man he is capable of being. Fred will be twelve on Thursday and we’re using that as the milestone for him to aim at, doing what a twelve year old would do. It won’t be easy and there will be a full year of work ahead of us but Fred will respond well, he’ll work hard at school, do a few jobs around the house and the such, if only to keep his parents quiet.
Now it’s mid-morning. Fred and Ruby are watching TV, Lisa is pottering around doing Sunday morning jobs. The sun is shining and it is a beautiful winter’s day. The plan is to go out for a drive later; I had gone back to bed after breakfast but of course I couldn’t sleep so I’ll let the day wash over me and I’ll be exhausted by 9pm.
As for our Fred? I wouldn’t be surprised if he’s still wandering the house come 2am...
Today is the day we begin to engage with the world again. It’s been a very lazy, quiet, wonderful Christmas and this gap period until New Years Eve is just perfect for doing nothing. I’ve watched The Great Escape and It’s A Wonderful Life while Fred has watched every episode of SpongeBob on Netflix, at least once. Lisa has cried her eyes out At Saving Private Ryan, though the Vanity Fair I bought her yesterday with the Bradley Cooper feature cheered her up. Now Fred is downstairs watching some other old favourites while Lisa and Ruby are off at the gym, burning off that Christmas food which has been on a continuous roll since the 24th.
Thankfully we all slept in until about 8.45am Christmas morning. Fred got a load of presents but this year Santa went easy on the Godzilla toys, as we feel he has to move on a bit to more age appropriate and practical stuff. So the little man got puzzles, DVDs, clothes, a scope for watching wildlife, games and heavy fleece pjs. For a while he was disappointed and went looking under the tree to see where the Godzillas were but he quickly got over it and went back to his collection in the corner. Those pjs were put on and only came off this morning, three days later. Fred wore them everywhere along with some heavy duty socks. In bed, under the blanket watching TV on the couch which he hardly left, at the kitchen table, not once were they taken off, day or night. He did have a shower Stephen’s Day but the pjs went back on. This morning when he came down for breakfast the smell preceded him and into the wash they went, to be ready in time for the big visit tomorrow.
The smile is still on Fred’s face from when Lisa told him this morning that Aunties Claire and Rudi were coming tomorrow. Already he’s planned the visit to the Grand for lunch and the movies they will watch together. Last Sunday his cousin Paulie came on a surprise visit and Fred nearly passed out with excitement, jumping into his lap as soon as Paul drove up to the house. Paul, who had been at a party in Killarney the night before was a bit worse for wear but he indulged the Fred. Again it was a perfect excuse for a visit to The Grand which was lovely on that Sunday afternoon, with pre-Christmas shoppers coming and going. Fred had the Galvin special which was as good as ever with chowder up to the lip of the bowl.
On Monday Lisa went to get Fred’s medicines from the chemist so we’d have a supply for the holidays. For some reason the 200mg tablets of Tegretol which he usually gets, were out of stock and so we had to use the 400mg. He takes three and a half tablets per dose and now that was changing to the bigger pills it worried us. Epilepsy control is very tight; any change in meds can have terrible effects for some reason which is why we can’t change to non-generic cheaper versions. The worst bit is that the 200mg are out of stock until February so we’re trying to ration the existing 200mg ones until the pharmacy can find an alternative source.
On Christmas Eve Fred got very bad confusion just as he went to bed and shook himself to sleep, having a tiny frontal lobe about 1am. On Christmas morning he was fine and got on with the day but he did seem a bit off at times. About 6pm he got the bad confusion again and cuddled up with his mother for a snooze. A seizure broke through about 6.45pm throwing our day upside down. If this was due to the medicine changes we could have been in for a bad night, the last thing we wanted on Christmas Day. Fred slept for another couple of hours but woke feeling fine, a bit hazy but fine. For the rest of the evening he watched DVDs and played with his presents with us constantly watching him.
That was that though. Lisa went back to the 200mg tablets the next morning and we don’t know what we are going to do about a supply when they run out. Tomorrow we’ll be on the phone seeing what can be done, looking for a source somewhere. Also in our heads we’re thinking maybe it was just a coincidence, just one of those unexplained breakthrough seizures that epilepsy likes to throw at us from time to time. Who knows?
What I do know for certain is that Fred will continue on and we’ll bring in the New Year on Wednesday night. Now that 2014 is nearly over we’ll look back and remember all the people who’ve made the year easier for us. My family and Lisa’s who come and visit and make Fred so happy. Blennerville school, without who Fred would have a very contained life. The freedom that their care gives us is beyond describing and the fact Fred loves going to school says it all. Conor and Cathy who, though we haven’t had to lean on their hospitality as much, we know are always there for us; Conor’s visit was a highlight of the year for Fred. Ed and Pamela Galvin who look after us from Maine and Kilmurray; Ed taking me to lunch introduced The Grand to the family and Fred hasn’t looked back since. The staff of Temple Street and Kerry General Hospital who care for Fred and his parents so well. Brian who is always at the end of the phone for me, giving me advice and distracting me with cricket scores. All our friends who we know are there if we need them, who always ask, who always care and who we know would be here in the drop of a hat.
To all of you thank you and have a Happy New Year.
Fred is hanging with the girls. Last night, Ruby and friends went to a gig in Killarney and two of them stayed over. Actually when we arrived back at ten past midnight Fred was in his pjs at the top of the stairs to welcome them home. Such had been the expectation that he hadn’t been able to sleep but he quickly drifted off once we got into bed. Now this morning he had breakfast with them and afterwards the four cuddled up under a blanket to watch a movie, Fred in between the two visitors. Christmas has truly arrived for the little man; all that waiting has paid off eventually.
All week he’s been counting down the days. Finally Fred has got it into his head that it’s a matter of days now and all he has to do is sit it out. Each morning we mark off the calendar and another door is opened on the Action Hero Advent one. Lisa and I have been counting the days as well, both of us aware that if Fred went through a good spell seizure free then that run could be broken on Christmas day, the last day you’d want it to happen.
On Wednesday Fred came out from school looking very tired and telling me he didn’t feel well. We drove home and he was twitching badly in the front seat. Luckily we got home and onto the couch without incident. He slept if off and was fine by the time Lisa got home at 5pm. Ruby was off ice skating in Cork so the two of us relaxed and it seemed to do the job. That night Fred was saying he didn’t want to go back to school, he was too tired and it was time for holidays. For every kid the last day at school before Christmas holidays can be the best part of the year and I didn’t want Fred to miss it. So I told him there would be a party and he reluctantly agreed. I dropped him off in his civvies, no uniform day at school, and in he went anticipating a big day.
The excitement of national school kids when breaking up for Christmas is wonderful. Out they all come with whatever they made, decorations, Yule logs, cards and presents, proudly showing them off to the waiting parents. Fred was no different. He came out beaming having had a great day of eating and watching movies, possibly his best yet in education.
“I had a great time Dad,” he said, selection box of sweets in his hand, sitting up in the seat full of excitement.
“Oh we had a party and did toy telling.”
“What’s toy telling?” I asked.
“Oh you know when you have to tell the class about your favourite toys.”
“Did you do it?”
“Yes,” he beamed “I stood up and told the whole class about Godzilla, Gigan, Mecha-Godzilla, King Gidorah and all the monsters.”
“Yes and when I was finished all my friends clapped and Ms O’Connor said I was brilliant.”
The tears in my eyes made driving dangerous, I was so pleased for him. I could only imagine the detail and the actions played out, every monster named and described. For Fred it would be a big thing to stand up and tell the whole class but it shows how comfortable he has become at Blennerville. Merry Christmas to them all.
At home he proudly showed Mummy his present and the selection box. The wrapped present went under the tree and Lisa opened the sweets. Then Fred went to his bag and pulled out the prize he won in the school raffle, a radio.
“Now I’ve got my own radio,” he declared, opening the box with a scissors.
I got some batteries and Fred turned it on. For the rest of the week the radio has gone everywhere with him and is beside the bed at night. He’s found some music channels and is getting used to its workings. His first radio and he loves it.
That evening he fell asleep while watching a movie and had a seizure about an hour later. At least we thought, it may now be out of the way for Christmas. Lisa and I did the routine, made him comfortable, settling in for the evening. Thankfully he only had the one, as per the last two events and he woke hungry about eight o’clock. The rest of the evening went peacefully and the two of us cuddled up in bed about 11pm, Fred sleeping the night through, me watching him, waiting for something to happen.
On Friday afternoon Ruby came home with the girls and Fred roused himself from the couch to go dance in the kitchen to the music they were playing. That evening he came with me as we drove over to the off licence to get a beer, twice going around town to look at the Christmas lights. Oddly enough he had another seizure about 7am Saturday morning but even that one he slept off and still came down for breakfast at about 11am. All in all not a bad way to see a seizure event through and hopefully that’s it for a few days.
Now we’re on the full countdown to the big day and our house is looking very seasonal thanks to Lisa.
Just before I came upstairs I checked that Fred was ok. Cosy under the blanket, cuddled to the two girls but yet had a sour look on his face...
“What’s wrong?” I asked.
“I hate this movie, it’s boring,” he said.
Another lesson Fred will have to learn, there are times when you have to like those girly movies...
Plenty of time for that though, for now we’ll enjoy Christmas and see what Santa brings to those who’ve been nice...Happy Christmas.