Saturday 31 December 2011

Ah Den it was all right boy

New Year’s Eve and Freddie is watching Godzilla vs. King Ghidorah while re-enacting the battles with the figures he got from Santa. Even though this is a movie from the 1970s dubbed from the original Japanese into bad Americanised English he loves it and knows the film backwards. Before I put the movie on he has to have all the figures, Godzilla, dinosaurs and of course the two King Ghidorahs ready on the blanket so that the battles can be followed from the start. The imagination and ingenuity of kids is often not fully appreciated but we’ve all been young ourselves and hopefully had fun too. The important thing us adults should do now is not only to leave the kids to their fun but also try figure how our education systems can encourage and develop the fun into possible careers. Surely that’s the key to developing the creative economy that is supposed to be our way out of the mess we’re in. No point banging on about our future if we don’t do something about it now.

Anyways looking at Freddie now doing his battles, concentrating on getting every move right, is making me laugh and even prouder of him after the year he’s put down. The ambulance trips, the long hospital stays, the MRI, being doped off his little head, waking up alone in the ICU, being poked and prodded by medical staff, fighting with his mother, he’s come through it all smiling. His mother has gone through the worst of this with him and the stoicism she’s shown is just wonderful. To pay homage to the care she’s shown to Freddie whilst also being a guiding mother to Ruby and amazing partner to me, neither of them easy tasks I can assure you, is beyond my capabilities to put into words. Suffice to say that I am married to the love of my life and for that I am truly grateful!

On the many New Year’s Eves of all those years ago, while enjoying a few pints, my good friend Denis Ellis would always at some stage ask “how was the year for you?” It always made me think and giving a straight good or bad response would be difficult. The fact as young bucks in 1980’s Cobh we knew that” down the back” of the Commodore Hotel on New Year’s Eve there was always a good chance of a snog probably helped give a positive review of the year. Even though Denis and I haven’t been able to share a pint on this night for years I always ask myself the question in his stead. No doubt 2011 has been tough for my family and me but it still had many, many good bits too. The way Aiden and Mark dropped everything to help me move shop over the one day in August was brilliant…Then Aiden did it all again to help me move house a month later. “Its only what friends do” he said as I thanked him again on  Christmas Eve…Having Brian Mac without a second thought do so much for Freddie still makes me cry…. Knowing that I have a list of ten or fifteen names in my phone I can call at anytime for help is such a comfort…. Those pep talks I got from the Flood brothers from time to time… Re-enacting the bad times to Kevin and Keith got things into a perspective that really helped me move on each time…. Every time someone stopped me on the street to lend support lifted the heart and made me smile…Spending the day in Dublin with Brendan…The day trips with Ed…all added to the good memories and there are plenty more in there. Countless moments throughout this year Freddie or Ruby have made me laugh, forgetting everything that has being going on around us. As a family we don’t want Fred’s epilepsy to define us and even though its there all day every day all year round fuck it we’re going to have some fun too.

So as 2011 goes and 2012 arrives, Den I have to say as I probably always did, it was all right boy. 

Wednesday 28 December 2011

Ghosts of Christmas Past

There’s a melancholy that comes over me on Christmas night that I know is just throwback to my childhood. My family made such a big thing about Christmas, not over the top lots of presents type thing, just a warm well fed happy time. The whole build-up in school, getting the Sugradh annual, carol singing, talking about what you were going to get from Santa used to raise such excitement that I’d be fit to burst come Christmas Eve. The tree going up with the same decorations each year, putting our presents under it, lots of cards from all over, the box of Lemon’s from Bob and Ada Thompson the traditions that made Christmas a big event for me.  There was a time when I wouldn’t read the TV pages for after Christmas before the big day, as that would be for when Christmas was over. For my father it was a big day too, probably something to do with not having much of a childhood combined with it being the one day he could spend with his family and lock the world out without rebuke. There was a chain on our big front and I think he used to slip it on about midday! So come Christmas night the sense of it being all over for another year would bring me down, probably more so in my teens as I began to realise that those special days belonged in my childhood. As a kid I’d be so tired I’d fall asleep reading my Shoot Annual after being allowed stay up late.

Even though Christmas has lost some of its magic now, inevitably so as it’s a time for kids, I still get that pang of it all being over, usually about the time I head to bed. This year it was no different but Fred’s epilepsy so dominates our lives that I hardly noticed it. Sure I was a bit sad the day was over for another year but even more so that Fred doesn’t get to enjoy it as much as he might. Last weekend he keeled over as we were putting up the tree and had to spend three nights in hospital. It was one triggered by the excitement but also the tail end of the previous weekend’s cluster. Seems to be his current pattern….a cluster followed by a few days free, followed by another less intense cluster. Just in case it hasn’t had enough off him, it comes back to try again, just to remind him it hasn’t gone away. The result of this was that we didn’t want to build the excitement too much as we didn’t want him back in again. So there wasn’t much talk of Santa Claus coming on a specific night and presents were slipped under the tree one by one. Even though his mother still wasn’t slow to bring out the “Santa’s watching” line when he misbehaved! Each seizure free day to Christmas was counted down in our heads, never mentioning to each other,  hoping against hope that he’d make it. Make it he did and the two of us walked into the front room Christmas morning to find all his presents under a big rug on the couch. The Godzilla figures, the Ben10 figures, the King Kong and the Ultraman figures all that he’d asked for in his modest little letter to the big man were there and watching his face light up was the best present I’ve ever had. A great, peaceful, happy day was had by us in our little house in Ballyseedy interrupted only by food and dog walking.  The slippers given to me by Ruby, some traditions don’t change over the generations, are keeping me warm as I write and Freddie is watching a movie after a morning of King Kong vs Godzilla battles.

Just as Christmas should be.


Monday 12 December 2011

Hannah Lightens the Weekend

Sitting on the couch on a cold December evening. The wind is blowing a gale outside, not so bad that the hailstone is coming down the chimney like last night, but still there’s a storm a brewing. There was a man in the shop today, a fisherman for forty years, who told me there’s a hurricane due tonight, looks like he was right. He also told me of his six times in the water during the lifetime at sea, once with two broken legs, all this whilst laughing as he spoke. It’s a lovely skill to have, to be jolly as you speak, one that instantly puts you at ease and leads to good story telling. Freddie is on the couch beside me writing his letter to Santa, never a man to rush things, luckily his parents are ahead of him on this one. His darling sister is lying out on the other sofa reading some large tome of a book for the second time. She hasn’t read much for a while, a teen thing, so twice in the space of a month is a big thing.

Usually I write this blog on a Sunday afternoon but yesterday I fell asleep on the couch in front of the fire, a lovely thing to do when you let yourself do it. As a result there was no dog walked nor word written. Not that Muttley minded too much, I don’t think he stepped too far out of his kennel all day yesterday. In fact when I went to put the bins out there was no way he was going to walk with me up the driveway to the road. Instead I had to brave the cold on my own. The lazy mutt didn’t even lift his head from his pillow when I went to check on him later, probably worried that if he showed any enthusiasm I’d have him down the woods in no time.

Outside of sleeping badly lately which isn’t too unusual for me, our precious boy Freddie was in the hospital again from Thursday night to Sunday morning. Thirty days seizure free was lovely but as always as the amount of days increase we secretly dread the likelihood of a seizure happening. So as he fell asleep Thursday night he had one. We waited for a while before setting off for the hospital in the vain hope that it might be a single event but no such luck and about eleven I was calling the children’s ward at Kerry Hospital….the conversation went:

“Hi Marie its John Verling…” I said, recognising the nurse who answered
“Freddie?” she asked.
“Ya, he’s just had two in the last hour”
“Bring him over; I’ll get the room ready for him”

It’s so reassuring to have such caring service on our doorstep but I really wish we didn’t have to avail of it so often. Going into auto-pilot we bundled him up and headed over. Once again the poor fellow woke up with nurses around him and a doctor sticking a needle in his arm. This needle for IV drug administration is ironically known as a freddie, maybe if we’d called him Pat all this might have  been avoided! After Lisa and Fred were settled I went home to look after Ruby. Still not over her paranormal fears she slept on the spare bed in my room, sniffing her way through the night as she had a cold which was keeping her out of school. At six I got up showered and headed over to the hospital. Before I went in the room, Marie filled me in the night, reading the chart for reference. All I could see was seizure, seizure, seizure about seven in all with the time written beside each one. Slowly opening the door I could see Lisa lying in an uncomfortable ball at the end of the bed with Freddie stretched out on top of her. Lisa went home shortly afterwards to shower and change  whilst I cuddled Freddie. Unfortunately his seizing wasn’t over, it kept picking at him during the day and into Friday evening. This epilepsy is like a bully, it leaves you alone for a while then when it remembers you again it keeps at you over and over again. Freddie does his best to stand up to this bully but he can only do so much without the help of strong drugs and those drugs really wreck him.

After Lisa came back, with fresh coffee and croissants for breakfast, I had to get myself ready for the trip to Dingle for a day of work. Not that I was in the mood for it. Freddie was lying on top of me and despite the circumstances I was quite comfortable. Just as I was about to get up he said something. Then he repeated it as I couldn’t understand him, the IV drug Lovazapram makes his speech blurred. “I want to puke” he was saying. Too late...he projectiled all over the bed, me, the floor, the walls. Poor little fellow but he felt better afterwards. The poor father had to go home and change before heading to work. Oddly enough Ruby was laid out in front of the TV when I got back, too sick for school apparently.

That afternoon I got a text from Ruby asking if her friend Hannah could come for a sleepover. Too happy to oblige my only daughter I said yes, happy too that she had someone to occupy her whilst Lisa and I were at the hospital. So about five o’clock the lovely Hannah appeared at the door of the shop and we headed off to Tralee. Going over the Conor Pass it was pitch dark the only light being the full moon as we reached the summit. We chatted easily and each time I turned to Hannah during conversation all I could see was her big eyes looking up at me in the dark. Sweet kid that she is, she’s a good friend of our Ruby’s and great company. Lisa took her home and fed the two Chinese takeaway while Freddie and I dozed in the hospital room.  About ten Lisa came back and I headed back to mind the girls.

So a full weekend of back and forth to the hospital for us. Saturday night I stayed with him and experienced what Lisa has to when she stays. Trying to sleep in an uncomfortable chair, constantly checking him, not being able to sleep with the worry. At eleven o’clock I tuned in to the phone app on my mobile. From a radio station in New York I picked up a live broadcast of Garrison Keilor’s “A Prairie Home Companion”. Two hours live from New York; a Christmas special from my favourite broadcaster was a lovely way to get me through the evening. Carols, jokes, stories, the “News from Lake Woebegone” and Freddie cuddled up to me, a little slice of heaven on earth.

Waking early the next morning combined with the two bad nights had me exhausted and led to my falling asleep yesterday evening. Freddie has been wrecked since he came home yesterday morning but he’s home and we’re a family again.

Long may it last.




Sunday 4 December 2011

Christmas Rejects

Now this is heaven. Its raining out, its cold out, its getting dark out. All this and I’m under a blanket on the couch, the fire is blazing and Freddie is cuddled up to me, so much that I can hardly move. Ruby is on the other couch reading, cranky as only a teenage girl can be but if you don’t disturb the beast it will leave you alone. The dog is walked and in his kennel. We got caught in a hailstorm in the woods but that all seems so long ago now. Lisa is out meeting a friend for coffee. Before she left my darling wife brought me a cup of tea with a chunk of homemade porter cake. When I say chunk I mean a slice that would feed both Klitchsko brothers for a week. What a woman, I may tease her incessantly but I love her to bits.

After the walk in the woods this morning I collected Ruby from the bus. A friend’s Mum had taken the two plus one other friend to Cork for the weekend. A weekend of Christmas shopping, they headed off Friday morning giving them almost two full days in the real capital. They stayed in the Clarion hotel just in case they needed any extra comforts. Now exhausted after two days of shopping and room service she’ll only communicate with hand signals, tired dismissive ones at that. Christmas shopping for me was a trip with four or five friends to the city by train, lunch in BurgerLand on Patrick Street and trying to stretch what little money we had to buy presents for all the family. One year I stretched it by buying all my presents from Woolworths and came home with such tat that my sisters made my father bring it all back the next day. There was I proud out that I had money left over but the imitation brass ornaments and “Best Aunt in the World” mug went back to be replaced by soap on a rope, folded cotton hankies, patterned drying-up cloths. All still probably lying untouched at the bottom of wardrobes throughout the Great Island.  It took a while for me to get over the shock that my original presents weren’t good enough but whenever I hear Woolworths being mentioned I think of the poor rejects.

Freddie always misses his sister when she goes away. Even though they fight daily and he says at least once a day “I hate Ruby”, he really misses her on weekends such as this. Last night he sat up between his Mum and Dad watching The Fantastic Mr Fox which made him very happy. He’s a funny little chap; he’ll take against something for no reason only to decide months later that he loves it. The Fantastic Mr Fox is a perfect example. Lots of times I’ve tried to get him to watch it, I really wanted to see it myself, but no way would he budge. Then last weekend he spotted it whilst flicking through the movie channels and decided he loved it. The DVD was bought during the week and he’s watched it so often now it’s a wonder it hasn’t worn out. He’ll be the same with food, green Granny Smiths being his current obsession. After falling asleep on the couch in his mother’s arms, Freddie and I went to bed about eleven or so. Fred normally sleeps in with me these days as we have to watch out for nightime seizures. The little fellow can’t even escape the epilepsy when he’s asleep. The privilege I feel of having him wrapped around me in the bed is immense. Usually I’ll read for a while then whilst still sitting propped up on pillows the book will be put down, the light switched off and I’ll drift off to sleep ensconced is his arms. Bliss!

Dingle was rocking yesterday as the Other Voices music festival was in full swing. Other Voices, now in its tenth season, is a series of concerts put on in the local St James church over the first weekend of December. Only capable of seating 80 souls  St James has seen Amy Winehouse, Elbow, The National, Jarvis Cocker, Damien Rice, The Frames, Ray Davies, Snow Patrol among countless others perform over the last decade. It’s a great week in town in what is usually a quiet time of year. The dark streets are full of musos in their trendy clothes and designer glasses happy not to be disturbed as they go for a stroll or pint. The big trucks with the staging and lighting begin to arrive on the Tuesday and town only returns the normal about a week later. Unfortunately this may be the last year as the costs are becoming too high for the production company to cover. Let’s hope someone can see sense and help finance this increasingly popular event. If Tourism Ireland are awake it’s been shown live on The Guardian Website, covered by The New York Times and a video of Rufus Wainwright performing a coupe of years ago has reached 10million views on YouTube. You can’t buy coverage like that or come up with it at a marketing workshop!


Sunday 27 November 2011

Sunday with the Galvins

Just back from a trip to Dingle.  A trip to Minard actually, a townland about halfway between Lispole and Annascaul. This is a beautiful off the beaten track sort of place complete with its own beach and castle. So no time yet for the customary Sunday morning walk in Ballyseede woods with Muttley the dog not that I think Muttley minds too much as he’s stretched out in Winter sun. As soon as I have lunch he’ll be walked senseless.

My Sunday morning journey was to drop Ed and Pam Galvin to their home in Kilmurray which overlooks Minard Harbour. Most of the time they live near Brunswick in Maine but try to spend a few months of each year in the Kerry home they purchased a while back. Having already being here from March to May they are only spending a short three weeks this time round. Ed, I’ve known for three or so years now and we get on well. He gave me a present this morning of a recently published book, a collection of writings, poetry and prose. In it is an article by one Ed Galvin and the accompanying biography reads “Ed Galvin is an independent writer, geographer and transportation historian.” Quite a mouthful for the retired railway executive and makes perfect sense when you see the piece is about a trip to the Gravediggers Pub in Dublin! But I suppose that would involve geography and transport… They flew in this morning and I collected them at Tralee Bus station having arrived from Shannon on the early express service. A generous caring couple it was nice for me to do something for them for a change. The bleary eyed, exhausted couple were bundled into the car and we headed off to West Kerry. 

It really was a beautiful winter’s morning with the sun just rising over the mountains to the east as we left Tralee. Pam mentioned something that I’d never noticed before, that the Irish countryside looks very green in the winter-time. Probably, I reckon, due to the amount of fields and the contrast of the denuded trees with the green grass. They both know a lot about our current economic state but wanted to get an opinion from someone on the ground. Now I’m sure it’s the same for all of us, we are just sick and tired of the doom and gloom surrounding the country at the moment and talking about it doesn’t make it any better. Discussion with an independent viewpoint is different, cathartic even, but doesn’t make the feeling about our plight any better. Not that things are much better stateside, especially as political gridlock is stifling any recovery.  The more you think about these things the worse they become I believe. We changed subjects and the mood lightened. The roads were clear and it wasn’t long before the chat was over and I’d deposited the two weary travellers at their little home in the west. Leaving the two to get the house out of mothballs and fit for human habitation again I headed back to Tralee.

On the way home I put the radio on for company. Stupidly I listened to the Sunday morning topical discussion program which really got me down. Increases in indirect taxes, fuel, everything that can be taxed combined with cuts in anything that can be cut really isn’t Sunday morning fare. Having discussed the probabilities of the upcoming budget they moved on to the state of the health service. Relying on everyone having private insurance and under funding the public health service has been a cornerstone of Irish government health policy for a long time now. They spoke about how delays in diagnosis, and thence treatment, leaves Ireland as having the worst cancer recovery rate in the developed world. This is nothing new unfortunately. My mother died of breast cancer, two weeks after her 52nd birthday back in 1974. Surely it must have been possible even then with early diagnosis and scanning to have prolonged her life? How many more women have died needlessly since? It still takes up to four months to get a lot of certain types of scans done according to the cancer specialist on the show. It’s the same with all disciplines. Even in our own case of getting Freddie looked after opened my eyes to shortcomings in the system. If it wasn’t for the fact that one of my closest friends, the guy I sat next to from aged eight to when he repeated fifth year, is a neuro man and helped get advanced treatments done I don’t know where we’d be. The system is under fierce pressure, only held together by the nurses, and more cuts can only be disastrous. The real shame of the waste during the boom years was the lack of investment in essential public services. All those billions washing around the government coffers and our health service seems to be no better off than 1974.

On a brighter side I’ve since been for a walk with the dog in the beautiful woods. The sun shining through the tall bare trees was lovely as was watching the Muttler digging in the fallen leaves. Coming home to the family at peace, reading and watching TV was lovely too. Maybe not all is so bad in the world after all…….         

Sunday 20 November 2011

Barking Dogs and PET scans

Another Sunday and another walk in the woods. Eventually after weeks of learning Muttley the dog has realised that the woods don’t actually belong to him and he’s stopped barking at every dog we meet. In fairness he never actually got in a scrap with any of them but he did get up on a beautiful black lab once.  The poor pedigreed dog was very shocked by the experience. Not as shocked as his owner though. She stood there holding him by the lead going “oh, oh, oh” in a startled English accent.  Strangely enough we haven’t seen them since.

Another long week for our little household in Ballyseede. Not one involving our little Freddie being hospitalized thankfully but more developments in his case. Last week we went for a MRI in Cork University Hospital. The MRI was ordered on foot of the video telemetry which had shown that his epilepsy is starting in the frontal lobe of his young brain. The idea of the MRI was to see where the focal point was and if it made Freddie a candidate for surgery. Now most parents would not wish their son to be suitable for brain surgery and its inherent risks but we feel if it can give our boy a quality of life he hasn’t had in recent years it’s a risk worth taking. He can’t go on taking a cocktail of medicines and spending days on end in hospital. We wouldn’t mind if the Anti-Epileptic Drugs worked but mostly they tend to make him dopey whilst giving him little protection. The many trips to hospital and the fact we’re living here in Tralee is testament to their failure so far. So we headed down to CUH on the Wednesday of last week but not before Freddie had spent the Tuesday night in Tralee hospital. He’d gone in under the usual circumstances and Wednesday lunchtime I drove over and collected them. After a stop off at home for a change of clothes and a bite to eat we headed to CUH. The welcome back from the staff was nice but again we wish we weren’t so well known on the children’s wards of the southwest….

The next morning we were up early and prepped for the MRI. Freddie wasn’t allowed eat which is a torture for the little man. The ward was busy with kids coming and going for different day procedures. At about ten it was decided to sedate Fred as expecting an eight year old kid to lie still in a MRI machine for twenty minutes is a bit too much. Now Fred has a history of being difficult to sedate possibly because he’s had so many sedatives in his time. They went with Chloryl Hydroxide which had him asleep in about ten minutes. However there was a delay in getting the trolley down to bring him up and by the time they arrived he was waking a bit. The medical staff was surprised. Lisa and I weren’t. We were angry that the chance had been missed but decided to give it a try anyway. By the time we got to the MRI unit Freddie was awake and cranky. The radiographer suggested one of us go in with him and see if we could keep him still. Freddie pushed his mother away and reached for my hand. Why he rejects his mother who does everything for him and is always there for him is beyond me. So I had to strip myself of all metals, wedding ring, belt, coins and go in with him. The room itself frightened the living daylights out of me. Dark and no more than ten by ten feet with this tunnel machine in the centre lit up with a green light, it was like a sci-fi torture chamber. Freddie was lifted onto the narrow slide and his head rested on a half helmet type structure. All the time I was talking to him telling him how wonderful we all thought he was. They closed the other half of the helmet over him and screwed two wedges against the side of his head. He looked so calm and accepting as they slid him into the tunnel it broke my heart. If it was me I’d be freaking out. The technician gave me ear muffs and put a set on Freddie. They then turned off the lights and shut the door. All communication from the outside was by the intercom. I reached out and put my hand into the machine and held Freddie’s fingers when the process began. The beeping and cranking was loud and disturbing. Every now and again the technician’s voice could be heard telling us we were doing well. All I could tell Freddie was how wonderful he was and how proud we all were of him, over and over again. He lay perfectly still, didn’t move once, not once! It seemed like the longest twenty minute of my life looking into that tunnel and watching my boy doing what was asked of him but not knowing why. Even now nearly two weeks later I can’t believe he did it without question. When it was all done they wheeled us back out to Lisa waiting in the patients room.

The radiographer followed me and said “We got some perfect images, really perfect, he did excellently.”  He didn’t need to tell me that, I saw how excellent he was but I was delighted he got the photos we needed.

So this Friday we went for the appointment with Freddie’s neurologist to see what the MRI imaging produced. The previous ten days had been spent just waiting for this meeting, wishing it to come. As usual we had to wait about two hours before we got seen; a reminder to us that Freddie isn’t the only child with epilepsy. The neurologist’s registrar saw us first, updating the records. We spoke of the MRI and our hope of surgery. He looked on the computer behind him “Well the scan was all clear, nothing unusual” he said. Not the news we wanted and certainly not to be told to us in such a fashion. He quickly realised that he’d overstepped the mark and left the room. Lisa was crying I was raging. A few minutes later the neurologist came in and discussed the next steps. Another change in medicines, taking him off one completely and starting a new one, one more suitable for frontal lobe epilepsy. Let’s hope it works. More importantly she proposed a PET scan, which apparently is more likely to show up where the malformation in the frontal lobe is, the bit causing all the problems. If that is successful it may make Freddie a candidate for surgery.  My friend Brian was right; it really is only the beginning of a long, long road. The PET scan can only be done at the Blackrock clinic in Dublin and is dependent on finding an anaesthetist to come over from Crumlin Children’s hospital to put him under. They insist on this.  On the way home Brian rang to see how we got on. He told me that the HSE spent over a million euros buying a PET scanner for CUH nearly two years ago. Its being lying idle ever since because they won’t hire the staff to run it.

 WTF.


Sunday 13 November 2011

Charlie Ellis and the Fried Rice

Just back from a walk in Ballyseede Woods and cuddled up now with Freddie on the couch. One thing about this little fellow is that he likes his comforts, if you’re not careful you could find yourself snoozing on the couch all day as he is so cuddliable it'd very easy to do. Lisa and Paranormal Ruby have gone for a run in the woods now, poor Muttley the dog will be a wreck this evening. There was a radio program yesterday about paranormal activity in Ballyseede Woods and how groups meet  regularly to try capture it. We decided not to tell Ruby this as she’d never set a foot in there again. Indeed it’s only in the last few years that I’ve gotten over my fear of the woods and what you might find in there…..

This must have happened when I was about ten or so and in the Cub Scouts. We used to go on camping weekends to Fota Island. For weeks we’d be looking forward to the trip then the Friday evening would eventually come along, we’d pack all our stuff onto the Cobh Cork train and get off two stops later. Yes it was a mighty journey. This was before UCC bought the island and we had to get permission from Lady Bell to camp on her grounds. The island was also still in its original state with dark swamps and even darker woods a brilliant playground for us kids. Well a certain Charlie Ellis used to take us on supposedly guided walks in the woods but in reality he used to scare the living daylights out of us. He’d already gone out and placed red rags in trees and then showed them to us as ‘signs of danger’. Then was the story of the scout disappearing in the swamp. There was a group of cub scouts from Cork which used to share the camp grounds with us. One of their older boys was a tall sallow skinned popular lad. We all knew of him. Well that one year he wasn’t there, probably grew too old, so Charlie told us he’d gone into the swamp one evening and never camp back. I still remember the shiver of fear almost paralyzing me. As we went deeper into the woods I was closing my eyes in case I saw him, bumping into my friends as we walked. At the far edge of the woods there was a Pillbox built during “The Emergency” to guard Belvelly Bridge, the only roadway onto the  Great Island on which Cobh stands. A Pillbox is a large concrete underground gun chamber with an open slit at the front for the machine guns. My father used to do duty in the Fota one. Charlie, having told us stories of ghosts and people disappearing led us down the underground entrance to the Pillbox and into the main chamber. Then as we were almost all in, I with my eyes closed hanging onto whoever was nearest, Charlie’s friend Dave Maloney who’d been hiding in an ante-room jumped out screaming. Even now nearly thirty-five years later I can still remember almost passing out with the fright, scrambling to get up the steps and out. If they did that today there’d be parents ranting and raving calling for blood. It might have scarred me for life but despite the frights I loved it, can still remember it vividly, a great part of growing up, thank you Charlie and Dave!

There is a family from Mauritius living in a flat above my shop. They have been around for about four years now, first the father with his son and then this year, I think, they were joined by the mother. A quiet, unobtrusive family, the boy is in third year at school and the parents work in local hotels. Recently they have been told that their visa to stay in the country won’t be renewed and they have to leave on December 5th. The father comes in to say hello every morning and has been telling me of their troubles. As the visa has been revoked they can no longer work but all he’s really worried about is his son’s education. He and his wife have only primary school education as secondary is unavailable to them in Mauritius. Since he’s been here and working his son has excelled at school and he sees the benefit of a good education. Who wouldn’t want a better life for their children? Every evening I’d see the father cycling off to work not long after the mother had returned from her job. Now neither of them can work so they have little or no money and are readying themselves for the trip home. The boy takes time off school to go with his father to immigration appeals and translate. He must be one of the few people in the world who can speak English, Irish and Creole! A skill set to be valued. During one of our conversations recently the father and I were talking about food and how I liked spicy meals. That evening as I left he came out with a jar of curried cabbage and a load of chapattis rolled up in tin foil. “For you, for you” he said handing them to me. The gesture really touched me and they gave me so much I didn’t have to make dinner that evening. Whatever he did the curried cabbage was gorgeous despite what I thought it might be.

Earlier this week a fisherman came in and gave me a present of a large Pollock, as I’d done something for him before. Remembering that the family upstairs liked fish I put it in their fridge and told him later. He was really taken aback. That evening he came into me…..

“What time you go home?” he asked in his soft, gentle voice, “Five.” I answered. “Come see me before you go,” he smiled in reply.

At five as I walked into the kitchen the smell of cooking was gorgeous. The man, I don’t know his name, and his wife were busily packing up a big old ice cream tub with fried rice and vegetables for me. As she gave it to me he handed me a little tin....

 “Put a little of this on the plate then put the rice over it, make it nice.”

 As I left the building there were tears in my eyes at how generous they were to me.

The amount of food they gave my family fed Ruby and me that evening and gave me a lunch for the next day. In the little tin was lovely garlic with spice oil, very strong. The thoughtfulness of this man with nothing feeding my family has really touched me. His kindness will be missed when they leave.

Sunday 6 November 2011

Paranormal Activity

Sunday morning in Ballyseede and the sun is shining. It really is a beautiful November’s morning, the first frost of the winter was on the grass as we got up but the early Sun burnt it off quickly enough. Ruby and Lisa have gone for a run in Ballyseede Woods with Muttley the dog. Poor fellow doesn’t know what’s hit him the last few weeks. There he was living the life of Reilly back in Ballyristin, inside all day if he wanted, going out only when the urge took him. Now he’s living outside permanently, in a nice house mind you, but no more evenings in front of the fire or being indulged with snoozes on the couch. The snoozes on the couch weren’t allowed by me but many was the time I came home to find Lisa and the kids in front of the fire with Muttley stretched out like Lord Muck on the couch. Well this winter it’s a whole new world for the Muttler and he seems to be taking to it in fairness to him. 

It’s the end of another week of activity in our household. After three weeks seizure free poor little Fred had one as he fell asleep wednesday evening. Nothing major but when he had a second one twenty minutes later we headed for the hospital. The benefit of living here paid off again as we were settled in the ward in under twenty minutes. The worst thing for Freddie is that he has to have a line put in these days, so after going to sleep at home he woke up surrounded by four women poking and prodding at him. The tears and shouts of anguish as they stuck the needle in his arm echoed around the children’s ward. A doctor in a Spanish hospital called Fred “el Toro” as he fought him when putting in a needle a few years back and this always comes back to me when I’m trying to calm the poor boy. After they were settled Ruby and I went home to try and sleep leaving Lisa and Freddie to be looked after by the wonderful staff of Kerry General Hospital. 

Back home I had to deal with the problem of Ruby and Paranormal Activity. It’s not that she’s involved in any just that she watched the two movies of the same name over Halloween, in the daytime. Come night time and she’s petrified of the dark, of going upstairs, of going to the kitchen, of sleeping alone....I warned her but of course she knew better. So that night we had to sleep in the room with two twin beds, both pushed as far apart as possible by Ruby. There was a time when she’d cuddle me all night, now she barely acknowledges me in public and I have to laugh when I see the room when I go to bed. The next morning I’m up at 5.30 to get to the hospital, Ruby gets up and is straight into the TV room with all the lights on. Freddie has had a peaceful night and as soon as I’m in Lisa goes home for a wash and a change of clothes. When she comes back I head off to work and later on the consultant sends Lisa and Freddie home. Another benefit of living nearby, no more long unnecessary hospital stays.

Later on at about 3PM Lisa calls. Freddie has had a bad long seizure and she’s had to call an ambulance. So much for the end of the drama. Afterwards she tells me it was like something straight off a TV program. The ambulance had arrived within five minutes all sirens and flashing lights. Taking no chances the driver had sped back to the hospital, weaving in and out of traffic, through red lights, over roundabouts not around them, a real white knuckle ride. The unconscious Freddie in the back missing all the excitement. Having tore back over the Connor Pass I rushed from the car park up to the children’s ward only to be told that they were still in A&E. My legs were weak as I ran back down wondering what had happened, why he hadn’t been admitted to the ward an hour previously.  The nurse brought me to the cubicle, he was fast asleep in his mother’s arms, the A&E staff had been too busy to admit him to the ward. It drives me mad to hear people giving out about the public service when you see the frontline staff working so hard 24 hours a day. Yes parts of it are run inefficiently but it seems where we need a public service most, hospitals, schools, social care, it’s grossly under-funded. Soon enough we were brought to the ward and our little man was sitting up eating toast for tea. Not before he’d had more prodding and poking from all the women though! 

At about 9.00pm I was sent home so as to leave the two get a nights rest. Paranormal Ruby was off in Ballyferriter on a sleepover so I only had myself for company. When these times are happening I can’t eat and if I do it’s usually a forced feed of junk food. Not having any comfort food or appetite I lay out on the sofa watching TV and fearing the phone call from the hospital. By midnight I was in bed finishing my book waiting for my eyes to close from exhaustion. About 1.30am I fell asleep and woke with a jolt at 6am. Up, washed and in the car by 6.30 a text came through as I drove through the roundabout next to the hospital which I opened when I got to car park. It was from Lisa “He got through the night fine, no need to rush in”. “The little fecker” I said out loud in the empty car park, my eyes full of tears. What a relief! Up in the ward the nurses greeted me with smiles when I walked in, they know the anguish of these nights, they feel it too. “A peaceful night” one of them said to me, a relieved smile on her face. After breakfast we were sent home and it wasn’t long before Fred and his mother were fighting over something or other. 

Normal activity had returned.

Sunday 30 October 2011

Teenage Kicks


Ruby comes into my shop every evening, usually about 4pm. It’s a time of the day I love. My heart jumps to see my darling daughter walking in the door after her day at school. This is due to not having seen her since early morning plus it means that going home time isn’t too far away. Thursday evening wasn’t any different; in she struggled with her gear and school bags, dropped them in the corner and asked me for money for food. It’s a routine we’ve developed in the short time that the two of us have spent on our own in Dingle. She goes off to get a sandwich and for me she gets a bottle of water. Just a simple little thing but a father daughter thing that will stay with me for life. No questions asked just done every day at about 4pm. After she comes back she takes my seat to check her Facebook page and download some music. It’s a time I take to wander out for some fresh air before anyone comes in. Not many people of my age group got to spend this sort of time with their Dads so as a parent I value it very much. Shortly after 5pm we head home and those forty minutes or so is another precious part of our day that I love.

In the mornings neither of us feels like talking much on the journey out to Dingle. It’s just an early morning thing and the peace of the car helps me prepare for the day ahead. Now that Ruby sorted our late leaving the house problem I’m not in such a mad rush to get her to school on time. No more tearing down the Connor Pass at 8.55AM hoping to get her there before the bell goes or stupid overtaking on the Castlegregory road to try save a few minutes. No it’s so peaceful these last ten days that Lyric FM should be playing as we drive. But it isn’t, its Spin SouthWest!  By the evening  we’re usually more chatty, tired after our days but in the mood for talking nonetheless. Sure the radio is on, Radio 1 at my insistence, but Ruby will talk about school, ask me about things that I may or may not know the answer to or just chit-chat about this, that and the other. Thursday evening was no different and when our conversation went into a lull I began to think about Friday evening. All the last week the talk has been of Friday evening. Yes the night of Ruby’s first disco as a teenager, her first proper disco. The excitement had been building, where she was going beforehand to get ready, who was going, what she was going to wear, where she was staying the night.  She had it all arranged, she didn’t need her Dad much, in fact I knew feck-all. All the youth clubs on the peninsula were going, everyone aged 13 to 15 or so was going to be there. Every spotty teenage boy...it wasn’t so much that I wanted to protect my darling daughter from those horny teenagers cos I can’t plus it’s all part of growing up. No it was the idea that I’m no longer the main man in her life or at least my days as such are numbered. Someone else will get to hold her close, occupy her mind, tell her things from a male perspective and I’ll be relegated to the “just the Dad” position . It’s the beginning of that part of her life and of course I know I can’t always be involved and that’s just something I’ll have to get over. To be honest I think it’s great that she’s becoming this independent wonderful person but sometimes I miss that curly headed baby whose eyes lit up every time she saw me. 

Another thing that came to mind was my first disco....it was the same time of year and I was about the same age as Ruby is now. My friend Ken and I cycled into Cobh to the disco at Mount Crozier tennis club. If I remember correctly it was on from 8pm to midnight and I was delighted that I was allowed go. The surprise of hearing the music blasting from the speakers that I’d only ever heard on the radio at home really blew me away. That and the girls.  The girls from school and the other schools in town too all out dressed up and dancing. As this was my first time I didn’t know what to do but if I remember correctly it wasn’t long before I was showing the dance floor what I had. Then came the slow set. Now that was something I definitely knew nothing about, still don’t today! Ken went off dancing with a girl I didn’t know and after the first dance came back and said I should ask her friend out. I looked over to see who her friend was and it was only one of the best looking girls in our class. All curly long blonde hair, tall and beautiful compared to my little thirteen year old self. Though she was from town I’d even known of her for a year or so before we went to secondary school together, her beauty went before her! Not knowing any better I asked her to dance and she said yes. It had taken me so long to ask her we only had one song before the set was over. The song was that John Denver one which had been the theme song of a popular TV series at the time, can’t remember it now but it went “deep inside the valley ...” Strange that I can’t remember it now as I remember singing all the words into the poor girls ear that night! Oh cringe. After the disco the girls got a lift home from one of the Dads, Ken and I got on our bikes and cycled home.  The next morning I woke up a changed man, I’d danced with a girl and not just any girl either. My shyness convinced me that she’d only danced with me cos Ken was dancing with her friend and as a result I was scared stiff to talk with her when school began again after Halloween. In fact I can’t remember ever talking to her again. Did Ruby have the same experience Friday night? Did some worthy boy have the same experience as me? Do they still have slow sets?

As an epilogue to my disco tale I have this to tell.  A few years back I spent a weekend in Dublin with some friends from school. As it turned out my friend’s wife was working with my slow dancing partner from all those years back and she mentioned to her on the Monday that they’d spent the weekend with me. It was reported back that she’d always really liked me at school and wondered why I’d never asked her out after that night or at least would have liked to have gone out with me if asked.

Damn you teenage shyness!



Sunday 23 October 2011

The Wisdom of Taxi Drivers


Well Ruby in the infinite wisdom of the teenager she is gave me some advice this week.  Having said that it was more of an order really, she doesn’t suggest things to me she just tells me. A bit like her Mother really and she’s knocked some corners off me over the years. Anyway we’d been late a lot in the mornings recently so Ruby TOLD to get up at 7am, have my shower, then my breakfast and we’d be out the door by 8am. I’d been doing it the other way, talking with her Mother over breakfast, resulting in us not getting out the door till about 8.15. So we tried it this week and what do you know but we were early for school every morning.   The thing that gets me though is that when I get up at 7am Ruby comes down and gets into the warmth of my bed for twenty minutes! Plus she’s still in the car before me. Freddie and I are wandering around for the first ten minutes just trying to figure out what day of the week it is whilst she snuggles up under the duvet. Reminds me of the piece of wisdom I got from a Cork taxi driver once. He was driving me to a wedding when we got talking about each other’s kids.

“Do you know the difference between young girls and young boys?” he asked, looking at me in the rear view mirror.

“Ah no” I answered laughing.

“Well” he said, “boys get out of bed rubbing the eyes wondering what to do. Girls? Girls get out of bed with an agenda!”

Never a truer word did I hear from a taxi driver.

Certainly beats what I got from a Dublin taxi driver once. He’d picked me up from a famous flat on Botanic Road the owner of which had picked me up from the Airport the night before. Having told the taxi driver that I’d flown in from London he asked.....

“Did you go down to the hoors in Kings Cross?”

I laughed and told him I hadn’t, which was true.

“Ah the next time you’re over you should pay them a visit, I’ve had great fun with some of those ones down the years.”

That’s one piece of advice from taxi driver which I haven’t followed up on.

Freddie and I have spent the day inside. The weather has been crap all day, rain, rain and more rain. Not that I mind too much, I’m away all week during the day so getting the chance to spend all this time with the little man is great. Lisa went off shopping for a couple of hours, this living in Tralee lark could be an expensive one. When she came back she walked in with only one bag, unusual I thought, normally she’s laid down with bags. All was revealed later after she’d collected Ruby. In she walked this time with four more bags not expecting me to be in the kitchen, I didn’t say anything , there was nothing to be said. .....Oh how I love her!

Sunday 16 October 2011

Home again

Well its Sunday afternoon in Ballyseede and its the end of a long week for us. Ruby is behind me on a the kitchen couch watching some movie with Katherine Heigel which I would have been embarrassed to watch in front of my father! Freddie is inside on the other couch watching a Star Wars The Clone Wars DVD. Having never seen a Star Wars movie I can easily say this DVD makes no sense to me.

Yes its been a long week. Freddie reached day 34 seizure free on Monday, a new record since things went south two years ago. He keeled over on Monday evening however and all four of us were in A&E at Tralee General by 10.30pm. The move in here has paid off, we didn't want to be tested but we were and everything went to plan. Ruby and I went home at about 11.15 when Freddie and Lisa were admitted to the ward. The little man was put through the ringer overnight though and when I went back at 6.30am he was doped to the nines. But he made it through without the drama of previous visits which was a comfort. Boy was he cranky and he spent the day fighting with his mother. After work I came back and poor Lisa nearly ran out the door when she saw me coming to take over. Freddie doesn't normally fight with me but he did Tuesday evening, poor fellow those emergency AEDs are really mood altering. The consultant sent him home Wednesday morning as there was no point staying when we lived so close. The gurrier was still very cranky though and when Lisa rang at 11am to say they could go home, I asked when did she want me to collect them. "NOW!" was the order and I jumped. It was great to have them home and so soon too was a major bonus. Unfortunately he had another small one Wednesday evening as he fell asleep. Depressing. However we saw it as a chance to get the video telemetry done. This is a procedure where you are wired 24/7 to an EEG machine with a video camera on you also. The idea is to catch a sezuire when one occurs and try find where it begins in the brain which can really help in solving the problem. Fred had been wired before but after seven days and no seizure we'd given up. As he was in a cluster we hoped it might be the ideal time. This procedure can only be done in CUH so I called the reg on duty on the childrens ward. A bed was available but he had nothing to do with the EEG department and "the boss man was off". After a late night call to my great friend Brian, "the boss man", who was at home, we sat around waiting to see if it could be arranged. Ten minutes later he called back, all sorted and we were expected anytime the next day. You can't beat the Cork Mafia boy!

Well we drove like the clappers the next morning and Freddie was sitting up in his bed by lunchtime. The welcome we got there was great but we're on first name terms with far too many medical people for my liking. The dinner ladies came to say hello and asked if he wanted the usual for dinner! At about four I left and soon afterwards the legendary Brendan arrived to wire Freddie up. He has to use superglue to keep the sensors on and poor Freddies hair is full of glue for days afterwards. The drive back to Dingle, I had to collect Ruby, is a hard one when I've left Freddie and Lisa behind in the Real Capital. Back home at about nine that night the text came through from Lisa, "he performed". Ironically the thing I hate the most was for once welcomed, maybe now we'll find a road out of this, I hoped. Well the little soldier performed nine times that night before they intervened with the AED to stop the cluster. For once things went our way. Brian rang in the morning to see how he'd done. Though upset that Freddie had had to go through it he was hopeful we'd get readings. Brendan arrived midmorning, took him off the machine and wheeled it away for downloading. But boy was Freddie cranky that day. At one stage I got a call.. "Dad can you come collect me and leave Mummy behind?" There's appreciation for you! Poor Lisa who'd been to hell and back with him was been dispensed with at the first opportunity. Mid-afternoon and Lisa on the way back from the bathroom is met by Freddie's neurologist. She's smiling. After a quick look at the first couple of readings it looked like they could see where his seizures were beginning. What a relief. When you can diagnose something its easier to find a cure, at least thats the logic as far as I'm concerned! Brian rang a couple of minutes later. Though at home he'd spoken with Brendan and confirmed what Olivia had said to Lisa. He's naturally very,very cautious at this stage but at least we have something to go on. Its the beginning of a long, long road. Deep MRI's, more telemetry, surgical conferences its all ahead of us but we
now have the audacity of hope.....

Lisa rang first thing on Saturday morning, they could come home. I was in Cork by eleven and home again by 1.30.  On the way back Ruby rang...she'd hurt her finger playing football. She's on the Kerry Ladies development squad and had been on a skills session in Killorglin. Our great friend Fiona collected her back in Dingle and took her to the doctor. As I feared she had to go to A&E. We weren't back half an hour in Tralee when Lisa was off down the hospital again. No speedy treatment when it isn't an emergency and the two weren't home again till 6.30pm. Home again and we were a family together once more.

Home again.... its a phrase I've been using a lot lately but it never loses it's lustre I can tell you!