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 52^nd 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…….         

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.

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 5^th. 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.

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.