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.
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.
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 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. Conor Pass
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
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 New York ” and Freddie cuddled up to me, a little slice of heaven on earth. Lake Woebegone
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.
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
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 Cork 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 . 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. Great Island
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
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! Ireland