Its Sunday again, another week rolled over, Ireland got another thrashing from the All Blacks, the euro is still going down the tubes, Engerland is still at Euro2012 but most of all Freddie and me are cuddled up on the couch. A traditional Sunday morning for us, him and I relaxing on our one morning of the week together whilst Lisa tidies around us. The great thing is that she does it so peacefully and with such grace that you’d hardly notice the maelstrom that is going on. Things are being thrown out, toys moved upstairs, clothes washed, folded and put away. Floors are hovered, bathrooms cleaned, freshly washed clothes hung out and all to the music of Lyric FM playing in the background. What a peaceful idyll I’m painting here and one that will surely be broken by a misplaced word or someone saying boo to Ruby. She’s ‘not in the mood’ this weekend and has retreated to her bedroom to watch a movie online, do make-up, listen to her music, only to be seen again probably when hunger drags her downstairs.
We or should I say, Lisa is still sorting out stuff moved over from our old house. Freddie noticed a box of old toys before they were whisked upstairs and is happily going through them one by one. If he’d never seen the box of toys he would never have thought of them again but now that he has, they’re all over the couch, bits of old dinosaur, broken Ben10s, a few cars but all keeping him occupied for the time being. At the same time, he’s watching Ultraman…a Japanese TV series from the ‘90s I downloaded by chance. He loves the action, Ultraman fighting monsters from space with the help of a crack team of highly trained twentysomethings. Right now Eleking is laying waste to another city and the team is getting ready, all in subtitled Japanese. He loves it but as I’ve only found series one I’m becoming a bit of an expert on Ultraman and his monster enemies. There must be a second series out there; it’s not bad, better than a lot of the animated stuff he used to watch when we had Sky.
It’s been a normal enough week for us. After I wrote my piece last week, Freddie asked if he could go to sleep for a while. He cuddled up next to me on the couch and I read my magazine, waiting for something to happen, he doesn’t usually sleep in the afternoon unless in a cycle of seizure activity. About forty minutes into his sleep, he went into a seizure. Not a big one but still it lasted about a minute or so with the full upper body shaking and arms going as if he’s trying to fight it off. In neurology, it’s known as the fencing movement, where, at the beginning of a seizure, his arm moves across his body as if in an attempt to fight off an attack. In Freddie’s case, his right arm moves up and across to fend off from the left, indicating that his seizures begin in the left of his frontal lobe. Sometimes if a seizure doesn’t break through his right arm will still move up to the left but back down again when his medicine stops the attack developing. All classic fencing movement as described to me one day by my close friend Brian McNamara, before he moved seamlessly into talking about cricket or the current political situation or both. As kids we used to spend hours talking on the phone before agreeing to meet later and talk some more. As befitted those times our two homes only had a phone because our father’s jobs meant they needed to have one. Different from today when everyone has a phone but nobody even wants one at home and kids now only text, never talk.
After his seizure, Lisa gave him a shot of Diazepam and he settled into a longer sleep. Fred slept for a couple of hours, woke up hungry and after a decent feed, watched a movie before going up to bed with me. Lisa woke him before 6.30 the next morning to try avoiding the early morning follow on seizure. It worked and about 8am, he came back up to wake me for work. Seeing him so alert the next day, not having to visit them in the hospital and having him wrecked from a night of seizing is such a relief for us both. The Lorazepam has been a lifesaver for him, but still it’s such a horrible drug that every time we don’t have to go to the hospital to have it administered is a big, big, bonus. It stops the seizures but wrecks our little man…makes him cranky for days, makes him sleepy and totally disorientated for at least a week afterwards. The current seizures are bad enough on him but at least he’s a normal little boy the next day, for the moment anyway. Epilepsy is such an unpredictable condition that you never know what’s around the corner, how it’s going to turn on you next.
On Friday, Lisa was taking Ruby to Dingle; Ruby had football training and was going to a friend’s house first. Not far from Camp, Freddie began to feel weak, sleepy and his twitches were increasing. Operation Drop Ruby was aborted and Lisa turned round to try make it back before he slipped into a seizure. Thankfully, they made it back before anything developed. Lisa settled Freddie into a bed on the couch and Ruby headed off for the bus. After a few minutes he had a five-second tremor, the fencing movement began but didn’t need to complete as the medicine held. About fifty minutes later the same happened, again nothing beyond five seconds or so. As a preventative Lisa gave him a shot of the diazepam and it seemed to work. Freddie slept for a couple of hours, incident free and woke in time for his dinner. Not one to miss a meal is our Fred, when he’s off his food we know something is definitely up. Ruby called me from the bus-stop when she arrived in town. She had to be driven all over West Kerry, Dingle to Baile Eanaigh to collect Hannah then to Allies house in Kilmakedar before I could go back to work again. At 7pm I picked Hannah and my darling daughter up from training at Lispole. The three of us headed for home, the girls chatting, giggling and even involving me a bit.
It was gone 8pm by the time Blennerville Windmill was in view, getting late, so we decided on a Chinese takeaway for dinner. Eventually, after another long day, we came through the front door about 8.45pm. Freddie was delighted to see Hannah coming for the night, he was doubly excited by the idea of white crisps for a bedtime snack. The drama of the afternoon was behind us and Lisa’s preventative strike worked. A bit of a break for a while…celebrated with MSG, white crisps and red wine.
Last Monday morning when Freddie came to wake me, we stayed a bit in bed cuddling and playing I-spy. After a couple of rounds, Freddie said:
“I spy with my little eye, something beginning with C”
After exhausting all the C words in the room, I gave up. Fred pointed to our walk in wardrobe, which was backlit by the light being on in the bathroom behind it.
“See-in-the-dark” he said, “silly old Daddy!”
His wonderful, descriptive way of looking at the world again...lets hope it never changes.
Sunday morning in Ballyard, what a line to write, one I’ve been waiting long to do so and so far it’s been worth the wait. Comfortable, cosy and a lovely family home, what more could a man my age ask for on Father’s Day? Thankfully my family don’t take such days seriously and anyway Sunday is always father’s day in our house, its my one day at home, the day I try make up for the other six. Nothing special but I get time to write, cook, drink my coffee, read, arse around, walk the Muttler, be with my beautiful wife and watch football. Freddie loves having me around, he calls Sundays ‘family day’…Ruby is happy to know I’m around for breakfasts, snacks and hot chocolates, the things a Daddy does for his darling teenage daughter. This weekend she has Hannah around so much time is being spent in her bedroom, chatting, laughing and no doubt discussing boys. It’s now gone noon and no sign of them but I am awaiting the text asking for brunch.
Even though it’s a new house there was nothing new in the week we just put down. Tuesday evening I was coming over theConnorPasswhen I missed a call from Lisa. Pulling into a gateway to call her back the usual feeling of dread was in my stomach and when Lisa answered, I could tell from the tone of her voice that not all was well.
“Sorry pet, just telling you we need milk”
Not fooling me and with me getting annoyed…
“What’s wrong, what’s happened?” I snapped
“Don’t you get cross with me!” I was told in a no-way uncertain of voice, the voice of someone worried and not in any mood for my short-temperedness.
Apparently, Fred was showing signs of seizure activity or should I say pre-seizure. For once, he was able to tell Lisa what was happening. He was feeling dizzy, disorientated; his eyes were sore and flicking. The uncontrolled jerks were very pronounced and all he wanted to do was cuddle up to his Mum. It was very upsetting for him, he knew his brain was about to misfire and there was nothing he could do about it, just sit and wait it out. He doesn’t want this, the weekly seizures and all that comes with fecking epilepsy. We hung up and I headed off down the pass, driving back to Tralee with that heavy, familiar feeling, at the same time trying to reassure myself all would be ok.
With the milk in my hand, I rushed in the door at home to see Freddie looking up at me from his bowl of rice. The TV was on and he was watching Cars, one of his favourite feel good movies. Even though the scene was peaceful, the news wasn’t. He’d had the seizure, the usual full body shaking one-minute type that has become the normal. Also normal in this new cycle is the thirty minute sleep after which he wakes up and is quickly back to being a fully functioning little man. You can tell from his eyes though, they look doped, glassy and a bit out of focus, the eyes of someone who has just been through the mill. Even though this epilepsy does its best to knock him my boy, my little man, my hero always fights back and comes out smiling. Fred could be thinking of epilepsy when quoting Muhammad Ali...”If you even dream of beating me you’d better wake up and apologize.”
After dinner, we put down the usual after-seizure evening. Ruby was off in Ballyferriter for the night so it was just the three of us, reading, relaxing, and watching the Euros, the usual evening of trying not to think of what's going on. We went off to bed about 11 o’clock and slept well till 6.32am exactly. The same time each week, another normal part of this new cycle. Between 6.30 and 6.35am the morning after an evening seizure, he’ll have another one. For once I was asleep and I hate been woken by the sound of a seizure. The involuntary moaning, the body shaking, all horrible to me. I held him in my arms and called Lisa. She was down in a flash and we both looked after him in the bed. The shot of diazepam was given as a precaution we took him downstairs to make him comfortable for the day. Again, he slept for a while and woke in time for breakfast, a plate of rashers and omelette was demolished in no time, appetite isn’t affected. About 9am I headed off to work, has to be done and after much kisses I headed out the door. At the door I looked back, Freddie cuddled up to his Mum under the blanket, he watching a movie, Lisa reading her kindle. Normal service had been resumed.
Yesterday Lisa rang about 1 O’clock. They’d been making banana bread in the kitchen when Freddie had had another seizure. Only four days after his last one and in the middle of the day. Not usual for one at such a time and four days is the shortest time-gap for a while now. However, he his coming off the Frisium, Lisa cut it again this week and we have been warned that it’s a very difficult medicine to be weaned from. So extra seizures aren’t out of the norm for the moment. These AEDs really get into the Central Nervous System and getting them out again ain’t easy.
Being stuck in Dingle when all this is going on back home in Tralee isn’t nice but I had to hang on for Hannah. She was coming with me and it wouldn’t be fair on Ruby if she couldn’t because epilepsy decided to upset the weekend. Besides that, I’m very fond of the same Hannah and love our little trips over the mountain back to Tralee. There was shopping to be done and I occupied myself stocking up for the weekend. The shop was closed, I wasn’t in the mood for dealing with people and it was quiet anyway in Dingle. Meat, cheese, soap, beer, bread were all got from different shops but I kept my veg shopping till last. If anyone is good for a chat, it’s Sean in Kingdom Fresh and we had great fun discussing the ways of the world before I had to make my excuses and rush off for Hannah.
As always pretty little Hannah lifted my spirits and we had great fun trying to put together the various bizarre plots of Desperate Housewives before we got on to ER. Like an old sage, I was able to tell who was who in her newfound favourite programme and the look of disbelief in her eyes when I told her Mark Greene died will stay with me forever. Before I knew it, we were home and that horrible feeling had been kept back for the forty minutes or so.
Freddie was sitting up, he’d had his snooze and was now having lunch. He was delighted to see Hannah as always and couldn’t wait to show her around his new home. After a while, the two girls went off to Ruby’s bedroom, which is where this piece began…
This morning Freddie didn’t have the morning seizure for some reason or other. He did however wake at six-thirty and ever since he’s been up and about. Hannah has been dragged into playing games, now he’s cuddled up to me, a bowl of spaghetti bolognaise has been finished off and he’s looking for more….
My Freddie, my hero…
Finally, after 5 weeks of waiting, we’ve left Crystal Fountain and taken over the house in Ballyard. For the non-Tralee people that’s Ballyard with the ‘ly’ in the centre silent and the second ‘a’ elongated, the posher you are, the longer the ‘a’. Last night, Saturday, was our first night and it felt like a piece of settled heaven now that we’re actually here. Even though it’s been less than 24 hours, as I write it feels like we’ve been here forever. The house is comfortable, warm, new and just about right. When I say taken over that’s exactly what I mean, Lisa has put her mark on the place making it our home, if you walked in yesterday and being none the wiser, you’d imagine we’d been here for months. Mind you, Ruby wasn’t far behind marking her spot, making the best bedroom in the house her own. Muttley is back too, 5 weeks in a kennels ain’t cheap and the kennel’s owner can now go for 5 weeks in theCaribbean. This morning Muttley and I went for a walk, a lovely one through the leafy lanes of Ballyard up to Blennerville and back along the canal. Felt even a bit more settled when out with the Muttler and Crystal Fountain is now but a distant memory.
This was my first week driving back and forth to Dingle without Ruby. Even though we don’t talk too much during the journey, I missed her a lot. No grumpy child sitting deep in her seat in the morning, listening to her music, no beautiful daughter coming in from school looking for snack money and then so tired that she sleeps part of the way home, still listening to her music but with some chat occasionally. The result of all this was too much time on my own and no hitchhikers to pick up! The tourist season is here so maybe that will change.
Outside of the move yesterday, it’s been a normal enough week for us. Freddie had a seizure Tuesday evening just after his dinner. Not a big one, just the now usual minute or so of full seizure which knocks him out completely. As Lisa and I moved him to the couch, he woke slightly but went back into a sleep as soon as he was comfortable. There was a smile on his face, feelings of elation are a common side-effect of frontal lobe epilepsy, but I like to think it was because Mummy and Daddy were fussing over him. We gave him the usual shot of Diazepam to hopefully prevent a cluster and he slept for an hour or so. He woke about 8pm and watched a DVD, had a snack of cheeses and crackers before settling down for the night about ten. This is all getting to be so routine now, every six days he’ll have a seizure, usually in the early evening, sleep, wake for a couple of hours and then sleep again. Apparently, this is a sign that the Tegretol is working, that he’s not clustering and we’re not rushing off to hospital with him seizing in the back of the car. Its all a major improvement in a way. Lisa is still weaning him off medicines, he’s down to three now and the Frisium should be gone in about 7 weeks, leaving the Keppra next to go. After that, the Tegretol will be on its own and Vimpat will be introduced to help. In between, we’ll have had the PET scan and the surgery route should be clearer.
Another feature of the current seizure cycle is that he’ll have a small one the next morning, almost bang-on 6.30am. This happened Wednesday morning at 6.32 and after he got up he had another about 7.30am. The two were tiny five second ones, looking like a major one was about to develop but didn’t and he carried on as normal. The same pattern Thursday morning, almost exactly to the minute. Epilepsy is a bizarre condition, no wonder so little is known about it, it seems to have a mind of its own, it could be a different cycle this week.
When we were moving last night, Lisa realised that we were out of Tegretol. Freddie had had his evening dose but there was none for today. As we saw recently, when he was sick, if he misses a dose of Tegretol it can have serious consequences for cluster control…Being in Tralee we’d no local pharmacy to call after hours, Walsh’s Pharmacy on Green Street Dingle have been wonderful to us down the years. So I called the hospital and eventually got through to the Cashel Ward. They understood completely, took my number and about twenty minutes later I got the call.
”We have what you need, just come to the ward” Nurse Katherine said.
“Thank you so much” I answered and Katherine laughed on hearing the relief in my voice. It really was a relief though.
The chinese I’d ordered could wait, I headed straight over. For once I wasn’t going to KGH with trepidation and up on the ward three welcoming faces were waiting for me. Nurse Marie, who’s been through so much with us, was there and admitted her heart had sunk when she heard I was on the phone but rose again when she heard why. We chatted for a while before a full box of meds was produced and I headed off home. As always I left the ward with tears in my eyes, they are so understanding and caring for my little Fred I just can’t help it.
Down in the lobby I met Dr Leahy, Fred’s paediatrician who recently retired, but doesn’t seem to have actually hung up his stethoscope... Old school to the bone, dedicated to his job of 30 years, he was in checking mail and reading cases of children he was still concerned about. He looked worried to see me but happy to hear why I was in at 9pm on a Saturday night. We chatted for a while, I gave him an update on Freddie and he gave me some relevant advice on surgery etc. As I left he told me in no uncertain terms that Lisa was to ring him anytime for a chat or if we needed him to call someone on Freddie’s behalf, anything he could do, he would. Again tears in my eyes going out the front door.
After picking up the chinese takeaway, I headed home. We settled into our first night in Ballyard full of MSG and just feeling happy to be living somewhere we can call home again. Fred was stuffed with fried rice and white crisps.
White crisps, that’s what he calls prawn crackers and a far better name it is too if you ask me.
Hopefully and that’s a qualified hope, this is our last Sunday in Crystal Fountain. If all is to be believed Mrs Immovable is moving out this weekend; leaving the house in Ballyard free for us. However whether we’re in Ballyseede, Crystal Fountain or KGH things don’t change that much…Lisa is under her blanket with her kindle, Freddie cuddled up next to her and Ruby is lying out on the couch watching TV. No point in saying which program she’s watching as she flicks through the channels like…me! The apple doesn’t fall from too far from the tree there, though luckily for her she’s got the height, looks, legs and personality of her mother, all the good bits, as I’m constantly reminded. As Ed Galvin said to her this week, “it must be a crime to be such a clone of your mother!” The downside of all this of course is the constant “disagreements” over clothes, make-up, shampoo, styles and everything else in the universe. Luckily, Lisa is that bit too old for teenage boys or we’d have fighting there too! If I ever get the chance of a breakaway again it won’t be to the home of football in northLondonbut maybe the Gaza Strip, to put my peacemaking skills to good use.
It’s been, what is for us, a normal week. Since Freddie started the process of coming off some of the drugs, he’s gone through phases of total dopiness. It’s really hard for us to witness. He’s constantly sluggish, it takes about three tries to get the simplest instruction through, afternoon naps are the norm, limbs jerking and his coordination is totally off. These side-effects are there all the time and if left alone he’ll sit there watching TV in a daze, lower jaw hanging open, arms and fingers jerking uncontrollably . Lisa is forever calling him back, waking him from his daze not letting the drugs win and making him use his brain. All day she’s at it, whilst also trying to run a home all on her own, no wonder she’s so tired by the time Ruby and I are home. Through all this, Fred is still full of fun and trying his best too not to succumb to the withdrawal. Heartbreaking stuff, it really is. He’s finally off the Topomax and now the Frisium withdrawal has begun, to help with this the Tegretol has been increased, more messing with the brain. Heartbreaking.
When I came home Tuesday evening the poor man was particularly bad. Sleepy, working on only quarter-battery, jerking and just a wreck of a little boy. Now that he’s reducing the other meds it may be that the Tegretol is finally getting to work, adding to the confusion in his brain, as he’d put it. All I wanted to do was cuddle him and the two of us sat watching TV, it was pointless trying to have a conversation. About 7pm he went to the bathroom and I went along to keep an eye on him. These days he wants to do things on his own, indeed we’re encouraging him as much as possible but we can’t leave our Freddie on his own for too long anywhere. In the bathroom, he tried talking but couldn’t get the words out and went over into my arms. A longish 90 seconds of a seizure but they’re all horrible, no matter what length. Luckily, one of us was with him or he would have given his head an awful whack on the tiles. Lisa and I got him onto his bed, gave him some diazepam and kissed him repeatedly all over his little head. The most kissed man in the world, hopefully something that will continue into his teenage years! He dozed for about forty minutes or so, cuddled up to his mum, with me in and out all the time.
About ten-to-eight he raised his head when I came in and said “Hi Dad”. Instantly he seemed better. His eyes weren’t glazed over and though just awake, seemed alert, out of the fog.
“Do you want some dinner?” I asked.
He didn’t have to be asked twice and got out of the bed in double quick time. The legs still weren’t too good beneath him but he made it to the couch. Within an hour of going over he was sitting up eating a plate chicken and rice as if nothing had happened. The fog had lifted, why I don’t know but the seizure seemed to have reset the brain. After a second helping of dinner, he settled into watching his DVD player and we settled into an evening of Freddie watching. About 9.30 he fell off to sleep in his mothers arms but had three more little five-second seizures in the following forty minutes. The falling asleep seizures were preventing him from going into a deep sleep. We all experience the myclonic jerks from time to time when falling asleep, it’s as if you’re falling off a cliff, but when you suffer from epilepsy, they can develop in seizures instead of second stage sleep. Lisa gave him a half dose of diazepam to try rest the brain and get him stage on to stage two and it worked. Freddie slept the night through only waking at about 4am to come into me and keep me company while the sun rose. The two of us dozed in the early morning light and for a couple of hours all was ok in the world.
The rest of our week went as per usual. Ruby finished her exams; her first year in secondary school is over. This bad period in Freddie’s epilepsy began when she began school back in late August. Lisa and Freddie were down in CUH wondering what the feck was going on and I had the pleasure of driving her to school on her first day. The wonderful child Lisa and I had created was taking he first steps in the teenage world and Lisa wasn’t there to see her off. As she got out of the car, I tried taking a photo only to be told, “Fuck off Dad!” As a result, the only shot I had to show Lisa was a blurred one of Ruby is back as she left the car. That’s my girl.
Apparently, some unelected leader is celebrating 60 years of privilege this weekend but Lisa and I are marking an anniversary too. This week we’ll be marking 17 years together, not with any pomp but 17 wonderful years of laughing, adventure and happiness. We’ve had a few rows along the way, who hasn’t, but I wouldn’t swap one minute of one day for anything else. Sorry January if you’re reading but that’s the way it is!
A couple of months ago I entered a writing competition with the theme of hope, the piece I wrote is here at http://johnverling.blogspot.ie/ Have a read when you have a minute...It's about the hope a little fellow from Cobh had when trying to land a beauty from West Waterford who came to Dingle for the summer of ’95.
The audacity of hope.