For a year now, I’ve been writing this piece, week in week out, following my Freddie’s ups and downs. Initially I began to write as an exercise, to see if I could do it, but then it became a habit, a good way of making sense of the week we put down. Every Sunday afternoon I’ve written my piece, in fact it’s the most disciplined I’ve possibly ever been and the only thing I’ve done so religiously since my confirmation preparations…Feedback from people has been great and from the most unexpected sources. People from all over the world have left comments whilst closer to home; others have stopped me in the street to ask about Freddie. However, my main reason for writing this is so everyone knows how wonderful Freddie is and how stoically he deals with his epilepsy. An inevitable extra is of course that the undying devotion of Lisa is also on show.
This time last year Freddie and Lisa were in CUH, Ruby was about to begin secondary school and I was in zombie land. Having just opened onMain Streetwhen all this began, my new shop mattered little to me as things developed. Days were spent at work and most evenings spent driving up and down toCork. Instead of her mother sending her off to secondary school and making sure her uniform was ok, poor Ruby had to deal with me. At least I had the privilege of seeing her off that morning, something I’ll never forget. The fact she told me to “fuck off “ when I tried to take a photo for her mother will stay with me forever…
Now we are settled inTraleeand Lisa is still caring daily for Fred. Ruby is back to school this week and judging by her mood today another expletive isn’t far off…The commute has become the norm for me and I’ve missed Ruby’s company over the summer holidays. One thing to look forward to is having her back with me this week, moods and all. Last year she was a nervous thirteen year old, this autumn I have a beautiful, moody fourteen year old on my hands. Ah well, I wouldn’t change it for the world.
One thing I would swap everything for is a lasting improvement in Freddie’s condition. Still no sign of that PET scan that could be such a major mover in getting a life back for Freddie. His medicines are still being changed with the hope of getting a sizable period seizure free and all that takes time to get right.
Lisa commented this week on how much she likes the title of my weekly piece and I don’t usually decide on that until I’ve finished writing. This week has been different. All week I was hoping that it would be “And Then Nothing Happened…” but as you can see, something did. For the first time in a while Fred went 6 days, then 7 days without a seizure. On Saturday morning I got up thinking that maybe I’d write that headline but he didn’t make it to day 8. When coming down for breakfast I knew it was too quiet and sure enough, there was the little fellow knocked out on the couch. One had hit him shortly after he got up. There goes the weekend.
After breakfast I went off to work. As usual I called home during the morning to check on his progress but he was fine, sleeping it all off. As I was busy, I didn’t get the chance to call again till about 3.30pm. Freddie had had two more, big ones too, about 1pm and again just before I called. My stomach sank as this hadn’t happened for a while. Staying at work as pointless as my mind was in Ballyard.
Closing up and heading off over the Connor Pass, I was home by 4.30pm. Fred was still asleep but no more seizures, thankfully. We all sat in the front room with him, doing our normal Saturday afternoon things while he slept. Eventually about 7pm he showed signs of rousing himself and woke for a bit to eat. Though very dopey he managed a plate of sausage, broccoli and rice, in my hurry home I’d forgotten about food shopping! But sometimes those meals you throw together from the fridge are the best.
We got through the evening ok and the two of us set off for bed about 11pm, Freddie with a load of books under his arm. So there the two of us were, sitting up in bed, Fred cuddled as close as he could be to me, reading about dinosaurs and other stories. Eventually I fell off to sleep, leaving him awake for a while until I woke to find him fast asleep on the pillow. We had a peaceful night.
This morning Lisa came to wake him and take him downstairs. Unusually I was allowed sleep in and rose about 9.30am. Again coming downstairs, I thought it was a bit quiet and even though he was awake, I knew from the look on his face that something had happened. A seizure had hit about 8 O’clock, another big one but didn’t knock him for some reason. He managed a big breakfast then spent the day snoozing and watching movies. His parents have spent the day watching him, watching movies and snoozing!
Now it is evening time and we are all sleepy again. Ruby is back the west and won’t be seen till tomorrow. Freddie is lying on his Mum trying to sleep things off. As for me, I’m going to lose myself in a magazine, have a glass of wine and maybe watch some TV.
Just another normal Sunday night…
The week gone by has been one of the normal ones for us. The only difference was that Freddie improved on previous weeks. The recent jerks and yips were gone. His concentration was excellent and his speech much improved. It is hoped or at least we hope so anyway, that the Vimpat is eventually getting into his system and helping him to cope better. He’s not needing to take a nap in the afternoon and in fact, the long sleep he took last Saturday seems to have done the trick.
That’s not to say that all is ok in the little man’s world.
Last Thursday evening I spoke to Lisa before leaving for home, to see what was needed, grocery wise. All was well and the family was beginning to settle for the evening, eagerly awaiting the arrival of Hannah on a sleepover. It’s been said before but we all love having Hannah around, especially Freddie, as he likes having a lady to impress. Ever since we moved toTraleeand even more so to Ballyard, it’s been possible for Ruby to have friends around to stay. All summer we’ve had girls on sleepover and Freddie loves it, even though he fakes shyness when they first arrive. The girls pay him attention as a result and try to coax him out of his shell…not sure where he inherited that skill from…Another great treat for me is the company on the way home as since Ruby finished school, the road toTraleehas been lonely in the evening. Hannah and I always start slowly but before we reached the top of theConnorPassshe was in full flow and discussing everything from school to the Olympics by way of summer jobs and TV shows. The time flew and before I knew it, we were pulling up outside number 26.
Hannah is so relaxed in our house that she jumped out of the car and walked in without me. As I followed with the shopping, it was obvious the house was too quiet. There, in a deep sleep on the couch, was our Fred. He’d gone outside for “some fresh air” and had come in because the confusion had come on him. Lisa and my hero went to lie out and soon afterwards, the dreaded seizure struck. Not a big one, the now usual minute long, expression of fury as it breaks through type of seizure, all just after Lisa and I had spoken
Ruby and Hannah went upstairs to chat about boys and make-up, leaving me to get over the upset. No matter how many times it happens, it always upset us. We try to carry on as usual and not let epilepsy control our lives but it hurts deep down inside. Lisa lives with it twenty-four hours a day and the hurt is with her all the time. At least I have the escape of work.
Lisa had made, on request, Freddie’s favourite dinner and now the little man was missing it. Creamy mushroom pasta, the dish is as described, has been his favourite since I don’t know when. Years ago I remember making a big bowl and having to fight him not to have anymore. That next morning he’d woken early and I heard him go down to the kitchen, he knew there was more, the nights sleep hadn’t affected his memory. Listening out, I heard him get a plate and open the fridge looking for the previous night’s leftovers. Soon the sounds of yumm and mmmm could be heard coming from the kitchen. There was no stopping him that time and his love for creamy mushroom pasta hasn’t dimmed since. Last Thursday night he had to sleep through the girls eating his favourite but as usual, there was plenty left for the next day.
All evening he slept and the two of us went to bed about 11pm. He slept soundly till about 2.30 when he had a small frontal lobe seizure, no more than about five seconds long. How I wake to such small movements I don’t know, but Lisa and I must have very sensitive sleeping patterns these days. About forty minutes later, he had another one. Nothing to be concerned about I thought as they were so small. However, about 4am he had another, quickly followed by a second one. I called Lisa and she gave him a half shot of diazepam to try settle his brain. As I was driving to Cork that morning Lisa sent me down to sleep on the couch while she minded the little man.
About 7am, they came down and Freddie cuddled up to me under my blanket. Lisa went to get a cup of tea and Fred started to tell me about a dream of his. During the story he had another five-second seizure. This was a bit unusual but not that unusual unfortunately. After another couple of these seizures, a bigger full minute long one broke through and Lisa gave him another half-shot of diazepam. Should we have given him the full one earlier? Who knows? The trouble with the anti-seizure drugs is the side effects; horrible things like lung collapse can happen if you overdose in a short space of time. So we had to sit it out and wait. He had another couple of small ones but managed to eat his breakfast and get on with starting his day. At one stage, I managed to get him to try sleeping but after a few minutes of that, he was bored and wanted to watch TV. Sleeping can be a great way of getting the brain to recover but if Fred doesn’t want to do something there is no point trying to convince him otherwise.
My trip to Cork was to meet with Fred’s neurologist and the two girls were coming along to go shopping. By the time they were ready Freddie was ready for sleep again and we left the two under the blanket, not knowing what was ahead of them. Every now and again I called, not wanting to disturb but just wanting to check what was happening. The reports were good, he was sleeping soundly and my worries began to ease.
In the real capital, I left the girls to go about their business and I went off to browse Connolly’s second-hand bookshop. But I couldn’t think in there, my mind was elsewhere, sure I knew he was in good hands, the best in fact, but looking at books just couldn’t be done. The words on the spines meant nothing; I couldn’t think of a single author’s name or book title I wanted. Disappointed and confused I left, nodding at the owner as I went out the door. No sale from me this time. Off I went to meet John Cousins for lunch, a great friend from school…second class, Mr Farrell’s, 1974 and he still makes me laugh today. The lunch was just what I needed, a laugh, some great conversation and a change to my usual routine. Unfortunately, time was against us and by 1.50, I had to rush off to meet the doctor. John walked me to the car park, I don’t know if he sensed my mood had changed but it felt like he was minding me, making sure I was ok.
At CUH the usual queue was forming to see the neurologist. A little kid, Cian, was waiting to be seen. He’d been in the hospital when we were in-patients a couple of years ago because he was recovering from brain surgery. His epilepsy had been much worse than Fred’s and needed immediate surgery. Apparently, he’s made a full recovery and seeing the little fellow run around without a care was a delight to see. It also gave me hope.
The neurologist was a bit surprised to see me on my own but it was one of the better meetings we’ve had. Not having the stress of driving all the ways toCorkwith Fred and trying to keep him occupied while waiting for the appointment was a great relief. Twice before he’s had seizures on the way back from an appointment, one particular night being one his worst. So not having the worry of Fred kept my mind at ease and focused on what was needed to be said.
The neurologist too seemed more focused. We discussed the current situation, the current medicines and the path we were on. Freddie’s recent seizure patterns were explained in detail and I didn’t leave anything out. Lisa and Fred were relying on me here, I thought to myself. The subject of the PET scan was brought up…she apologised that it hadn’t yet happened but explained how a PET scan for epilepsy was different from other PET scans. That was why she was holding out for the one in CUH, the consultant was experienced in epilepsy PET scanning and wanted to have the machine right for Freddie. Because he wasn’t yet happy with the new machine being suitable for Fred was why he hadn’t yet been called. It will happen and happen in the next three to four weeks. We looked each other straight in the eye, I told her we trusted her and was she happy with what he was saying? The man’s credentials were excellent she said and she trusted him completely. While I hate waiting and I told her so, the reasoning seemed logical…the wait goes on, for the moment at least.
Back home with the girls and Freddie was as bright as a button. He’d slept a lot of the day and was the better for it. As the girls ate their dinner, he sat between them on the couch, his favourite women on either side. The girls had chicken nuggets and chips for dinner, Fred helped himself to a few spare chips.
For once he wasn’t mad for chips, another favourite treat…the reason being he was full of creamy mushroom pasta, he hadn’t forgotten that Mummy had made a big pot of it the night before and had two bowls for dinner…
Nothing wrong with my little man’s memory!
The Verling men are alone this week, again. Not that we’ve been abandoned by our women folk, no its just that Lisa and Ruby have gone shopping leaving the men at home to fend for themselves. Its tough going, Freddie has got the duvet from our bed and now the two of us are under it, me writing this, Freddie watching Wallace and Gromit in the Wrong Trousers. He loves the nonsensical humour and slapstick nature of these movies. If you give him the chance he’ll recite each one scene for scene. Ask him what he read this morning he’ll look blankly at you but ask him to repeat a whole movie watched weeks ago and it won’t be a problem. The man has his priorities…
Freddie has a remarkable memory when the medicines give him a chance and we can only hope that changes in his regime will only add to this. Last week the two of us were cuddled up as usual on the couch. Fred was watching a movie he hadn’t seen for a while called “Arthur and The Invincibles”. The old DVD he had was scratched so badly that he hadn’t been able to play it so I eventually downloaded a new version for his media player. When we came to one scene towards the middle, he paused the player…
“Just one second Dad” he said getting his netbook from the shelf.
After a couple of minutes searching on YouTube and with me helping with the spelling, he found what he wanted…
“Just a second” he repeated getting the netbook and the remote control ready.
“There, that’s it” he said, starting both machines at the same time but turning off the sound on the TV and turning up that on the DVD player to full blast.
The scene on the DVD was of Arthur fighting the bad guys with the help of his friends. The music Fred been looking for was from some band that accompanied a Godzilla movie snip. So, there he had it, the battle raging on the TV in tune to the music he’d remembered from a while back and thought suitable. Arthur defeated the bad guys with “Let the Bodies Hit the Floor” blasting from Freddie’s netbook. How he thought to do it I’ll never know. The pause in the movie at the correct scene was perfect as was the introduction of the music. When he gets his normal life back a career in movie soundtracks beckons I reckon, as Freddie’s mixing was just perfect. In true Freddie style, he repeated this a few times until I couldn’t listen anymore and we went on with the movie watching.
Freddie’s normal life is continuing as before, with his playing curtailed and fun restricted. It’s a testament to this wonderful boy that he doesn’t complain but yet he often starts sentences with “when I get better”…the plans he has for when all this is behind him. Trips to Aunty Claire, trips to the beach, having friends around its all there in the planning, waiting for epilepsy to give him a break.
The week gone by has been a bit unusual and tough on him. All week he’s been feeling sleepy and having minor frontal lobe seizures, lasting five seconds at the most. On Tuesday he was having leftover Chinese from Ruby’s birthday when one hit, sending the meal all over the floor. The poor man was so disappointed to see his treat going to waste. Lots of other jerks and tiny seizures followed during the next few days, nothing major breaking through. An improvement of sorts but the poor fellow was wrecked from it all and sleeping a lot during the day. This could be from him getting used to the new medicine, Vimpat, helping the Tegretol do its job. Alternatively, it could be just a change in how the epilepsy is affecting Freddie. Let’s hope it’s the first but he has a long way to go yet before he’s on full therapeutic dose and a proper judgement can be made. Being constantly tired is whacking him, throwing his sleeping patterns completely out of sync and leaving the poor man not knowing if he’s coming or going. Thence why we are here under a duvet and Freddie is drifting off to sleep again.
By Wednesday he was wrecked from it all and I came back from work to a very disorientated young man. He couldn’t get his sentences out and was only fit for sleeping. He woke to watch a movie and to have his dinner but by about 8 o’clock he was tired again. Eventually about 9 o’clock, a full seizure broke through, the usual minute long one but it was almost a relief that it had happened. The cloud he’d been under wasn’t going away and the full seizure served to clear the air. After he recovered, he opened his eyes to tell us he’d had a terrible fright, the seizure had taken him by surprise. A few minutes of talking, clearly again, he curled up to his mother and slept the night away. About 4.30 am, another one broke through; the two of us in a deep sleep but it woke me immediately. Those ones he has in his sleep are like an electric shock going through his body they hit him so suddenly. He jumped up in pain but in a minute, it was all over. Lisa came down to give him the shot of diazepam and he drifted off to sleep again. Lisa stayed with him and I went off down stairs to try sleep as I had work the next morning. About 8 o’clock, the two came down, Freddie looking for a big breakfast as if nothing had happened. That’s the one good thing about the nighttime seizures; he doesn’t get the shock and upset of the daytime ones…
As I said, the one big one sort of cleared the ‘confusion’ in Freddie’s brain letting Fred get on with a normal life, as such as he has one. He still fell asleep about seven o’clock last night and didn’t wake till seven this morning, so the routine may be starting again. All this upset to his brain, medicine changes, sleep disruptions, small seizures are so terrible but maybe things will even themselves out over the next month or so. There is an appointment with his neurologist this week, should be fun as we’re no better off than we were the last time Fred was up inCork….
One of the nights during the week, after Fred had slept through the afternoon, the two of us were sitting up in bed about midnight and he was beginning to drift off. He laid his head on the pillow while I rubbed his hair…I spoke softly to him...
“You’re going to grow up to be a wonderful man,” I said.
He turned to me…
“Just like you Daddy” he said softly.
Broke my heart, that one did.
Now it’s Sunday again and we’re relaxing like only the Verling men can. Breakfast has been eaten; the two of us are sated, and now happily cuddled up under a blanket whilst the Irish “summer” does its best impression of mid-winter. Lisa and Ruby are away, Ruby for the last two weeks, Lisa since early yesterday morning, down to collect her darling daughter fromWaterford. Ruby was fourteen yesterday and even though she’s grown into a beautiful, wonderful young woman she’ll always be my baby girl. She can cut me in two with one of her retorts and usually she’s not far off being right too. That’s the trouble with children, they grow up quickly and yet know you so well that they can wound you in a second but lift you higher than the moon in the next. This morning I spoke with my son Thomas, he turned 18 in June, trying to arrange his trip over to see us all. It was lovely seeing Freddie and Thomas talk on the phone, Fred loves his brother and wants him to come for a sleepover. When Thomas comes over Freddie always introduces him as ‘my brother Thomas’ to anyone he meets, even Ruby….
This morning the two of us got up about 7.20am, slightly later than usual but we had been chatting in bed about life and stuff. Downstairs I gave Fred his medicines and went off to the kitchen while he settled himself on the couch. From the kitchen I heard that horrible screech that can only mean one thing…I ran back in to find him splayed out but awake. It looked like he’d had a small frontal lobe seizure, probably lasted the five seconds it took me to run from the kitchen to the front room. The remote control was on the other side of the room, probably had been thrown there in reaction to the seizure hitting. Fred looked at me, confused but conscious, the medicine must have curtailed the seizure but because it was late in being taken the levels weren’t high enough to prevent it occurring. In a minute or so, he was back to normal and we switched on the TV to try settle in for the next while.
Naturally enough Fred chose Jaws to watch, a nice relaxing movie….about twenty minutes later he was telling me what was going to happen next when he slipped into another seizure. Again 5 seconds and it was over, he was smiling afterwards, feelings of elation are a common symptom of Frontal Lobe Epilepsy. That smile he gives is so innocent, as if he’s coming out of unconsciousness and happy to see me waiting for him. It was all over in about a minute and soon he was back with Jaws, just about when Chief Brody gets his face slapped. Were we in for a day of these, as happened almost three months ago to the day or would recent improvements continue and the medicine really do its job?
The next hour was counted down, I reckoned that would give the morning dose time to get into his system and also show if things were under control. By nine there hadn’t been another episode and Jaws was leading Quint et al a merry dance round the waters of Nantucket. A good sign was that Fred put in a request for breakfast, I quote…”A big one and don’t tell Mummy”. How could I resist that? So while I made “a big one” I kept one ear open for tell tale noises from the front room and also stuck my head through the door every minute or so. Fred paused the movie at the best bits at the end and waited for me to settle in with him before starting it again.
Freddie is very meticulous with his breakfast eating. Each soldier of toast is lined with a small slice of rasher, omelette and this morning, baked beans. This is demolished and he moves onto preparing the next delicious slice. Once I’d settled in beside him the movie was rolling again and I had to laugh at Quint being eaten by the shark in time to Freddie eating his filled soldier of toast…”watch this Daddy… ugh, the blood” he said between bites….
On Friday, Lisa finally finished weaning him off the Frisium. It’s taken nearly three months but at least it went smoothly enough, maybe today’s little seizures are a last kick from the withdrawal, who knows with these medications. Freddie started on the Vimpat on Wednesday, another drug but this one is more of a facilitator than an anti-epileptic. The idea is that it will help the Tegretol work better, at the moment it’s stopping the seizures spreading and clustering, giving Fred some quality of life, reducing our hospital visits. Now the next step is to get the Tegretol to prevent the seizures occurring in the first place or at least reduce their incidence. It will take about two months to get to a therapeutic level; he’s only on half a tablet a day at the moment, if you rush the intake, horrible side effects can happen. So, another waiting game has begun…
The waiting game for the PET scan continues. The news from Corkis that the machine still isn’t calibrated for children and now that the holiday season is upon us I can’t see that happening before September. The good news back in March was that all this would be done by early June, we’ve got another appointment with the neurologist on the 18th of this month and still no scan. The frustration is overwhelming but as Aiden said to me yesterday, it’s better to get the best scan done than an inaccurate one. Very true of course, in fact I hadn’t thought of it that way, being in the thick of things you don’t always see the wood from the trees, but all this fecking waiting….
The week gone by was the usual one for Freddie, he had two seizure days, Monday and Friday, maybe this has become unionised, only on working days, twice a week. The sooner the shop steward calls an all out strike the better. Both times it happened while I was at work in Dingle. On Monday he had two and was awake but very dopey by the time I got home. It’s horrible, really horrible to have him out of it like that for the evening but that’s what Fred is living with at the moment. Tuesday morning he felt very sleepy and after breakfast he slept until early afternoon. Boy was it difficult getting him off to sleep that night!
The rest of the week went fine until he had another one on Friday evening. He’d been a little dopey on waking that morning so I thought one might be on its way and it was no surprise to get that call from Lisa. On my way back toTraleeI did some shopping for the long weekend, hoping to come home to a peaceful house. About 6.30 I came through the door to find the little man sitting up eating his dinner, as right as rain, only the one this time. Such a relief…no matter how many times we go through this it is always a worry, especially when you’re not at home, your imagination running away with you!
On Tuesday night when he was in no mood for sleeping, the two of us were sitting up in bed, me hanging, Fred, looking like he was eventually about to fall asleep asked…
“Dad, when will it be morning?”
“When you go to sleep and then wake up,” I said, with an element of force in my voice, hoping he’d get the hint.
“So, first the dreams and then the morning?” he asked, looking up at me with his beautiful brown eyes…
Now, isn’t that the best description of a good nights sleep ever?