On Monday Fred just did not want to go to school. Sunday evening the excuses began and they were still going Monday morning at breakfast time...
“But Dad, I can’t go to school, I had the fainting,” a reference to his bad day at the museum on the Friday.
Followed by a line such as “I can’t go back to that place it’s too noisy.”
The noise is a recurring problem for Fred, as it is for a lot of people with epilepsy. Background sounds become amplified or meld into just white noise and it can be very difficult for Fred to tune in. Also with Fred having difficulty in keeping up with conversation, he really needs to concentrate and is only good at one on one chat. This was a point highlighted at a meeting we had in Dublin Friday morning. As Fred needs to think between each word, dragging the words together from the back of his brain, group conversation is next to impossible.
As the two of us got ready for school Fred was yawning and insisting that he was too tired. My usual comeback is that if he doesn’t go there won’t be anymore trips to the museum, no more fun at school and the trump card, no more Jaden. In Fred’s mind there would be nothing worse than not seeing the J man again so he reluctantly agreed to go.
After school Fred was very tired, nothing too unusual there for any man or boy on a Monday. He told me that Denise was cross with him for not knowing his words. Somehow I doubt if Denise was cross but she was probably trying to overcome a big problem in Fred’s reading skills. Fred he is very visual. His reading can be good when the text is accompanied by illustrations, another point that was raised at Friday’s meeting. What Denise had been upset at, as we all get at times, is when Fred can read the words in his book but not when they are on his separated word cards. The fact that his concentration levels are fairly poor doesn’t help either. At times Fred will prefer to look out the window or what someone else is doing rather than the matter at hand. Doesn’t help when you are trying to teach him and Fred is lucky to have a patient teacher like Denise.
Then on Tuesday he came home bright as a button. Denise had been very pleased, he said. When Ms O’Se came round for the afternoon hour she reported that Fred did great work and she was delighted with him. What a difference a day makes and Fred was lapping up the praise, delighted to make all the women happy.
Wednesday morning and there was another school trip planned. This time to the Aquadome, just next to our home here. Unfortunately, the one activity that is too dangerous for our Fred is swimming. With his epilepsy so unpredictable, though it has been good lately, the risk would be too high of something going wrong. Fred was not happy with not going swimming. The bus trip was on but actually going into pool was not allowed. Fred would sit with Denise and Rose in the café, watching the kids and playing games. Lisa was worried about the whole venture, after the trip to the museum on Friday going wrong, but as Rose assured her, he’d be well marshalled and would have a good time.
Fred did have a good time, though unhappy with not getting into the pool. He told Rose that next time he’d be bringing his swimming gear. We’ll see on that one. But at least he had another incident free school outing though Lisa, sitting at home, was none the better for it. Each time the phone would beep Lisa would jump, a call would put her off the deep end. Eventually after the two hours of torture she could take no more and shot off to be outside the school for when they came back, just in case. Though I was laughing, teasing her by saying I could see Coast Guard helicopters outside, I fully understood why she was so worried. It’s not easy being Freddie’s parents.
Fred was full of it when he came back….
“I have to go in that pool Dad,” he said, looking up through his brown eyes, “I need the exercise. I need to build my muscles Dad.”
This from a man who would have no problem asking his mother to get him a glass of water from the kitchen, even if she was sitting next to him. The poor fellow, he used to love his trips to the beach. I still remember holding him in the sea, letting him float on the gentle waves of Beenbawn, holding tight to his wet and wriggling little body. If he could he would have taken off after Ruby into the big waves, the sea held no fear for him. The laughter still rings in my ears from when he’d catch a small wave with his body board and wash up in the sand. Hopefully, those days will come back to us; I know Fred would love them.
On Friday we had another appointment at Temple Street, two in fact. The first was Fred’s next jump in the VNS settings. The double jump the last time was a bit too much, so this time Suzanne would only do the single bump. After the meeting with Suzanne we’d have the second of the sessions with the educational psychiatrists. Before all that though, we’d have a night with Conor and Cathy. The highlight of any week for Fred.
This time Ruby came with us so it was a real Verling family road trip, complete with rows before we even go out the door. Ruby was allowed stay home, saving us a trip to Dingle but Fred had to go to school. He was far from happy with this but at least he was coming home early, 12.30pm, so we could get on the road. I picked him up from school and he gave Denise a big goodbye, she telling him to have a good time with Conor and Cathy. Fred of course had filled her in on the trip, probably since he’d began counting down the days on Monday.
In Dublin Fred had a ball, as we all did. The make the trip even more special we had a Chinese for dinner and I think it was the only time Fred was quiet all evening, munching away at his vegetable noodle dish. It’s one of his favourite things, piling the food onto the prawn crackers or the white crisps as he calls them. That night we all slept soundly. Fred cuddled up to me and slept like a babe, the Chinese doing its job. No wandering around the house looking for a comfortable bed, not sure if he’d be better off with his mother or his Dad. The fact Ruby was cuddled up to he mother probably put him right on that one, she wouldn’t be too happy with being disturbed.
On Friday morning we headed over to Temple Street. Lisa and I were expecting a long session with the psychiatrist but we were out by 10.30am. The bump up with Suzanne had only taken five minutes, so we even had time for breakfast before the second meeting. The meeting went well. Though they could see that Fred had concentration problems they believed it’s linked to his epilepsy rather than any attention deficit syndrome. Though we also believed that, it was great to have it confirmed. The last thing Fred needed was to have another condition to deal with. We discussed the findings of the school report and highlighted Fred’s need for more social interaction. The points we were aware of before, speech problems, concentration problems, slowness in retrieving stored knowledge, it was all there. It will be hard work getting to overcome these difficulties but we will, Fred will get there.
After Temple Street, the ladies went shopping. Ruby had a party on Saturday night and she needed a top, plus half a dozen extras too. Fred and I dropped them by the Jervis Street Centre and went off on a drive.
As we drove up around Parnell Square I noticed the HughLaneGallery….
“Would you like to see some paintings?” I asked.
“Sure,” he said.
“Let’s go to the art gallery so,” I said, parking up in the disabled parking spot right outside the door. I hadn’t even checked if it was open, it was only 10.45am, but thankfully it had been since 10am.
The HughLaneGallery is in a beautiful old building in the centre of Parnell Square. In it’s time it must have been one of the finest buildings in Dublin, overlooking O’Connell Street below it. The gallery houses some of the finest Irish art with some wonderful pieces by Monet, Rodin, Pissaro and others.
“Wow,” Fred said when we walked into the reception area, “it’s so beautiful.”
We laughed at the Rodin bronze sculpture of the naked man near the entrance. In the galleries we wondered at some of the large canvases and Fred loved it...
“Can we see more?” he’d ask as we’d finish one room and move onto another.
In the Francis Bacon section, his studio in London, donated by Bacon to the Hugh Lane, has been carefully transplanted. Fred loved looking through the glass panels at where Bacon worked. We both agreed that Mummy wouldn’t be happy with the mess.
Downstairs Fred wanted to go in the bookshop and look around. He was fascinated by the fancy writing pads, at €12.50 very fancy, and every time we passed by he wanted to go in and look at them. When Lisa and Ruby joined us he brought them in to see the writing pads. After a coffee and lemonade in the cafe we hit the road to Tralee. In all Fred and I had spent over two hours in the Hugh Lane and we both loved it.
An uneventful trip home finished with Fred reminding me that I’d promised to buy him a writing pad when we got back. The two of us set off, leaving the ladies to settle back home. In the stationery shop we found just the right pad and some good markers, all for €4.50. Fred loved them and has been practising his words all weekend.
Yesterday though he had a seizure in the car. Only 8 days since his last one. Lisa was dropping Ruby and Ali to the bus when the confusion came on him and he couldn’t fight it. Jaden was there too and he helped Lisa get Fred comfortable. Poor Fred, so soon after the last one and just when Jaden had come over.
Thankfully though it didn’t develop into a cluster and Fred slept it off, waking in time for dinner. I asked him what happened and he said he had the bumping confusion that he couldn’t stop. What this is we’re not sure but I think he meant a strong build-up that happened so quickly it hit with little warning. Today he has a cold, maybe that added to the problem, we just don’t know. The only thing we can do is wait and see, hopefully the eight day break was just a freak event. The fact a cluster didn’t develop must be a good sign.
Fred slept well last night and is downstairs watching a movie.
It’s almost like yesterday’s seizure never happened.
Somehow I think he’ll remember it when it’s time for school in the morning.
Fred wouldn’t be Fred otherwise.
Last week Fred had a nightmare about the museum. When he woke up in the morning I was told all about it. The big dinosaur and the pterodactyl had chased Fred through the building, trying to catch him. Fred described in detail the big teeth of the T-Rex and the wings of the pterodactyl has they tried to track him down for dinner. I asked Fred which museum all this had happened in and he answered...
“The big one in town, where I went with Jaden and Denise,” his eyes wide open and the fear still written across his face. In his dreams he’d created a mash-up between his favourite movie, “Night at the Museum”, and a favourite school trip of last year. Some imagination at work in our Fred’s head.
So this week ,when back from the mid-term break, we got a note home saying they were planning another trip, this time to see the exhibit on medieval life, it seemed very appropriate. Denise explained to me that they would be going over on the bus and spending about an hour digging for bones. Heaven for our Fred, a trip on the bus and an archaeological dig, he couldn’t be happier.
All the talk was of the bus.
“What day is it today?” he’d ask.
“Four more days and we’ll go on the bus,” half a question and half a statement of fact but the excitement was building.
Before the excursion Fred had to get through the week at school. On Monday he was a very sleepy boy, not wanting to get out of bed and not waking fully till at the breakfast table. Even when getting ready for school he was rubbing his eyes and complaining of being tired...
“I’m too tired for school, my Dad,” he said, struggling to button his shirt, yawning and trying to snuggle into me for a snooze.
We eventually got out the door and Fred was happy to see Denise and Jaden at the classroom door. As it was getting into the red zone with seizure free days I was a little concerned but Denise and Rose are well capable of reading the warning signs. I said it to Denise that he might be a bit tired and she said...
“We’re all tired this morning Freddie, I could barely get out of the bed myself.”
There was something reassuring about the way she said it that made me knew Fred was in good hands, that he was being well looked after.
He came home lunchtime full of talk about the museum and the tone was set for the week.
Swiping his VNS with the magnet started again this week as well. The effect of the double jump had been too much and under advice we left it alone for two weeks. We were worried that the renewed swiping might knock him but he didn’t seem to mind the extra jolt. The only side effect was the strained Marlon Brando for a few minutes afterwards but nothing else. Every twenty minutes or so either Lisa or I will find the VNS under his skin and swipe the magnet over it in an X shape. The little black magnet has become part of the furniture now, wherever Fred is you’ll see it somewhere nearby. Even when he’s asleep he gets a swipe, no escaping the swiping in this house.
On Tuesday Fred came home saying he wanted to quit school, he’d had enough of Denise and her rules. Apparently he’d wanted to go home and Denise had told him he had to stay. They’d been playing ball in the yard and Fred got a ball in the stomach. Now I’ve seen these balls, they are soft and with some air left out, so they can’t hurt anyone or break a window. The effect of one in the stomach can’t have been bad but Mr Dramatic saw it as an excuse to slip off home. Thankfully Denise is up to his ways and put her foot down...
“But Dad,” he said to me, palms out flat, imploring me, “I’m sick of that school and those rules.”
“Well if you don’t go to school you won’t see Jaden or get to go to the museum on Friday.”
“Oh, all right but I’m sick of their rules,” was the resigned reply.
Not a man for rules is our Fred.
Each day this week he’s had Ms O’Se over for the afternoon session so there hasn’t been any escape from the homework. On Wednesday Fred pulled the headache card but Lisa and Ms O’Se were having none of it. Fred took a couple of painkillers and Ms O’Se got stuck into the homework. As I left the kitchen I saw Fred settling down to the work, Ms O’Se wasting no time. Fred knows when the game is up and taking on the might of his mother and Ms O’Se just wasn’t a battle worth fighting.
Friday morning was the day of the big trip. Fred was excited about the bus and said he was going to sit with Jaden. In the playground Denise met us and Fred gave her a big smile...
“Good morning Denise,” he said very politely, “When are we going on the bus?”
She laughed, “Oh Freddie, not until twelve o’clock. We have school work first.”
No escaping the schoolwork for our man.
At midday Lisa drove down to the school and watched them all file onto the bus, Fred walking out with Jaden. She followed the blue bus across town and took up watch outside the museum door. Fred filed off and walked up the steps of the museum with Denise on guard beside him. In they went and Lisa settled in for the duration.
Then her phone rang.
Fred had made it in the doors but collapsed on the hard marble floors. Lisa was in like a shot and Fred was just coming through the seizure. Rose and Denise were with him. He’d crashed off Denise and slid down, giving his head an awful wallop. The lump on the side of his head when he got back home was the size of a tennis ball. The three managed to get him up and with the help of the museum attendant got Fred into the back of the car.
Fred had made it to the museum, the aim of his week but not beyond the lobby doors. That afternoon when Ruby came home he told her he’d been on the bus and gone to the museum but he’d fainted inside.
It was day twenty seizure free, a slight improvement on the last break and illness aside, he’d had a clear run of it. The day itself went fine, under the circumstances. Lisa took charge and she nursed our boy through the worst of the cluster. In all Fred had seven seizures, Lisa had given him a shot of diazepam after the sixth and as always, epilepsy had one last shot before he went to sleep. Just before he got into bed it threw Fred to the floor, Lisa as always there to catch him. That besides, he had a very peaceful night and stuck to me like a limpet, even getting in a few dreams, judging by the running legs.
In the morning when he woke up Fred looked up at me through his battle weary eyes...
“Yes, my man.”
“I’m sorry I fainted at the museum, I couldn’t help it.”
Just now I heard him coming up the stairs. I’d left Fred and his Mum in peace downstairs an hour ago. There was a knock on the door and Fred came in, looking sorrowful through his sellotaped glasses. They too had gotten a bashing off the museum floor.
“Me and Mum were fighting.”
All is back to normal in the house.
The cycle begins again.
On Monday Fred went back to school, between seizures and sickness he had been off for a full week. That’s a long time for a little man who needs all the education and interaction he can get. So on Sunday when his appetite returned it was all systems go for Monday morning. Not that he was happy about it but the news that he had only three days until the mid-term break softened the blow. On the other side Ruby was off for the full week, which only added to Fred’s sense of being the victim. The week that he’d just put down really was a lost week; constantly tired, sleeping, and feeling dopey, it was like going back to the bad days for us. When he woke up Sunday hungry and then during the day looking to do things other than sitting on the couch, we were very relieved. If asked, Fred would probably agree, under pressure, that going back to school was for the better.
Usually now I drop him at the gate but as he’d been off, the two of us went into the school together. Everyone was happy to see the man and the welcome reminded me of how great Blennerville is for Fred. As usual Fred pretended to be shy and held back by the front door, just next to the coat hooks. Denise came out with a big hello as did Muinteoir Rose, and Fred smiled his best ‘please don’t be too hard on me’ smile which, along with his worried face gets them every time. Behind Fred though was Jaden, a big smile on his face too and when Fred turned to see him he looked like the happiest boy in Ireland. The two walked into the classroom together, Fred not even saying goodbye, which delighted me, he needs that independence another friend gives him.
At lunchtime Rose suggested to Lisa that Fred could do with more social activity. They both agreed he’d stay until 1.30pm, a time when the class tends to be more social and it would also make Fred feel part of the whole set-up. The sooner he’s looked upon as part of the class from start to finish the better, not some figure that comes and goes like an outsider. It’s only an extra half hour and the idea is to push it up to 2pm from next week. Fred will become a fulltime student once again. Also we’re going to get him to school early so as he’ll be part of the hustle and bustle of the morning activities. As it is we’ve being getting him in just as class begins and then he heads off for an hour with his resource teacher Olivia. From now on he’ll get to settle with friends before heading off and that can only benefit him. Fred also will take Jaden and another friend with him to resource teaching, to play board games once or twice a week. This will help him make new friends and increase his social activities. It’s all go for the man.
On Tuesday Fred was up and at ‘em early. He hardly had a chance to sit still after breakfast before we had him on the road. The extra few minutes will be great for him. When he came home about 1.40pm I asked Lisa how he had been with the jump. Fred didn’t even notice and of course he loved the extra time spent with friends. We know that he can only benefit from all this and when he goes to 2pm next week, the first part of his reintegration will be complete. Such a difference from last year when the thought of school terrified us.
When he came in the door I asked Fred how he got on...
“Oh fine,” he answered, “but there’s good news.”
“Yes, tomorrow we’re playing snakes and ladders!”
Snakes and Ladders at school, whatever next.
On Monday, Tuesday and Wednesday Fred had Ms O’Se around for his hour of teaching in the afternoon. Much to his annoyance but it really does benefit him. Ms O’Se doesn’t take any nonsense from Fred and he knows, eventually, that there is now no getting out of it. This doesn’t stop Fred giving out or pretending to have confusion or fight with his mother over Ms O’Se coming. The fighting with the mother is usually when I have to step in, as Fred blames Lisa for most bad happenings. He gets so cross and at times violent so it’s best I deal with it before he gets out of hand. The best I can do is threatening no more Jaden or Godzilla or in the extreme, banish Fred to his bedroom. When sent to the bedroom he calms down eventually but his strong will sometimes takes time to see reason and he has been known to spend a couple of hours in the cooler. Like Steve McQueen in The Great Escape the time in the cooler doesn’t seem to bother him but unlike in the movie Fred usually ends his time with a cuddle.
On Thursday though Fred was free of it all. No early rises for school, no Denise and no Ms O’Se in the afternoon. Ruby had already had three days of it and now Fred was going to enjoy his midterm. About 9.30am I decided to get him up for breakfast. Routine is still important for Fred and messing around with sleep patterns can be a trigger. As I tried to get him out of bed all I got was...
“I’m tired Dad,” as he rolled over for more sleeping, back in under the warm duvet.
Again I tried to drag him out of the bed...
“But Dad, I’m not finished dreaming yet.”
What a great line. This time though he got up and came down for breakfast. Over breakfast he asked about Jaden coming over. It had been a couple of weeks and Fred loves having J over as does Jaden love coming to Fred’s house. Lisa sent Jaden’s Mum a text and went off for her run.
A bit later I got a text. Jaden was ready to be collected. Fred and I set off to get the man...
“Take the short cut Dad,” I was instructed and Fred showed me another way to get to Jaden’s house.
“Now when we get there, you wait in the car and I’ll go in and get Jaden. Ok my Dad?”
“Ok, my Fred.”
At the house Fred ran in and a few minutes later the two came out, laden down with sweets. Jaden was full of fun, obviously delighted to see Freddie too. As Fred got in I noticed he had a Nintendo DS in his hand, he’s taken it off the shelf in Jaden’s front room.
Unfortunately though he loves it, the DS jumbles Fred’s brain. After time playing it his speech is really bad and he can be very dopey or forgetful. Somehow Jaden knew this, maybe Lisa had mentioned it before.
“You can’t play with that Freddie, it’s bad for you,” he said and quite sternly too.
“But I just want to look at it,” Fred countered.
“It’s broken and it will hurt your eyes.”
Ok,” a disconsolate Fred said, putting it down, but keeping it near.
For rest of the day the two played and had great fun. At one stage, not long after they arrived Fred came in looking for a bowl. When I went in later to check on them they had the laptop on the ground, a big blanket wrapped around them and a bowl of skittles wedged between them. A nearly empty bowl. The two had been guzzling to their hearts content. Luckily they hadn’t opened the second party bag and I confiscated it along with the bowl, what was left of it. For the rest of the day Jaden was as high as a kite, full of giggles and fun. Thankfully Fred’s medicines kept him someway sober, one good side effect in the circumstances.
At dinner time the two had a treat of burger and chips. Jaden wolfed his down and asked what I was having for mine...
“Oh you wouldn’t like that hot chilli,” Lisa said, “it’ll burn your mouth.”
It was a hot one too; much hotter than I meant to make it but I’d assumed the green chillies weren’t as hot as they were. In fact I was taking my time eating it.
“I love hot chilli,” Jaden said, “my Dad makes hot chilli all the time.”
Fred looked worried.
He looked even more worried when Jaden polished off the plate, in seconds flat and asked for more.
“But Jaden you can’t eat more, you’ll burst.”
“I love it,” Jaden said, tucking into a second plate.
“But Jaden,” Fred was really worried, “you’ll get bigger and bigger and you’ll burst.”
There was real concern in Fred’s voice. Jaden is a slight figure and he was woofing away the chilli, licking the plate when finishing the second helping. Lisa reckoned Fred was worried that something might happen to Jaden and then Fred wouldn’t have his friend anymore. Fred was genuinely worried.
Later Lisa and Jaden were having a chat when taking him home...
“Fred is getting better all the time. I notice it each time I come over,” Jaden said.
Lisa was in tears telling me later.
Between Jaden bursting and Fred getting the better, the two really look out for each other.
What more could you want from a friend?
Today Fred is in recovery. Nothing too much, he’s just had a throat infection all week and he hasn’t had much of an appetite. Last night the two of us discussed what he might have for breakfast but when he sat down to his favourite of rasher, beans and egg all he could do was shake his head. The eyes were willing but the stomach was saying no. Right now he ate a pear and said he was stuffed afterwards. It’s been a week since his bout of seizures but that combined with the infection means he’s eaten very little in the last seven days.
Sunday night was when I first noticed his high temperature. There was a time when high temperature would bring on a seizure but we think that time has passed. In bed that night he was roasting but not sweating nor were his hands cold to touch. I rolled him over and a few minutes later he’d cooled down so I thought little of it. But Monday he was bad all day and we kept him home from school. With this he was delighted but not so happy when Ms O’Se came around in the afternoon. For his temperature we had him on Ibruprofen and it seemed to take control. That afternoon the two of us went for a drive in the car, collected a parcel for Mummy and did some food shopping. It looked like he was on the mend. Tuesday morning though and he was very down, not eating and still running a temperature so we made a doctor’s appointment. 5pm was the earliest they could fit in the man.
At the doctors surgery Fred was very lethargic and feeling sorry for himself. Funnily enough, though we’ve been patients at the surgery since last summer this was the first time Dr Glancy was meeting Fred. At the Dingle Surgery Fred was on first name terms with all the staff; just shows how much things have improved. As Dr Glancy said...
“Nice to finally meet you Fred even though I feel I know you quite well. I’ve written you quite a few prescriptions in the last while.”
“Thank you,” Fred said through the pain.
“What’s the matter?” the doctor continued.
“My skin is roasted,” was Fred’s honest reply, “I have a temperature.”
Sure enough she checked him over and found his throat was blistered. In good sensible doctoring she didn’t prescribe anti-biotics and recommended we continue with the Ibruprofen. A lot of kids were presenting with bad throats and she continued that the best thing to do was keep an eye on him.
There isn’t a second in every day that we don’t...
As the week went on we kept Fred off school. He was very tired and took every chance he could to take a nap. Ms O’Se came around for his teaching hour but I don’t know if she got much out of him. His temperature evened out but his appetite didn’t return. Some days he might pick at something but by and large he’s been on starvation rations.
The sleeping did concern us and when he started complaining of a pain in his chest Lisa got very concerned. Fred said he could feel the battery coming on and it was hurting him. Unfortunately maybe the double jump last week was just too much. Possibly too, as his throat was sore, the extra pulse was making it worse. We talked about switching it back down a level and, even though that would entail a trip to Dublin, it would have to be done. Lisa spoke with Suzanne the VNS nurse, but she didn’t think his symptoms were related to the jump. By Thursday though Fred was very upset by the VNS pulse but after a good sleep that night he seemed to have put it behind him. I think that, maybe as he was now becoming aware of the sensation, with the higher pulse, the initial discomfort was just a side-effect, as was his Marlon Brando voice when it was first turned on.
We don’t know but the pain hasn’t been mentioned now in two days...
Yesterday for lunch I made him a white bread sandwich of rasher with lashings of mayonnaise and butter. The heart attack on a plate wouldn’t be his usual but I just wanted to get something into him. He looked surprised when I brought it in but devoured it saying “Don’t tell Mummy.” Of course Fred couldn’t keep it in and when Mummy came home the guilt got the better of him and he blurted out...
“Daddy gave me a white bread sandwich,”
Somehow I don’t think Fred has a career in espionage...
That was all he ate though for the rest of the day. For dinner I made his favourite creamy mushroom pasta but he turned his nose up at it...
“Maybe later,” he said.
Ruby had come home from school with four friends and Fred bucked up when he saw them. He was on strict instruction not to bother them, not that he was up for it anyway. The girls ate a big lunch and Fred hovered in the background, getting the odd stare from Ruby. For the rest of the evening they were in Ruby’s room getting ready for dinner. The ladies were celebrating mid-term by going out to a restaurant, very grown up of them. Fred was delighted to see them all dressed up before going out and approved of how they looked. With great pride I drove the five beauties to the door of the eatery and went home waiting for the text to come collect them. By nine they were all home, giggling and full of stories, Hannah, as always, worried about something. The days of boys taking preference for dates probably isn’t too far off but they’d want to be on top of their game to even get noticed by that gang of five. Proper order too, as Lisa would say.
This morning the girls came down for breakfast and Fred was delighted to hear they are staying another night. The comfort of having them around is great for him, even if he’s not allowed join in the fun. Jaden is due over this afternoon and that will be just perfect for the man. It’s been a tough week for him, no school, no appetite, no friends, sore throat, sore chest and being constantly tired.
It’s not easy being Fred.
Fred is downstairs watching Scooby Doo. More staring at than watching as he is wrecked after a cluster of seizures yesterday. Day twenty, almost made the magical twenty-one day mark, better than day thirteen last time round. It seems the entity that is epilepsy is doing a cycle of thirteen days followed by one in the low twenties. As long time observers of epilepsy it never ceases to amaze us how it seems to have a mind of its own. Despite our best efforts it always manages to beat us. That mind has a strong will too...yesterday we intervened with the Stesolid after number three in an effort to save Fred from a tough day but it came back to have its cut. Six more seizures our boy had to endure before he was left alone around 4pm.
Being the man he is Fred woke about 7pm, watched some Scooby Doo and alternated between Lisa and me, cuddling into us like a new born. By 10pm he wanted to go to bed and he slept well though he will need more rest today. As usual he wasn’t hungry for breakfast, saying through a raspy throat...”I’ll have that later.”
On Monday Lisa drove him home from school at the usual 1.15pm. I was in the kitchen making him soup for lunch when they drove up. Lisa had to help him out of the car and walk Fred into the house. He looked terrible, his face was almost green and his legs weren’t working. As Lisa walked him I fully expected the man to collapse in her arms. Apparently just as school finished the confusion had come on and the teachers took care of him until Lisa was on the scene. With her mother’s sense of concern Lisa was actually on the scene before the teacher’s knew it, she’d been watching the school and knew something was up by the movements of the staff. In fact Lisa had spent the whole morning outside of the school, though I had tried to convince her otherwise; she just knew...
Once on the couch we prepared Fred for the inevitable seizures that were coming. Put him in his pyjamas, get him to the toilet and then under a warm blanket, the usual routine. Lisa swiped him continuously with the magnet. When swiped the VNS will give out a thirty second pulse at .25amps more than it is set. So he is on .75amps and each swipe would give him a thirty second shot of 1mp. About every ten minutes is the advisable time frame. Remarkably after a snooze of twenty minutes or so Fred woke up, looking for lunch. The colour had returned to his face and he was a completely different boy from the one dragged in the door about half an hour earlier. Whether this had anything to do with the swiping we’ll never know but I’ve never Fred seen look so bad and not go into a cluster.
He tucked into a lunch of soup and a wrap. After downing the soup he looked for more so I gave him another bowl, without a wrap, one was enough. Fred complained but I said no...
“How about some toast?” He asked...
“Aww that’s not fair”
“I’ll give you half a cracker,” I tried, trying not to crack under that pleading look.
“How about two halves?”
So I gave him two halves.
Afterwards he slept for the afternoon. A big, deep sleep and he only woke when Ruby came in from school. That night he went to bed a bit later than usual but still got a good night’s sleep under his belt. We kept him home on Tuesday, out of habit more than anything else and he had a great day of it. That is until Lisa broke the news that Ms O’Se was coming round for class in the afternoon.
“What? I don’t want Ms O’Se,” was the indignant reply.
Thus the war began. The entente cordiale between mother and son broke down into an escalation of hostilities on all fronts. Diplomatic lines of communication were severed. All sorts of threats were issued on both sides but there wasn’t any sign of a breakthrough despite a call to the UN Court of Arbitration. Eventually with the clock ticking down to all out war Fred played his trump card...
“I have the confusion,” he said, lying back on the couch.
“Really?” his mother replied.
“Yes, really Mum,” he said looking sad.
This always brings on a dilemma for us. Do we believe him and put the rest of the day on hold or do we call his bluff only for Fred to go into a seizure a short time later. Of course we have to believe him; we want Fred to be aware of his epilepsy and to tell of us of any warning signs so we can protect our man. As any eleven year old boy worth his salt will do though, he will try and get out of school work. Lisa and I asked him over and over if he was sure. Yes he was. Lisa said she’d text Ms O’Se but he better be telling the truth because we needed to trust him.
As I had a few jobs to do I left the two cuddled up on the couch. But when I came back about an hour later Fred was sitting up at the kitchen table with Ms O’Se, working hard at his homework...
“I thought you’d cancelled Ms O’Se” I said to Lisa...
“No, I just pretended to, to see what he’d say when she arrived, he went in without a bother.”
“Do you think he was fooling us?”
Lisa shrugged her shoulders as if to say who knows with Fred. Who does? I went into the kitchen to put away the shopping and an alert Fred was almost sitting on Ms O’Se’s lap, ploughing through his homework. Shortly afterwards she left, they had done over an hour of work and she was really pleased with Fred. As I started to prepare dinner Fred appeared beside me...
“Dad?” he said, head down in a very contrite manner.
“Ok, you got me, I lied about the confusion,” he said, head still down.
“Promise you won’t do it again?”
All week Fred had been counting the days down to the trip to Dublin. Thursday and we had a couple of appointments at Temple Street. One for putting Fred’s VNS up another notch and another with the child psychiatrist team who wanted to get a picture of Fred and his family for an educational report. We headed off at 9.30am, the car not so full as normal; we were attempting to do this in the one day. As Ruby is doing her ‘mocks’ we didn’t want to disturb her study plans by being away for a night. Much and all as we wanted to visit Inchicore this plan meant we wouldn’t be seeing Conor and Cathy either. Fred thought we might but Lisa and I said that it may not be possible this time round.
With the meeting on Thursday and Fred getting the confusion on Monday it was a stressful week for us.
What if Fred had a seizure before going up? That would mean cancelling the appointments and waiting another month for the psychiatrist team. Anything after Tuesday would have meant he wouldn’t have been alert enough for them. What he had one in the car on the way to Dublin, Thursday was day 18 and we’d definitely be in the danger zone. The only option then would have been to turn around and go home. What if he had one in the hospital? They wouldn’t have let him home, meaning a couple of nights in hospital and Ruby disrupted. I told Ruby in that case I’d drive home to be with her so she could get on with her exams, but that would mean leaving the others in Dublin. What if he had one on the way home? That would mean a trip down the motorway with Fred seizing in the back and we brought all medicines to cover that eventuality...
In the end we got to Temple Street in one piece. After lunch in the Basement Cafe we headed up to see Suzanne, the VNS nurse. After hearing how well he was doing and that we weren’t heading away for another two hours Suzanne proposed going up a double amount. Up from .75amps to 1.25amps. If he didn’t react well she could turn it back down again and she would stick around until 5pm in case we needed her. The double jump would mean we wouldn’t have to see her for another month and this would coordinate nicely with the psychiatrist’s plans for a number of monthly sessions.
Beep went the magic wand, Fred coughed but all was ok. Suzanne was pleased with his initial reaction and sent us on our way.
In the psychiatrist’s chair it was actually Lisa and I under the spotlight. She wanted to get the complete picture from day one and before. We had to go into our family histories, our own past and that was all before mentioning Fred. The usual tears were shed as we went through the happy birth to his first seizure at nine months and the subsequent years. Fred was playing games, probably also being observed by the two. Of course the inevitable confusion hit, what a surprise, and Lisa couldn’t swipe him, as it wasn’t advised after such a jump in output earlier. So Fred cuddled into his Mum while we went through his life story and how epilepsy has impacted on us. The hospital visits, the ambulance trips, the move to Tralee, the effect on Ruby and everything else. They got it all out of us, tears and all.
Remarkably Fred slept through the confusion. Once the meeting was over I ran off to get the car; we needed to get him comfortable and away from the hospital, the last thing we wanted was a couple of nights on the ward. Driving back around the corner I half expected to see Lisa with a crowd around her, helping Fred back inside. But no, the two were standing on the pavement waiting and we shot off into the Dublin evening. Lisa got Fred comfortable and soon he was in a deep sleep. As we drove down the quays Lisa texted Suzanne to tell her all was ok with the double jump. Driving through Inchicore the car almost automatically turned up to Conor and Cathy’s but we had to head for the south. The traffic was ok and once beyond the Red Cow roundabout it was plain sailing all the way to Tralee.
Fred woke up just as I pulled in the Mayfield service centre but wasn’t hungry for dinner. He did want popcorn though, for some reason, so I got him small bag. With coffees for the parents, popcorn for Fred we headed off to Ruby. As we drove I’d look in the rear view mirror from time to time to see Fred’s face looking out at the passing traffic. It’s one of those reassuring sights I love; he’s awake and taking in the world.
The next day, Friday we tried to get back to normal. Lisa took Ruby to Dingle and I drove Fred to school. Denise had been off for a while and Fred hadn’t seen her for about ten days. The two of us walked in but no sign of Denise. Then from behind us she walked in...
“Hi Denise!” Fred exclaimed.
“Hi Fred, I’ve missed you,” Denise answered with a big smile on her face. She has been through some tragedy recently and she looked really happy to see her friend.
“I missed you too,” Fred said, walking away with her, taking off his coat as he went.
It looked like the two were glad everything was getting back to normal.
As was I.
Fred was due to finish early at school Friday. The school were going to a mass and we feared what the excitement of heading off to church might do to him. It’s something buried deep inside Lisa and me, a fear of the unusual for Fred, what might happen when he’s doing something out of the ordinary. The worry comes from past experience but, try as hard as we do not to allow it, the past still does haunt us. Just because Fred has gone down before doesn’t mean it will happen again. The other side of our worry has a more practical aspect. If he does have a seizure somewhere how easy would it be for us to get him out and safely home?
With this in mind I explained to Fred’s SNA that one of us would collect him at 11am. She understood. It was a miserable day and the idea of getting Fred back home early I have to say made me feel good. There is something deep inside, a feeling of having Fred safe under our roof while the wind howls outside that will always be with us. The late arrivals rushed past me and I closed the school gates knowing Fred was in good hands. As I got into the car I saw Rose, Fred’s teacher running towards me....
“Fred doesn’t have to go to the mass you know?” she said, “it’s in another classroom and lots of the kids will be staying with me.”
That sounded a bit different from bussing them across town.
“And,” Rose continued, “they’ll be having pizza afterwards, followed by a movie at 12.30. If you want he can stay on till 2.15 today.”
Now that was something completely new and sounded like a perfect day for Fred. Of course I agreed and asked if I could come too; I even offered to bring the wine, Rose almost weakened...
At home I waited for Lisa. The look of disappointment in her face was funny. Like me too she wanted to have Fred home safely at 11am. The sooner a week ends at school the better, for our own selfish reasons. However now not only was she not getting her boy home early, but he was staying on an extra hour. Oh the worry of being Fred’s parents; thankfully he’s not in the slightest bit aware of our madness.
The school was up to the high doh all week as they had an inspection from the Dept of Education. Normally we drop Fred a couple of minutes after everyone else, just as it’s easier for all involved. But with the inspectors on the prowl Fred was there by 8.45am, every morning. Not that he seemed to mind. The party on Friday, I think was to mark the leaving of the inspectors and to thank all the kids for their co-operation. I wonder what would have happened if one of the inspectors came back unexpectedly to find the kids gorging on pizza and the teachers in party mode. How would they explain that one?
As I said, Fred’s usual SNA, Denise, was off for the last days of the week. Her replacement is excellent but no doubt she was extra worried about our Fred. The school did excellently in getting such a suitable substitute on short notice. When I dropped Fred off on Thursday morning I was met by the principal Terry, teacher Rose and the sub SNA. It was like the handing over of a new Dalai Lama to the entrusted monks. Fred strolled off to his classmates without a bother in the world, which is testament to the great workings of the school in this normalization process. When all had been explained Terry walked back towards the school gate with me. In a different time this could only mean that a student was in trouble. For our Fred though there was nothing but praise.
We spoke of how well Fred has adapted and how much everyone likes him. How his school work has come on and how much Fred has improved sociably. It was one of the important factors in his treatment stressed by Dr Amre and Cathy Madigan when we first met with them, just twelve months ago. When Dr Amre said he saw Fred getting back to school and having a social life as more important than treating his epilepsy, I couldn’t quite see it. I did understand where he was coming from but we were so focused on his epilepsy, that cure and then normal life was how we saw it for Fred. Now though, after a comparatively short time, his approach makes much more sense. Amre said to me privately one day that he saw Cathy’s work as important as any surgery and the Fred of today is proof of his thinking. Terry seems very aware of this and it is through his hard work and that of the great school that Fred has developed into the boy they see.
The funny bit of the whole week was that Fred was the star of the show. When the inspectors asked the class questions in Irish, only Fred was able to answer. This is an example of how his brain works, things get stored away and he brings them back at the most unexpected moments. Also it shows how much he has improved concentration wise. At times it does feel that the constant fog which surrounds him is gradually lifting. His prowess in Irish comes from his days at Lispole School, now almost four years ago. Somehow he managed to drag it all back up for the inspector...something must have clicked from the speaking ‘as gaelige’ that opened up those memories for Fred. Much to the surprise of everyone. Olivia also told me how Fred was full of chat with the inspector when he sat in on their one on one session. Fred even got him to play a game, after making sure he was comfortable.
“I was best at school,” Fred told me one day, “I did really good.”
Long may it last.
Lisa and I have been getting a bit tougher with our man, just not allowing ourselves to indulge him too much. We have to remind ourselves, and Fred, that he is now an eleven year old boy. No more the easy life for the man. His parents have expectations and with a little nudging he’s getting there. Not long ago Fred would fight you if you suggested he do something himself but now he just gets on with it...
“All right my Dad,” he’ll say but after a couple of times he doesn’t even look for help.
Last weekend I looked at Fred and saw the eleven year old boy that wasn’t always obvious to me. He’s a beautiful, handsome, tall young man and with all the help that wonderful personality is breaking through to match his appearance. No need for his parents to mollycoddle him, at least not too much...
So this week I stopped helping him dress himself for school. By Friday he was doing it all himself, not allowing me to help at all...
“No looking,” he said when I came into the room.
Then a few minutes later the fully dressed boy made an appearance.
“Da nah!” He said proudly, shirt buttons done, shoes on and the jumper pulled down straight. The tie wasn’t fully under the collar but what boy cares about his tie? On went the coat, zipped up fully and the bag slipped over the shoulders. Don’t know which of us was proudest...
Fred has improved too with going to bed on time and with sleeping. Only once this week did he not go straight to sleep and when he was trying to drag himself out of bed the next morning I explained why. He nodded and even on Friday night, he was asleep by 9.30pm. Lesson learnt for the time being.
A big problem has been Fred’s speech and the bad habits he’s developed. Forming sentences has always been a problem but that has improved greatly with the social interaction at school. Fred still will take a few seconds to answer you but that is to do with his brain function more than anything else. One bug-bear is the habit Fred never broke of answering any question or instruction with why?
“Time for dinner Fred,” would be answered with “why?”
Or a “let’s go to the movies Fred,” would get a “why?” too.
This week I spoke to him about it a lot, as did Lisa...
“Ok, ok I’ll stop saying why,” the little man answered me as we went to bed Monday night.
As I was washing my teeth I could hear Fred talking in the bedroom and I opened the door a bit...
“I must stop saying why, I must stop saying why,” Fred was repeating over and over again.
The little man was really trying.
He doesn’t have to try to break Daddy’s heart.
That comes naturally.
Yesterday we had Jaden over, again. The two boys, under a blanket, watched Jaws; they had been watching Mr Bean but he must have being getting a bit pedestrian for them. Fred went gone upstairs to get his shark book, just in case Jaden didn’t have enough sharks in his Saturday.
This has been a bit of a tough week for Fred. The bug that hit last Saturday and the subsequent seizure cluster really took it out of him. As it happens, eight kids in his class had the same bug, surprisingly not Jaden, as I was sure he was coming down with it at the weekend. Breakfast on Tuesday was Fred’s first meal since Saturday lunchtime, a long time for our boy to go without food. Maybe he had a bit of chicken on Monday afternoon but it wasn’t much. On Tuesday evening Lisa made his favourite for dinner but that went untouched too. All week he hasn’t had an appetite come dinner time; he’d have his usual breakfast and lunch but no evening meal. Each evening I’ve asked him to come in for dinner but I’m met with a “no thanks.” Later on he’d pick at some toast with chicken...On Thursday he came as far as the kitchen table before saying, “no thank you,” and going back to the front room.
At school the teachers remarked on how out of it Fred was Tuesday and Wednesday. This was obvious to us too. It was difficult to rouse him in the mornings and all day we’d have to almost shake Fred awake to get a response from him. Looking back at it now it must have been a trifecta of the bug, the cluster and having his medicines trying to regain control of his brain. If, as I suspect, the bug caused his levels to drop, then the early days of the week were all about the meds getting back to work. This has happened before, notably after his appendicitis last winter where he went toxic only to be followed by a bad cluster. If you mess around with these meds, you can cause all sorts of problems. That’s why we try to be as regimented about dose times as possible.
Of course Fred’s sleeping pattern was thrown out as well this week. A couple of nights Fred still wasn’t asleep by 11pm which isn’t good. On Thursday he fell asleep on his mother’s shoulder not long after 8pm, just leant in and dropped off. The comfort for a little boy of the scent of his mother must be something else. The flip side was that he woke as I left at 5.30am Friday morning, chatting away as if it was midday. Apparently he fell back to sleep a bit later but with me away he had to go on the Ruby school run with his Mum. Though he did have another nap on the way back from Dingle.
By Thursday he seemed back to normal, something which Denise and Olivia both remarked upon to Lisa. The two “ladies who care for me”, as he described them to Jaden today, noticed how off form Fred was earlier in the week and they were glad to have their boy back to normal on Thursday. Funny Fred can’t really work his charms on Olivia like he could on Elaine last year. If Fred wasn’t feeling too good when with Elaine he’d get the duvet down and the two would cuddle under it while having an easy day of work. With Olivia though it’s all work from the get-go, no slacking and no malingerers tolerated. A bit of a shock for Fred but just what he needs at times. One day he was looking at me as if to say, “Do I have to?” while Olivia was telling him what homework they were going to do. All I could do was smile at his disappointed little face...
“But Ms O’Se,” I heard him say as I closed the kitchen door, “we did that book at school.”
“I know Freddie,” was the answer, “but we’re doing it again now.”
“Oh, all right,” the resigned tone to Fred’s voice telling that he knew resistance was futile.
The welcome home I got each evening I was away this week was just lovely. On Tuesday and Friday I had to make trips to Dublin and apparently Freddie missed his Dad. Friday night as I walked in the door he charged at me with his arms out, nearly knocking me off my feet but enveloping me in the biggest hug ever...
“I missed you,” the little voice said from the squashed face in my tummy, “you were gone forever.”
I remember missing my Dad at the same age, but he’d be gone to New York or San Francisco for a week; all I did was go on a course in Dublin for the day. Somehow I don’t think I’ll ever be able to leave my man for too long. This morning I had a dream where we lost Freddie when on a day out to a seaside town. We looked everywhere, through all the houses, on the beaches, down the terrace lined streets but no Fred anywhere. Somehow I clicked that I was only dreaming and woke to him lying out on his back, not having a care in the world. Later as we drove over to collect the J man Fred told me he had nice dreams last night, about Godzilla monsters...No doubt Freud would tell us that my dream was a reaction to being away from Fred but what would he say to Fred having nice dreams about Godzilla monsters?
After we collected Jaden the three of us drove off to collect Ruby. She’d been on a night at the cinema in Dingle, followed by the girls getting a Chinese takeaway for the sleepover. Jaden had his tablet with him and the two kept themselves amused while I drove. At Ali’s house I sent the two to collect the girls. Ruby came out laughing. They had the curtains drawn while watching TV. The curtains didn’t reach the floor so all Ali and Ruby saw were two pairs of little feet walking along the path to the front door...the cutest thing ever, the girls thought. Hope the boys can keep the girls saying those sort of things in the future...
Coming down off the Conor Pass Fred said to Jaden...
“Welcome to Dingle,”
To which Jaden replied,
“I’ve been here before Freddie.”
But that didn’t stop Fred giving Jaden the whistle stop tour of all the shops and streets. He also gave Jaden a brief history of our time there and finished it by saying,
“We quit Dingle.”
Just like a rock star on the road, he moved on to Tralee when he’d seen all Dingle had to offer. In truth Fred still wonders if we are moving back one day and often asks if Tralee is our home now or are we going back to Dingle. The move at the time was very sudden. From that afternoon in early August 2011 when he left in an ambulance, I’m not sure if Fred spent more than a couple of nights in Dingle again before we moved to Tralee. A whirlwind at the time and it must be difficult for a young brain to take it all in. When I go back now it seems strange that we no longer live in Dingle and I think Fred feels the same.
On the way home Fred showed Jaden his old school and told him the names of the friends he made when there. The beach where we used to swim was pointed out too...
“That’s the road to Amy’s beach,” Fred said, referring to his friend who lived nearby.
All in all it was great for Fred to be the tour guide, showing his friend where he once lived. Sharing his memories with Jaden probably put a bit of context to Fred’s life for his little friend.
Back home the two played, laughed and Jaden even had a nap. It’s lovely that Jaden can feel relaxed enough with us to take a snooze on the couch. Fred made him comfortable and went back to watching Mr Bean. After dinner Fred and I drove Jaden home, our man nibbling away at the sweets Lisa gave him as he went out the door. He got out, gave me a tired thank you and Fred said goodbye.
On our way home Fred and I drove through the streets of Tralee. Lisa makes fun of me for taking any excuse to drive around town but I love it, you never know what you might see.
As we went through the centre Fred said,
“I like driving around town at night Dad...”
It must be genetic.
Now it’s Sunday morning and I’ve just had to break up a row between Fred on one side with his Mum and Ruby on the other. Fred was just getting going as I came down the stairs but Ruby is a tough opponent, far tougher than the mother. There was also a row with his mother about bedtimes last night. Fred also ate a full dinner with Jaden.
Things are definitely getting back to normal in Ballyard.
On Saturday afternoon Fred had Jaden over. The two just take over the front room, toys everywhere, laptops blaring, the TV on and plates of food. About 3 O’clock I had to move them on as there was football to be watched. The boys weren’t happy but Lisa soon had them sorting Fred’s old toys in the attic and that kept them busy for a while. When bored with that they came down to the front room again and Fred asked if they could do some painting. Jaden seemed a bit surprised, maybe he saw painting as something you only do at school, but he turned out to be a beautiful artist. Painting kept the boys busy until dinner time and Jaden was very particular about taking care of his art, so as to take it home.
As I cooked dinner the boys settled down to Mr Bean. The two were cuddled up under a blanket, Fred as always looking for the comforts and nearly squashing our Jado into the corner of the couch. Soon though he started to feel sick and Lisa had to take over Jaden’s place. For the rest of the evening a bug took hold and our Fred spent a lot of time in the bathroom. At about 8 O’clock I took a well-fed Jaden home leaving Fred asleep in his mother’s arms. Our man was a bit quiet on the journey home and I wonder if the bug was catching him too.
Fred and I went to bed about 10pm. He had perked up a bit, probably the worst of the bug was over but he was a wreck of a man. The worry for Lisa and I was that he had vomited a lot within six hours of having his evening meds. My understanding is in those six hours is when Fred absorbs the meds into his system. They have a half-life of six hours, giving them that time to be absorbed and to keep his levels constant until his next dose at 6am. If we keep giving his meds at regular intervals he can keep a constant therapeutic level in his system, thus keeping the epilepsy at bay. That’s the theory anyhow.
When Fred and I went to bed I read him a couple of stories but he was fast asleep by the time I’d finished the Smartest Giant in Town. I rolled him over onto his pillow and read for a while. At midnight I turned off the light, kissed him goodnight and hoped for the best. Sure enough not long after 1am a seizure struck. The usual tonic clonic that we had hoped was a few days away in the current cycle. Not to be and day thirteen is the mark this time round. Lisa took over guard, sending me back upstairs. She swiped his battery with the magnet, to give him the shot of extra electricity to the brain.
We’ve been doing so since Wednesday. Suzanne had advised that once five days had passed to begin a routine of daily swipes, to get into good practice and to get his system ready for the next step-up in a couple of weeks. Is it making any difference yet? It’s difficult to say and really only time will tell. Lisa has been doing it three or four times a day and at least there haven’t been any downsides yet. You have to feel his chest for the VNS and then run the strong magnet over it in a criss-cross pattern. The criss-cross is to make sure you find the VNS with the magnet. Whenever I feel for it I think of Fred’s reaction when he first discovered it himself...
“A battery?” he looked shocked, “I don’t want a battery in me!”
“That doctor put a battery in me when I was asleep?”
A lot for anyone to take in really; a live, pulsing battery connected to his brain, all done when he was knocked out.
It’s a wonder he can sleep in peace at all.
The battery in my old car failed me this week making Fred and I late for school. He was actually disappointed to be delayed which is a far better reaction than when we were hunting him out the door before Christmas. As we had to wait for Lisa to come back from dropping Ruby we were too late for Ms O’Se, his resource teacher. She comes around the house in the afternoons so he couldn’t escape her fully. The coming round the house bit he’s still not too fond of, can’t blame him really. What little boy wants school work to follow you home? When we got to school the whole class seemed delighted that Fred had made it. He wasn’t shy going in which is an improvement and he just walked away from me, taking off his coat as he went. Jaden was beaming at their desk, seemingly delighted the have his friend to keep him company. Fred didn’t even say goodbye but then he had Denise and Rose fussing over him and Jaden to chat with, what did he need his old Dad for?
On Tuesday afternoon we went shopping. Lisa drew up a list and off went around Tralee. In the butchers we got the dinner and Fred got a lollipop....
“How did I just do?” Fred asked when we got back in the car, as he likes a bit of reassurance that he did what he should when we’re in the shops. At times he likes to know that he’s asked the right questions or hasn’t misbehaved. It just shows how removed from live he has been for the last few years.
At the fruit and veg shop he asked for green bananas. The ones on display weren’t green enough so the man, laughing, went off down the store room and came back with four of the greenest bananas I’ve ever seen.
“How’s that?” he asked.
“Thank you,” said Fred, breaking into one.
We finished off our list and headed for Ballyard. At home Fred had a couple more bananas before dinner, just in case they ripened too quickly in the heat of the kitchen.
On Wednesday Fred was in the front room dressing for school and I was in the kitchen getting his lunch ready. All was quiet, then a load of banging and clattering came from inside. I didn’t want to rush in, I heard Fred moving about so I knew he was ok. So I strolled in about a minute later and asked if all was ok...
“Ah nothing my Dad,” Fred said as innocently as possible, trying to block my view of the sideboard by the window.
Behind him I could see the broken tall candlestick, a dinosaur and one of his planes. He must have been having a battle between the dinosaur and the plane, using the candlestick as a prop, when the ‘accident’ happened...
“Show me...” I said.
“Promise you won’t be angry?” Fred asked, looking up at me and still trying to block the scene of the crime.
“I won’t, just let me see if I can fix it.”
Fred stood away and the break was clean, nothing a bit of super glue wouldn’t fix. Fred saw I was ok with the damage so he moved on to his next worry...
“Promise you won’t tell Mummy,”
The little man gulped, he was off to school so it was all in the lap of the gods as far as he was concerned. As it turns out the break actually wasn’t that clean and Lisa spotted the slightly twisted finished job as soon as she walked into the room. It also wasn’t the first time Fred had broken the candlestick so the shock wasn’t that bad. Lisa tried teasing Fred when he came home about the damage but I think he knew by the tone of her voice that all was forgiven.
Fred knows his Mummy.
It was his Mummy who cared for Fred yesterday, as she always does so well. About 7am Fred had woken looking for me so his parents swopped shifts. At 8.30 he had his sixth seizure of the cluster but we continued to swipe him as we wanted to avoid the Stesolid. The gap between seizures good and manageable. Not long after that seizure I got a call from Brian down in Cork...he had a spare ticket for the Munster match at Thomond Park and did I want to go...Lisa insisted I do so, she had things under control. What a woman....
When I was having my breakfast Fred came downstairs, a bit shook but he wanted to get up. Far better to be up and about than spending the day in bed. I set off about 10.00am and he was fast asleep in his mother’s arms. He had a couple more during the morning but by 1 O’clock the cluster was over. Lisa had intervened with the Stesolid eventually. The swiping may have had some effect, widening the gap between seizures but it’s all too soon yet.
When I came back from my terrible time at the match, Fred was awake but soon he fell back asleep in my arms. By 10 o’clock the two of us were cuddled up in bed and all was ok with the world.
Now this morning he’s very dopey but up and about. He’ll sleep a bit, eat a bit but it will be tomorrow before all will be as before the bug got him.
Fred will get back to his routine and we’ll get back to normal.
Whatever that is.
Fred fell asleep very early yesterday evening. Unusual for him, but he has had a busy week and Jaden was over for the day. At about 8pm he cuddled up to his Mum on the couch and before we knew it he was sending up zeds, conked to the world. The problems began when he came up to bed with me, at just after midnight, as he woke again. If I wake from a deep sleep I find it very difficult to get back there again and Fred is exactly the same... ain’t genetics a curse, as someone once said. By 1.15am I was wide awake as was Fred beside me, the two of us unable to sleep. Fred as he’d woken earlier, I ‘cos he’d woken me with his restless sighs. Fred was sent up to his mother...
At 3.10am Fred was back in the bedroom door. As I’d been unable to sleep I was up reading and actually half thought that we had a burglar when I heard the gentle footsteps approaching my bedroom door. In came the man...
“What’s happening?” I asked.
“Mummy sent me down, she’s an angry woman,” was Fred’s answer.
In he got beside me with strict instructions to go to sleep...
“All right my Dad,” Fred replied.
By 4am I was reading Fred stories in attempt to get him to off to the land of nod. No luck. In a shameless play of bribery I started telling him of the delicious Sunday breakfast I’d make if he’d only go to sleep...
“Rashers, omelette, toast,” I said.
Fred was silent, maybe it had worked, but then
“Go to sleep or you’ll only be getting a glass of water.”
“Ok my Dad,”
At 5.10am, Fred rolled over onto his side, he was fast asleep. Eventually.
Now I’m wrecked.
Monday was day 17 in the recent stretch. A good break for us all. Just after lunch Fred was talking to Lisa when a seizure hit. No warning, no confusion, though he had been jittery earlier in the day and was off his food a bit. Luckily the two were sitting on the couch so Fred only had to fall into Lisa’s arms. The rest of the day went as so many have gone before but not as severely. Lisa swiped Fred’s battery with the magnet from time to time and in all he only had five big seizures with a few frontal lobes in between. He roused himself occasionally and compared to other seizure days it wasn’t too bad. He had his fifth in bed about midnight and Lisa gave him a shot of Diazepam with a swipe of the magnet thrown in for good measure. The man slept soundly for the night, waking in the morning someway normal but not ready for school.
Whether all this points to the VNS working we don’t know, it’s far too early to say plus we’ve had good days before. The true sign would be regular long seizure free breaks and seizure days just like Monday past. On Friday we were in Temple Street for the latest increase in the output amps and we discussed the changes with Suzanne. She seemed pleased but was more interested in the amount of seizure free days. 17 days was an improvement on the 13 days previously but that was way down on the 23 from the time before again. The mantra is still that we are in the early stages; Fred’s output is at .75amps and they are looking at getting to 2amps. The increment stages are set at .25amp each month so were are at least 6 months off where Dr Amre wants us to be.
Time will tell.
This week we celebrated Fred’s birthday. His 11th and the first since we came under Dr Amre’s care. The improvements of the last year, the vast improvements, have all happened since just after Fred’s 10th. Actually we had our first trip to Temple Street this day last year, we went up for a week and so much has happened since. For Lisa and me we weren’t just celebrating Fred’s birthday but also the fact that he’s come so far in the last year.
For one he celebrated his birthday at school. There wasn’t any school last January, something Fred would happily go back to if he could. Denise was delighted when I told her and Fred came home with chocolate in his pocket, a present from Ms O’Se. Ruby asked him what did the kids say and Fred told her that the class sang Happy Birthday to him. So sweet.
Another difference was Fred and I went to the cinema. Another venture that would have been unheard of last time round. Off we went to the 2.10pm showing of Walking with Dinosaurs. Fred got popcorn and we found our seats in the theatre. We were the only two at the movie; it was like a private showing just for Fred’s birthday. We pushed up the armrest between us and Fred stretched out over me, just like at home. For the next couple of hours we laughed and munched our way through the flick. Afterwards we looked at the posters in the lobby, deciding which movie we’ll see next. I’ll have to arrange another private viewing though, it was so comfortable...
Afterwards we went to the toy shop to get his present. Yet another trip that we wouldn’t have done last year. Fred had money in his pocket, a present from Granddad Jimmy and Rose. He was determined to spend it but Fred is like his Mum, he likes to wander around a shop over and over again before making up his mind. Up one aisle we went, down the next and up the other one before repeating the trip. After about 6 or 7 of these wanderings I put my foot down and made him decide. Off he went to a shelf we hadn’t gone near, to get a green dinosaur, one we’d seen nearly six months previously but Fred hadn’t forgotten. The money from Ashtown went on that and his parents bought him some adventure figures that could battle the dinosaur. As it happens the dinosaur was a Gorgosaurus, one of the stars of the movie we’d just watched. Back home the toys were unpacked and war began. A perfect birthday afternoon.
That evening Lisa and Freddie set about baking his birthday cake, a chocolate one as requested. While they baked I went off to get the ingredients for Fred’s choice of birthday dinner, Creamy Mushroom Pasta, his favourite...by six o’clock all was ready, Ruby was home and we sat down.
The table was set, candles were lit and a big bowl of Creamy Mushroom Pasta took centre stage. Just to add to the indulgence I made some garlic bread. It was wolfed down, Fred as quiet as could be, happily eating his favourite meal. The scent of garlic filled the air mixing with the melting wax like a real trattoria. Gorgeous boy, only gorgeous and all was as relaxed as any boy’s birthday should be.
Once all the pasta and garlic bread was gone the lights were turned off. Lisa placed the cake on the table with eleven candles burning, it looked so perfect. We sang ‘Happy Birthday’ and the look in Fred’s eyes was beautiful, he was loving his birthday. After a big gulp of air Fred blew out all the candles in one go and we set about Lisa’s beautiful cake. No one spoke; we were too busy eating again.
When all was finished Fred kneeled up on his chair, wiped his mouth and looked at the three of us...
“Thank you for the great birthday,” he said.
There wasn’t a dry eye in the house.
A few minutes later he gave me a big hug and in my ear he whispered...
“You make me so happy, you’re great parents.”
I couldn’t answer that one, my throat had closed up and my eyes were pools of tears, I just hugged Fred tighter to me.
On Thursday evening Fred had a second party. This time we were in Conor and Cathy’s house in Dublin, up for Friday’s meeting at Temple Street. As it was Fred’s birthday we got a Chinese takeaway, another of his favourites, especially the prawn crackers, or the white crisps as he calls them. All was eaten with gusto, another great birthday meal.
After the meal more candles were blown out and we had more of Fred’s birthday cake, Lisa had brought it with us. Fred got hugs and kisses from his favourite Dubliners it was a lovely night all over again, the man shy at being the centre of attention but loving it too. He got a present of a Godzilla magazine, which he was reading still over breakfast this morning.
All that happened this week wouldn’t have been possible last year or previous years and for us that is just wonderful.
Now our lovely, wonderful boy is growing up, dealing with his condition but loving his life.
Happy Birthday Freddie.
As our holidays draw to a close none of us want to think of Monday. Back to school means driving and getting up at 7am. This morning I think Fred didn’t rise till gone 10am, a far cry from the days Lisa and I would be dragging him out of bed at 6am, in some mad hope that it would keep the epilepsy at bay. No, this morning the bleary eyed little man wandered into the kitchen, hair all over the place and stretching himself into the day. So come Monday morning a full week of early rises will begin and we’ll be back to what we call normal.
It’s been a great last week of holidays though. Outside of the lie-ins we’ve had plenty of visitors and plenty of fun to keep the winter blues away. On Friday we reached day 14 seizure free, which of course was wonderful and it’s always great when he passes the previous times total. Just before Christmas he only made it to day thirteen. Only is relative here as ‘only thirteen’ would have been “we are so happy to have made it to day thirteen” this time last year. The significance is that if he’d slipped to twelve days or even less we would have had a real worry on our hands. No one wants to go back to those days and for the moment that somewhat shorter gap may have just been a blip. This week we go back to Temple Street for the next step-up in the VNS output and we’ll see what that brings...
Monday saw the much anticipated visit of Auntie Claire and Boonie. All weekend Fred had been looking forward to seeing Claire and showing off what he got for Christmas. For most of the day he was wondering what was taking her so long, the little man not yet used to Auntie Claire’s ways...
“I’m so excited about seeing Auntie Claire,” he said to me first thing...
“When’s Auntie Claire coming?” was the question by lunchtime...
“I’m getting bored of waiting for that Auntie Claire,” was the word by mid-afternoon, accompanied by a big sigh.
Eventually by about 7pm the party arrived and Fred nearly turned himself inside out trying to get to the front door. The excitement was unreal. Auntie Claire wasn’t in the door before she was told of the great Santa Claus and what he brought. Of course Wolverine, Batman and Godzilla Rex were dragged out before we sat down for dinner but Auntie Claire took it all in her stride.
It was a great evening though. Plenty of food was eaten and the last of the wine was polished off. Chatting, laughing and telling stories are part of every great meal, elements that weren’t missing Monday night. To top it off Lisa Skyped Auntie Rudi in Minnesota so the three sisters got to chat and Fred had a chance to show his toys to his American cousins. By the time I took him off to bed Fred was well tired but he was worried that Auntie Claire would be there when he woke up....
“Dad? Can Auntie Claire stay for breakfast?” he asked as we went upstairs.
“Can she stay for a long time?”
When Auntie Claire did leave the next day Fred was sad, he said his goodbyes but I could see the upset in his eyes. Poor little man, the great days never last long enough
To cheer him up Fred and I went to do a few jobs around town. We found a parking spot outside the bank and nipped in to use the self-service ATM. I tried teaching Fred how to use it and he picked it up fairly quickly. Afterwards we went over to Eason’s to get Fred a comic. Unfortunately they had a choice of super-hero titles, six in all. This meant Fred had to go through each one. It’s not easy picking Ironman when Wolverine and Spiderman look just as good. Eventually Fred plumped for Spiderman, why I’m not sure, but my patience was wearing thin. I gave Fred the money and he paid the lady, nearly forgetting his change. For me just being in Eason’s, doing father and son things was great.
Lisa called as we left, we were having Jaden over. Freddie was delighted with the news. We drove over to collect him but when we got to the house it was all shut up, another family enjoying the peace no doubt. Fred got out and ran over to knock on the door. Jaden’s little brother let him in and I sat waiting. Normal life, you can’t beat it. After a few minutes Fred emerged with Jaden in tow and the two friends sat in the back, already playing a game on the J-man’s tablet.
Back home, as usual, Jayden just breezed in and took up his place on the couch, saying his hellos as he got comfortable. The two got on with it, sometimes playing, other times doing their own thing, other times being fed by Lisa or just relaxing watching a movie.
For lunch we had a visit from Uncle Bill and Auntie Chrissie. Again it was great to have family over, more laughing and more stories were told. Fred was too busy with Jaden to pay much attention but the two boys ate their fill of everything, popping into the kitchen whenever they felt the need.
All in all it was another great visit. We said our goodbyes and Happy New Years late in the afternoon. Jayden however just didn’t want to go home. Eventually about 8pm Lisa got him out the door, with a cake in hand. On the way home in the car he asked if he could come over again the next day...we gave it a skip as it was New Year’s day but he was over again on the 2nd. It’s great for Fred; Jaden is the close friend he hasn’t had for years now. Recently when we were driving back from Dingle, after collecting Ruby, Fred was pointing out the houses where his friends from his time in Lispole School lived. Fred still remembers them, I wonder if they remember him?
Someday we’ll find out.
The one thing that we’ll have to get back to next week is regular sleeping. Our patterns are way out of sync and Fred has been all over the place. New Year’s Eve we all went to bed about 11pm and I tried explaining what New Year was all about to Fred. Without the fireworks it wasn’t as big a night as last New Year. In the end he got the concept of a new year but by the time midnight came around he was still awake. It was very quiet but you could hear the bells of Tralee’s churches ringing in 2014. The two of us sat up in bed listening, it was a beautiful sound.
After a few minutes Fred decided he couldn’t sleep and once more set off to find his Mum. This time he spent the night with her and I had the luxury of a full bed to myself. The joy soon wore off ...I missed my man and his legs wrapping around me, his arms enveloping me in their love.
On Monday it will all be back to normal.
Somehow I can’t see Fred slotting back into a bed routine too quickly and his mother won’t be pleased.
There will be swearing and fighting.
Oh the joys of a normal life.