The Verling Family Week My family's weekly life, dealing with everyday events and my son's epilepsy

19Oct/140

Waxing Lyrical

Fred, along with everything else in his life, gets wax build-up in his ears. Once a year he has to get it removed and his annual service was due this week. On Tuesday morning I collected him from school at 11am and we drove over to the hospital. As is the practice now I didn’t tell him in advance, as that would be all he would think about, to the detriment of everything else. So for the short journey Fred kept asking why he had to go to the doctor, did he have an infection and would he have to get an injection? Even when we were sitting in the waiting room the questions continued; who what where when and why; the five ws of investigative journalism are well known to our Fred.

The ‘noises’ in his head had started a few days previously and were a sure sign that the trip was warranted. We were lying in bed one night when he shot up, looking around and looking scared.

“What is it?” I asked.

“The noises are back,” he answered,” I can hear Rugrats in my ears.”

Why Rugrats I don’t know but then Fred said he could hear the radio too. Off he went to his mother’s bed where he slept soundly, apparently the noises only play in our own bedroom.

The doctor, who tends not to say much and if anything is a bit wary of Fred, did his job and took enough from Fred’s left ear to start a cottage industry making nightlights. Fred oohed and aahed but when the procedure was over he was delighted. The revelation of being able to hear clearly again was obvious and he was delighted too that ‘the noises’ were gone.

Leaving the doctors there was a big smile on his face, he was looking around taking it all in, as if he’d been locked away in a darkened, sound-proofed room for a month.

“That’s better Dad, I can hear again,” he said.

Back at school he walked in, leaving me at the door and I nodded to Denise that all was good. When I collected him after school Ms O’Connor came out to ask if all was ok. I explained why we went off and she started to laugh. Apparently when Fred had settled himself again he looked up at her at the top of the classroom and exclaimed;

“I can hear you now Ms O’Connor!”

We had another trip to the doctors this week as well, this time for his six month check-up with Dr Shahwan at Temple Street.  At 7am we left the house, Fred a bit bewildered at being woken so early, again we hadn’t told him of the trip. With a minimum of fuss the car was packed with the essentials and not far outside of Tralee Fred curled up to his Mum for more sleeping. Thankfully he slept until beyond Kildare which meant he was fresh by the time we got to Temple Street.

On the way up Lisa and I discussed what we wanted to talk about. Our main concern was the decreased intervals between seizures and the gains we had made in seizure severity seemed to have faded too. This we were linking with the changes Suzanne had made to the VNS output at the clinic in August. The output frequency had gone from every five minutes to every three minutes.

The waiting room was packed with kids of all ages. A big change in Fred that I noticed was that on previous visits we’ve had to keep him seated and not to be making noise or disturbing other people. This time however he sat still, watching the other kids and being a grown-up boy. A small improvement but a sign that Fred is maturing. When our time came he went to get his weight taken and also sat still in Dr Shahwan’s room. There was a time he’d be pulling at everything but all went peacefully enough.

Dr Shahwan was interested in the improvements Fred had made; how well he was walking, talking and looking like a young man. This is a big part of Dr Shahwan’s approach, to make epilepsy almost secondary and get Fred a life where he develops fully, with epilepsy just being a condition. As he hadn’t seen our man in six months Amre was delighted with the patient standing in his room. When I said that it was two years since we first met Amre couldn’t believe it. At times we too lose sight of the improvements over the last couple of years.

Over this weekend I’ve tried to take a back seat and watch Fred. He is a different boy, walking tall, talking and not as argumentative as he was over the summer. Of course we don’t know how long all this will last or if it is indeed a permanent step. We too have being slowly trusting him to do things on his own and to tell us if all is ok.  The outcome of the meeting was to let the VNS as it is, see if the few bad intervals are just a blip and will Fred return to the longer gaps. Dr Shahwan was anxious for us to see the bright side, the long term improvements and not to get sidetracked by what may only be temporary setbacks. The glass half full approach.

After the meeting we had the traditional lunch in the Basement Cafe and before setting off for home. Lisa and Fred slept for a while and we were home by six, a long day but at least we were home. For a treat we had a Chinese takeaway at which Fred nearly fell off the couch with the excitement when I walked in with the white bag.

Later Fred was watching a DVD when he turned to Lisa and asked:

“Do you miss your Mummy?”

“Of course,” answered Lisa.

“Well she’ll always be with you, in your heart,” Fred said, holding his hand over his own heart.

Where he got that from I don’t know but that boy is always breaking our hearts

Of that we are sure.

 

 

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12Oct/140

Don’t Panic

Since Wednesday live has been fairly normal in our house. Fred went back to school as if nothing had happened. The teachers and pupils all looked at him with concern but they needn’t have been; Fred had bounced back as if nothing had happened.  The hospital, high temperature, chest infection had all been forgotten, Fred was back and that was all that mattered. Kids seem to take everything in their stride and just get on with life. Certainly our Fred just walked in the gate and past Denise as if to say ‘all right let’s get this over with so I can go home again.’

As he walked in Denise, looking concerned asked:

“How are you Fred?”

“Oh fine,” Fred said as if he’d never been away.

You got to admire those powers of recovery.

Before Fred had involved himself in the latest drama we had planned to go on drive and get a hot chocolate on the way. So on Wednesday afternoon the two of us set off to do a few jobs and get a cup of hot chocolate. We parked up in town and walked over to get some money from the cash machine. After getting the messages we set off on our drive and some drinks for ourselves.  Driving down the street I spotted a friend and stopped to say hello. John hadn’t met Fred before and was delighted to eventually get to shake his hand.

“Where are you two off to?” John asked.

“Oh to get some hot chocolate in a cup, a proper cup,” said Fred, doing the movement of holding up a cup by its handle, “and a coffee for my Dad, in the restaurant.”

It seemed that Fred wanted a sit down hot chocolate and the idea appealed to me too. So on saying goodbye to John we set off back down the mean streets of Tralee and parked as close to the Grand Hotel as possible.

The two of us approached the fine doors of this old hotel and Fred said “but this is the restaurant for fish soup.”

“Yes,” I said, “but they also do hot chocolates.”

“Cool,” Fred said pushing open the freshly polished, heavy door.

Inside we sat at the high stools around a small table. Fred loved it looking around at all that was happening in the busy restaurant and soon the waitress who seems to have been there forever, came over to take our order.

“Excuse me,” said Fred, his manners shining through, “can I have a cup of hot chocolate please and a cup of coffee for my Dad.”

The order was taken and we sat waiting. Soon afterwards a big mug of foamy hot chocolate topped off with marshmallows was placed in front of the man. My cup of coffee looked inadequate in comparison.

“Wow,” said Fred, the eyes popping out of his head. For a minute or so he just sat looking at it, stirring the marshmallows around the foam, smiling in anticipation.

There was also a biscuit to with it and I gave Fred mine saying:

“Don’t tell Mummy.” That always adds an element of indulgence to a trip out.

“I won’t,” answered Fred without looking up.

For the next while we supped our drinks and looked around at what was happening. Fred asked about the beers and what the different taps served. I tried to explain that the black tap served Guinness which was the best drink and the other taps served only lagers and ales.

“They would make you sick?” asked Fred.

“If you drank too much yes,” I answered, without claiming any prior knowledge.

There was a man sitting at the bar, a man I’ve seen many times around town. He always wears a suit with a fine flat cap over his head of grey hair. In winter days he has a black great coat on and he strides around with the gait of a gentleman. Once I pointed him out to Lisa and said it looks like he comes from “good old stock.” That phrase always comes back to me when I see him and spotting him sitting at the bar of an old hotel seemed to fit my image of him perfectly. The cap was on but the great coat was hanging on the coat hook, like a gentleman would, not draped over the back of his seat like others.  He ordered a pint of Guinness which was a perfect example to show Fred of how a pint needs to be poured and left to settle. Fred watched the process, fascinated with the black pint and the collar of white cream forming at its head.

When our time was up, our drinks drank, I suggested we go. Fred didn’t want to leave, he was loving the watching, the observing of the habits of a hotel bar on a wet afternoon, the people coming and going and so was I. It was time to collect Ruby from school though and leave we did.

Back in the car Fred said:

“I liked it in the restaurant Daddy, can we go back again?”

“Of course,” I said, delighted that it had all gone so smoothly.

On Friday evening we had a few jobs to do, in and out of the house and by 5.30pm it was just Fred and I catching up on time while the girls went to the gym. It suddenly occurred to me that we’d forgotten Fred’s five o’clock medicines. It’s important to keep to a regular schedule with the meds and with all our jobs we’d forgotten the evening dose. Fred swallowed the pills and went back to watching TV while I started on dinner.

 

 

When Lisa and Ruby came back I went to off-licence to get some beer for a night out. One of our five-aside football players had snapped his Achilles tendon while on the pitch last week and as he couldn’t go out it was thought we’d bring the beer to him. A pure act of selfless care if there ever was one and Finbarr was only too happy with the arrangement.

When I got back with my box of beer Lisa was in a terrible panic. Fred was sitting up looking at me on the couch.

“You gave him his medicines and so did I, before I went out,” Lisa was saying, checking on a fairly dazed looking Fred.

Those meds are strong and the fear of an overdose chilled me. Liver function is the usual side effect but you never know with the meds. Stupidly the two of us were looking online which only gave us the worst case scenario, cardiac arrest, liver failure and you name it.

I rang Temple Street.

They put me through to the reg on call and the first thing she said was;

“Don’t panic this happens to parents all the time, just tell me what he’s had,”

This I did and she went away to check what to do.

After a minute she was back...

“Well what you just gave him would still be under his daily allowance so you’re way off an overdose,” the relief was massive, “the only thing to worry about would be a difficulty in breathing from the Rivitrol, very unlikely given the small amount taken and that would have happened after a few minutes.”

“Thank you so much,” was all I could say. I had the phone on speaker and Lisa standing beside me visibly relaxing as she listened.

“One thing is certain he won’t be having any seizures tonight,” the doctor said as we said goodbye.

She doesn’t know our Fred, I thought.

There never isn’t a moment of drama in our Fred’s life.

 
 

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8Oct/140

Normality Reigns Again

Today is our first day of normality this week.  On Friday last Fred came home from school with a sore tummy; when the phone rang and I saw the school’s number I feared the worst. Knowing that I was probably scared by seeing their number, the first thing Denise said was “don’t worry everything is ok, it’s just that he’s complaining of a sick tummy.” When I got to the school Fred was ready for me, bag on his back, jacket in his hand. Ms O’Connor joked “I suppose he is allowed to get sick too. We are always so worried about him that we forget that sometimes.” It is very true, we forget that Fred is just a normal boy with epilepsy and it is important not to let him be defined by his condition.

In the car home Fred was feeling very sorry for himself but said he didn’t have confusion, just “a sore tummy.” Back home he changed into his pyjamas and settled in under the blanket. This was just before 1pm and he snoozed for a while, waking before 2pm...

“Can I have my lunch now?” he asked.

All fine there I thought and made him a small, light sandwich. Before Ruby came home at 4pm Fred fell asleep again, this time into a good, deep snooze. Lisa came in after 5pm and seeing him laid out on the couch she feared the worst. For once I was glad to report that all was relatively ok, just an illness for a change.

Lisa though did fear the worst, that the sick tummy was a portent of worse to come. Fred proved her wrong, waking a bit later for dinner which was scoffed down without a problem. Later Fred sat up with me after the girls went to bed, watching a move and doing his jigsaw.

Saturday morning Fred woke with a blocked nose and felt very sad in himself. He bucked up after a while and went shopping with me, getting the groceries and the papers, with a fight along the way. From time to time Fred gets an obsession going, this time it’s about Halloween decorations. When we went into Super-Valu he was all set to help me pack the basket but once he saw the stall of tat he was gone....

“Wow!” was all he could say, looking at the masks, fake pumpkins and whatever else has been spurned out by the decoration factory in China. That factory no doubt has been in full production all year from the looks of the spread in our local shop. It took all my strengths of persuasion to get him away from the shelves; the biggest deal I could offer was that we’d return when it was closer to the actual date. In a way this helped as I’ve been trying to get Fred to understand the concept of time and time gaps for the last while. So it made some sense to him that Halloween is three weeks away and Christmas is about twelve weeks. The deal was that we’d return in three weeks, if he’d walk away now. In fairness he did but was still not concentrating on anything else, just the Halloween tat.

That evening Ruby went to Dingle which left just Lisa, Fred and me at home.  His cough was getting worse, the cold was going from him nose to his chest again. It’s amazing with kids how these things always happen at night; Fred was fine all day and only at bedtime did he really go downhill.

Around 9.15pm he was watching a DVD and asked if he could go to sleep. He cuddled into Lisa and then he said:

“Mummy I feel all twitchy.”

Lisa looked at me, now we both feared the worst.

Within a minute a seizure had broken through.

“Why does this always happen? Why couldn’t it just stay as a simple blocked nose,” said Lisa

When he woke we got him up to bed so he’d be comfortable. No sooner than he was in bed when another broke through, two in fifteen minutes.

“Better call the hospital,” Lisa said.

I didn’t want to but I knew it was inevitable. Katherine answered and put me on to Marie. Why does Marie always have to be on duty when Fred is in a bad way? Of course we’re only delighted as she knows us so well and gives our boy such great care. It’s a standard joke on the ward now that Marie is always there for us when we come in but seeing her makes it all so much easier.

“I’ll get a bed ready and if you think you have to come in give me a shout back,” she said after I explained the situation.

By about 10pm Fred was burning up and the visit to Kerry General Hospital was inevitable. I called Marie and she told us to come straight up, she’d look after admission.

Fred woke in the car and was sitting up in the wheelchair looking around him when we got to the ward. The room was ready and soon they were comfortable. The doctor put in a line, took some blood for testing and we settled in for the night. About midnight Lisa sent me home, all so familiar but we so wish it wasn’t.

The next morning I was over by 8am. At the main entrance I met Marie on her way home and she gave me a rundown on the night. Fred had had a couple more seizures, was running a temperature and his blood test had shown an infection. The two were sleeping and all in all it wasn’t unexpected news.

The rest of the day went as usual. Fred slept a lot and had a few more seizures. His oxygen levels were way down and this was a concern for the staff. His temperature was a bit high but stable but connected with everything else it was though best to keep Fred in for another night. This was a disappointment but understandable in the circumstances.

Those days of hospital trips, disturbed home time and none of us really seeing each other are just horrible. Lisa, Ruby and I try to get on with our lives but it’s a constant merry go round of in and out the door, eating whatever is in the fridge, if you happen to have an appetite,  and drinking canteen coffee from polystyrene cups.

Times we had hoped  were behind us.

By Monday morning Fred was sitting up when I got to the ward. His colour had returned, oxygen levels were at 99% and temperature was down.

That evening we were all home again. Sitting around the front room, reading and watching TV. In bed Fred cuddled in to me after we read a couple of stories.

“I’m glad to be back home Dad,” he said.

“No more going back to that hospital,” I ordered.

“I promise,” Fred said.

That’s one I’ll make him keep.

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28Sep/140

Bradley Cooper Ruins the Day

“I had a bad night last night Dad,” Fred said to me as we drove to school Friday morning.

“What happened?” I asked. Having been at a meeting the night before and only arrived home at nearly midnight, I’d no idea of what had happened in my absence.

“Well I was fighting with the girls,” he started, the girls being Ruby and his mother.

The story continued onto how the girls had put him in the kitchen, apparently for no reason at all and Mummy even tried to put him to bed early but he wouldn’t go. This persecution of an innocent would normally concern me but I knew it was only Fred’s half of the story on offer. Later when alone with Lisa I learned how Fred wouldn’t hand the remote control to Ruby, egging her on until a row broke out.

“He’s some fecker,” Lisa said, in one of her more restrained descriptions, “some fecker for causing trouble.”

It hasn’t been a good week for Lisa either, what with George Clooney getting married and discovering yesterday that Bradley Cooper is dating a twenty-two year old. The same actress Lisa was admiring for her beauty and style until she read who the poor woman was stepping out with. The magazine was thrown to the floor in disgust along with some choice words. The fact that I was in the room didn’t seem to matter.

The week didn’t start well either. Fred had a seizure in bed Monday morning, only ten days since the last cluster. Ten days too soon. As usual we’ve no idea if this is part of a new pattern or a glitch. I knew something was on the way when he had a couple of frontal lobes between 4am and 5am. A full one broke through about 7am and so our Monday got off to a great start. Though he had another about 9am he still wanted to get up and go downstairs.

On the couch he slept the day away, had a couple more and a few more frontal lobes, that always catch you unawares. In between sleeps he woke to watch TV and drink glasses of water. Ruby got on with her day. Lisa did her things, studied, walked the dog and we all had a peaceful dinner before settling in for the evening. Fred woke fully about 5pm and though dazed he managed to stay awake for DVDs and bathroom breaks. All in all it was as routine as these days get, managed by Lisa with me in attendance.

Fred and I went to bed about 10pm. We read a few stories and the two of us fell asleep with me sitting up and the man under my arm. Another few frontal lobes kicked in, the first one scaring me awake but they stopped about 2am, not before Fred had a nightmare. The frontal lobes tend to happen when Fred is falling asleep, going from stage one to stage two sleep. We all get minor ones when falling asleep from time to time. It is the sensation of falling off a cliff or similar that will jerk you awake. With epilepsy you have a minor seizure at that stage, causing you to stiffen and cry out.

When Fred is in a cluster he is susceptible to these seizures. They usually kick in about fifty minutes into his sleep, waking him and so starting the cycle all over again. On Monday sometime after midnight he’d been asleep for about ninety minutes when he woke suddenly, looking at me with fear in his eyes.

“I had a nightmare,” he said, “about scary faces.”

He rolled over and went back to sleep. The last frontal lobe kicked in a bit later but about an hour afterwards he was snoring and the worst was behind him. Fred slept well for the rest of the night. On Tuesday morning he came down for breakfast though he didn’t have an appetite but was back to normal by lunchtime.

On Wednesday Fred was back at school. He was protesting on Tuesday night that he couldn’t go back but told me in the car that he was excited to be seeing his friends. Denise took him from me and Fred walked in with his head held high. When I collected him at 2.30pm he said he’d had a great day playing with his friends. The two of us were stopped by the pavement, talking and waiting for a gap in traffic. Fred rolled down his window as two guys walked past. They waved and said “Hi Fred.” To this Fred waved back saying “Oh hi.” Just a normal guy doing normal things, that’s our boy.

The rest of the week went well. The mobile library paid its monthly visit to the school and Fred came home with more books, which he put by the bed. Monday may almost have not happened for the way we’ve forgotten about it. Having the weekend come so quickly helped too, allowing us to relax and put it behind us.

Yesterday Fred and I went shopping around town. Just buying the groceries and the newspaper so we could all relax over a lazy lunch.

That was until Lisa opened that magazine to read about the up and coming pretty actress on the cover.

“She’s going out with Bradley Cooper......”

Day ruined.

Oh Bradley.

 

 

 

 

 

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21Sep/140

Repeat, Repeat, Repeat

Yesterday evening I was preparing dinner and listening to match reports on the radio while I worked. Everything seems brighter with the world when you’ve just watched your team win three nil away from home and then you go listen to the praise on the radio. Such was yesterday evening, the sun was shining the last of its warmth on what was beautiful autumnal day, Özil was the best in the world and the children were waiting to be fed.

Suddenly the screaming started, some of the worst I’ve ever heard, the kitchen door was thrown open and somebody ran in. I turned, screaming my head off to see the little black figure come running towards me. It had all happened so quickly that I wasn’t even aware what was happening and I kept screaming till my chest ached from pushing out the air. The little figure still screaming and dressed in last year’s Halloween skeleton costume stopped in the middle of the floor....

“It’s only me Dad,” said Fred pushing up the mask, “Freddie your son, it’s ok don’t be scared.”

But I wasn’t ok. Fred thought he’d scared me with the costume, which he had in the way he scuttled into the kitchen, but it was the screaming that really caught me. Lisa was out and Ruby was inside watching a program. So with such blood curdling screaming I really thought something terrible had happened. Just goes to show how close we live to the edge of reason, at least I do, when it comes to Fred and our worries about him.

Fred cuddled me close to him, reassuring me that all was well, putting on the mask again and lifting it to show the difference. Earlier he’d found it while poking around the spare room and asked if he could try it on. To this I agreed but didn’t expect it to fit at all. Funnily enough the costume fitted him well, he’d been a snug fit in it last year but by growing taller and losing some of his puppy fat, he’d sort of grown into the scary skeleton. Certainly scared the bejasus out of his poor old Dad.

Maybe it was because we’ve had such an ordinary week that the fright was that much greater than it should have been. Fred put down a full week, earning praise from his teachers, ‘the women who care for me’ as he puts it, and had done good stints in the library. We go to the library after school now, to do his homework and practice from the large folder given to us by the speech therapist. Fred goes, somewhat resignedly but the deal is that he can go home afterwards and the rest of the day is his own. Better than him coming home straight from school, having lunch and digging his heels in when homework time arrives. Four days a week we go, do forty minutes or so and come home to relative peace. If we time it right we can pick Ruby up from school too as her school is just across the road. A big contrast to the last few years and we’re all the better for it.

With Fred’s education it’s all about repetition, repetition, repetition. Eventually something will stick. An old teacher of mine, an educator in the true sense of the word, used to say “repetition is the basis of all linguistic study.” To us ten year olds the theory made no sense and only meant continuous playing of Irish verb declensions on the old reel to reel tape machine. Ironically what stuck the most in my head is his wise one-liner but then, if pushed, I could probably rattle off the genitive clause any modern Irish verb too.

So it is with Fred and I say “repetition is the basis of all linguistic study,” whenever I sit down with him. Unfortunately for Fred we have to repeat all instruction to him to try get it to stick. How to sit at the table, not to eat with his mouth open, not to go outside in his pyjamas and many more to the extent that he must be fed up of listening to us. By and large though he is taking it on board. We’ve seen a marked improvement in him over the last while and his education has come on greatly. On good days in the library I’ve taken random early readers from the shelf and he’s read them at ease. What I’ve been trying to do was to get away from the familiar texts and see if can still recognise the words. Only small steps but an improvement none the less, though both of his parents have exhausted their limited supply of patience by the end of most weeks. That glass of wine or beer of a Friday night is much welcomed.

This week Italy was being studied at school, though it being Kerry, today’s All Ireland Football Final was the big news. Fred was allowed wear a Kerry jersey to school most of the week and by Friday the kids were in full kit. Luckily an old jersey of Ruby’s fitted perfectly and the retro style was trés chic. Also on Friday the culmination of all things Italian came in a morning of pizza making. Fred went off with a Tupperware of grated cheese and a tin of sweet corn as his favourite toppings. After school I collected him and Denise said they had a great morning, certainly the screaming coming from his classroom implied a lot of fun.

“Did you have a good time making pizza?” I asked Fred in the car.

“Oh yes,” he answered, “I had four slices!”

Four slices? He wouldn’t have gotten away with that at home...

As we drove towards the bridge Fred was quiet.

“What is it?” I asked.

“Are we going to the library today?” he replied, one eye on the bridge, the other on the turn-off to home.

“No library on Friday, you know that,” I answered.

Fred perked up immediately.

“That’s good,” he said.

Four slices of pizza and no trip to the library.

You can’t beat that.

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14Sep/140

Bravery in the Course of Duty

A very quiet day in our house. Lisa has gone to collect Ruby and Fred has gone along for the drive.  There was talk of collecting Jaden but I’m not sure of what was the outcome. It’s unusual to have such silence but the little girl across the road is having a party with a bouncy castle so the screaming will start soon. When Lisa and I saw the castle go up this morning we both feared the worst. Fred likes nothing better than bouncing up and down in one but his epilepsy likes nothing better than to hit when he’s bouncing. It must have something to do with the movement but he’ll always go down when in a bouncy castle. Which is the real reason why Fred has gone to Dingle, the last thing we both wanted was to be fighting with Fred about him having fun.

Just not fair on him.

It didn’t take any bouncing for him to collapse at school on Friday. Only eleven days since the last episode and we’re not even going to analyse or ask why. It has been very hot lately, maybe that was a factor just like before the school holidays, who knows?

Lisa rang me at home to get over to the school. Luckily Ruby was off her school for the morning and the two of us shot over. As we drove up we could see Fred on the school yard concrete, wrapped in a blanket, a cushion under his head and four women around him. He doesn’t want for care at Blennerville, that’s for certain.

We got him in the back of the car. The poor man’s face was covered in grazes and the brow of his nose was badly cut where the bridge of his glasses had jammed into him. Apparently he’d been talking to a group of girls and just as the bell went for end of break he went down. Talk about waiting for the right moment, just as all the school was gathering.

Ruby sat in the back with him and we drove home. Lisa was there before us and we walked him into the house. The usual routine of laying out the couch was done and Fred took up residence for the afternoon. He slept for a few hours, had another seizure but that was it. Around 8 o’clock he woke for some pizza, watched a movie and the two of us went up to bed about 10.30 pm.

On the last few clusters the epilepsy took a break before hitting again as he fell asleep at night. Thankfully not so this time and around 1.30am I stopped watching and fell asleep myself. For the next while the slightest movement had me jumping up but I must have fallen asleep eventually. The next thing I knew Fred was waking me from a nightmare...

“Stop making all that noise Daddy, I’m trying to sleep,” he said.

So that was it. Fred woke Saturday morning as right as rain. We kept him quiet for most of the day and despite the odd row with his mother all was well. After breakfast Fred said he had to tell me something.

“I’m really sorry for fainting at school,” he said, “I’m sorry for all the cuts on my face.”

Breaks my heart every time.

Yesterday I spotted Fred checking out his battle scars in the mirror.

Tomorrow will be a day of getting attention for bravery.

Our man will deserve every inch of it.

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7Sep/140

The Mayor

As Fred missed out on so much schooling and socializing during some important formative years his everyday experiences have suffered.  Resulting from all this his vocabulary can be limited at times and his knowledge of what to do in certain situations. Outside of all this Fred will always have a different view of the world which we love and hope to encourage as much as possible. Unfortunately though we have to practice some tough love at times but the constant correcting seems to be paying off. Fred walks a lot better than before, he forms sentences where once all he had to do was make himself understood and he has to do things for himself instead of one of his parents. After lunch today he was going out to play but, without prompting, he brought his plate to the sink, a task his sister still hasn’t mastered.

Vocabulary and sentence forming is still a problem but he’s improving and recently he only has to be corrected a couple of times before getting the right word. I still love Fred’s words, the ones he makes up when he doesn’t know the right one to use. As we were driving to collect Ruby this morning Fred asked me:

“Did you have fun at the beer restaurant?”

“The beer restaurant?” I asked, trying to think of what he was trying to ask.

“Yes you know, the beer restaurant with Billy’s Daddy?”

“Ah you mean the pub,” I’d been for a couple of pints on Friday night.

“Yes, the pub, did you have fun?”

Looking back at it I think that ‘beer restaurant’ sounds a lot more respectable than ‘the pub.’

The fun we had was paid for yesterday but was worth it all the same.

For once I didn’t feel guilty indulging Fred in another habit which we’ve been trying to break. If Lisa or I are lying on the couch Fred will home in on you, grab a blanket and cuddle up. It really is lovely but he’s getting a bit big to be at it all the time plus he spent enough hours lying out over the last few years. Yesterday after Lisa and Ruby left it was all I wanted to do and having Fred next to me was the easiest way to keep an eye on him. In the end the two of us ended up having a snooze which did the two of us no harm at all.

This week had been Fred’s first full week back at school, well nearly full week. He managed to sneak in a small cluster of seizures on Monday evening, thankfully after school. When I collected him at 2.30pm I could tell by the worried look on his face that all was not well. The furrowed eyebrows and sticking close to Denise as he walked out told me that not all was well. The confusion had come on around 2.15 and Denise had given him a few swipes of the magnet to get him to going home time. A sensible approach, not making an unnecessary drama of the situation and Fred walked to car unaided.

Back home he lay out with his mother and a seizure broke through about an hour later. Fred slept it off and woke for dinner, watched a movie before going to bed about 10pm. In bed another couple hit; he can be susceptible when drifting off to sleep. Another one broke through as he woke around 8am, again waking can be a time of weakness but that was it. The rest of the day was spent snoozing and recovering. The man was back at school the next morning and after a slow start there was no stopping him according to Denise.

That was twenty-one days seizure free, a day shorter than before but still a good break. Keeping the seizure count to four was bonus and I don’t think they were as violent as other times. Possibly the VNS output change has had a good effect but only time will tell.

Now I can see Fred and Jaden heading off across the green. The two of them eating ice creams and chatting freely about whatever. It’s great for Fred to have a friend like Jaden and the J man loves coming over to be spoilt by Lisa as well as playing with Fred.

When we were driving home from school on Friday the car was stopped at the traffic lights outside of the school. Lines of kids were walking past, heading to their own parents’ cars. It was warm and Fred had the window rolled down. A chorus of “Bye Fred,” came from each passing group, Fred regally waving at some of them and nodding at others like the mayor of Blennerville.

I didn’t say anything, just listened to the greetings and happy to see Fred interacting with friends, just being one of his class.

Our man getting a bit of independence at long last.

Great to see.

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31Aug/140

First Week Back

Well Fred and Ruby are downstairs lying out on the couch. Fred is watching the new Godzilla movie and Ruby is reading while also on her phone. We were all up comparatively early this morning, a product of getting back to school this week. The two were back on Thursday, Fred to the familiar Blennerville and Ruby to the new surroundings of Gael Cholaiste Chiarrai.

Before all the school going though we had a journey to Dublin. On Monday evening Lisa got a call from Temple Street. As they were all getting back to normal we had a choice. Either go to Dublin the next morning or wait until the six month check-up in October. Lisa and I were anxious to have the VNS checked as Fred’s pattern has been a bit erratic lately. Suzanne, the VNS nurse, was fully booked for the next morning but if we turned up she would make time to see us. Fred’s check-ups only take a few minutes so we decided to take Suzanne up on her offer.

At 7am Tuesday morning we were up and on the road by 7.30am. Fred was a bit shell shocked; this summer has been the first where we’ve felt comfortable with him having a lie-in. So much has changed in the last while but there was a time when we stuck to the strictest of morning routines. Partly out of fear that too much sleep might trigger a cluster and also we couldn’t relax leaving him in bed alone. These holidays though he has been sleeping until gone 9.00am, coming down sleepy headed for a late breakfast before starting his day.

In the back of the car he snuggled up to his mother, pulled a blanket over himself and drifted back to sleep. Every now and again he’d wake to ask where we were or where was next but he slept most of the way. By the time we reached Rathcoole he was well rested and sat up for the rest of the journey. It felt strange not to be calling to Cathy and Conor but this was a mission; get the job done and get home was the goal.

At Temple Street it was packed. The waiting room was full of screaming kids and stressed parents. Luckily as soon as Suzanne knew that we were there she made time for us. Still thirty minutes of bedlam was enough for anyone. The staff at Temple Street has always been so welcoming and it was so very reassuring to see Suzanne’s smile one more. Once in her office she took Fred off to be weighed before we got down to a catch up.

We tried to give as accurate a rundown of the last few months as possible and Suzanne took many notes. Her answer to Fred’s recent pattern was instead of upping the output to increase the frequency of the VNS coming on. In essence this is what Lisa and I have been doing by swiping him with the magnet at regular intervals. Now she changed the timings from every five minutes to every three minutes, a proper method of what we had been doing, 24 hours a d day, seven days a week.

The idea behind this is to tackle that cycle of seventeen to twenty-one days which has been Fred’s normality for the past few months. Maybe the more regular output will help stabilise his brain, which has always been the plan. Instead of upping the output which may have side effects and run the battery down quicker than scheduled, an increased frequency may do the job. Only time will tell. Now that we are getting some sort of control over the seizures and clusters maybe we can push the frequency a bit too.

Here’s hoping....

Once the session was finished we headed down to the Basement Cafe for lunch, a favourite with Fred. We were back on the road by 1pm and home by 4.30pm. The day had passed in such a haze of activity that we just collapsed into the front room after dinner and all were in bed by 10pm.

Wednesday was a day of getting ready for the dreaded back to school. We had left it so late with Ruby that she only had a meeting with her new school principal that morning. Both parties suitable impressed and he left us with a “See you tomorrow.” Nothing like leaving things to the last minute. Lisa took Ruby out uniform shopping while Fred and I took it easy. It’s been a good summer; Fred has had a few setbacks but nothing we couldn’t fix. Now at the end he didn’t want to go back to school, a good healthy attitude and a sign that all is ok.

Thursday and Friday were all about getting up and out the door by 8.45. Now that Ruby is at school in Tralee there aren’t any more early rises and aiming to be in the car by 8.05am. It wasn’t really the early mornings more the driving, nearly 500km a week and ten hours on the road that we dreaded. That was all before weekend trips or maybe having to out in the evenings if she had training or a match after school. We did it though, three years of those daily trips and that is all behind us now.

As I drove Fred over to school Thursday morning he let it slip that he was excited about going back to school. At Blennerville he walked in, head up and smiling, as if he’d never been away. The kids all welcomed him back and Fred sat in next to Jaden ready for the day. No more half days or three-quarter days; it’s full on until 2.30pm from now for our boy and he’ll be all the better for it too. It’s important for Fred to be among his peers, learn from example of what is expected of him and in the process get his life back. On Friday morning Lisa went back to the car to get his jacket but Fred continued on, walked in on his own, just as any boy his age would do.

Oh the normality of it all.

Yesterday Jaden came over. Fred had asked him after school and of course the J man said yes. Lately his visits weren’t great, Jaden being very quiet in himself, happy but only wanting to play on his tablet. The visit yesterday was very successful; the two played outside, watched a few movies and did their own thing when tired of each other.  Jaden stayed for dinner and afterwards they played outside again. Lisa went to round them up at going home time and found a drenched Freddie walking home. The two had been playing at the broken pipe on the green and Jaden had turned it on Fred. Good old fashioned messing and great to see.

Lisa took Jaden home while Freddie and I went to change.

“I nearly drowned,” Fred said, getting out of his wet clothes.

Nothing wrong with that boy’s imagination.

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24Aug/140

Picking Blackas

When Fred’s epilepsy began to overtake out life, shocking us into almost a total retreat from day to day activities, Ruby kept us going. Her involvement in normal life, sports, dancing, having friends over kept the house alive and our focus off Fred’s condition. She still does it in her own way, keeping her parents on their toes but it hasn’t been an easy few years for her either. The changes have affected her just as much as it has affected us but she has dealt with it all with a maturity beyond her years. This week we had to break the news that she couldn’t keep going to school in Dingle, it has become inpracticable, but she understood and got on with the change. There were tears but mainly from her parents at having to ask her to change schools when she hadn’t done anything wrong and at her taking it so well. We’d been putting it off all summer, scared at upsetting her and ruining her holidays. Her response was to reprimand us for always leaving things to the last minute...so very true.

Earlier in the week Lisa and Ruby had gone to Waterford for the last time this summer. Rudi was going back to the US of A and the two were driving the Gaulke family to Shannon early Wednesday morning. This left Fred and me at home, a chance for the men to enjoy the last of the summer wine. Funnily enough when they left Monday afternoon I couldn’t think of a time before when Fred and I had two nights at home alone. Certainly not since the move to Tralee.

So after the last of the dancing girls left Tuesday morning and after we’d taken the empty champagne bottles to the recycling the two of us went to the library. Fred has become resigned to the hour of reading now, not that he doesn’t kick up a fuss, but he knows it’s a losing battle and all went well. His reading is much improved, though still he wanders off to Fredland looking out the window or staring off into the distance. I think we spent almost two hours there on Tuesday, me browsing, Fred drawing pictures and reading his books.

Back home we had lunch and afterwards Fred went out to play. The kids in the estate are younger than Fred and he tends to stay at the periphery but he is safe, which gives me a bit of time to work. When I was finished we went of picking blackberries. One of the strongest memories of my mother is the two of us setting off ‘up the fields’ to pick ‘blackas,’ as they were known. The sight of a blackberry juice stain can send me back over forty two years when all was ok with the world. With my father’s crooked walking stick we’d pull down the best branches at the top of the bushes and fill the big red mixing bowl before struggling home.

Fred was a bit sceptical of leaving the fun around Springwell Gardens but he came anyway. The two of us set off up the mountain roads behind Ballyard and our first job was to find the blackberry bushes. Fred, probably like most kids today, had no idea what we were looking for but when we found a good spot he got stuck in. The hunt for the fruit, trying to fill his bowl quicker than Daddy soon had him hooked. He had his wellies on but took off the gloves as they were slowing him down. Even after a few minutes he ignored the constant pricks of the thorns and concentrated on getting the fruit.

Once one spot was cleaned out we drove on to find other ones, Fred the lookout for the bushes. About two hours we spent up and down the little lanes, getting bemused looks from passing drivers but having great fun. Even when our bowls were nearly full Fred wanted to keep going and I think it was hunger in the end that got him home. The little man sat in the front seat proud as punch at our harvest and couldn’t wait to show Mummy when she came home.

The two of us had our dinner and settled in for the night. Before going to bed we went outside to look at the stars, Fred spotting the few that were out, as he does most nights. In bed I read him a story and as he turned over to go to sleep he said...

“Dad?”

“Yes?”

“I had fun today picking the blackberries.”

Such a simple little time but hopefully one that will stick in his memory.

When our two ladies came home on Wednesday Fred showed them the big bowl and they were suitable impressed.

Later I asked him to help with making the jam.

“No thanks, you do it,” was the response from the front room.

Mummy was home and she needed to be cuddled.

Yesterday all was forgotten though and Fred was banished to his room for the afternoon. A row had broken out between the two of us, culminating in his throwing a fair sized stone at me in a fit of anger. He was frog marched home and sent to bed. It took the three of us to get him up the stairs such was his anger, anger that came out of almost nothing.

Later when all had calmed down I asked him why he got so angry. It’s a worry of mine that Fred’s temper can boil over so quickly, though rarely, and that he can become so intransigent for the time it lasts. A lot I reckon is to do with frustration and boredom, of not being able to lead a normal life.

“The anger is in my head and my legs,” he answered me, “I can’t stop it.”

Getting back to school this week and mixing with the kids should help. There will be a special effort to get Fred involved again and maybe get more friends over. More routine and more play will help but also the two of us were working on anger control yesterday; maybe that will help too. As Fred gets older his frustrations will increase so there is a lot of work ahead of him.

I’ve said it before, but it’s not easy being a Fred.

 

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17Aug/140

Bizarro World

On Tuesday I drove over to Waterford to collect Ruby. It felt like she’d been gone forever and certainly Freddie was missing his big sister. He’d have a hung dog look on his face and sit silently waiting to be asked why so. Or else he may just be quiet for a long while again waiting to be asked why so sad...

“You’re very quiet Fred,” I’d say, “are you ok?”

At the forefront of our minds at all times is that question, is Fred ok? Any sign out of the normal and he’s quizzed, sometimes by both parents in a matter of seconds. Impatiently he’ll normally answer...

“I’m fine!” and the exasperation has got stronger in recent times.

So when asked this week it was answered with:

“I miss my sister,” followed by short tears or at least sobbing, depending on the mood.

Fred though also misses his friends. Jaden hasn’t been in the form to come over much and Fred was only beginning to make new friends when school finished for the year. Not that Fred is in any hurry to go back to school; whenever it’s mentioned he says he’s not going back. He did make new friends last school year and we’ll have to work on getting them over once they start again. Socializing is vital to Fred’s return to normal life and he is great company. Being with friends his own age can only help too with speech development and a general awareness of his place in the world.

Before I left on Tuesday the two of us did a few chores around town. It was day 22 of his current seizure rotation and though I was aware of this I still wanted us to do jobs together. So we went to the bottle recycling, the post office and the library. Fred was a bit out of it but nothing that he couldn’t shake himself of when called upon.

Saying goodbye as always was difficult but the promise of getting Ruby sweetened the pill. When I called home not long after arriving in West Waterford, Fred was sleeping off an attack of confusion, the first for a while but not surprising. Going to bed that night my phone lost coverage and I could only hope that all was ok.  For Lisa and I the shock of having to go to the hospital on the last cluster was lurking in the back of our minds. The last thing we wanted was for that to become the norm again.

On Wednesday morning I got a call from Lisa. All was fine and they were preparing for speech therapy. Day 23 had been reached; the old record had been matched. Now the hope was to make Day 24 and set a new record. After a day of working in Waterford I set off back to Tralee, a very tired Ruby in the seat beside me. She’d been up late all week, talking with her aunts and cousins, going on shopping trips and visiting relations. All in all a tiring time for my darling daughter and we weren’t twenty minutes on the road before she nodded off.

We were home by about 6.30pm and Fred was in his mother’s arms on the couch when we walked in the door. He jumped up to greet us but I could tell from the way Lisa guided him that all wasn’t ok. They’d gone to speech therapy at which Fred did very well. Afterwards they’d gone shopping but just as they finished Fred got the jitters, his body jerking and eyes flickering.  Lisa swiped with the magnet and got him to the car.

Back in the house she continued to swipe but a seizure broke through about 1.30pm. Afterwards Fred fell into his deep sleep and Lisa continued with the swiping regime. Thankfully that was it and if I didn’t know any better I wouldn’t have guessed he’d had a seizure.

Mummy was now dispensed with and Daddy was called to cuddle him...

“I don’t want her,” he said of the mother who’d nursed him all afternoon.

Poor Lisa gets all the grief.

We had dinner; Fred even had two helpings, allowed under the circumstances. Fred and Lisa went to bed about 9.30pm, Lisa allowed back into his good graces and went I went up an hour later he was fast asleep. Lisa had been swiping him and I continued to do so. We put down a peaceful night, me jumping at the slightest movement but nothing happened, Fred was over the worst. What a contrast from 23 days earlier.

The next day though he was still out of it, getting regular attacks of confusion and not himself by any means. When I came home from a job I was on Fred was asleep on the couch again. Out of nowhere two seizures had struck, about an hour between them. This was unusual but not too surprising considering how he’d been all day. In fact the way he was on Thursday was how Fred can be when a cluster is beginning and Wednesday was more like a day after. Bizarro world but then nothing is unusual with our Fred.

That was it though. He woke about 7pm and had a bowl of pasta. Later he fell back to sleep but made it peacefully through the night. Friday he was much improved and today he’s the same old Fred, full of fun and enjoying a lazy Sunday.

Last night when Lisa was talking with one of the neighbours it was mentioned that soon it will be ‘back to school.’

Fred, inside the house turned and looked at me...

“I’m not going back to school,” he said.

A new battle looms on the horizon...

 

 

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