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

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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10Aug/140

What comes after Macroom?

Another week of Fred’s holidays. Seven days of nothing to do and all day to do it. Mind you Fred found plenty of opportunity to fight with his Mum or get in trouble with his Dad. That last cluster has affected us and knocked us out of the relaxed state into which we’d slipped. If Lisa is with Fred she is constantly out on the estate looking for him or just watching the man. When I’m in charge I try to encourage him inside which isn’t fair on him at all.

On Friday morning I was in my office on the top floor and could see Lisa looking around for Fred over by the green. It was obvious she couldn’t see him and I was trying not to get anxious. One of the men cutting the grass pointed to a spot behind the houses, a blind spot really. From my window I watched Lisa disappear down the nook and waited for her to come back into view. I waited and I waited. Just as I was getting out of my seat to run out the two reappeared. Fred carrying a big bunch of sticks which he struggled across the tarmac with and dropped into the boot of the car. Down I went to investigate and it turned out he’d been collecting wood for Aunty Clare’s fire; Friday was also the day we were going on a little holiday.

All week Fred was asking of when we were going to Aunty Clare’s house. It was all he wanted to do, go to Aunty Clare’s, have dinner, sleep there, see Granddad Jimmy and Uncle Bill. We had planned on Tuesday but I had work commitments and though I drove down it was only to drop Ruby before I headed to Dublin. When I got back Wednesday evening Fred was very cross that I’d slept in Aunty Clare’s house and wouldn’t talk to me. Poor little man just didn’t want to be left out and it was worthless trying to explain.

The other side of the proposed trip is that any misdemeanour or dissent, no matter how small was met with “there’ll be no Aunty Clare’s if...”It worked to an extent as Fred was much more open to going to the library or speech therapy. Fred’s normal reaction to any formal appointment is to say no but this week the alternative wasn’t worth contemplating. We’ll have to see if the spirit of cooperation will carry over to this week.

Fred has been getting speech therapy,on and off for the last year, to help with his conversational skills . The problem with Fred’s condition, a mixture of the meds, the epilepsy and just being a boy, is that his concentration is very poor. Fred will be in mid-conversation and he’ll just drift away...

“Well, I was in the car with Mummy,” he’ll start to tell you about an incident...

Then silence. You’ll look at him but he’ll be distracted looking out the window or at a book or whatever is on the TV.

“Fred,” you’ll try to call him back

“Yes?” he’ll look at you, focusing on you slowly.

“Fred!” you’ll try again

“Yes my Dad?”

“What happened with Mummy?”

“What?”

“Turn off the TV and tell me about being in the car with Mummy,” for TV you can substitute book, window, computer etc.

“Oh all right,” he’ll say resignedly before starting back at “well, I was in the car with Mummy and ...” at which stage you’ll probably get the full story.

So the speech therapy is all about listening, concentrating and finishing conversations. All very difficult when your brain is doped with strong meds, working at a slower rate and trying to keep up with the pace of what is happening. When Fred is drawing or building something there isn’t any delay; it just seems to affect him when listening and in conversation.

Friday we were ready to go.

“I’m so excited about going to Aunty Clare’s!” Fred exclaimed when he woke.

All morning was about preparing. Packing the car with his toys, the firewood and anything else needed. After breakfast Fred asked what were the towns we were going through to get to Waterford. He got his little spiral notebook and pen. I called out each town, spelled it slowly and Fred transcribed, putting a little box after each one. It was in his hand all morning and when it was time to leave Fred had it to the ready.

“What town is first?” he asked, more than once.

“Killarney,” I answered.

When we reached Killarney it was ticked off and the next one was asked about and the next until we passed Dungarven, all more than once. Luckily Fred had a snooze along the way...

Fred knows the beginning of the lane to Aunty Clare’s as ‘Aunty Clare’s trees’ and after passing Dungarven he began looking for them. About twenty minutes later the shout of “Aunty Clare’s trees,” came from the back and we had arrived.

The hugs and kisses were monumental; Aunty Clare was knocked off her feet. Everyone else was greeted; the boxes of toys brought in and the chatting began. After a big dinner, lots of wine and more chatting, it was nearly 11pm. Fred and I went off to bed, the tired but very contented little man was asleep in my arms within minutes.

During the night Fred rolled over in his deep sleep...

“What comes after Macroom?” he asked for about the twentieth time that day.

Yesterday evening we came home after visiting Granddad Jimmy.

In bed, just before going to sleep Fred said...

“I’m glad to be back home Dad.”

‘Níl aon tinteán mar do thinteán fein,’ I suppose.

 

 

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2Aug/140

The Tiny Teaspoon Expedition

This week has been one of those for which we long. A normal seven days of nothing much, just doing our jobs and getting on with life. As Ruby was away the house was quiet and when Lisa left us on Thursday it got even quieter. When I say ‘left us’ I mean just to Shannon to collect Rudi, not to her eternal reward, which I’m sure will be great.

Once Fred got used to having the couch to himself he began to miss Ruby. He had a long face on him and was moping around the room...

“What’s up?” I asked.

“I miss my sister,” he said through some fake sobbing but the sorrowful eyes told the true story.

Fred loves his sister and does miss her when she goes away, even if they spend their time bickering when she is around. Nothing unusual in that for families the world over.

As I had dropped the girls down to Waterford late on Sunday evening I stayed over. It was a treat really for me, cooking for the six women in the house and washing it all down with a couple of glasses of wine. That great feeling of relaxation that neither Lisa nor I get too often, knowing Fred is fine and being looked after while you kick back a bit. In the end I must have had more than a glass as I felt decidedly seedy driving home on Monday morning.

We started back at the library on Tuesday. Fred and I had been going regularly but visitors and epilepsy broke the routine recently. The visitors are a more than welcome diversion but not so the epilepsy. Strangely enough Fred picked up the reading again very quickly. Sometimes after he’s been through a bad cluster his memory is completely cleared but not so this time. Though as usual the concentration was poor initially and the idea of Jaden coming over was a distraction. It comes back to what his teachers raised during the year: if Fred knows something is happening in the near future he won’t concentrate on the present. So it was on Tuesday.

The two of us took our little seats at the kids reading table. Fred started on the first page but then stopped and started to look around...

“Fred?” I asked, “Are you ok?”

“What?” he answered.

“Are you ok?” I repeated.

“Yes, but when will collect Jaden?”

I’d made the mistake of saying his best friend could come over. To Fred that meant the countdown was on, that Jaden was due any minute. After a few stalls and stares out the window I had to put my foot down...

“If you don’t stop thinking about Jaden there won’t be any Jaden,” I said as sternly as possible.

“Ok my Dad” was the answer, followed by, “but when is he coming over?”

“What did I just say?”

“Ok my Dad.”

Lisa was out all day and I made an excuse that Jaden was in Listowel, visiting relations... As I had work to do I couldn’t look after the two of them but I promised we’d find him the next day.

Jaden eventually came over on Wednesday. The little man was very quiet in himself and though Lisa asked him, he did want to stay. He didn’t say much, went on his tablet and probably spent more time with Lisa than with Fred. Billy from across the way had his cousin Jack staying over and the two joined Freddie to play battles. Jaden played for a while but was happier inside talking to Lisa and helping to clean the windows. At the end of the evening he wanted to stay longer but it was time for Fred to settle down for the night and Lisa took him home. We suppose he just wanted a quiet time and playing with the kids wasn’t for him that day. Hopefully when he next comes over all will be fine.

On Thursday Lisa left early for Shannon and the two men had the house to themselves. We had a long lazy breakfast before I went to my office to catch up with work. At around midday we went off to the library for more reading. I had promised Fred that if he did well all week there would be a day off on Friday. A promise he didn’t forget...

“Is today the last day?” he asked on the drive over.

After a great session of reading we drove home through town. Lisa rang and I pulled over outside the park to take the call. While I was talking Fred was looking out the window and after I finished he asked if we could go for a walk. Out we got and walked around but not until I gave him a few good swipes of the magnet. It was beautiful. The Rose Garden was in full bloom and Fred loved wandering among the beds, sniffing the different colour blooms. Back in May when the weather turned good Lisa and Fred had had a couple of picnics in the park. I suggested to Fred that we’d come back with Lisa and Ruby for a picnic next week, to which he didn’t seem that bothered. Maybe if Jaden was involved he might had agreed, but then that would be the preoccupation for the next seven days.

Back home we had lunch and I did some more work. Later Fred and I went for a drive but stopped for an ice cream first. Fred brought a tea spoon from home and had it in his pocket walking into the shop. It took him about an hour to choose the right one but back in the car he pulled off the lid and took out the spoon. He was a very quiet boy on the drive, eating the tub spoonful by tiny spoonful until it was all gone. That was why he wanted the spoon and that particular small one too.

After dinner we watched movies and on our way to bed went to look at the stars. There wasn’t much to see as the cloud cover was heavy. Coming back into the house Freddie ran ahead and up to the bedroom.  Once my teeth were washed, I got myself ready for bed. Fred was sitting in the middle of the bed looking worried.

“Dad I got the confusion,” he told me.

In I got, swiped the battery and cuddled him to me. Soon he was calm and it seemed the confusion had passed.

“All that running gave me the confusion, I’m sorry,” he said turning over to his pillow.

We don’t know if running affects his brain but Fred certainly doesn’t have to apologise for anything.

The sweet little man.

 

 

 

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27Jul/140

That Old Familiar Feeling

Sixteen months, sixteen good months but like all good runs they have to come to an end. So it was with Fred staying out of hospital. This week that run was broken and we ended back on the Cashel ward of Kerry General Hospital.

Monday had begun as most days do. Fred was getting over a stuffed nose but worryingly his coughing was coming from deep in his chest. “A soapy cough,” as Fred described it, explaining how it felt in his chest. Illness is always a concern with Fred as it seems to affect how he processes his medicines. The balance of how epilepsy medicines work or not work is tight, so much so that even a change in brand name can have disastrous consequences. Fred took up residence in front of the TV; keeping him in one place and out of danger is a priority.

Early afternoon and Lisa has gone to her course. Fred comes up to my office and we download the correct Transformers for him to watch. The two of us go back to the TV room where Fred has laid out two kitchen chairs like deckchairs. He gets under a blanket and I get the Transformers working on the laptop.

“How are you feeling?” I ask.

“Fine,” he answers through a chesty cough, like a lifetime smoker in denial.

Back upstairs I’m working when I hear a crash from downstairs. Trying not to be alarmed, it wasn’t a loud one, I go to the top of the stairs. Then that horrible noise that we know and dread breaks through the silence.

The little man is on the floor and when he’s gone through it I struggle to get him onto the couch. Fred opens his eyes and looks at me, though I doubt if he’s aware of what has happened. The two of us settle down and wait it out. Ruby comes home and a short while later so does Lisa. I get his medicines into him and swipe the VNS continuously. Another breaks through and we know a cluster is brewing. Fred has been 21 days seizure free which is great but dealing with clusters we had hoped may have been a thing of the past.

All is ok for a couple of hours but then three strike in the hour after six o’clock. Lisa gives him a shot of Diazepam and cuddles Fred to her, the two of us fearing the worst.  From 7pm to 9m Fred is in deep sleep. Stupidly I begin to believe the worst has passed. But four in 48 minutes expose how foolish was that thought. Though Lisa has also given Fred nurofen and Paracetamol he still has a temperature. There’s no escaping this one.

Recently I’d been deleting old contacts off my phone and when I was about to do so to the direct line for the Cashel ward, decided against so doing. The nurse that answered didn’t recognise my voice or my name, it had been a while. She asked me to hold when I repeated my surname and Freddie’s name. Another voice came on the line...

“John?”

“Marie.”

“No, no, no, no, no,” was all Marie could say, she knew why I was calling.

Nurse Marie, the one who’d gotten us through so many bad nights before, was on duty. It all sounded so familiar but also so reassuring. The nurse who’d answered was newish to the ward. A child had been admitted the previous day, also suffering from seizures. The new nurse was discussing the case but Marie had said it was nothing compared to Freddie Verling. An hour later I rang; when the nurse put me on hold she was asking Marie “what was the name of the kid you mentioned earlier? I think his father is on the line.” The benefit of a unique surname.

We got in. Marie bypassed the admissions paperwork and we went straight to the ward where a room had been prepared and the consultant called. In fact we met him at the door. Fred had a high temperature and the urgent blood tests came back with an infection. By midnight the temperature was coming down and Fred was settling in. He even woke up and was looking around him. The doctor had put a line in for the Lorazepam, all part of the Freddie protocol, as they know it on the Cashel ward. Two hours seizure free was good, Lisa sent me home to Ruby.

I was back in at 7am. The two were asleep and Marie gave me a rundown of the night. Thankfully they didn’t have to give the Lorazepam as Fred only had another two seizures. They’d started him on a strong antibiotic which had helped stabilise our boy and his temperature had dropped...

“Herself eventually went off to sleep at about half three, you know what she’s like, she wouldn’t go before that,” Marie gave me that knowing look as she spoke; the four of us had all been there before.

In true Freddie style he was dopey but right as rain when he woke. Lisa went home to freshen up and the doctors paid us a visit. They were waiting on the result of a chest x-ray and more blood tests. By 2pm we were given the all clear and sent home.

The man was out of sorts for the rest of the week. The diazepam really wrecks him and it was like going back a year with the way he was so dopey at times. His speech is affected and he just isn’t aware of what is going on around him. It can take up to a week for it to pass through his system, though yesterday and today he is much improved.

Friday was my birthday and Fred made me a lovely birthday card. I think the day meant more to him than to me. It was a lovely day and we even went out for a big lunch in our favourite cafe. Fred munched down his toasted ham, cheese and onion sandwich, keeping some for the trip home in the car.

Later I managed a swim in the ocean, followed by a great birthday dinner of Fred’s favourite, creamy, mushroom pasta. Afterwards Fred brought me over a plate of birthday cheesecake, with one candle lighting, singing ‘Happy Birthday’ as he walked.

“Make a wish Dad,” he said as I blew it out, looking at me with a big smile on his face.

The wish was made, the same one as last year.

I only have the one.

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19Jul/140

Pulling Teeth and Loving Uncle Bill

Fred is downstairs watching a DVD. Lisa and Ruby have gone shopping leaving the men at home. After shopping the two are off to Dingle, the girls are gathering and Ruby needs to be chauffeured to Ali’s door. Lisa suggested that she get the bus at 6pm, a suggestion that was met with a look from Ruby that ironically could only be matched by her mother. Fred is happy with the peace; it has been a long week.

It has also been a great week. The man has been having lie-ins in the morning and has also managed to escape going to the library. Between me working and making a trip to Cork he kept silent, hoping against hope that I’d forgotten or the trips were over with for the summer. They are too important though, he needs to put in the extra hours, so come Monday afternoon it will be back to the desk. That’s a news story that I won’t be breaking until about 3pm Monday afternoon, best to keep the peace for the time being.

Once Fred gets something into his head it stays there. Lisa calls them his figaries and getting his back up about something planned is one of his biggest. If he’s looking forward to an event such as a trip to Dublin everything else will be forgotten, it will be tunnel vision until we get in the car. So much so that the school had to ask us not to tell Fred about any plans we make, as he won’t do school work from that day. I forgot this rule in his last week and was reprimanded at the end of year meeting.

When it’s something that Fred does not want to do he’ll just go on and on about not doing it. Such it would be with the library visit. I could almost guarantee that his last words of the day before going to sleep would be...

“I’m not going to that library Dad, I’m sick of it.”

To which I’d reply,

“Well if you don’t go there’ll be no breakfast in the morning,” or some equally pointless, idle and unenforceable threat.

I’m not sure what happened last night in the bedroom but Fred was back downstairs less than an hour after going to bed. The usual, I heard the door open and the angry steps on the stairs, plus the breath fuming out of Fred’s nose. Soon he was the door of the TV room, arms down by his side, fists clenched and nostrils going like one of Granddad Jimmy’s prize bulls...

“I’m sick of that Mummy,” was all he got out.

His mother wasn’t far behind him...“There’ll be no toy store tomorrow,”

Fred having planned a trip with the present he got from Uncle Bill.

“Oh ya?" was the reply to that threat.

First thing this morning though Fred was out of the bed and up to his mother. Peace was negotiated and toy store rights were reinstated. So not only is Fred now watching a DVD he’s also got a brand new Spiderman sitting beside him.

All worked out in the end.

Uncle Bill and Chrissie arrived on Wednesday for a two night stay. Fred was delighted to have his Uncle Bill down. So much so that I was pushed aside. When I came in from a visit of my own Fred was cuddled up to Uncle Bill on the couch, barely raising his head when I walked into the room. Later the three of us were heading to the off-licence to get wine for the dinner. Fred told me to stay; I wasn’t to come as it was just him and Uncle Bill. As I got into the car Fred tried to stop me but we compromised with him sitting in the front. In town we had to park up so Bill could go to the cash point. Walking down the street Fred held Bill’s hand, not even looking at me, just enough to ensure I was a step behind. When we got to the off-licence I went to hold Fred’s hand but was pushed away. Very upsetting for the man who’s usually at the centre of everything Fred does. In the off-licence Fred was sticking to Bill like glue. In truth it was lovely to see, every boy should have an Uncle to idolise.

Over the next couple of days Fred was in heaven. The family minus me went for a drive around North Kerry, stopping in Listowel for lunch. Fred of course got his favourite chowder and chips which he demolished. It was a very full boy who came home to me later in the afternoon. Not so full though that he wasn’t up for a trip to the beach. I was allowed go but had to sit in the back again. We went to a quiet beach with lots of shells and rocks. It really was a bit of heaven. Fred dug around in a fresh stream, collecting shells and rocks while the two adults sat back in the sun, keeping an eye on the man. We spent about an hour there, all three of us getting nicely tired in the afternoon heat. Once it was time to go I offered Fred a piggy-back to the car and he gladly hopped up on my poor back. Dad was useful for something again. Just as we got close to the car Fred put his head to me ear and said, “I love you Daddy.” All hurt instantly forgotten.

Ruby had come home in the meantime so it was a full house sitting down for dinner that evening. A precious moment in our great summer. Fred sat up next to Uncle Bill. At one stage I watched him and he was copying every movement that Bill was making. Copying him eating and drinking, cutting his meat or buttering his bread. He’s a funny boy is our Fred.

When Bill and Chrissie left on Friday morning the upset was lessened by the present of spending money for the toy store. In a way it made up for the tooth loss that Fred had forgotten about on the day Bill arrived.

I was upstairs and came down to make Fred’s lunch. He wasn’t in the front room or kitchen and when I called him the answer “one minute,” came from the bathroom. That is usually a sign that he’s up to something, usually nothing good. I knocked on the door and Fred opened it a small bit. He was holding a blood stained cloth to his mouth. “What’s going on?” I asked, pushing the door in a bit more. Fred stepped back to allow me in fully. The sink was covered in blood and there were a couple of cotton buds full of blood lying by the taps.

“Ah my tooth was hurting me so I took it out,” Fred said through the cloth.

He had been complaining about a sore tooth over breakfast and obviously decided to take matters into his own hand. The tooth itself was on the sink, a baby tooth but a fair sized one, not unlike the fair sized hole in Fred’s gums.

“Now I can get money from the tooth fairy for the toy shop,” Fred said.

“You’re a bit old for the tooth fairy now,” I said, cleaning up the blood.

Within an hour he was back out playing and forgot completely about the hole in his gums. The tooth fairy wasn’t mentioned again but then Uncle Bill gave him much more than the tooth fairy ever did.

Tough out is our Fred but he’s also the most gentle, loving boy you’ll ever meet.

 

 

 

 

 

 

 

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13Jul/140

A Grand Day Out

This week Fred and I were home alone.  These are the times I love, the men alone doing their own thing but also in the back of my mind is the fear of something happening. Thankfully that fear has rescinded hugely in the last year but it’s always there, somewhere. It’s not as if I couldn’t cope, it’s more the missing of the reassurance and calmness Lisa has when Fred is in seizure mode.   Also when one of us is away you want them to relax, enjoy their time and not to be constantly worrying about Fred at home.

The important thing for Fred is that he has a good time and so with the girls leaving for Dublin at 6am on Thursday, the two of us had a lie-in until nearly 10am. A lovely start to a lovely day. The two of us had a leisurely breakfast and afterwards Fred played with his toys while I went to my office. I’d decided that if the girls were off enjoying themselves the boys could too. With this in mind I promised Fred we’d go out to lunch.

Something he rarely gets to do.

At about half one the two of us set off. We drove across town, parked up from the bank and did some bill paying. Coming out from the bank I decided we’d walk to The Grand Hotel where I knew they did good chowder, Fred’s favourite. It was lovely to walk through town without a bother, saying hello to people and being part of the lunchtime bustle. In the hotel, a lovely old one in the centre of Tralee, Fred picked a good table and we sat down. The waitress came over to give us a menu and Fred put up his hand as if to stop her...

“Ah, excuse me,” he said, “Can I have some fish soup and chips?”

She looked at me; I nodded but whispered for them to be small portions. She wrote it all down.

“And some mayonnaise,” Fred said as she wrote, adding a “please” when she looked at him.

Soon our lunches came and we both tucked in. Though I was worried and was giving him the odd swipe of the magnet, it really was a lovely lunch. People were coming over to say hello, Fred telling them what he was having, if he was distracted long enough to talk. We spent about an hour there, eating and chatting without a care in the world. Afterwards we walked back across town, back to our car, Fred full of ‘fish soup’ and me just delighted everything had gone so well.

Then it was time for the library.

At Fred’s end of year meeting with the teachers they stressed the importance of keeping up his schoolwork, keeping his eye in with reading especially. Knowing that telling Fred he had to do homework during his holidays wouldn’t be easy I came up with the idea of rolling it in with library trips. Fred likes going there and the change in location from home might just take the ‘home’ out of ‘homework.’ Of course I’ve had to make concessions such as first the library and then a trip to the beach or as on Thursday first lunch then the library. There was a bit of trust on my behalf with that one.

The library trips have proved successful though. He’s knuckled down to the work, still capable of drifting off but he’s being doing good work. Teaching Fred requires patience, he can forget something as soon as he learns it but the concentrated time spent in the library tends to keep him focused. Importantly too I have to keep my patience, not easy at times but we’ve got there most days.  Tuesday was a tough day, Fred wasn’t recognising words we’d learnt on Monday and I think the librarian must have picked up on my breaking  patience...she brought over a card game to help with word recognition. When leaving I handed it back but she told me it was ours to keep, which was a lovely gesture.

After Thursday’s trip we went home. Both of us sleepy from the work and the big lunch. Fred deserved his lying out on the couch watching a movie. We actually did two hours of reading and word recognition so he’d put in a full shift. We got a book with a DVD from the library too, on art projects, so Fred read that while watching the DVD later.

After reading work earlier in the week we’d gone to the beach. Another place where my heart is in my mouth that something will happen but that is another fear on which I have to work. Denying Fred something out of our own fears has to stop. Lisa is way better at doing this than me. Fred had badgered his Mum into buying surfing shorts, flip-flops and a sun hat on Monday, so he had all the gear.

The two of us had actually gone to the beach on Sunday. I promised that if he could allow me to watch the tennis I’d take him later. So after Federer had broken my heart once again the two of us set off. My courage wasn’t enough to go all the ways down the beach but Fred paddled in the river, kicking and splashing his way around. On Monday I was brave enough to go to the water’s edge and we repeated this on Tuesday. Watching Fred paddling up and down through the gentle waves was lovely. He so loves the beach, as do I, and seeing him do what any normal kid does is always great. On Tuesday evening he said he was going to go swimming; now at that I had to draw the line.

On Monday evening Fred went up to change out of his beach gear when we got home. After dinner I went up to the room. There on the wardrobe door Fred had hung his new shorts and sun hat. Neatly placed by the wardrobe were his flip-flops. All ready for the next day but also tidied away with pride; his favourite clothes for his favourite place.

Compared to last week Fred has had a return to normality these last few days.

We’ve gone back to the beach, had fish soup in a restaurant and even done some homework.

The girls came back exhausted Friday evening, just in time for me to go off to Cobh for the night. Needless to say I came back Saturday even more exhausted and today is going to be a traditional day of rest for us.

Back to the library tomorrow for Fred.

So will begin another week of fun...

 

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6Jul/140

A Visit From The Past

On Monday Fred and I drove Ruby to Dingle. It was Ali’s birthday and the girls were having a party. On the way out we picked up Ruby’s friend Ella and Fred was happy to be escorting the girls. He was quiet though, usually he’s full of chat and Ruby will inevitably tell him to turn around, to leave them alone. Typical older sister, younger brother despair.

After dropping the girls the two of us drove over the Conor Pass on one of those warms sticky days that summer is all about. As we drove back along the straight road to Tralee Fred was still quiet. Again I asked him why he was so and he answered that he was looking at things out the window. The things he began to recite and after a long list he went back to looking. It worried me that he was so sluggish, not exactly himself though he claimed all was ok.

About 5pm we got home and Fred wanted to go for a walk around the estate. I gave him a swipe of the magnet and off he went, looking for something to do. After a few minutes I went to check on him, he was doing fine, balancing on the kerbstone and he waved over when he saw me. It’s such a feature of the little man’s life having his parents constantly checking in him, that he’s became used to it. I went back inside to start dinner.

A couple of minutes later I saw Fred running across the courtyard to the house, a worried look on his face. By the time I got to the door he was bursting through...

“Dad, I got the confusion, bad confusion,” he said when he saw me.

It must have been bad for him to try and make it home so quickly. He took his medicines, I swiped the magnet and we settled down on the couch. He was jerking but the constant swiping seemed to ease it. Lisa came home shortly afterwards and took over as I had work to finish in my office upstairs. When I came down about an hour later Fred had had a seizure, the usual tonic clonic and was asleep in Lisa’s arms. It had only been six days, the shortest gap in a while, a long while.

He didn’t stay asleep for long as is the normal these days but when he woke he wasn’t hungry. Lisa got him back to sleep again but he woke about an hour later. This time he picked at some dinner, not much and fell into his mother’s arms once more. Then he had another seizure. This was heartbreaking for us, a short seizure free gap and now a second one; this was the sort of day we hoped was behind us. Fred recovered quickly, enough to start watching a DVD but about 9.30pm he went up to bed with Lisa.

I was watching the World Cup and at a break before extra time I went up to check on them. As I got to the bedroom door I heard Lisa tell Fred that Daddy was downstairs and would be up soon. Back down I went and turned off everything, Fred’s sleep was the priority that night.

In bed Fred cuddled up to me and Lisa said to call if anything happened. The third seizure broke through about half an hour later and Lisa took over again. This really was like old times. Fred had three more before 1am when Lisa got his morning medicines into him. Five hours earlier than usual but in these times we try anything. It worked and Fred fell into his deep sleep.

Of course Fred managed another one the next morning, just before he woke. He didn’t want to stay in bed though and came downstairs a bit later to take up residence on the couch. There was a cloud over our house that day, we were worried that the cluster wasn’t going to stop and we were very down that Fred was going through this all over again.

The progress he’s made over the last few months has all been down to keeping the seizures at bay. The school and everyone else has being keeping Freddie moving forward, gaining from the freedom he was enjoying. Now in one day it felt like everything was being taken away again, as if the good times were only a tease, epilepsy playing with us again.  Watching Fred sleep his way through a day once more, lifting his head just to look around or waking from time to time to watch simple TV programs was heart breaking. Those programs which he’d stopped watching, ones that aren’t the least bit taxing, and the ones we hoped we’d never see again.  It was all back with a bang. Even Lisa had a Stesolid on hand, just in case; a drug we haven’t had to use in months.

Ruby came home and Lisa went out for a walk. The house was returning to normal. As I was pottering around out the back, getting a few jobs done before more football I heard a crash in the kitchen. Looking around I saw Fred’s legs sticking out from behind the sideboard. He must have known I was out the back and was following to see what was happening. The seizure must have caught him totally off guard, just as he was coming into the kitchen. Ruby and I picked him up and got him back to the couch, again just like old times.

That last one was epilepsy saying goodbye, the last kick as it left the house. Fred woke not long afterwards and watched a DVD before going to bed. The next day we had a visit from his Aunty Ella and Dan but Fred wasn’t interested, he was zonked from two days of activity. He had some egg and toast around midday which was the first food he’d eaten since Monday evening. Progress in the circumstances.

So that was Fred’s week. Only yesterday was he really anyway like the Fred of previous weeks. The two of us went to the library in the morning, part of a plan we’d devised to keep Fred’s reading progressing. He read well but nothing like he’d been doing with Ms O’Se the previous week. The idea of the library is the choice of books and an environment where reading is what everyone is doing. We’ll try it again though, yesterday was a partial success.

Why did he have such a major setback? Well Fred never does things by halves that much we do know. Was it that for some reason his meds failed, the levels in his system dropped, leaving a cluster through? We can only hope that it was a temporary setback, that the VNS will take over again and the great gains of recent times weren’t just a flash in the pan.

Only time will tell. For now we all have to get our trust back, trust to leave him wander alone again, trust to do the things that were becoming normal for us to do. Yesterday Lisa took Fred shopping with her and all went fine. Today Fred wants to go paddling, weather permitting we’ll give it a try.

Our hearts will be in our mouths but we’ll give it that try.

 

 

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29Jun/140

End of Year

Well Fred’s first full year at Blennerville School has come to an end. The summer holidays finally arrived on Friday and Fred now has the long, hot months ahead of him to recharge his batteries. Leaving day on Friday was very emotional for us, the advancements of this academic year have been unbelievable and are all due to that wonderful team of people.

On Monday we had Fred’s school report. Ms O’Connor and Ms O’Se thought it best for us to meet rather than send an impersonal sheet in the post. Lisa and I headed over first thing and we sat at the desk in Ms O’Se’s classroom like guilty school kids. The report didn’t surprise us; Fred’s advancements were highlighted as were his weaknesses. There is much work to be done over the summer, reading and writing mainly but the emphasis was on keeping the momentum going. How this will sit with Fred is another thing, homework during holidays is much worse than homework during school term. Somehow we’ll have to get around to it but first he might get a week off.

In true Fred style he wasn’t about to sign off from school without a bit of drama. We got the phone call about 2pm on Tuesday, just eight days from his last seizure. Again the school were out at the playing field and Fred had keeled over after running a race. The heat and activities are just too much for him but in time he will adjust to it all. It has been too long since he was able to enjoy such fun with other kids and we can’t stop him now just out of fear. There have been other days when he’s come through it ok but on Tuesday the combination of heat and running was just too much.

When Lisa and I got to the playing field Fred was cuddled up to Denise in the goals. The other kids were still doing their races and not in a drama over Fred. Just how we want it, the epilepsy is part of Fred but it doesn’t define him. No, Fred is a wonderful, loving, full of fun and popular boy, something Ms O’Connor was really emphasising at our meeting. “A pleasure to have in the class,” was how she put it.

We bundled him into the car and got Fred home in a couple of minutes. On the couch he slept for the rest of the afternoon, waking for toilet breaks and a glass of water. Even when Otto arrived on his odyssey from Derry Fred slept on, only waking at 8pm looking for dinner. Once again he didn’t cluster, we didn’t have to intervene and the next day he was as right as rain. The short gap was a disappointment but we think that was due to the heat and running around. This we don’t know for certain but we’re enjoying the improvements for now.

Fred was back to school Wednesday, a bit shy but was given the usual welcome from all the kids. No fuss, no drama, just how it should be. When I collected him afterwards the girls were giving him big goodbyes and he was full of fun from yet another great day at school.

That night I went to Dingle on a sleepover. Judy was over from Australia, Conor was down from Dublin, Otto down from Derry and Jenny from Mayo. A reunion of sorts and it was at least ten years since we’d all been together, if not longer. Fred didn’t want me to go and I had to lie that I wouldn’t be gone for long. It was actually very hard for me, I really missed the little man, the fact I wasn’t worrying about him probably made me miss him even more. Previously the worry would override all other emotions but on Wednesday night not going through our usual routines was a bit odd. Normal stuff for a parent really and couldn’t let it overshadow my night away. Not that the company I was in would let it and we had a ball.

By the time I got back on Thursday morning Fred had gone to school. It was a long morning waiting for 2.30pm to come around, waiting to see my man again. Lisa and Ruby headed off to Waterford for Granddad Jimmy’s birthday barbecue about 2pm, leaving me alone. At 2.15 I headed off to sit outside the school, waiting for 2.30pm to come around. When Fred eventually did appear in playground I was struck by how grown-up he looked. Maybe it was the short time away or maybe it was that I was waiting for him but out walked a confident 11 year old boy, one that I hadn’t noticed fully before. He nearly knocked me over with the hugging and kept saying how much he missed me. It really was a great welcome home.

Back in the house Fred hardly noticed that Mum and Ruby were gone. The weather had broken, the rain was lashing down and Fred wanted to do nothing, just lie out on the couch watching a movie. This suited the tired me perfectly. I could read and doze while Fred did his thing. Even when Ms O’Se called over with some presents Fred wasn’t too disturbed, gladly chatting to her and thanking her for everything. That evening the two of us had dinner on the sitting room floor, watching TV, cuddled up under a blanket.

Bliss for Fred and Dad.

On Friday Lisa and I headed over to the school with presents for the three teachers, “the women who care for me,” as Fred calls them. At midday they whole school trooped out, the 6th class girls crying at their last day, the boys running for the gate shouting “freedom.” Lisa and I had emotional thank-yous with Ms O’Connor, Denise and Terry, the principal. Hugs and kisses, tears and goodbyes while Fred sat in the car waiting. The school has done so much, all in their stride, and it is beyond words to express how much they mean to us.  Fred’s improvement is the tangible proof of how wonderful Blennerville School has been it will be only in future years that it will all be put in perspective. For now all we can say is thank you Blennerville, thank you so very much.

That afternoon Fred had a special visitor, one that I kept secret from him. Luckily Conor arrived early in the day so Fred’s curiosity over the ‘secret visitor’ was quickly satisfied. Fred was delighted to have Conor in our home, as were we all. Fred took him upstairs, into all the bedrooms, all the ‘attics’ and then outside. We had a great lunch, much chat and laughter. Fred loved it having Conor with him and it was a very sad man who said goodbye a few hours later. We’ve been promised a return visit, a sleepover by Conor and Cathy which will be wonderful for us all.

To cheer-up the man and stop him wondering when Conor would be back, I told him we were having another surprise visitor on Saturday. As Fred had been asleep he’d missed Otto on the way through on Tuesday. So when he arrived dinner time Saturday Fred was only too happy to take him on another house tour. Otto stayed for dinner, Fred sitting beside him at the table, listening to all that was going on. Much to Fred’s delight Otto stayed overnight so he had him for breakfast again in the morning. I don’t know if Fred remembered meeting Otto before but he took to him immediately and was sad when he left.

It’s been a great week, Tuesday’s hiccup besides and a great start to Fred’s summer holidays.

Hopefully they will be busy holidays, full of fun, laughter and visitors.

 

 

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