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

23Nov/140

Encouragemnet

Recently we’ve seen great improvements in Fred. It’s probably that the cumulative effect has become more noticeable than it been any sudden change in him. Habit has played a big part, the daily routine, not letting him slide into bad practice and encouragement. Not long after Ruby was born someone said to me that encouragement is the greatest thing you can do for a child. Certainly with Fred we can see the effects; the fact that Ruby is wonderful may be down in part to our encouragement, who knows?

Not too long ago I couldn’t have let Fred alone in my office. Every drawer would have been emptied, every pen left uncapped and every piece of paper scribbled or drawn on. Last week though I did leave him. Fred had come up to see what I was doing, it was early evening and I think he wanted to spend time with his Dad rather than the girls. While I worked he took things out and rummaged about.  After I’d finished I said that I was going back downstairs...

“I’m staying here,” Fred said.

“Can I trust you not to take out anymore stuff and to tidy up afterwards?” I asked “and not to go near that bottom drawer?

“Yes my Dad,” he answered, almost annoyed at me.

“I trust you.”

“Yes my Dad.”

Later he came down and watched a program before going up to bed.  A couple of hours later I went up to check the room. Everything was as tidy as I would have left it myself. Things were put back in the right drawers and the bottom drawer looked untouched. I was genuinely surprised, delighted and even a little emotional at such a demonstrable sign Fred’s improvement. In bed I told him how proud I was of him and he just said:

“I know, now leave me alone I’m trying to sleep.”

In all of his activities there are improvements. Fred’s schoolwork is coming on, though after seizures he slips back a bit which is a real curse. On Monday the school called saying that Fred was unwell. I went over to asses him. Ms O’Connor and Denise were a bit sceptical but we all know not to take a chance which is why they called. Fred looked a bit pale but not too bad. Maybe because the cluster had been comparatively mild that it hadn’t cleared fully. To emphasise the point Fred moaned and groaned while moving closer to the door. To be safe I took him home.

At home he went to bed and slept for a few hours. He woke about 2pm looking better and even sat up to have a chicken sandwich in bed. Bliss. To add to it he got the laptop and watched a few Ben 10 episodes while I worked at my desk. Later when Ruby came home she snuggled up to him for a while and by dinner time Fred declared:

“I think I’m better now.”

The next morning he went off to school and performed to his best. All the teachers were delighted with him and at homehe flew though his homework, impressing his mother on the way. Sometimes we just have to go with it, listen to Fred and let him have his time when needed. A different type of encouragement.

By Friday Fred was fed up with school but went because it was the last day. There was also a cake sale as a fund raiser and Lisa was up early baking. At about 10am I went over with the Tupperware’s of cream and chocolate buns. Not cupcakes, these are proper buns that taste delicious. Just as I came in the gate Fred walked around the corner with Ms O’Se and a big smile broke on his face when he saw me with the cakes. With the smile getting bigger he took the Tupperware and walked in with to the cake sale.

“Oh excuse me these are from my Mummy,” he said struggling with the boxes, Ms O’Se and Denise standing watchfully over him.

Afterwards I asked him how he got on.

“Great,” he beamed, “I had four cakes.”

Yesterday I was to go away and Friday evening I asked Fred take charge, that I trusted him to be good and not to be fighting with his Mum or his sister.

When leaving in the morning I said it again, adding a quote from Voltaire...

“With great power comes great responsibility,”

He nodded in assent.

I got home about 8pm and Fred ran out to greet me.

“I was great at being in charge,” he said after giving me a big hug.

Now we just have to hope he doesn’t get too power hungry.

 

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16Nov/140

Bird Watching In Blennerville

Fred and I are just in from bird watching. There is a spot not far from home, next to the Blennerville Windmill which is ideal. In the car park is a grassy bank, where we climbed and took up our positions. We had a pair of my father’s binoculars which did the job perfectly. It took Fred a few tries but eventually he figured where to look and his excitement of seeing a bird on the wing was great. In my pocket I had a book of birds but luckily I was able to identify the ones we saw from sight alone. Beautiful Brent geese, an egret, a heron, some Terns and a lot of crows. During the week I’d seen starlings doing their air display but none of that today.

After about a quarter of an hour Fred got the confusion so we packed up and headed home. I’d forgotten the magnet, which was silly of me in the circumstances. Back home I gave Fred a few swipes and he was as right as rain in no time.

“I’ll just have a lie down and watch The Cat in the Hat,” he said, pulling a blanket over himself.

Ten minutes into the movie and we got a call from the girls to come and collect them. Before going bird-watching Fred and I had dropped them at the gym, now they were finished. Off we drove and picked them up. All the way there and back Fred was talking of his trip to New York. Yesterday evening he overheard Lisa and Ruby talking about a fantasy holiday to the Big Apple. Now he has it in his head that we are going but the deal is that we have to wait until he gets better. That and winning the Lotto. It’s tough on him and the family that we can’t do such trips but yet one day we will. A big decision made was that we were going on the plane rather than a boat and we were going to stay in a big hotel for a long time. All ok with me.

The week has been a good one for Fred. On Monday he started a new routine. Instead of me walking him into to school he now wants me to wait at the car while he goes on his own. I was happy with this, a sign of his independence and growing confidence. Once he reached the gate he turned to wave and then Denise walked out to him. She saw me waiting and gave me the thumbs-up, she had him, all was ok.

At lunchtime Denise told me of the consternation Fred had caused with his new routine. Apparently some of the kids came running into her shouting:

“Freddie’s walking in, on his own!”

She too was delighted with the new move and now it’s our daily routine, me waving and the thumbs-up from Denise.

On Thursday though I knew Fred wasn’t himself. This time he wanted me to walk him in and hold his hand. A step backwards I thought. After school I was waiting outside when I saw Ms O’Connor come out and look around. Not a good sign. When I got out of the car she just gave me the nod. That knowing nod. Fred had been waiting to go home, sitting in his chair with his bag on his lap when a seizure struck. No panic though. We made him comfortable, waited for all the kids to leave and when the chaos had cleared I drove the car into the yard. Fred walked out, got in and we went home.

It wasn’t a bad cluster, the rest of the day was clear, Fred even woke for dinner. The next afternoon he had a couple more, nothing serious and today it feels like nothing happened.

Fred has this lovely practice of lying in bed with his eyes closed and asking me questions before drifting off to sleep. Sometimes it’s about what I did as a boy or it might be about when Christmas will be here.  On Tuesday night he lay there, and I actually thought he was asleep, when he came out with...

“Dad?”

“Yes?”

“Was your Daddy on the moon?”

“What?”

“Was your Daddy an astronaut?”

“What?” I was confused on this one, wondering where he’d developed the line of thought.

“Was your Daddy an astronaut when you were a kid?”

“No, why?”

“Oh, nothing, night Dad,” he said rolling over on his pillow.

Where he got that one I’ll never know.

That’s the beauty of our Fred.

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9Nov/140

A November Saturday

It’s a dirty day. The rain is bucketing down; the clouds are dark and heavy. Without a doubt winter is here and the jackets are on again. Going out this morning with Fred the sun was shining, by the time we were coming home the skies were opening and we hadn’t been out that long.

Taking Fred with me at the weekends is something I should do every week. At times I just leave him be, enjoying the break from school and whiling away his day. Then come Sunday evening I always regret that he hasn’t done much, evidenced by his slowness from not being challenged. Fred’s life is challenging, he has many hurdles to overcome, but his brain needs to be challenged too, that is the other side of the coin. So when I said after breakfast that he was to come out with me his first reaction was to say no, or “no, thanks,” as our polite boy puts it. Other weeks I would have said ok but this time I insisted. After a shower and a change of clothes Fred was waiting with a shopping bag, happy to be going out. The two of us set off, leaving Lisa at home; our Ruby had gone to Cork at 7am, school stuff not shopping...

Fred and I drove over to Super-Valu. Inside he set off on his own, something I am getting confident of letting him do, only checking on him every five minutes. When he did come back to me he had some scented Christmas candles in the bag,

“You can’t be taking stuff off the shelves,” I said.

“But I didn’t take it off the shelves my Dad,” he pleaded, “they were on the table over there.”

It took a few minutes of explaining that it doesn’t go down well to pack your bag before paying for goods but he got there in the end. We kept on shopping until Fred found a display of DVDs and spent the rest of the time shifting through them. As a reward for doing good work, he had to pack the bags at the checkout and carry them to the car, he was allowed one that hadn’t already got at home. Since we got back he’s been watching it, happy that his Daddy is happy and not onto him to do something.

All this comes at what I think has been Fred’s first full week at school for a while. Between seizures, illness and school holidays I think it may be his first this term. It was a good week for him; he did his work, did his activities and came out yesterday afternoon with a smile on his face. It was Friday, the weekend was here and no homework, the perfect day really.

Little by little Fred’s schoolwork is improving. Despite setbacks due to days off I can see his writing reading and maths getting better, still behind others of his age group but that can’t concern us now. What is important is for him to catch up, get the basics right so he can move on. At times it feels like pulling teeth but those days are getting fewer; he is making progress. At night now he reads some of his books on his own, not stopping over words he knows but pushing on, getting to the end of a sentence. It may only be a paragraph here and there but it’s an improvement.

During the week Sam Maguire paid a visit to the school and Fred got a lovely photo of himself with the cup. Fred had no knowledge of what the cup was for just that it was a ‘massive trophy the football team won.’ A good way of putting it I suppose.

For the rest of the weekend Fred will take it easy. There is no point in going out, the weather just won’t let up. A call has been put out for Jaden to come over but that doesn’t look likely now.

Fred is happy cuddling his Mum, his Mum is happy to be cuddling him while the rain falls.

A typical November Saturday really.

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2Nov/140

Halloween

Fred Halloween

This was a week of great days. Days when nearly everything goes right and Fred’s life as well as our own knock along as normal as possible. Fred will always ensure that every day is different no matter how normal it may appear. He’ll find a way of doing things or saying something that is just off centre making us either laugh or cry in the process. Our man has a knack of looking at life differently, sometimes with a single minded purposefulness that would take me years to get down on paper not to mind do justice to his way of thinking.

On Tuesday Ed Galvin paid us a visit, killing time between appointments . Fred came with us on a trip to the electrical shop as we needed bulbs for the kitchen. When I was growing up we had one bulb for the kitchen, a strip-light in the ceiling. Today in our kitchen, which isn’t much bigger than the one I grew up in, we have nine ceiling lights, six under shelving ones plus the two in the hood over the cooker. Energy crisis? What crisis? Anyway I needed to replace some bulbs and we drove over in Ed’s Bentley.

Fred took the front seat, Dad was relegated to the back and at the store Fred took Ed’s hand. In the store he stood near Ed watching what he was doing and taking in the new experience. For me it was great as Fred stood still, wasn’t pulling at everything and not asking to buy a torch, for once.  No doubt Ed had an influence but Fred too has grown-up a lot lately and he came through this test in flying colours.

That was day twenty-three in the current cycle, a record equalling day for Fred. When Ed extended an invitation to lunch we thought it better not to push it and Fred stayed at home with his Mum. We still live in fear of something happening in public places; no matter how well life has being going for the man. He didn’t mind too much though and when I came back he was happily watching a movie. For the rest of the day all that was on my mind was would be make it to a record breaking day twenty four.

Wednesday dawned and Fred had made it. He got up as usual and had a good breakfast. Ruby had gone off to Cork with the Currans so when Lisa went to work at noon it was just the two of us. He wasn’t quite himself though he had lunch and I worked around him. During the afternoon he asked me to sit with him on the couch which I gladly did as I had one of those feelings. We watched a movie and some TV. About four o’clock he gave me his glasses and rolled over on his side, immediately falling into a deep sleep. Twenty minutes later and the seizure struck and so day twenty-four became our new milestone.

Lisa came home an hour later just as the second broke through and she wasn’t surprised. Neither of us had really spoken that we expected a seizure but we both knew it was on each other’s minds.  In the way only Lisa can she took over Fred’s care and got him through the rest of the evening. It was a bad cluster, spread out over the night but at 2am Lisa called a halt by giving him the Stesolid. We try not to give him the shot as it can stay in his system for days, making him lethargic and it reminds us of the boy he was just a couple of years ago. But after five or six seizures you give up hope of the VNS stopping the run and intervene.

Fred was wrecked the next day but asked for his breakfast about 2pm. As he hadn’t eaten since lunchtime the day before I made him plate of fried eggs and toast which he ate. His appetite was good and he was sitting up watching TV, all back to normal in under twenty-four hours which says a lot for our man.

That night going to bed Fred asked for a bedtime story. I found him a book and he sat up on his pillow waiting for me to get ready:

“Ooh,” he said.

“What?” I asked.

“Ooh, ooh,” he repeated and slipped into a seizure.

That last one, almost a goodbye from the epilepsy as it leaves after a cluster. Sometimes it hits in the morning, other times in the evening and now just as he was going to sleep. We made him comfortable and he slept through the night.

Friday was Halloween, a day Fred had been looking forward to for weeks. Ali and Hannah came in for a sleepover, adding to the excitement for Fred. Once it got dark Fred started to get ready and the two of us set-off trick or treating. At each house we went to I stood back and Fred rang the doorbell, sometimes twice if they didn’t answer fast enough. As we were the first out Fred did well, very well indeed. So much so that I had to carry some of the loot in a separate bag, much to Fred’s delight. Back home he showed Mummy how much he’d gotten and poured it all into a bowl to look at.  He showed it to the girls after they came home from the cinema, proudly offering them to take a sweet.

That evening I watched the original Halloween movie and Fred, sitting next to me, did as well. Though it’s a bit dated now it still has some scary bits. Going to bed Fred asked me:

“Dad?”

“Yes Fred,”

“So there isn’t a man with a knife and a mask in our house?

“No, of course not,” I laughed.

“Not on the stairs? Not in the bathroom? Not in the bedroom?”

A good scare makes a perfect Halloween.

Yesterday the two of us went to the cinema. For some reason we got out of the habit of going and the new Teenage Mutant Ninja Turtles was on, in 3D. We queued, bought our tickets and the 3D glasses. In our seats we put on the glasses and the movie began to roll. The 3D was new to us both but Fred loved it, taking off the glasses and putting them on again, seeing the difference. For about twenty minutes all was well but it got quite dark and noisy. Fred said he was scared, that there was too much jumping. Whether this was due to the surround sound and 3D or maybe a throwback to the Halloween movie I don’t know. We left but the manager kindly put us into an animated movie and all was forgotten. Fred ate some of his sweets from the night before, pulled up the armrest and cuddled up. A great way to help with his recovery.

This morning he slept in and came down for breakfast about 10.30am.

“I’m back to normal now,” he announced, clearly rested after the long sleep.

Another one for the books.

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26Oct/140

Charming the Ladies

On Sunday Ruby and I went to Dublin. It would once have been strange for the two of us to head off leaving Lisa and Fred behind but such is the progress we’ve made that hardly a mention was made. We left Sunday evening, the two cuddled up on the couch, looking forward to the peace of having half the family gone. In Dublin Ruby and I were well looked after by Conor and Cathy, the only thing missing were the two back home in Tralee.

We got home Monday evening to dinner on the table, a pleasant surprise, and Fred delighted to have us back. I was the delighted one though as Fred was still ok, no signs of any activity, a day down at school and another day ticked off on the seizure free calendar I keep in my head. Again Dr Shahwan has come good, not letting us be distracted by short-term setbacks and helping us keep our heads when before we may have lost them. Today is actually day twenty-one, three lovely seizure free weeks for Fred and the family.

On Tuesday evening Fred had to get the flu jab. For conditions such as epilepsy the flu can be a danger, skewing medicine levels, pushing up temperatures and letting in seizures. Even those couple of chest infections Fred got lately had him in hospital, something that we want to avoid as much as possible. The two of us went to the doctor’s surgery to get the jab and Fred really impressed me by how he behaved in the waiting room. On previous occasions he would have been into everything but this time he sat still, waiting his turn like the rest of the people. When our turn came Fred walked in ahead of me and out of habit got up on the couch, though the nurse offered him a chair. The jumper was off and then he began unbuttoning his shirt, again out of knowing exactly what was expected of him.

The nurse got the paperwork and asked me to sign:

“Now Dad,” she began in the manner all medical professionals address me when with Fred.

“He’s John Verling,” said Fred.

“What’s that?” she asked.

“He’s not your Dad, he’s John Verling,” explained Fred.

Nurse Sile laughed; Fred had won her over.

Fred gave his usual “jesus Christ almighty,” when the needle went in but otherwise all went fine and we were out the door after a few minutes. Back home Fred showed off the bandage to Ruby as if he’d just gotten home from the Front and Ruby was suitably impressed.

Wednesday afternoon and I was driving over to the school to collect Fred when my phone rang. Denise was calling to say Fred was in a bad way and to come straight in. Like Steve McGarrett I pulled up outside Blennerville gates, lights flashing and parking on the double yellow lines. Inside Fred was slumped on a chair, as pale as a sheet and moaning. Just a couple of minutes earlier he’d told Denise that he felt bad and needed to get sick. Around him were Ms O’Connor, Ms O’Se, Denise and Terry, the principal. Fred isn’t short of carers at school that’s for sure. I looked at Ms O’Connor but she said “no, he hasn’t had a seizure,” but it did look as if one wasn’t far away.

As it was school out time the last thing I needed was for Fred to keel over in front of the parents and pupils. So I asked Fred to stand up which he did, then I picked him up and rushed him out the door to the car. Terry ran in front of me opening the door and Denise threw all Fred’s stuff in the back. We strapped him in and I turned for home.

“I’ve got bad confusion,” said Fred, “and the puke is in my throat.”

Seemed like the worst of days but we got home and Fred was soon lying out on the couch. After a small snooze he woke and asked for lunch. A chicken sandwich later and he was sitting up watching a movie. By the time Lisa came home he still had “a little confusion,” as he called it but seemed past the worst. Dinner was had and Fred went off to bed, still with bouts of confusion but slept through the night. On Thursday we kept him home, for observation really but also to help him recover.

On Friday the class were going by bus to the library for a story telling session. Fred said he was up for it and so I drove him over at the usual time. At the school he told to walk behind him, as he was able to go in on his own. So I walked a few paces behind, Fred holding his hand up to tell me to back off. At the classroom door he stopped, the kids were at their desks and they all looked up at him.

“I’m back!” Fred declared hands up in victory.

“Hi Freddie,” they all replied, happy to see him.

“You’re back Freddie,” said Ms O’Connor, looking at me and I shrugged my shoulders in reply saying that all had been ok, he’d come through the couple of days unscathed.

Whether it was the flu jab causing the disruption or the VNS kept a cluster at bay we’ll never know but Fred carried on regardless. On Friday evening Ruby had some of her new friends over to get ready for the school disco and Fred won them all over. He found photos of Ruby as a baby and passed them around, the girls loving his sense of humour as he laughed at each photo before he handed it over.

Being charming without realising it is a special skill and Fred does it at ease.

Long may it last.

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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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