Daisy And Me People I meet when on my walks with Daisy

30Jun/130

Six Months On

This has been a normal week for us. Yet so abnormal compared to the last few years that its one we never would have imagined happening. For the last five years, if not longer, Lisa and I have been consumed with fear, so much so that we’ve been scared to do anything. So many times did something happen after we’d done something that we lived in fear of consequences. Lisa would go out somewhere or dare go away for a night and Fred would have a seizure. Remarkably I don’t think the same happened to me but definitely when I went to the beach, on a walk or up the field behind our old house Fred had a seizure. All these episodes left us in fear of doing anything and many was the night that ended in tears or in anger. Tears, shared or shed in private, over our little boy and what was happening to him. Anger expressed in a good row or alone in a darkened room at epilepsy and anyone or anything connected to it.

Six months ago, to the night, Lisa, Freddie and I sat on our bed and watched the fireworks of New Year’s Eve explode over Tralee. It was such a magical night, the look of wonder on Fred’s face was priceless, and even now today it brings a tear to my eye. Even though it wasn’t said on the night I can bet that Lisa and I were both wishing the same thing for the year ahead. In fact I’d say that PaddyPower wouldn’t even have opened a book on that one, the odds would have been so bad for them.  Which all makes the week gone by so much more wonderful for the normality of it all...

Freddie spent a full week at school, again. Now we’re more worried about how he’s getting on in the classroom rather than if he’s having a seizure at his desk. The feedback from his teacher and Denise his SNA has been great. Fred has settled well, is learning, is popular with all the kids and has made some good friends.

As this was the last week we had to deal with the concept of school holidays, something Fred hasn’t had for a few years now...

“Dad,” he said on Monday, “Denise said something to me, something like this, ’on Friday we’re going on holidays.’” This he said with his arms up in the air and his palms out in excitement.

For the rest of the week Lisa and I were blue in the face from trying to explain his holidays were FROM school and not that were going anywhere...

“Are we going up the hills?” Fred would ask, up the hills being Fred’s phrase for going away. This comes from when living in Dingle we’d have to go through the hills to go anywhere.

It took a couple of days to put him straight on that one

“There’s no more school?” he asked me another evening. The idea of getting just a break from the class took a while to sink in.

Holidays just to do nothing; that really is something new to our little man in his new, normal life.

Two things are at play here: one is the fact that Fred just isn’t used to the idea of getting school holidays and the other is that because of his meds it does take him time to process new concepts. After a full week of explaining we think he finally has it but you never know with Fred, he may yet find another angle to question.

A couple of other normal things happened this week. For one I went away, to West Cork, just for the day to visit the Flood family on their annual trip. For once I wasn’t scared of something happening at home, of course I was aware that something could but I wasn’t consumed by it. Even though I was thinking of Fred at home, it didn’t take me over as it has done before, such much so that I haven’t gone away purely for my own reasons, for a while.  This was a trip to get a chance to see all the Floods and Cathy Berry in one place but it also had a special place in my own heart. By pure chance the holiday home they had rented was the very one my Dad had taken us three kids to back in 1974. The first holiday away after our mother had died. She had died in February, the holiday was in that June and I hadn’t been back since. So while it was another normal thing to do and another part of our doing every day things again it was also full of emotion for me in other ways. Life is so peculiar the way it throws up such connections and comparisons. My father had taken us away to try keep life as normal as possible and here was I back in the very same place almost exactly 39 years later trying to make my life as normal as possible too.  Of course I was conscious still of being away from Fred and as always dreading that call or making a call to find he was knocked out. Though I left at 5.30pm, I dearly would have loved to have stayed for dinner and maybe even over night. That would have been a bridge too far for me just yet, something in my head was stopping me and it’s something I’ll have to deal with in time. For now the day spent doing things like going for a stroll with Conor, lunch on the terrace or paddling in the waters of Red Strand with Ger and Conor was just wonderful. Leaving, I was anxious to get back to my own family but delighted I’d made the trip, for a load of different reasons.

Another everyday occurrence was Lisa and Ruby went away for a night. Of course Lisa was full of anxiety but she did it, someway relaxed that Fred is stable and she wasn’t going too far away.  For me being at home I was nervous too, I’m not as capable as Lisa in dealing with things but I’m getting better. It was great for Lisa to go spend time with her Aunts Marjorie and Helen,  cousin Thadie, Aunty Claire and the two Tynan sisters. For once she wasn’t asking me repeatedly if I would be ok, should she stay at home? It really is a good sign that it wasn’t the fact they were going away was the worry but only if her and Ruby would get beyond the first roundabout outside of town. They did and what’s more they had a wonderful time, chatting, laughing, walking and swapping stories like only those women can. Not once did we have an anxious call asking if everything was ok, asking if I was coping. No, we just chatted as we normally do and this allowed Lisa to get the break she so definitely deserved.

Back home Freddie and I enjoyed the peace of two men in paradise. When the girls left we went on a drive out to Fenit, stopping on the way for a bottle of lemonade, a treat for the day that was in it. On Fenit beach we collected shells for Mummy and walked in the sand. After a few minutes we got back in the car and drove out on the pier to watch the boats while drinking our lemonade. Fred was anxious to go back to the beach to get more shells for Mummy. Though she was away she wasn’t far from his thoughts. So after getting a good collection we went on another drive; Fred had a snooze on the journey home, tiring times for a little man.

That night we were sitting down for dinner but Fred didn’t like the look of what was on his plate. In fact he coughed up his first bite into a cloth. Because we’d been out gallivanting all afternoon the fridge was fairly bare and I sent him inside while I rummaged about. The dinner he ended up having broke all the rules but the look on his face when I brought him in a tray with a plate of crispy chicken pieces, fried garlic potatoes and baked beans made it all worth while...

“Jesus Christ Dad, thank you,” he said, the look of excitement at the fact we were being bold, coupled with the idea of the delicious dinner was just beautiful.

“Don’t tell Mummy or Ruby,” I said.

“I won’t.”

That was the last I heard from him for a while.

We slept well Thursday night and woke early for his morning meds. At school Denise came and collected him. Fred was laden down with Godzillas. As it was the last day they were allowed bring their favourite toys with them and so while I had been making his lunch Freddie was stuffing his school bag with the figures. What the other kids knew of Godzilla I don’t know but I’m sure after a morning with Fred they would have know a lot more than before.

Later Denise walked him back out. Denise gave me a bag of Fred’s stuff. Just homework stuff I presumed; the two said their goodbyes and we drove home.

Back home I went through the bag.

In it was a book of memories from Fred’s first few months at school. It caught me totally unawares and I broke down in tears. This beautifully and thoughtfully put together scrapbook of his time so far at Blennerville was just too much for me. There was a self-portrait, drawings of Godzilla, a painting of Fred and Mummy at the beach and to top it off pictures of Fred with Jayden posing for the camera and of Fred playing the tin whistle in class.

Just a normal end of year book but so not normal for us that it was just wonderful.

Fred came in and in a matter of fact way went through it page by page, explained what each bit was about.

A really wonderful way to finish what was just a normal week in our house.

Who would have guessed six months ago?

 

 

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23Jun/130

Piano Playing, Chicken Rolls and Paddling

Friday was Freddie’s bad day in this cycle. In a good way at looking at things, and you have to find positives, is that Fred was back on the fourteen-day cycle. Well almost, thirteen days to be exact since his last seizure but far better than the seven-day turnaround he had slipped into recently. Thirteen good days we’ll take and it’s always better than the two-day gap he was enduring before Christmas. Now Friday is behind us, Fred and I are doing our usual Sunday morning…he watching Godzilla, me dozing beside him in the comfort of his warmth. In typical Fred style of settling in for a hard day on the couch, he has a stack of chosen DVDs out of the carry-case, lined-up to be watched as the wind howls outside the windows. However, we’re going out for a drive later, all part of the new normal, so the sun better begin to shine. Last Sunday it was so miserable we didn’t venture beyond the front room; Freddie watched a rake of DVDs whilst Lisa and I watched the Deer Hunter. It all ended about 7pm with Lisa in tears and me in the kitchen shouting “mao!, mao!” while making the dinner.

 

At exactly 4am in Friday, Fred’s clean run finished. The smallest of frontal lobes broke through, probably no more than 5 seconds but still enough to wake me. Lisa came down and we gave him his daily medicines, in an effort to ease the day that was ahead of him. Funnily enough he was off school anyway on Friday so it now means he’s only missed the one day to epilepsy since he started in Blennerville. At about 8am we got up and Fred had a big breakfast, I was conscious of building up his strength for a day of seizure activity ahead. Before he came down he’d a couple more of the frontal lobes so he was a little confused but got the breakfast eaten.

 

Mid-morning and I went off on a few jobs, by the time I got back he’d had the first big seizure. It knocked him and he was sleeping soundly next to his mother. Almost on the hour, for the next four hours, he had a big one with a couple of small ones in between. This was the biggest day for a month or so but we’re so used to it by now that we tried to carry on as normal. As the day went on I was coming and going, trying to keep myself occupied while Lisa just sat there, caring for Fred, coaxing him through every seizure without leaving him once. As Ruby was away, I had nobody else to put my energies into, normally I cook her elaborate meals or spend my time ferrying her about when Fred is having a bad day, my way of coping.

 

As the seizures weren’t leaving him be, Lisa decided to give him a shot of Diazepam. This was about four o’clock, the first time for a while that we had to do so, but he’d had enough. The problem with the Diazepam is that it stays in his system for a couple of days, even today two days later, he’s still a bit doped. The good side of it is that, combined with his evening meds, it eased him through the rest of the day. From then on he had only the frontal lobes but, as always, the epilepsy left with a bang; a big seizure about 7pm which seemed to signal the end. A bit afterwards he tried to rouse himself but though his eyes were open, it was just the thousand yard stare of man who had been through one hell of a day. The fighter was ready to put it all behind him, he’d gone toe to toe with the epilepsy and our Gorgeous Man was on the road to recovery.

 

About 9pm the two went off to bed, the day down and hopefully, hopefully, hopefully another couple of clear weeks ahead of us.

 

This last clean break has been wonderful, as it always is, wonderful for us and more so of course wonderful for the little man. It’s funny that when we were with Cathy Madigan last week and Fred didn’t perform, we assumed that a bad session was on its way. No, in true Fred style he did another ten days clear before succumbing. Why the medicines can only keep the epilepsy at bay for a period of time is beyond me, but then as I’ve said before it’s a curious condition.

 

In the last week Fred has been going through the spare room upstairs. When we moved in here, over a year ago now, Lisa put a lot of stuff in the spare room, stuff that she couldn’t throw away but didn’t want cluttering up the house. Fred calls it the attic and every now and again he remembers something and goes rummaging to find it. When he finds it and a few more things besides, he drags it downstairs, much to his mother’s consternation. I can usually tell this is happening by the despairing “oh for fucks sake Freddie,” that wafts up to my office. For such a lady Lisa can swear like a trooper, but with style. At one stage, I was thinking of applying to the registrar’s office to have Fred’s birth cert amended to read as “Fucks Sake Freddie.” Anyway, this week Fred came down with the electric piano he got for his birthday a couple of years ago. He’s musical and though not trained, he can follow a tune on the piano. So he had it in the front room for the evening, much to Ruby’s annoyance as the noise from it interfered with her YouTube watching.

 

As is usual with his figaries, Fred wanted to take the piano up to bed with him. To keep Ruby happy we’d put it at the foot of the stairs to stop him playing it in the front room. As he passed he tried to take it with him, but Lisa put her foot down and after much argument, it was left behind. They went up the stairs and as I heard the bedroom door close, I began to count…by the time I’d reached 28 Lisa was back downstairs retrieving the piano, laughing at how a Verling man had broken her down again. She carried it up to the bedroom with a blast of “for fucks sake Freddie.”

 

There it was at the foot of the bed when I went up a couple of hours later.

 

On Monday evening Tara came in for an overnighter with Ruby. As usual it was great to see her and Fred was delighted with a woman to impress. As we sat around the table having dinner Fred got in trouble though, by trying too hard. He gets himself so excited he overdoes the acting and it embarrasses Ruby when it slides into childish stuff. As we’re also trying to encourage him to be his age, Lisa and I also come down hard on any baby talk or playacting. Of course we don’t want to stifle him in any way but with the meds and epilepsy, he can slide into being a six year old when he’s a brilliant ten year old. So the little man got in trouble and was sent inside when the meal was finished, so as to give Tara a break. I went and sat with him, he had a look of sadness on his face and said that he was sorry but I asked him why he had been too silly at the table…

 

“I don’t know,” he said, his little eyes looking at me and then breaking into tears, cuddling up to me.

 

When Fred cries he becomes a blubbering little boy and the tears really flow.

 

“Its ok little man,” was all I could say as he apologised to me for misbehaving, in the process soaking my t-shirt with the floods of tears.

 

Then he said, through the tears…

 

“Dad, I’m sorry I can’t stop the fainting,”

 

He blames himself for the epilepsy, as if he’s letting us down, oh I’m so proud of this wonderful man of ours.  When this is all behind him, I really hope he can see how he took on this condition with a dignity far beyond his years. Even yesterday, when in recovery his smiling face and good humour would have humbled anyone.

 

Also during the week we drove out to Fenit. The weather wasn’t great but a trip to the beach is always welcome. On the beach we walked around, collecting shells just happy to be out doing such simple things after years of living with fear. After a few minutes Fred walked off to the waters edge, me holding his hand as tightly as I could. Fred was heading for the sea. He slipped off his shoes and with his bare feet had a paddle up and down the sandy beach. In my mind this was his first time in the coldAtlanticin about four years.

 

I had to drag him out, he loved the feeling so much he didn’t want to leave. Elaine was coming over so we had to head home, much to his annoyance, but the promise of Elaine’s tickles compensated for the disappointment.

 

Now it’s lunchtime Sunday. Fred has put a week down that would faze most of us. He’s getting ready for soup and chicken rolls, a favourite of the moment.

 

Later we’re going to go paddling again and put Friday behind us.

 

Fred has plans to go diving…

 

 

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16Jun/130

Neither Here Nor There

After last Saturday we tried to get on with the weekend as normally as possible. Though Fred had got a bit of a kicking from the epilepsy on Saturday by Sunday it all seemed behind him. A curious side of this epilepsy, and there are many sides to this condition, is that if Fred doesn’t get a good going over on the day of attack he only seems to get a week before another big day of seizures. Its if, as Lisa says, his brain doesn’t clear itself, as if it hasn’t reset fully and needs to come back for another go to right itself. So while it’s wonderful that his attacks aren’t as vicious as some recent ones, the payoff is that he doesn’t get as long as break as he was getting between episodes.

 

On Monday he didn’t seem himself as he went off to school. On the drive over I asked him a few times if he was okay and he answered each time that he was fine…

 

“Yes, I’m fine Dad,” he’d answer in his annoyed voice, wondering if I’d ever stop asking, no doubt.

 

At school, Denise collected him from the car and he went in chatting to her, forgetting to say goodbye to me until reminded by Denise. At about 10am Lisa took over and I went home. Lisa was worried about him too and suggested that we take him out before break-time but then we don’t want our fear of epilepsy take control of him anymore and so Fred stayed the full two hours at school.

 

When he came home at 11am, he looked a bit dopey and Lisa said that Denise thought he was a bit off in his work. A bit slower than usual in his thoughts and play. Of course, this worried us and we put it down to not having had the full reset at the weekend. Curious stuff this epilepsy.

 

Fred did manage a screaming match with his sister though. On Monday afternoon I heard screaming and swearing coming from downstairs. I was not getting involved if I could at all help it. Ruby was screaming at Freddie to leave her alone and Fred was goading her in return. If he knows Ruby isn’t in the mood Fred will go on the attack, try to get a reaction and get Ruby in trouble in the process. If Ruby is in the right mood he’ll succeed in getting the reaction but he’s a far braver man than me. When my darling daughter isn’t in the mood I steer well clear, only offering her food and drink when it’s safe to do so. Eventually Lisa intervened with the help of a UN peace force and I kept myself upstairs.

 

All was quiet in time for Elaine’s visit later in the afternoon. Fred wasn’t expecting her and much and all as he loves her he was none to happy to see her coming in the door. After a couple of minutes, Elaine came out to say Fred wasn’t feeling too well. Freddie was following behind saying he had the confusion and couldn’t do the work with Elaine. Lisa suggested that they take it easy on the couch and just do some reading. To this Fred agreed and the two got some work done, in between tickles and joking.

 

When I got home Lisa told me about the confusion episode and how she had her doubts…

 

In the front room I asked Fred how he was…

 

“Oh, fine,” the usual answer.

 

“Did you have the confusion?” I asked.

 

“Just a little bit,” he scrunched up his face and showed a gap between his thumb and forefinger, a tiny gap, “maybe this much.”

 

“Did you really?” I tried again.

 

The gap became even smaller.

 

Lisa and I agreed that the little fecker had feigned a confusion episode in order to try dodge homework, even though he probably wasn’t up to it anyway.

 

You couldn’t be up to him.

 

On Tuesday we set off for Dublin. All four of us travelling for the first time in a while. The journey was a peaceful one, Ruby slept for a while as did the mother and Freddie in the back.

 

In Inchicore Cathy was left on her own to look after us. We quickly settled in.  Freddie, though he missed Conor, found his usual spot on the couch and cuddled up to watch TV. As a special treat we got a Chinese takeaway. Fred ordered ‘vegetable noodles and white crisps’ his favourite. Soon all five of us were sitting around the dinner table, sharing our dishes and drinking our wine. Fred made short work of his chow mein and was munching down his prawn crackers to beat the band; it really was a feast for the little man. He shared some of Ruby’s prawn balls and was soon stuffed. He waddled back to his place on the couch where we  joined him, all of us with that bloated feeling you get from a good Chinese meal. At about 11pm, later than usual for the man, the two of us went off to bed, Cathy tucking Fred in with a big kiss goodnight.

 

In the morning, we set off forTemple Street and another session with Cathy Madigan. On the way over Fred was looking forward to his lunch in the basement restaurant. At the moment he is on a diet, trying to cut down on his carb intake, so a trip to Dublin gives him a small chance for a break. At the restaurant he was planning on the lunch he was going to have, the soup and sandwich which he’d had last time, with maybe a small portion of chips.

 

Fred gets to be a bit tunnel vision about things; he can obsess about a thought for days on end. It is a side effect of the condition but I think it’s his way too. Maybe I thought, that was why he was off for the last couple of days, his thoughts where being taken up by the Dublin trip. Who knows?

 

We dropped Lisa and Ruby on the way over. They had money to spend and were going to hit Jervis Street while we were at the hospital. It was nice for Freddie and me to do something on our own away from home, good for us even. We parked up the car in the impossibly tight car park run by the two Polish guys and walked over to the hospital. Up we went in the lift, Fred chatting away about the restaurant and what we were going to have for lunch.

 

After he was in with Cathy for less than an hour, she came out to me in the waiting room. Freddie wasn’t performing too well, he seemed very slow to Cathy, as if his brain just wasn’t functioning fully. It fitted in with his last few days at school which I told Cathy about. She thought there maybe something in his brain not fully resetting itself after a small seizure episode. Also I told her about the tunnel vision Freddie has about things, how Dublin had been on his mind all week and all morning he was talking of the lunch he wanted. Cathy laughed at this, the one thing Fred had done for her was sketch his lunch.

 

Single-minded is our man at times.

 

We agreed to give him an hour of a break and that she’d give it another go in the afternoon.

 

Freddie and I headed down in the lift and took our place in the queue. From the sandwich selection he found the plain ham sandwich he wanted and put in on the tray. Then we got the bowl of soup, leek and potato, and went to pay. Thankfully there weren’t any chips on the menu that way. Fred was looking at the dish of new potatoes…

 

“Can I have some potatoes?” he asked.

 

“Too late,” I answered,  “I’ve already paid.” Thankful that we’d avoided a row over extra carbs.

 

Then the lady behind the counter filled up a big bowl of new potatoes and put it on our tray.

 

“For the little fellow,” she said in a warm Dublin accent.

 

I asked how much extra was owed.

 

“Ah its all right,” she continued, “they’re for the little fellow.”

 

The two of us went off and had our lunch. I ended up eating more spuds than I’d planned, they were delicious and Fred was working his way through the bowl. Afterwards the two of us went up and out on the street for a walk. A few months ago I wouldn’t have been brave enough to do this, but slowly I’m getting my courage back. Outside it was a busy street but the two of us walked around hand in hand, looking atDublingo by.

 

Back inside Cathy wasn’t getting but more out of Fred but at least she got to see him on a bad day, its not always good. She took it on board but now she needs another meeting, this one was supposed to be the last, if that what it takes then that’s what it takes. Plus it gives us another trip toDublin.

 

On the way home Fred fell asleep in the car, we weren’t even out of Dublin and he was sawing logs. He stayed asleep till we got to Adare, a good three hours. Obviously he needed it, maybe that was why he was underperforming, tiredness.

Who knows?

 

He has been much more alert for the rest of the week, doing well at school and impressing Elaine.

 

Epilepsy is a curious condition.

 

On Friday Fred came home with a Father’s day card that he’d made at school. A beautiful card with lovely words and he couldn’t wait to give it to me. He was really proud of it but I was the proud one, proud of what my man can achieve despite what life throws at him.

 

This morning Fred put a cheese grater on his him, pretending to be a Transformer. When Lisa went to give him his shower his arm had swelled up and they couldn’t get the grater off. Eventually they slid it off his arm but he got some bad scratches.

 

Now he has a big plaster on the cuts.

 

Only normal for a boy to have cuts and bruises.

 

Thankfully this time Fred got them for normal reasons.

 

Long may that be.

 

 

 

 

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9Jun/130

The Good and The Not So Good

We’ve had a great week. The weather has been wonderful, sunshine, cool breezes, trips to the beach and as Ruby is on her holidays, no long drives each morning.  Freddie is still at school but he had both Monday and Tuesday off this week, the idea of him having days off school to enjoy as he wishes is a new one for us all. As he hasn’t had school for the last four years or at least very little, the concept of holidays is a new one for him. He knows  of weekdays and weekends, mainly due to Ruby being out in the normal world and he calls weekends ‘family days’ as these are the days we’re all together. Now, thankfully, he has the pleasure of enjoying weekends and holidays again as they are the days when he doesn’t have school. Not that he dislikes school, he loves it, but Fred is like any male, happiest in the security of his own environment.  This Friday as we got out bed he said to me...

“Today is Friday?”

“Yes” I answered, knowing where he was heading...

“And tomorrow is Saturday? A family day and there’s no school?”

I nodded.

“Oh, ok,” he walked ahead me, as if the reassurance was enough just to get him through the day.

For us, it is great how well he’s doing in school. Fred’s speech is improving and his home tutor Elaine is delighted with his progress. How they get time for work is another thing...As I passed the front room on Friday evening I heard Fred ask if there was more reading to do. “Yes,” Elaine answered, “just one more and then we’ll have the tickling.”  I also noticed that Fred has done away with the work table and has Elaine on the couch, cuddled up under a blanket.

Tough times indeed.

At school we drop him off every morning and Denise comes out to collect him. This week Fred has me on drop-off duty and Lisa picks him up at 11.00, enough though this has been stretching to 11.15 or even 11.30. Gradually he’s slipping into a normal school life. On Thursday he came home with a postcard that he’d been sent from his new friend Daniel, who’s on holidays in Turkey.  A normal enough event but a lovely thought and it seems he’s making a real impression.  As Wednesday was the first day back after the long weekend, Fred eventually had an opportunity to show off his war wounds to Denise. He got out of the car with his hand over the cuts and waited for Denise to ask what he was hiding. Then he dropped the arm and all was revealed, maximum impact on the unsuspecting teacher. The swelling and grazing had cleared considerably but there was still enough to get Denise’s sympathy. She took his hand and the two walked off, with Fred filling in the details.

We did trips to the beach and family drives as well. The good weather is dragging us out and the process of normalization has really given us courage. On Tuesday all four of us went to the beach, Fenit where there is a good place for collecting shells, and though we didn’t stay long as it was very warm, it was still lovely that we got a chance to do so. Fred, as normal, didn’t want to leave but Lisa’s and my nerves still aren’t up to long stays in the sunshine. As Fred is on a bit of a self-imposed diet we didn’t get ice creams afterwards, probably no harm for me either. They weren’t asked for, it’s amazing how Fred can just give up things without much of a grumble. If he wants something he won’t give up on it though and many the fight Fred and his mother have had over his figaries...usually he wins too...

“Verling men, they just don’t give up,” is usually what I hear from Lisa as she gives in, “you’re as bad as your father, there’s a pair of ye in it, and the two of you have me driven demented.”  This would be followed by an expletive or two, if there hadn’t already been a few thrown in for effect.

On Friday morning I had to go meet someone in Annascaul and took the opportunity to pick up Ruby’s friends; Fred’s favourite two women, Hannah and Tara. The excitement when I walked in the door with the two of them. Fred abandoned Elaine on the couch and ran to say hello. Poor Elaine was left wondering what she had done wrong. Freddie gave the two a hug but he returned to the couch when they reassured him they were sleeping over.

Later I took the girls to Fenit for a swim and after we all had dinner together at our new kitchen table, thank you Siobhan, the trio went late night shopping in Tralee. With the long, bright evening they didn’t get to spend much time inside and so Fred didn’t get to see that much of them. Now he’s more independent anyway, I think he was just happy to know they were there and he took all his toys out the front to do battles.

Saturday was a washout for him. He woke as normal but by the time we got downstairs it was obvious not all was well. His eyes were flickering and the involuntary twitches were back. The one good side of this is that at least we know something is on its way; it can’t sneak up on us like last week. Fred cuddled his mother, ate his breakfast and tried snoozing. Nothing happened but we knew it was a coming. After I came back from Ballyheigue, another beach trip drop for the ladies, he ran out to meet me.

“Daddy I got the confusion, the puking and feeling dizzy,” he said excitedly.

Even though nothing had happened he was going through the motions and dealing with it as he could. It must be very strange for a ten year old to know that something bad is on its way, that in time he’s going to be put through the ringer. I know he doesn’t witness it but the fear must be there and he deals with it so well. At one stage he said “I think the fainting is coming.” He didn’t actually have a seizure at that stage but his brain must have been on the verge of one. Our innocent little boy was facing what we hate to see and we were powerless to prevent it. It is something that he has to go through and we can only be there to help him though it. When I say we I mean Lisa, she’s the one who hauls him though these days, minding him, nursing him, all I do is provide backup support, cups of tea and cooking meals.

By three o’clock nothing had happened. I busied myself upstairs but when I came down at 3.40pm he was unconscious on the couch. Eventually a seizure had broken though, but Lisa was there minding him, making him safe. About an hour later he had another, a big loud one that always shakes me to the tips of my toes, leaving me cold and shocked. As usual he pulled though and cuddled himself even tighter into his mother.

For the rest of the evening he had a load of small ones with just the one more big one about 6.30pm. Of course we didn’t know that it was the last one, you never know with epilepsy. About 9.30pm Fred woke and scooted across the couch to cuddle up to me, the mother forgotten after all she had done. Soon afterwards the two went off to bed. The one thing he needs after a day of seizing is sleep. When I went up at midnight he was fast asleep, wrapped around his devoted mother, not leaving her move an inch.

This morning he woke as normal but still had a lot of jerking going on. He feels fine, or so he says, but it will probably be a day of rest for him again.

Lisa and I are expecting a goodbye seizure to hit but so far so good.

Fred is aware that he has to take it easy so he can recover and go back to school in the morning.

Back to school for basketball with the boyz, that and a trip to Inchicore, it is going to be a great week for the little man.

He deserves it too.

 

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2Jun/130

If I Had A Hammer

Yesterday we went on a family drive. Nothing spectacular but it was the furthest we’ve gone on a pleasure trip in years. We drove up to Listowel. Not for any reason except that it was a destination, wasn’t too far away and Lisa claimed she’d never been there. Off we set, coffees for the adults and Ruby, Freddie with a bottle of sparkling water. He’s on a self-imposed diet but I don’t think he realised how tough his mother can be in supporting him. On the way Freddie fell asleep, the second time this week that he’s had an afternoon snooze, maybe it  is the meds but Lisa voiced something that I’d been thinking. Sometimes he needs a big cluster of seizures to clear the head, reset the brain for a couple of weeks. Even though he had a cluster last Sunday, it was mild in terms of some of what he’s gone through and it seemed that he wasn’t quite right since, as if something was still clouding the brain. As I’ve said before epilepsy is a curious condition and sometimes acts as if it has a mind of its own, as if it knows what is going on.

Fred perked up a bit after the snooze and sat looking out as we drove back.  His speech has improved enormously, something both Lisa and I have remarked upon this week. For the first time in ages he’s  stringing sentences together, taking his time to find the right word and making sense with his questions. This is no doubt down to the longer gaps between clusters, the constant seizure activity would no doubt hinder his progress. It’s also down to the change in meds which have seemed to lift a fog from his brain. The biggest factor we feel though is the socialization process he’s been going through since starting Temple Street. Now Fred is back at school he has people his own age to talk to and interact with daily. Plus he has Elaine coming round for home schooling, or home tickling as I call it, and all this adds up to a lot of social interaction for the man. Now he has to talk and he’s the better for it. These days he’ll look out the window and ask questions, a big difference from the doped man we had not so long ago.

When we got home Lisa and Ruby went off shopping, a familiar Saturday afternoon trip for the ladies. Invariably Lisa comes home with nothing except a look on her face when Ruby breezes in with a bag or two on her arm. It makes me laugh. When the two went off Freddie asked if he could go outside and play with his hammer. For some reason or other he thought of a small handled hammer he’d got years ago and wanted to play with it. After a bit of searching I found it on Friday and he’s been playing with it ever since.

A couple of months back I would have been very nervous of him going outside, especially out of my view. Under the new regime he goes out a lot, just to a little patch of land about 30 seconds from our front door where he digs for dinosaur bones. After a few minutes I checked  on him, he was doing fine, banging rocks and anything else that could be hammered.  He came back in to use the toilet and made a big deal of telling me he’d done so; Fred had got in trouble a few weeks back for peeing against a neighbour’s wall instead of coming in the house.

I checked him again and he told me he was fine and I asked him to come in soon as it might rain. I still can’t stop myself worrying whenever he’s out of sight, old habits and worries die hard...

“Ok Dad, I’ll be in in a minute” he said to keep me happy.

Back inside I was on my laptop when I heard the dreaded howling that can only mean one thing, that roar that comes from deep inside Freddie, a real cry of fear. Dropping everything I ran outside. The man was lying prone in the middle of the paved road between our house and the patch of land. He must have been overcome as he tried to get back to the house. Such a brave man, what he has to live with; he just can’t escape it but he doesn’t let it take over him. I ran over, his body was in full seizure, shaking and howling. All I could do was put my hand under his head, try to prevent further injury. His forehead was all cut from hitting the ground, his glasses were lying beside him, smashed, under his hairline was another graze, his cheek was bruised and some of his toes were bleeding, probably from being scrapped on the ground by the jerking.

After a minute or so the seizure subsided and I held him closely to me, trying to make him comfortable. My worry now was getting him back to the house; Freddie is unconscious after a seizure and can be very difficult to lift. As I didn’t want to leave him alone for one second, I decided to give it one try before looking for help from the neighbours. Putting my arms under his shoulders and across his chest I said “come on Fred, let’s try get home.” Remarkably his eyes opened slightly and looking at me Fred managed to rise as I did. With my arms wrapped around him to two of us inched our way back to the house and onto the couch. There I made him comfortable, cushion under his head and I checked his wounds. Bad grazing to the head and bruising under the right eye, probably from his glasses frame being squashed in on impact. His toes and feet were badly cut, the poor little man hadn’t any shoes on when he went out. As always he begins to shiver badly after a seizure, I suppose from shock but this stopped after I wrapped him in a blanket. A quick call to Lisa, I was worried more about his cuts than anything else, and in a couple of minutes the two were home.

Lisa took a sensible look at him, cleaned him up and decided that they were only skin deep. As it happens we had a new pair of glasses on order so I shot off to get them before the optician closed for the long weekend. When I got back the little man was all patched up, plasters on his toes, on his forehead, Savlon cream all over and the bruised cheek was covered with arnica. Lisa is unbeatable when it comes to looking after the man. Freddie was cuddled up to her, comfortable under his blanket, Lisa had gotten his medicines in plus a dose of painkillers.

For the next couple of hours we watched him, waited for the next seizure in the cluster to hit but nothing happened. Ruby had her dinner and we watched TV. Nobody said much, Lisa drank a lot of tea and Freddie dozed. Then about 8.30pm he woke slowly and tried to focus on the world around him. Freddie lifted his head off the cushion and looked like he was trying to recollect how he’d got there. He slowly lifted himself up and looked at me. We put on his new glasses and he felt the plasters on his head

“What happened me?” he asked in his gentle worried voice.

Lisa explained what happened .

“Oh, ok,” was all he could muster.

Fred was hungry though and when he got himself organised he demolished a plate of his mother’s stew. The DVD player was on the cushion in front of him and the bowl of stew was on his lap. He drank lots of water and even had a small bit more stew. Considering what had happened to him about three hours earlier this was a remarkable turnaround.

Before his meal Fred looked at me..

“Dad, I left my hammer outside,” he said sounding very worried.

Luckily I’d found it on the way back from the opticians so he had one thing less to worry about.

About 10.30pm he turned off the DVD player and said he wanted to go to bed. The two men left the women behind and headed off upstairs. In true dramatic Freddie style,  every step was matched with a groan or a wince. The cuts to his toes hurt with a pain beyond imagining apparently.

In our room Freddie stood in front of the mirror and examined his wounds. He studied them carefully, running his fingers over the plaster and the bruising. As I watched him I wondered what was going through his head, was it wonder at the cuts or was he trying to understand how he got them? Hopefully it’s the former as none of us can understand why the epilepsy won’t leave him alone.

Sitting in bed I read him some stories. Fred was cuddled up next to me, sitting up watching the pages as I read, finishing the sentences before me as he knows the books so well.

Just as I got to the last page of “The Smartest Giant in Town” I looked at him. The eyes were closed, glasses on, arms folded across his chest.

He’d fallen asleep.

The sweet innocent man.

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