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

25May/140

The Return of The Man

During the most recent seizure-free gap which Fred has gone through, he has suffered very little confusion. This is the feeling that Fred gets when a seizure is on the way and it’s not uncommon among epilepsy patients. I’ve asked him to describe it and he just says “it’s the confusion”.  The only comparison I can imagine is that fuzziness of a hangover or when you have a bad cold. We notice that Fred’s eyes dilate and he gets that far away look, Lisa is better at this than me.  Luckily a swipe of the magnet and the VNS clears the confusion within minutes. Before the VNS Fred would have to lie down, fall asleep and wait for a seizure. For this reason Denise is given the magnet at the school gate every morning and she hands it back when he’s going home. Fred didn’t want the magnet at school initially but now he sees the benefit.

With all this confidence from the VNS Lisa has stopped going down for school breaks and lunchtimes. It doesn’t mean she’s not worried sick or doesn’t jump at the slightest beep of her phone. We both knew however on Monday, when the school principal rang at just gone 1pm, that something had happened. In seconds we were in the car and shooting down the road, Lisa cursing a long vehicle that was holding up traffic. At the school they had the gates opened and one of the teachers was out stopping traffic. As Lisa parked I ran in the door to find Fred in the lobby, lying out on his chair. The seizure had hit just after lunch and luckily Fred was back in his seat. Without any panic they had slid the chair out to the privacy of the lobby and were waiting for us to arrive.

Fred half opened his eyes when I spoke. Though groggy he wasn’t totally wrecked, Denise had given him a swipe of the magnet which must have helped. In less than a minute we had him in the back of the car and on the road home. There Lisa took over completely and had him comfortable on the couch in his pyjamas, while I tidied up around them.

In all the day went smoothly, so smoothly in fact that we were constantly awaiting a backlash. Fred had just the one more seizure, woke for a sandwich but slept most of the day. When I came home with Ruby he was awake and he managed a bit of dinner. What Lisa and I feared was that a big cluster was bound to break through, it usually does but Fred was having none of it. He watched a movie, had a row with his mother and came up to sit on my lap for a while. Lisa took him up to bed at 9.20pm but he didn’t want his mother and so I was called. We read a book and Fred dozed. I must have fallen asleep because Fred woke me at about 10.15pm as I was snoring. Soon he was fast asleep and I was wide awake.

As he fell asleep I watched him constantly, waiting for the epilepsy to come back. Fred did a lot of talking in his sleep, a lot of dreaming and a lot of smiling but eventually fell into a deep slumber. As for me, I read a lot of my book and it was gone 2am before I dared turn off the lights.

In the circumstances it was a great day and we can only hope it’s part of a new pattern.

Tuesday was spent recovering and Wednesday he was back to school.

“I can’t go back there Dad,” said Fred Tuesday evening.

“Why not?” I asked.

“Because I’m sick of their rules,” he answered, hands out in dismay, the big brown eyes looking up at me.

I didn’t have an answer to that one as it rang a lot of bells for me. On Wednesday morning the two of us got down to the school a little early and everyone was delighted to see him, as always, and Fred slid in as if nothing had happened. Jaden hadn’t yet arrived but the other kids just carried on as a normal, no fuss was made and the magnet was handed over to Denise.

Just like a normal school day.

When I collected Fred at lunchtime he was in great form, laughing with Denise as walked to the gate.

“You won’t believe it,” he said to me, with a big smile on his face.

“What?” I asked in disbelief.

Fred threw his hands up in the air.

“Jaden and me are best friends again!” he exclaimed, “I asked him and he said yes.”

The picture of Freddie asking Jaden that big question brought a tear to my eye; it must have meant everything to him. It didn’t matter though as all went well and the J man was back.

Friday morning Fred and I went over to collect Jaden. Lisa had lost his Mum’s phone number so we had to call unannounced. Fred was straight in the door but Jaden was still in his pyjamas. They had a day off school as it was being used as a voting centre and Jaden was making the most of his lie in time.

“Come back later when I’m ready,” I heard Jaden say, “in ten minutes.”

So Fred and I went on a drive around town, getting a coffee and lemonade as a special treat. Jaden came for the day, had great fun and the two seem to be back to normal. At one stage they had the girl from across the road in for biscuits, milk and a movie so it was a very sociable day.

Considering the week got off to a bad start it ended very well. Jaden is back and Fred enjoyed having him over. The cluster was controlled by the VNS and possibly the intermittent confusion is beginning to abate.

We’re planning a trip to see the new Godzilla movie this afternoon.

Fred will have to see if it matches the originals.

I can’t wait.

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18May/140

This Charming Man

On Thursday I set off to collect Fred around 2pm. As I got to the school Denise was standing at the side of the road, waving me down. Though not having Fred with her was unusual I wasn’t concerned. So has our lives changed that a few months back the sight of Denise on her own would have me assuming the worst, now I saw nothing unusual in it.

She came out on the road to meet me...

“All is ok,” she kept saying over and over again, reassuring me though I wasn’t yet worried, “he’s down in the park with Ms O’Connor and the other kids.”

Denise had Fred’s bag with her, she’d walked back to collect it and to find me when 2pm came. She jumped in the back and we set off to the little park by Blennerville Windmill.

“He’s had a great day,” Denise said to me in the rear view mirror, like a taxi ride. “He’s been playing football all morning and then went on the nature walk down to the park. He’s in great form all together.”

“He’s had a great week,” I answered proudly, catching Denise’s eye in the mirror, to which she nodded.

This was Activity Week at school. Every morning I’ve dropped Freddie at the Windmill car park where the whole school had gathered. From there they’d walk in convoy to school, no more than a ten minute journey but all part of getting the kids out and about. The excitement was massive each morning and once I dropped Fred with Denise I’d head off. On Tuesday I went to the bottle bank afterwards and passed the hundred or so kids walking along the footpath as I made my way home. Fred in the middle of them, holding hands with Denise, Jaden on her other side. All three full of chat and laughter, it was great to see.

Fred and Jaden are on a bit of a break. In the last couple of weeks they had a few rows at school and though still friends, they seem to be not as close as they were last month. One row seemed to be that Fred wouldn’t sit down in the classroom. Jaden told Fred to sit down as something might happen to him, Jaden having gotten the worrying bug from being around our house. Newly confident Fred wasn’t having it and brushed Jaden’s arm away when he went to pull him back into his seat. A few pushes were exchanged and the two fell out as a result. Jaden told Fred he’d have to find a new friend, poor Fred was very upset at that one.

Another row was started by Fred breaking Denise’s rubber. Jaden took exception at this and punched Fred in the arm, according to Fred who sang like a canary when asked. Some pinches were exchanged and the two went their separate ways for a while. Fred hasn’t asked to have Jaden over this weekend and apparently cold war conditions are still operating in the school yard. All part of school life and no doubt to the two will be reconciled in the coming week. If anything Jaden just wants to care for Fred but Fred isn’t having it anymore so the two will have to find a happy medium.

With all the activities this week the two haven’t spent as much time together as usual so they haven’t had the time to make up their differences. On Monday when I collected Fred it turned out he’d spent the morning orienteering at the local GAA pitch and had been on a Garda Search and Rescue mock mission. The photo of Fred sitting in the patrol car took pride of place on the school website. When Fred came home he told me about the sniffer dogs and all the running. He’d been in Olivia’s orienteering team and later she was full of how out of breath he was but still wouldn’t stop running. Fred even did a sample run up and down the front room of how out of breath he had been but also showing how much he loved it.  Luckily Lisa didn’t know he’d been doing all that activity or the Rescue team may have had to make a call to Ballyard.

Tuesday was a quiet day, just the walk to school and football in the yard. Lisa collected Fred from school but just as he came out the front door he vomited all over the entrance. Denise said afterwards that it was either in the porch or out in the yard and so she rushed him out the door. Fred came home a very sorry looking figure and we feared the worst. Though he stayed in for the afternoon the seizure activity never materialised and Fred had a big dinner...

“It was just apple puke,” Fred told me later, confirmed the next day by Denise as she told me what Fred had left on the doorstep.

The man was back at school Wednesday morning as if nothing had happened and all the school were delighted to see him at the windmill in time for the walk. A day of activities again and he was a tired boy when he came home at 2pm. No escaping Ms O’Se though and she was around for homework at three o’clock. There was time before that for Fred to get his first nettle sting of the season while playing outside. This he proudly showed to Ms O’Se, half in an attempt to get her to go easy with the homework than anything else. The two told me how they’d had been making Rice Krispie cakes at school that morning, enough for the rest of the class. Though going in Blennerville this week.

Funny how the week went. On Monday Fred was adamant that he was finished with school, vowing that he would never return. This in part was due to the fighting with Jaden and also the natural rebelling of any eleven year old. In the end though it was probably his best so far, loads of fun and giant steps in his getting back to normal.

One big, noticeable improvement has been in his walk. No more the slouching, head down, ponderous gait of the last couple of years. Now he walks with confidence, head up and proper strides, better than his elegant mother even. Denise was telling me on Thursday that Fred wouldn’t have her walk with him in the playground. He told her to go away and strode off; stopping to talk with others he met on his way. Denise of course wasn’t too far behind but Fred kept looking over his shoulder to check that she was far enough away. In typical Fred style he was too busy looking over his shoulder to mind where he was going and narrowly missed the wall a few times.

Denise was laughing at this as she sat in the back of the car on our trip to the park. When we got there Fred was in the middle of a group of friends, Jaden off with another group. As Denise got out of the car Fred walked up to her, hands behind his back. Just as he stopped in front of her he produced the bunch of daisies he’d picked while she was getting his bag...

“These are for you,” Fred said holding them up, “I picked them.”

Denise was overcome.

With that Fred got into the car with a big thank you and goodbyes all round.

What a way to end a great week.

 

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11May/140

Nights Away and a Broken Laptop

We are a very tired household this morning.  Lisa was away in Dingle at a 50th birthday party last night, probably her first voluntary, non-family outing, away from Fred in years. Ruby and I were joking that Lisa wouldn’t or couldn’t stay the night away and would be home by 2am. She confounded us though and didn’t return until gone 8.30am this morning, a record in current times. Yesterday too I was away at a wedding, though I was home by 6.30pm, so Lisa could head to her party. So all in all we’re a very tired family, except for Fred who is up for anything, having gotten dressed earlier.

For me I stayed away on Friday night, the second time in recent weeks. I brought Fred to school Friday morning and said my goodbyes at the gate. As part of trying to keep Fred on a normal path we didn’t mention that I was going away for an overnighter. Fred tends to obsess about upcoming events, to the detriment of what is going on around him. Ms O’Connor at school had mentioned it to Lisa at a recent catch up, that once Fred knows something is on the horizon that will be all he talks about for the rest of the week. He won’t be able to concentrate on his work, just talk about going to Dublin or that Aunty Clare is coming on a visit.

It had slipped out earlier in the week and Fred asked if he could come. If I hadn’t been combining a work trip with the wedding I would have taken the man with me. The two men off on a road trip would have been great and is now feasible so maybe the next time...we’ll see.

When I explained this to Fred he seemed to understand, another positive sign. Instead of being disappointed in not going he got involved in my preparations for the wedding. My suit, which I hadn’t worn in about five years I’m happy to say no longer fits me as it is too big. I tried it on last week but instead of it being to too tight, it was hanging off me. Lisa had a few choice words about how ridiculous I looked, saying I looked like a member of a certain minority community to which Ruby and I got great fun. So after failing to sell her a power washer or a chainsaw we decided to take a visit to the suit shops around town. After looking at a few new suits we stopped in with a rental place, Fred with us as it was just after school.

Fred was delighted to be involved, saying to the man...”ah excuse me we need a new suit for my Dad.” Without much fuss one was found and booked for Thursday collection. Fred did ask for a suit for himself but didn’t go on obsessively about it which was great. He knew he wasn’t going, so helping out was his next objective.

On Thursday morning Fred reminded me that I had to collect my suit, and after Ms O’Se in the afternoon the two of us set off. It didn’t even occur to me to be fearful of anything happening, we just got in the car and went about our business. Firstly we collected the suit, Fred telling the man again why we were there. After the suit collection the two of us went to the barbers, to get my beard trimmed. The barber had a new assistant and she did the trimming while Fred chatted to the barber about the various pieces of equipment in the shop. The two had a great chat, using the different chairs and talking about scissors. Seeing Fred carrying on a conversation with another person is great; true the barber had to come around to Fred’s way of thinking but they had fun once the conversation found a common subject. As we left Fred turned and said,

“Thank you for cutting my Daddy’s beard,” which went down well.

There was still time for the library as I had to collect a book for Ruby. In the kids section Fred found a Ben10 book which he hadn’t read and we took that out as well. He’s been carrying it around with him ever since, taking it to school and to bed. The librarian recognised Freddie as she used to be on the Mobile Library which calls to his school. Just shows that once you meet our Fred you never forget him.

After the library we did some grocery shopping, Fred carrying the basket and me dropping in the messages. Again Fred did as I asked, no obsessing about having to have certain products which may have led to fights in the past. We did a big shop and Fred did get the cream crackers he loves, “the square white crackers” as he calls them, he wanted them for school lunch.

We were away for nearly two hours and the time flew by. It was lovely to be just out doing things, having fun and leading a bit of a normal life. Back home I asked Lisa why she hadn’t rung, I knew she’d be worried but she was being strong, trying to assume all was ok. It was too but it’s not easy when you are the one at home, waiting for the phone to ring as had happened so much before.

We had a peaceful evening; Ruby was away at a match followed by a fashion show and so wasn’t coming home. Unfortunately Wednesday night before hadn’t been the same. Fred, after watching a YouTube video of Godzilla battles, got up off the chair with the laptop in his hand. I told him to put it on the shelf and to get himself settled for the evening. This he did but as he walked away from the shelf I could see the cable from the charger was wrapped around his leg. Instead of untangling himself Fred pulled at the cable with his leg. In the blink of an eye the laptop flew off the shelf and with a loud smack, landed on the wooden floor. The sound was bad enough but the roar of “for fucks sake” from me was twice as bad. Fred looked at me and turned to run, the cable still wrapped around his leg. He pulled again, wrenching it from the computer with a snap...

“Where are you going?” Lisa asked.

“To the toilet,” Fred said over his shoulder.

There he stayed while I checked the laptop, which I couldn’t fix and is now in the repair shop. Eventually, when he reckoned the coast was clear, Fred emerged. In he walked, head down, not looking at me. For the rest of the evening he cuddled to his Mum, turning to me every now and again, looking at me with his big brown eyes full of sorrow...

“Sorry I broke your computer Dad,” he’s say from time to time, “it was an accident.”

“Hmm” was all he got from me, but I wasn’t mad at him for long.

How could I be?

Last night the two of us cuddled for the evening, the man had missed me while I was away, as I did him, and he wasn’t letting me out of his sight.

The computer hasn’t been mentioned. I doubt if he has forgotten but I know he’s hoping I have.

We’ll see how long it will go before one of us brings it up.

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4May/140

Half Four In The Morning

Fred drew a map yesterday. He’d been talking about if for a while and after dinner he went to find his ‘shopping list’. This is a notebook, the type you’d see a waiter with, single pages which tear out or flip over for more writing. We bought it on one of our trips to the stationery shop, as Fred wanted it to write his shopping list, thence the name.

Once we’d found it, his mother had cunningly hidden it with all his other writing gear, he set upon the cartography task. Not long later the new map was unveiled; two houses connected by a winding but not so long road. Fred brought it to my chair for first showing...

“Look Dad, I drew a map!” the little man exclaimed.

“Show me.”

Two named houses linked by a short road. When Fred was doing the drawing he asked Lisa how to spell TJ and now I understood his thinking. Beneath one house was written Jaden’s and under the other was TJ. Though the map was simple it solved a complex problem, how to reconcile Jaden with the idea of TJ becoming Freddie’s friend.

“This is Jaden’s house and that is the road and there is TJ’s house. He has a short name,” Fred explained, scrunching up his face in surprise at the shortness of TJ.

“Wow,” I wondered.

“First we’ll collect Jaden, then we’ll drive down the road and collect TJ,” Fred continued explaining the thinking behind the drawing.

It made perfect sense. Jaden wouldn’t have his nose out of joint as he’d be the first to be collected. The addition of TJ could be dealt with on the drive over and the two could get to know each other on the trip to Ballyard. Once settled in Ballyard the three would become firm friends Fred reckoned, all problems solved and all would live in perfect harmony.

John Kerry on his next Middle East peace mission would do well to take Fred.

The problem on our side was that none of us knew anything about TJ, he’d only been mentioned in dispatches from school and had never been seen. Where he lived, who his parents were or if he’d even want to come to Ballyard, nobody knew. The only thing we had to go on was Fred’s map. Even Fred was surprised at how his name was spelt and he wasn’t convinced by the shortness of it. In fact TJ became ‘TJ with the short name” for the rest of the evening.

All this was after one of Fred’s bad days on Thursday. As it was day nineteen of the current cycle we had inklings that something was on the cards. He was doing well at school, even this week Fred went up to 2pm, almost a full day. Next week we will push it to the full day, a 2.30pm finish, as the half hour jump wasn’t even noticed when introduced last Monday. The only sign as far as I could see was Fred was being a bit  lethargic, dragging his feet instead of the confident walk of recent weeks and his speech was off. Lisa and I were swiping to beat the band and encouraging Fred to pick up his walk and speech.

So when I got a punch in the face at 4.30am on Thursday it wasn’t too surprising, well the belt was but not that it came from Fred seizing. Epilepsy had caught up with our boy again and no doubt we had a day of it ahead of us. Lisa was called, Fred made comfortable and we settled in to looking after him for whatever was going to happen.

It was a strange day. Fred didn’t seize again until about 7.30am and even woke to talk with me for a few minutes. I took Ruby to Dingle and by the time I came back the two were downstairs, lying out on the couch. Throughout the morning, he’d wake and about every two hours he’d seize. By early afternoon he’d had only four seizures with a couple of small ones thrown in. By the time Ruby came home at 5pm we presumed the worst was behind us.

At around 8pm though Fred had another big one, number five for the day but he woke up soon afterwards. In a few minutes he had his DVD player out and was watching a movie. He wasn’t talking much but he was fairly with it, considering what he’d been through. Maybe this was down to the VNS, and Lisa had been swiping him all day. Five seizures and not any use of the Stesolid was a good day in the circumstances.

At about 10pm Fred and I went to bed. We read a few stories and Fred asked if he could go to his pillow as I closed the cover on the last book. He rolled over with a “love you Dad,” but about 11pm another seizure hit, just as he was slipping into a deep sleep. I swiped him after it finished and rolled him onto his back, on his pillow. For the next while I swiped him regularly but another seizure hit about 11.45pm and I gave Lisa a shout.

We made him comfortable but about forty minutes later another one struck. We were worried and also feeling left down that we would have to intervene with the Stesolid. For some reason I recalled that maybe too much swiping was preventing him falling into a deep sleep, thus triggering a seizure. For the next while the VNS wasn’t swiped and Fred fell into a deep sleep. Lisa sat with him all night and about 3.00am she left herself sleep. The epilepsy didn’t strike again and Fred slept the night through.

Friday saw Fred up and downstairs. He didn’t have an appetite but was in good form. The day before had taken it out of him but he was fighting back. Fred slept a lot and was delighted to see Hannah walk in with Ruby after school. Dozing and having Hannah about, a nice end to a tough couple of days for Fred.

Yesterday morning Lisa and Ruby went to Dingle, taking Hannah home. Fred and I were alone in the house. As Fred hadn’t eaten since Wednesday morning and it was the two boys home alone, I made a big breakfast. But what is the point of a big Saturday morning breakfast without a newspaper? Fred was settled in front of the TV and I asked him if he wanted to come out to the shop. No he said he was ok on his own and I could go. Well, I reckoned he is eleven and the shop was only five minutes away. So for the first time in Fred’s life he was on his own, I was out getting the paper and his mother was in Dingle. When I got back he was still sitting down and hardly acknowledged me when I walked in.

“You ok?” I asked.

“Yes my Dad, I’m a big boy now, I’m ok on my own,” was the reply.

When I put the breakfast in front of him Fred gave a big sigh of contentment. He looked at the plate of omelette, beans and fried potato and licked his lips.

“Don’t tell Mummy,” he said, using our code for keeping big breakfasts from Mummy, though this was special circumstances.

The two of us had a great morning, taking it easy, drinking coffee, reading the paper and watching TV.

The girls came back just after two and Fred let his mother cuddle him on the road to full recovery.

“Mum?” he said after a while, “I have to tell you something, Daddy gave me a big breakfast.”

So much for secrets and honour among thieves.

Today we’ve had another lazy day.

The map hasn’t been used but Fred is planning on having Jaden over tomorrow.

How will we find TJ?

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