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

24Nov/130

Back to School

Sunday evening we had a surprise visitor. Rose, Fred’s teacher from school called around to deliver a ‘get well soon’ card from all his classmates. A sheet of A3 hard paper folded in two; apparently it had been designed by Jayden. On the cover were cut-outs of hand drawn Godzillas and dinosaurs, with a big ‘Get Well Soon Freddie’ at its centre. Jayden knows our Fred. Inside all the class had written little messages of goodwill. It really was the sweetest card and Freddie loved it. Usually he dismisses a card and looks for the real present but not this time, he was genuinely taken aback by it. When she had called, Fred had managed to slip on his new ‘Granddad Jimmy’ boots and now he proudly showed them to Rose. She was suitably impressed.

Those boots have gone everywhere Fred went all week. When I wake him in the morning, there are the boots beside the bed, cuddle him under a blanket on the couch and he’s wearing them, at breakfast in the morning they are under the table. If he could he would have worn them to school, Lisa and I had to draw the line at that one but he does love the boots. When we were preparing dinner during the week Fred kept walking around the kitchen, stopping to look at his reflection in the cooker or fridge door...

“What are you doing?” I asked, getting frustrated by nearly falling over him at every turn.

“Practising walking like Granddad Jimmy,” Fred answered as if it was the most obvious thing in the world.

On Monday he had a fight with his mother as he wanted to wear shorts going out in the car, so he wouldn’t have to worry about tucking longer legs into the boots. The mother won for once but I think only when sending the boots back was threatened.  Our Fred and his figaries, when he gets something in his head that’s it, and he certainly pushes the limits of his mother’s legendary patience.

With all the recent disruptions Fred’s sleep has been all over the place. By Monday it was only four days since he’d been under anaesthetic and during that time he’d been falling asleep most afternoons. We’d decided that he was well enough in himself to go back to school Tuesday, even if he wasn’t keen on himself...

“I can’t go back to that school, I’m too tired,” was the response to Lisa mentioning it.

I bumped into Denise in town and told her we’d be back the next morning. She said they’d be delighted and especially so Jayden. Lisa had said to Jayden’s Mum that Fred may be back Monday and all that morning Jayden had been looking for Fred. If someone came to the classroom Jayden would look expectantly and the longer the morning went, the more worried the poor boy got about his friend.  But all day Fred pulled the tired card, dozing when he could and yawning continuously. However when I went to bed that night he was awake and he was still awake at 12.45am...

“Go to sleep, Fred,” I ordered...

“I am asleep, look my eyes are closed, look,” he answered lying on his back, hands clasped on his chest looking the picture of innocence. He began to list the movies he’d watched all day, eyes still closed, how they’d made him laugh. I let him talk to try get it out of his system.

At 1.05am he rolled over on his side, a sure sign that sleep was on the way. He left out a long, deep breath as if surrendering, and said “night my Dad.”  In a way it felt as if that was the end of the surgery intervention, the next morning he would be back at school and normality could resume.

In the morning a sleepy boy came down for breakfast. We all ate and by 8.05am Lisa and Ruby were out the door. Fred and I took our time; Lisa had washed him from top to bottom the previous night, so all we had to do was get dressed. We set off at our usual time and arrived at school just as Jayden was getting out of his car.

The look of joy on Jayden’s face. A smile as wide as Cork Harbour was all I could see as he walked across the yard. Fred, conscious of being the centre of attention, had his head down but looked up to get the big welcome back from all the class. He had the big bandage on his neck to show off and for once he didn’t seem to mind the eyes of everyone on him. Denise settled him into his seat and I went back to my vigil in the car.

It was as if nothing had ever happened. What a boy. That evening he came home with a special, private drawing from Jayden, wishing him well.

Wednesday evening and the two of us are sitting on the couch. Fred goes off and asks his Mum for the Playdough and a tray...

“What are you going to do with that?” I asked.

“You’ll see,” was the mysterious answer.

After an age of chopping and rolling Fred produced his masterpiece. Up he climbed beside his mother, holding the tray away until he was settled...

“Ta dah!” he declared.

“What is it?”

“It’s a map of the world,” Fred said proudly.

He’d made shapes from the different colours and laid them out on the tray, like in an old fashioned atlas, showing the continents spread out in distinct shades.

“Wow!” Lisa and I both said, and it really was great.

“Where’s this? Lisa said, pointing to an island of blue.

“That’s where Jaws lives,” Fred explained and he continued with all the continents, linking them to his movie characters. The Lion King and Madagascar were in Africa, Jurassic Park safely on its own, Godzilla in what must be Japan and so on. Ingenious.

On Friday evening I had to deliver a parcel, it must have been nearly 8pm. I asked Fred if he wanted to come with me, something I wouldn’t have dared risk before.

“Sure,” he answered, jumping up and putting on the boots. It was cold out, a beautiful, clear starry night and Fred found his heavy winter coat too. In the car we drove over to the parcel depot, chatting and looking out at the night. When we finished I asked if he wanted to go through the centre of town, to see what was happening. Fred nodded, he was enjoying himself. We drove up a side street and just as we got to the top I slowed to let traffic past. Fred jumped with excitement...

“Look Dad,” he pointed to the street we were about to turn into, “Christmas lights!”

Sure enough it looked like they had switched on the lights. The previous night I’d driven Ruby and her friends across town and they weren’t on. They must have known Fred was out...

“Keep looking,” I said. As we were on a corner I didn’t know if the street was fully lit. Fred stared intently at the corner.

We turned into the street. It was aglow with beautiful lights.

“Wow! Look at that!” was all Fred could get out.

The first sight of Christmas lights is always spectacular. The traffic was heavy, we didn’t mind, driving slowly; looking at the different lights was just wonderful. Fred’s face was up against the window, pointing at the different shapes...”look at the snowflakes, look there’s Santa, more snowflakes.”

A couple of years ago we’d done the same journey, just before Christmas week. That time though we were on the way to hospital with Fred in a cluster, Lisa and I crying. That this time Fred and I were just out on a drive made it even more special for me.

Saturday morning I took Fred over to the doctor’s to get the stitches taken out. We waited in the surgery and when our time came Fred strode in, happy to be getting the bandages off. The doctor put him up on the examination couch and Fred pulled up his top.  Fred is proud of his war wounds. The bandage came off easily enough showing a row of stitches, covering a very neat cut of about four inches across his left breast. Fred looked at the scissors and the blade the doctor now had in his hand.

“What are you doing?” he wasn’t so sure now.

“The doctor is taking out your stitches,” I reassured him.

The doctor pulled up the first knot with the scissors so as to cut it with the blade.

“Oh my Jesus!” Fred shouted. “Ow!”

I don’t know what the others in the Waiting Room thought but I was trying not to laugh. It was all over in seconds, the bandages on his neck and chest replaced by plasters which will come off in the next couple of days. All in all it went easily enough.

Back home Fred waited for Ruby’s friends who were coming in for a sleepover. Six of them were due, Fred was beside himself. When they all arrived he welcomed them all in and showed the uninitiated among them his Godzilla movies.

At one stage, as I was making dinner, I looked into see what was happening. The girls were busy chatting and looking at fashion websites. Fred though had eased one way from the crowd and had her making Playdough shapes. There he was on the couch, boots on, surrounded by beautiful girls, chatting and having fun while dinner was being cooked.

Heaven for any man but especially our Fred.

Richly deserved too.

 

 

 

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17Nov/130

Beaumont Days

The week began as all our weeks do, worrying about Fred. He was tired and out of it on Monday morning, so much so that we kept him home from school. When I took Ruby off to school, Fred and Lisa were cuddled up. Ever since that last cluster of seizures, which didn’t develop into the usual full-blown day of activity, Fred just wasn’t himself. For some reason he needs a good day of seizures to clear the brain fully. We don’t know why but it has proven to be the case.  The usual outcome of a quiet day is that another cluster of seizures isn’t too far away and that he is never quite ok in between.

When I came back from dropping Ruby, Fred was up, dressed and sorting through his toys. He seemed fine so we decided to try school. Fred is now resigned to going to school so he didn’t put up much of a fight. Before he knew it in was in uniform and out the door. At about noon I went over to send Lisa home and took over the last hour of guard duty. At 12.30pm Fred came out for break but went back in soon afterwards. I assumed that he just wasn’t in the mood and waited for them to come out again at 1pm. This he did but Denise said that he wasn’t feeling great and so they’d skipped on staying out for break time. Nothing unusual in that and I was happy that Denise made the right call. Back in the car Fred said he had the confusion, really badly and wanted to get home.

Back home he cuddled into his Mum and slept it off. Sometimes Lisa and I are wondering if Fred knows the score by now, that if he has the confusion he gets the day off from homework. But we can’t be too sure and the increase in confusion has only happened since that easy seizure day. Monday  night he had it again and cuddled up to me in bed, talking how much he wished he didn’t have it. Though he can explain the confusion to us, and we try help him, it really is something Fred himself goes through on his own. He knows it leads to ‘the fainting’ which must be so frightening to the little man.

6 O’clock Tuesday morning and Fred breaks into a big seizure, only eleven days since the last cluster. All I can do is make him comfortable and watch him go through it. Lisa, doing her morning routine with Fred’s medicines, comes in just as it finishes. We both know the score, both disappointed at the time interval. However I think we both hoped that he may have a few, so his brain could reset itself. It’s terrible to think that it has come to this; we’re hoping Fred will have a cluster so he can have a better quality of life before the next day of seizures. That is what epilepsy does to you, I suppose.

As it happens he did have a cluster, one of the worst in a long time. Between 6am Tuesday and 1am Wednesday Fred had eleven full on seizures. We intervened with the Diazepam at about 2pm, after number five, but every couple of hours afterwards he had another one. He even got up for a while in the afternoon but we were back in bed by 7pm, it was all too much. He slept well afterwards but Lisa and I were wrecked. Fred woke about 4am and asked for me, so I took over for the rest of the night. When Lisa came in about 7.15am I could see she was in no state to take Ruby to school, so she took over and I got up.

By the time I came back from Dingle Fred and Lisa were up. Fred was asking for breakfast, not surprising as he hadn’t eaten since Monday evening and I made him some scrambled egg. He took his time eating it, his throat was sore from the seizures and his brain was frazzled. Lisa and I weren’t much better.

At lunchtime Lisa got a phone call. As I was coming down for my lunch she met me at the foot of the stairs...

“Beaumont just called; they have a cancellation and want us up tonight.”

“For a meeting?”

“No, the surgery.”

The word stunned me; the immediacy of something we’d only thought of in the abstract really took the wind from my sails. This was real and suddenly I was quite frightened. My boy was to have surgery. It took us about ten seconds to agree that we should do it. Everything made sense, no point in waiting, it was only a three hour drive away, Fred had just gone through a cluster so there was no fear of epilepsy interfering. He even needed a long sleep and he could do that on the journey to Dublin.

Lisa rang back and booked us in. There followed a couple of hours of arrangements and calls. I’d dropped Ruby off in Dingle at 9.40am saying see you this evening. We found her and she slipped into gear, arranging a sleepover with Ali on the spot. Lisa sent me off shopping while she packed and tidied. Conor called me back after I left a message and of course the bed would be ready for me, whenever I arrived. By the time I was back home the bags were packed, Fred was excited by a trip to Dublin, arrangements were in place for Muttley and all we needed to do was go. In the rush I’d forgotten lunch but we were still out the door by 3.30pm.  We stopped in Newcastle-West to stock up on goodies for the hospital and a lunch for Fred.  The lady at the deli counter asked me if I wanted the egg sandwich cut in two. I asked her to quarter it as it was for my son. I explained how he had asked for an egg mayonnaise sandwich for lunch, as a treat.

“Is that all he wanted?” she asked, “he sounds like a great little boy.”

More than you’ll ever know I said to myself.

She went on to say that she had two at home who were “mad for the sweets.” And that they’d “eat the hand off you if you weren’t careful.”

She cheered us up no end on the day that was in it.

Off we continued to Dublin, Fred still wrecked from his couple of days, had his sandwich and fell back to sleep in his mother’s arms. Outside of Limerick I heard a traffic report of an accident on the M7 and about twenty minutes  later we came upon it. For the next two hours we sat in traffic, going nowhere, listening to the radio and waiting. Eventually at 7pm they waved us on and we continued to Dublin. About 8pm Beaumont called wondering where we were but we happy to hear that all was ok. In a way we were doing them a favour, they had a theatre and a team already booked for the cancelled surgery so they didn’t want to try rearranging all that.

At 9pm, eight hours since the first call, I dropped Lisa and Fred at the main entrance to Beaumont hospital. We’d arrived and preparations could begin. I parked up and the two were in Admissions when I found them. All the paperwork was quickly done and we set off for the ward. As always the staff was very welcoming, this is Fred’s 7th hospital and the staff have never left us down. There happened to be a private room free and the nurse gave it to us. All in all the day was working out, the room was fine and everything seemed to be going to plan. Fred was tired, Lisa and I were wrecked, what a whirlwind of a day for us all. As the nurse was looking after the two I slipped off to Conor and Cathy. My job was done and tomorrow was going to be the big one.

Crossing Dublin all I could think of was sleep. We’d no idea of what Thursday was going to bring but it was going to be a big one in the life of Fred Verling and his family. At Inchicore I was looked after, fed watered, wined and in bed by 11pm. Conor and I had had time for a bit of chat on football and whatever,  which helped me wind down. By the time my head hit the pillow my eyes were closed. My family was being looked after in Beaumont and Dingle, there was nothing more we could do but wait for the morning.

At 6am I was up, by 6.15am I was showered and on the road. Back across Dublin as it woke up, doing a reverse of my route from the previous evening and I was at the hospital by 6.40am. Slowly I opened the door of the room, only to be greeted by Fred, wide awake and watching his DVD player.

“My Dad”, he exclaimed, climbing over his mother to give me a hug, “the squirrels woke me up. They were doing this,” and Fred made the usual sound we associate with cartoon squirrels. Turns out he’d been awake since 4am, having not gone to sleep till about midnight. The poor man’s clock was all out of sync after Tuesday and the travelling on Wednesday. Lisa had crawled into his bed to cuddle him and assure him over the threat of the squirrels.

About 7am the nurse came in to do the usual obs. Fred was looking for his breakfast, he was fasting, on top of not having eaten much since Monday night the poor man was starving. We promised him a special breakfast when the surgery was over; he wanted a sandwich like he gets at Temple Street.  At 7.45am the surgeon, Donnacha O’Brien arrived to see us, our first meeting. Apparently he’d rung during the night to see if Fred was ok and ready for the morning. He’d obviously come straight from the car, he still had his heavy raincoat on. Donnacha went through in detail what the surgery was about, how he would do it, what he hoped the outcome would be and the possible side effects. A deep thinking, focused, kind man, just the sort you want doing major surgery on your son. As he left I felt completely at ease with him, that he was the man for the job. Donnacha’s registrar had consent forms for me to sign and we were all set.

“See you about 8.30,” Donnacha had said as he left, “you’re first up.”

Lisa got Fred into his gown and a porter arrived to take us up. The nurse came with us, Fred sitting up looking around him, wondering what was going on, but going along with it all. At the surgery we were wheeled into the prep room. There were two lines of people waiting, all in their gowns, laid out on their trolleys, some with relatives, some alone.

The anaesthetist came out with Freddie’s file...

“So Freddie, you’re here for the VNS implant,” she started.

“No, my breakfast,” Fred answered, the poor man was starving by now.

For the next few minutes we had a lot of people coming and going, checking and rechecking Fred’s file. Then the surgery nurse took over and with a jolly porter, wheeled Fred off to theatre. They put a gown and hat on me; I was going with the man, until they put him under. In the theatre Fred was getting worried but the staff reassured him. We all chatted and it turned out the mother of the anaesthetist had taught me maths at school...Donnacha appeared in full gear, double checked Fred’s file with the anaesthetist and we were set. They gave Fred a shot of gas and he was off in the land of nod.

For the rest of the morning Lisa and I wandered around, drank coffee, ate breakfast, read and waited. At noon Fred was out and in recovery. All had gone fine, he was awake but dozy. Fred being tired fell asleep and slept until gone 1pm.  We got the nod from the nurse that he was on the way back to the ward.  Lisa and I met him at the door of the recovery ward, his eyes half open and a bandage on his neck. When he saw us he drifted off again into a deep sleep.

Lisa and I sat in vigil beside his bed for the next couple of hours. We ate some lunch and drank more coffee. Fred slept it off. At about 3.30pm Freddie opened his eyes...

“Now can I have my breakfast?” he asked through a dry, raspy throat.

What a man, nothing fazes him.

The next few hours went by in a haze. We were visited by nurses and doctors but Fred was doing great. He ate the sandwich I got him and he was up for the chicken and chips at teatime. Indeed he was sitting up watching a DVD by about 4pm. Donnacha dropped down and did the epilepsy nurse, just making sure he was ok. Lisa sent me back to Conor and Cathy’s about 8pm. Our day was done.

In the morning I was over by 6.30am again. I snuck into the room. Lisa and Freddie were cuddled up in his bed, fast asleep, the camp bed was vacant beside them. It was too inviting so I got in and dozed for an hour. When Fred woke he asked me to cuddle him, dispensing with his mother. The rest of the morning was taken up with visitors. Donnacha checking in one last time, the epilepsy nurse giving us the rundown on the VNS. It hasn’t yet being switched on, Dr Amre will do that in two weeks time. The stitches on his chest will have to come off in ten days; the ones on his neck will dissolve in about seven.

At 10.30am we were discharged and by 11am we were on the road back to Tralee. Fred cuddled up to his Mum in the back, ready for more sleep.

We were home by 2pm. Only 48 hours since we’d gotten the call but everything had changed.

Now we’re beginning the first real attempt to tackle Fred’s epilepsy.

Fred meanwhile is wearing his new boots. He asked for some ‘farmer boots’ when in the hospital and he hasn’t taken them off since Lisa got them Friday afternoon.

“Look, I’m just like Granddad Jimmy,” he said proudly walking around the front room, “I’m going to Waterford to help him on the farm.”

We just can’t wait for Amre to switch that VNS on.

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10Nov/130

That Extra Hour

During the week Fred had a cold, not a bad one just a blocked nose and the odd sneeze. As a result he had a long snooze Thursday afternoon, the usual kid’s way of dealing with illness. Later on he was wide awake when I came up to bed about 11pm. I read my book while Fred lay on his back, pretending to be asleep...

“Dad,” he said after a while, “I have to tell you about Frankie.”

“Who?” I asked, delighted that we were now getting stories of other kids from school, even if it was at 11.30 at night.

“Frankie, Lenny’s brother.”

“Lenny?”I was wondering which kid was Lenny and if Frankie was in the class too, there were a couple of blonde boys, maybe they were brothers.

“Yes, Lenny,” Fred continued, lying on his back, eyes still closed.

“What happened to him?”

“He died.”

“What?”

“Yes, the anchor fell on him”

From there Fred went on to retell in detail the opening scenes from Shark Tale, the movie he’d been watching that afternoon. I was disappointed that I wasn’t getting a story from school but in the circumstances delighted that it was just a movie story. Why he was thinking of it at time of night I don’t know but then Fred’s brain has a beautiful way of doing things differently.

Getting a common cold can disrupt Fred’s medicines and during the week he was getting a lot of confusion. We don’t know why but the virus must affect the fragile balance of the chemical reactions that have been giving Fred these long breaks since January. Any time he has an illness he can be really off his game, as anybody would, but with the added complication for Freddie of the confusion.

Earlier in the week he’d have a quick nap and be right again but as the cold came on stronger, the naps got longer. Thankfully the medicines kept on working and Fred only missed Friday at school, as he really was out of it. Ruby was home too as she was getting her braces fitted. While Lisa and Ruby were at the orthodontist Fred joined me in my office. He huffed and puffed his way up the stairs, carrying the laptop to watch Spiderman. One look at his eyes and I could see he wasn’t doing well; the confusion had hit him. The two of us cuddled up in Mummy’s bed and soon he was off in the land of nod. Lisa got a fright when she came home to Fred knocked out but for once all was somewhat ok. Fred had a long sleep, enough to break the cold and to be ready for a good old fashioned row with his sister later on. Ruby was sore from the dental work and it didn’t take much goading from Fred to get the row started. Of course when I came down later, I hid out upstairs, Fred gave me his version...

“Oh that girl,” he started but knowing the form I cut him off, not wanting to rouse Ruby again.

The big pity about the cold hitting and not allowing Fred have a full week was that his hours at school have gone up. Now he does the full four hours, from 9am-1pm and he seems to love it. We sort of bit the bullet Monday, as it was the  first day back after the mid-term I just said to his teachers, Rose and Denise that we’d try it. When I handed over to Lisa at 11am the story was that he’d be in until 12.30pm. Poor Lisa, worried enough about the effects of an extra half-hour, was beside herself when he came out with the rest of the kids at 12.30pm. Fred didn’t head for the gate but stayed out playing till 1pm and then headed back in to the classroom. At home I was getting a bit worried too when they hadn’t appeared by 12.40pm. Maybe our fears of it being too much for his brain weren’t as crazy as we’d thought.

The fact was that Fred loved it. They break for a small lunch in the classroom at 12.20, and then head out to play till 1pm. The teachers thought that was what I’d meant when I said he’d stay on. It all seems so silly now but that extra half-hour of playing was throwing his parents in at the deep end, without anyone realising it. However it was just what we needed. I think Rose must have seen the worry on Lisa’s face when she went in to collect him at 1pm as she was very apologetic to me the next morning. As I said there was no need, we were delighted with that push into the extra, extra time. Rose, relieved, laughed and said Fred was watching the clock; he’d known something was up. Denise usually goes for her lunch at noon, taking Fred to the car on her way. But Monday she’d gone off on her own. Freddie kept checking the door, waiting for her to come back to collect him. At the same time though he was getting on with his schoolwork. The poor man had little choice; he does as Denise tells him.

Apparently he loves the break times in the classroom, going around talking to the other kids and having a good laugh so the 12.20 break went well. His social skills are coming on and that was one of the main reason’s Temple Street wanted us to get Fred back at school. That and getting a normal life too for his parents...Obviously the extra time is making Freddie tired but he’ll get used to it. Something I noticed this week was how much he’s improved at his school work. His reading, writing and maths have improved greatly with Fred hardly arguing with us at homework time. He’s still way behind where he should be, but slowly getting there.

On Thursday afternoon Lisa went to Fred’s first parent teacher meeting. For once all was positive, Fred is improving, the other kids love him and he’s proving to be very sociable. That bit we knew already, Fred loves any social gathering. The other great report was how much Fred has brought Jayden out of himself. Lisa and I know how much Jayden means to Fred but apparently our Fred has made Jayden a lot more outgoing, he’s come out of his shell since meeting Freddie. They get great strength from looking out for each other. Such a wonderful thought really.

It’s something I’d noticed recently. Some mornings Fred and Jayden will arrive at the school gate at the same time. They just ease into step together, walk across the yard, Jayden chatting and Fred listening. Even at our house Jayden will chat away to Lisa while Fred will watch a DVD, just happy to know his friend is there. Without knowing it they allow each other to be themselves and that is a true friendship in the making. The first morning that Fred strolled in with Jayden, leaving me at the gate and Denise still in the classroom, really had me in tears. Just a simple every day happening, two little boys on their way to class but only a couple of months ago it would have been unthinkable.

After the horrors of the last few years Lisa and I had to get strong, get Freddie back to normal living. Cathy Madigan has made that her mission and without her we wouldn’t even have begun to try. Even Dr Amre, the man who started all this, has been amazed at Fred’s progress; he said so at the recent big meeting.

The heroes on the ground though have been Blennerville School and Jayden.

 

 

 

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3Nov/130

The Beard Observation

Once Fred gets something in his head that is it. It stays there forever or until some shock knocks it out. Usually that shock is one of his parents reaching breaking point and saying something like...

“If you ask about Tara coming over one more time, I’ll lose my life,” that would be the mother.

“If you don’t stop going on about trick or treating or I’ll turn the TV off,” the father.

Then Fred will know he’s gone too far. He’s pushed his obsession with having everything right in his head or realised that everything in his head is ok...Tara is coming over and Halloween is this week. He’ll look at you and say something like...

“Ok, ok I understand, I know I know I’ll stop talking.”

This is the last thing we want him to do, after spending so much time and effort on getting him to talk. To break my heart he’ll phrase it personally...

“Ok, my Dad.”

That ‘my Dad’ gets me every time.

With Halloween he asked when it was, it was being talked about at school and he was excited. This is another great thing about having Fred back at school, his awareness of what’s going on around him.

“Is Halloween tomorrow?” he asked me one day.

“No, Fred, it’s in fifteen days time.”

Explaining the concept of fifteen days time wasn’t as difficult as previous times, another sign of what school has been achieving, getting him to work problems through in his head.

A couple of days later he said...

“Number fifteen is gone and now it’s thirteen, the two have gone?”

So it went in the countdown to Halloween but once he got in the swing of it he was able to work the days out in his head and not ask those cryptic questions.

Which made the fact that he went into a seizure at 6am on Halloween morning even more annoying. The poor little man was so looking forward to the big day and now epilepsy was having its say.

The day before we’d had Jayden over, for some reason the first time of this mid-term break. Fred was only delighted to have him. The two immediately took over the front room, every electronic device we had was turned on. Jayden had the laptop blasting something off YouTube, something else was going on my tablet and he was busy trying to get Ruby’s laptop going as well. Fred meanwhile had himself beside his great friend, under a blanket and getting The Hulk going on his DVD player.  The TV was going too.

They were having great fun.

Unfortunately Jayden could only stay for a couple of hours but for that time he stayed close to Fred. He seemed content to just hang out, do his own thing while Fred did the same. At about 4.30pm it was time for Jayden to go home and Lisa took him in the car.

Lisa came back looking upset, as if she’d been crying.

Our man Jayden hadn’t stopped talking about Fred all the way over. Asking lovely questions about Fred’s history, how long he’s had epilepsy, what was he like before the epilepsy, did he have many friends in Dingle. Also, and this really put Lisa over the edge, he spoke of how much he liked coming over, how much he liked being with Freddie and could he come trick or treating with him?

It’s a wonder Lisa didn’t crash with the tears in her eyes.

All that had to be cancelled with that early morning seizure. However though a full blown cluster didn’t really develop. Throughout the morning he had a few frontal lobes, five second or less, maybe four in total. By about 11am he was up to coming downstairs and he even had breakfast, it was sort of a normal day.

Ruby had been away since Monday and unexpectedly she arrived in the door about 2pm. Only on a stopover though. She was on her way back to Ali’s for Halloween but Fred gave her the biggest hug ever when he saw her. After Ruby left again Fred snuggled up to me, had a short snooze but by and large he was unaffected by the morning seizure. Lisa and I were expecting the cluster to kick in at some stage but nothing happened. Fred was even aware that it was Halloween.

Somewhere inside me I found the strength to take him trick or treating. Lisa is usually the brave one, going to the beach or to the market with Fred but this time I took the chance. Fred was in his skeleton suit in a flash and Lisa found me another mask. We are lucky that it is a small estate and our corner only has a few houses, so at least we weren’t going far...

The two of us went next door. Fred rang the doorbell and when Linda slowly opened the door he shoved out the pumpkin basket and asked trick or treat? Linda reacted brilliantly and Fred loved it but kept the basket out. The box of sweets was produced and Fred waited for Linda to fill the basket. I had a cautionary hand on his shoulder, always expecting the worst. Lisa was at our door, doing the same.

After Linda we crossed the road. Heidi’s house was full of young kids and they were excited by the skeleton at their door. Freddie got another bag of sweets and we headed for home, the lights were off in the other houses. Back home Lisa was relieved that the trick or treating had ended with the treat only. Also she has a sweet tooth so the two went through the basket picking their favourites.

Friday morning Fred had a drop seizure when getting dressed. Luckily he was sitting down when he was thrown to the floor and it was all over in seconds. He hasn’t had one of those in a while and of course we thought the cluster was eventually kicking in. But no, nothing followed and we got on with our day, Fred even came on the drive out to collect Ruby.

Maybe we’re all getting a little braver.

On Saturday the Swains’ came over for lunch, passing through on their way home to Canterbury. Fred said he’d be too shy to see them but I asked him to be brave and he said he’d try. Lisa and I spent the morning preparing and I think Fred got air that this was going to be a good time. He was on trial a small bit, a family of five was coming to the house and he was on strict instruction not to revert to childish antics as he often does. I think this has been his default way of trying to fit in, to find a way to get people to like him instead of just being himself.

Bang on 1pm they arrived and Fred went to the door to welcome them. Though nervous he didn’t show it and soon he fitted in as if this was an everyday occurrence. In a way visits are now. People come and come, come and stay or just drop in. Having five adults, full of chat and laughter was great fun, something a bit different for Saturday lunchtime. We all sat around the table, Fred squeezing in an extra bit of quiche and joining in the conversations.

After lunch Fred stuck. He got Mark to come look at his Godzilla collection, I think Fred had sensed he’d found a soft touch in the Dad. After a few minutes I went to see what was happening. Fred had got the whole collection out but more than that he had Mark under a blanket watching YouTube clips with him.

Mission accomplished for Fred.

Later Sam joined them. It was a great sight to see the two grown men, under Fred’s blanket, one either side of Fred and Fred propped up on his pillows.  The three watched Godzilla while Freddie gave a running commentary. Sam, a student of Film Studies, was genuinely amazed at Fred’s in-depth knowledge of plot and characters.

As we had all drifted in to the front room it was soon full of chatter. Fred looked at Mark and Sam. Then he looked over at me. Noticing something about the two Dads and the two sons, he made one of his great observations...

“You must have a beard to be a Daddy.”

Later Tara arrived over and she was staying the night.

Fred’s week was complete.

All things considered it was a great one.

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