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

25Aug/130

Fred’s Figaries

It is Sunday morning and Fred is lying semi-comatose in his mother’s arms. For once though it’s self-inflicted. Lisa and I were having coffee at the breakfast table when we heard a crash from the front room. As we’ve been trying not to panic at every bang we hear, we didn’t rush in immediately but when we did there he was, pole-axed across the gap between the couch and the doors to the garden. With much moaning and groaning Lisa managed to turn Fred over and there was a trickle of blood flowing from inside his bottom lip. We got him onto the couch proper, lay him in his mother’s arms and patched up the wound. Just now he confessed to trying to walk along the back of the couch when he slipped and fell against the door. Thankfully it was just his lip, the poor man, but if there’s trouble our Fred will find it.

 

As today is day fifteen we’re on the alert but not overtly so, just letting things flow. Last Sunday it looked like things may be changing again. As part of the Rose of Tralee festival there was an air display, which conveniently was happening in the skies over our house. We were all out in the garden waiting for it the happen but the weather changed, the clouds came in and the drizzle followed, delaying the show. As we waited I climbed up on the oil tank and Freddie followed me up. The excitement was high with the crowds around, plus Ali and Ruby joined us. Fred though, suddenly wanted to go inside. Lisa lifted him down and they went in. I followed a few minutes later and they were on the couch. Fred had felt ‘the confusion’ come on when up on the tank. Thankfully he had the cop-on to tell Lisa who had so quickly got him away from any danger.

 

He dozed for about twenty minutes. I waited for the horrible noise to start but nothing happened. Then Fred raised his head from the pillow and announced “I think the confusion is gone now.” Just like that. Of course we were relieved but worried that maybe the epilepsy would still strike, that we would be knocked out of our two-week cycle of complacency. But as today is day fifteen seizure free it’s obvious that nothing did and the confusion must just have been a temporary, passing event. In fact, he felt so good that he stayed up to watch the fireworks at 10.30pm. He just loves them and the three of us sat up on our bed looking out the window as they exploded over the skies of Tralee. It was nearly eight months to the day since we watched the ones of New Year’s Eve.

 

The hope of that night has turned to reality to a degree, something that we are so grateful for to Temple Street and the team of Dr Shahwan,

 

On Monday morning Freddie, Ruby, Lisa and Ali went shopping. This going shopping lark is becoming popular with the man and it is great that he can go out again, get used to everyday happenings. As Ruby was having friends over for Tuesday night they had to stock up. Apparently Fred stayed close to Ali going around the shops, doing what he was told and helping Mummy fill the basket. When he came back it wasn’t even mentioned by him what he’d been doing, just a normal day for our man now. Later on the two of us went out again and all went smoothly. We went to the veg shop and I told Fred before we went not to be taking things off the shelves. He’d done it before, part of the excitement of being back in the shops again and I’d bought things I hadn’t intended to, as Fred had handled them. All went swimmingly and back in the car Fred asked,

 

“How did I do Dad?”

 

“Perfectly,” I answered

 

“And I didn’t touch anything?” he asked, looking for reassurance.

 

“Not a thing.” I kissed him on the head.

 

The little man must have been consciously trying not to touch the fruit and veg. Sweetheart.

 

When we were finished shopping we went for a drive around town; looking at the carnival and all the happenings of the festival. At one stage Fred told me to turn around and go back, he’d seen something and wanted a second look. Back along the road we went, Fred looking carefully out the window.

 

“There,” he suddenly said.

 

“What?” I asked.

 

“The campervan,” he said, “can we get one?”

 

Now I’d love the idea of a campervan holiday, someday. So I said we would when the time was right. That night at home Ed Galvin skyped from the US. Fred was beside me at the beginning of the conversation and leaned over to tell Ed,

 

“We’re getting a campervan,”  before going back to his DVD.

 

Freddie gets things in his head and it takes a few days for him to get them out again. ‘Fred’s figaries’ we call them but hopefully someday we’ll get to satisfy most of those figaries. As Fred says: “when I get better,” about the list of things he has in his head. That list is getting longer but already we’ve gotten to tick some off but Fred is busy adding more each week.

 

Ed is probably still wondering about that campervan though.

 

That night Fred woke suddenly in the middle of the night. He shot up in the bed, a real look of fear on his face, eyes wide open looking around, his arms felling his legs.

 

“What happened,” I asked, knowing Fred has vivid dreams.

 

“There was bear Dad,” he looked at me, fear written all over his little face,” a big bear was eating my leg, it was horrible.”

 

A big bear, maybe it had something to do with the campervan idea, I don’t know.

 

Fred rolled over, cuddled tightly up to me and fell back to sleep. The poor little fellow, that great imagination of his leads to some terrible nightmares at times. The next morning he still remembered the bear and told Mummy all about it over breakfast.

 

The campervan hasn’t been mentioned since.

 

When the girls arrived on Tuesday evening, he was delighted to see them but perfectly behaved around them. He still loves having them around but feigning disinterest has become his speciality, thus getting more attention. When the girls went out, dressed to the nines, Fred went to bed, job done.

 

On Thursday, Jayden came over to play. When he arrived, I was up in my office and watched it all from the window. Jayden drove up with his Mum and Fred went out to meet them with Lisa. The two mums were chatting and as Jayden got out of the car, Fred gave him a big hug. Jayden was a bit surprised at the level of the welcome but the sweet boy that he is, took it in his stride, hugging Fred back. The two had a ball for the next three hours; Jayden is very happy to do what Fred wants so they built a camp outside, had Godzilla battles and when the time came, had a big lunch in front of a movie. The Jayden visits are working out well. Of course, now Fred has another figarie of having Jayden over for a sleepover and then Fred going to Jayden’s for his sleepover. This one may be a bit down the road but we’ll get there.

 

Fred, now fully recovered from this morning’s accident, just asked me for his ‘small rectangle book.’ I had to think about that one for a minute, then it came to me. He has a spiral, reporters notepad in which he writes and draws.

 

It’s small and rectangular.

 

Fred’s description of things is wonderful and exact words may never be at the tip of his tongue but he gets there in the end by describing it as he sees it.

 

It is his parents who have to keep up with him.

 

 

 

 

 

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18Aug/130

Voices in the Head

Sunday afternoon of a busy and eventful week. Every week in Fred’s life is eventful, usually now in a good way. He’s such a funny, inventive, little man that hardly a day passes without something of note happening and this last seven days hasn’t been any different. Even this morning he was getting himself in trouble by insisting on trimming the rug in the front room with my beard trimmer. We were having coffee in the kitchen when I saw him fly past the door, the trimmer badly hidden down by his side. After a couple of minutes I heard a whirring sound coming from inside. In I shot to see Freddie hurriedly slipping the trimmer under a cushion... “Ah nothing Dad,” he said. There also was a candle lined up in front of him, what he’d planned for that I’ll never know. After refusing to hand the trimmer over he was banished to his room; not for long as he apologised and was allowed back down. He’s some man for getting in trouble over the slightest thing.

On Monday Fred was still very dopey after the seizures on Saturday and that seemed to continue up to about Wednesday. Something that occurred to me this week was that maybe this was the drugs taking over again. They do their bit for the fourteen or so days and then something happens for them not to work, giving rise to that one day of seizure activity. It’s as if they lose their powers completely. Maybe if a blood-level test was done over those couple of days I’m sure it would show his dose to be way below a level of protection. As a result seizures break through and then he’s doped over the next couple of days as the drugs take hold of his brain again. Just my theory but if true and we could find out why every fourteen days his levels drop, then we’d be on a winner. I’ve read and heard of similar cases, maybe it’s how Fred metabolises the meds or maybe they just have a natural fourteen day cycle.

Who knows with our Fred?

On Monday things starting taking an odd turn. Freddie was quite deaf after the weekend, maybe we thought it was a side effect of the day of seizing or was it still the water in his ears from the previous week. That night Ruby and I were downstairs, both of us reading, when I text came from Lisa up with Freddie in bed...”please turn down the TV, its bothering Freddie.” The TV wasn’t on, neither was the radio, I checked outside, no noises there either. I went up to report. Fred was awake because of the sounds and to make things even stranger still Fred was not just hearing noises but more specifically they were from ‘Ruby’s programs.’ Fred was actually hearing specific sounds not just white noise. Taking his pillow under his arms he went up to Mummy’s room on the next floor. When I went to bed later I went up to say goodnight but now he was hearing Lilo and Stitch, a program he’d been watching earlier in the day, about twelve hours earlier. During the night he came back down with his pillow under his arm as he couldn’t sleep without me.

The poor little man.

This continued for the whole of Tuesday, different sounds but still specific ones and now it seemed to be in one ear only. We were worried, trying not to be but worried all the same. Freddie wasn’t getting any rest or peace. On Tuesday night the two of us went to bed about 10.30. He had a worried look on his face as he didn’t want to hear any more noises, they frightened him. We read a bit and he cuddled up to me as he went to sleep. I shut the window, closed all doors, turned off the sound system and my PC upstairs, anything that might give out a noise, no matter how gentle...

“I don’t want to hear those noises again,” a frightened little boy said to me as he went over to his pillow.

As I read, he dozed.

Suddenly he shot up in the bed and looked at the wall beside him.

“Ahh,” he screeched.

“What is it?” I asked.

“I heard someone call my name Dad,” he was petrified, “they were saying Freddie, Freddie.”

I sent him up to Lisa, a change of room might suit I thought. As he got out of bed he was looking at the wall, worried about what was calling him. Off he went with the pillow under his arm again, up the stairs like a bullet from a gun. Soon he was asleep though. I looked around and couldn’t see anything that would have made the noise.

On Wednesday morning he seemed much better. The noises seemed to have gone, or at least subsided and are definitely only in the one ear now. Fred came down to me in the early morning and we have a lie-in.

Lisa made an appointment for Thursday evening with an ear specialist who Fred had seen before, it s always something with the little man. As Wednesday and Thursday passed he was in far better form but still getting jip from the left ear. His two nights of wandering around the house with a pillow under his arm has him wrecked, as are his parents from worrying about him.

On Wednesday evening the two of us went for a drive around Tralee. We did some grocery shopping and all went fine. Having got the disabled drivers badge we were able to park right outside the supermarket and this gave me great strength. At least now he didn’t have far to walk and if something did happen I wouldn’t have to leave him while I got the car. These small things mean a lot, especially when on your own.

The amusements for the Rose festival were setting up in the car parks around town and when Fred saw them he was over the moon, especially when he saw the bumper cars. When we got home he told Lisa all about the ‘carnival’ and the rides he was going to go on. Unfortunately it is not possible yet for him to do the rides; a lot of it is fear on our behalf but also we have to be careful in case something does happen. Some of the rides actually carry a warning for people with epilepsy.

When explained to him he understood but it is still not fair on him.

At the ear doctor he welcomes Freddie back. Sitting in his chair he has a look into Fred’s ears. They are blocked solid with wax. The poor man, the seizure activity may have pushed it deeper into the ear canal, blocking his hearing. Where the sounds came from we have no explanation, you never know how Fred’s brain works. Maybe he was imagining the stuff he’d seen during the day and the noises were stuck in his head...who knows?

For a good twenty minutes the doctor worked on Fred’s ears. A least enough wax for two night lights came out and he sat perfectly still throughout.

Such a relief to have a simple solution.

Back in the car I called his name while sitting beside him. He nearly jumped out the window with fright, the ears were so clean his hearing was excellent.

That night he slept soundly, the first proper night for us all week.

This morning Lisa, Freddie and I went over to the Amusements. The rides weren’t suitable but we had fun walking round doing the target games. Just being out among people again, feeling safe and secure was great for us.

At the ball pool Fred won a teddy bear.

At shoot the cans he won a key ring.

Back home, with much palaver he presented the key ring to Ruby and the Teddy Bear went to Ali.

Such lucky girls.

It didn’t even occur to Fred to keep anything for himself.

Such a sweet, selfless young man.

 

 

 

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11Aug/130

Day 18

Day 18 came and epilepsy eventually caught up with Fred. On Friday night he couldn’t get to sleep. When I went up at about 11pm he was still awake; his mother fast asleep beside him had long given up the ghost. We had been expecting something to happen since Thursday, day 16, if not before then but Fred as always confounded us. As the week had gone on he’d gradually worsen, but then he’d rally. At times you’d be led to believe that maybe we’d cracked it; whatever combination of what we’d been doing had worked, we eventually had epilepsy at bay.

So when he opened his eyes on Friday evening, a big smile on his face, it wasn’t totally unexpected by me. Sometimes I go up to bed and he’s in a deep sleep, other times he’s pretending to, so as to try fool his mother. I knew as soon as I opened the door he wasn’t asleep. Lisa went off to her room, Fred was up and over to the bookshelf...

“My eyes aren’t working Dad,” he said over his shoulder, “I close them but they won’t go to sleep. I need you to read me a story. Now what’s your favourite?”

How could I resist that one? I tried, threatening the withdrawal of all sorts of treats if he didn’t get back into bed and go off to sleep...

“I know my Dad,” he carried on, that ‘my Dad’ always gets me, “just the one book to get my eyes working.”

So we sat up in bed and read the Gruffalo’s Child. Fred hooked under my arm, as near to me as possible, commenting on bits or correcting me if I read something wrongly.

On closing the book I kissed him on the head, took off his glasses and he squished himself even closer to me. As I read he made all sorts of contented noises and began to drift off to sleep. After a while he asked if he could go to his pillow and over he rolled.

His eyes must be working, I thought.

About half an hour later a tiny frontal lobe hit. No more than about five seconds. I looked at the time, it was ten past midnight. Day eighteen. About twenty minutes later another tiny one happened but that was it. I waited with the light on for a while but he fell into a deep sleep, all seemed ok, so I turned off the light and drifted off myself.

As always, Fred manages to find his way over to me in the bed, usually I wake up with him wrapped around me and have to peel him off. On Saturday morning I was woken by the horrible howling in my ear. Fred had indeed rolled over and limpet like attached himself to me so when the seizure struck he was right in my ear. No matter how many times we hear it, we will never get used to it, that horrible howling coming from deep in his belly. I managed to wriggle myself clear and hold him in my arms as he went through it. That first one is always the worst, as if the body is caught totally unawares.

A sleepy Lisa was quickly in the door, the howling had woken her on the next floor up. Like clockwork she took over, dispatching me to her room, while making Fred comfortable. We go through this a lot and deal with it well but it never gets any easier. You always fear for Fred, wonder if we’re going to be able to control things, wonder will we need to go to the hospital. Lisa has her routine and all I can do is fit in with that.

Upstairs I heard him have another one at about 6.30am. It sounded liked it lasted the usual minute or so as well. I lay there listening for a while, by 7.30am he hadn’t had another, maybe this was going to be a gentle cluster I thought. About 8.30am I went down, I must have dozed a bit. Just as I went into the bedroom he had a seizure. Three in two and a bit hours wasn’t too bad. Lisa was looking after Fred and I went off to make her a cup of tea, as instructed, before making the coffee.

So the morning went, we had coffee and breakfast. We chatted and tried to make light of things, read a bit, laughed a bit, worried a lot. Fred had a seizure about 10.30am, two hours after the last one but still a ferocious one. When I got back from shopping the two were downstairs, I’d hoped to come home to them on the couch, Fred had asked for it not long after I left and was under the duvet on the couch. After a while he woke up and said he wanted to go downstairs, I told him we were but he got up to go, the poor man was a wreck. We went upstairs so as to show him we weren’t there and back down again to the couch. Not long afterwards he fell into a deep sleep.

Later Lisa went off to do some shopping for herself. This strange sort of normality we’re having, carrying on with our days while Fred does his thing, didn’t go unnoticed. It was good that the epilepsy was spreading itself over the hours, giving Lisa a time away and leaving me take over for a while. Before she went out he had another, number six so we gave him the Stesolid, time to try call a halt. Epilepsy had done its bit, his brain was reset, time to try fight on equal grounds.

Fred fell back to sleep, he is in a comatose state really by this stage. Of course another one broke through while Lisa was out; this was number seven but again over an hour since the last one. When there are so spread out you always think the previous one was the last one. You live on your nerves, expecting one but hoping each time that the cluster is over. I checked the time, it was nearly 4pm, where had the day gone, it didn’t seem that long ago when the whole thing had kicked off. Lisa was soon back and she gave him his medicines, Fred wasn’t awake enough to take them so we had to fight him to get them in but he eventually swallowed them with a glass of water.

A couple of hours later the ‘goodbye’ seizure struck. We never know it at the time but hope that it was the one. Fred slept for the rest of the evening, every move was monitored, with every sharp intake of breath we too inhaled but he had it on the run. Freddie even sat up for a while, put on his glasses and looked around, a sure sign that he’s winning.

“What happened to me,” he asked through dry lips and a throat sore from the howling.

“You had some faints,” Lisa answered.

“Oh,” he croaked.

The two went off to bed about ten. When I went up about 11pm, he wasn’t asleep but this time he wasn’t looking for a story, he just looked bewildered, the thousand yard stare was back but he’d had enough sleeping for one day. After a while of trying to get his eyes working he asked for his Mummy. Maybe a different parent would help him find some sleep. The Dad was sent upstairs and the Mum took over. The change worked and he passed a peaceful night.

The funny thing about the week just gone was how we tried to forget a day like yesterday was coming while still preparing for it. We’d come back from Waterford knowing that he was showing the signs, sleeping a lot and jittering a bit every now and again.

On Monday we went for a drive, just around North Kerry for a change of scenery. Fred sat up in the front beside me but instead of being full of chat he just sat there, looking out...he had me worried. I asked him a question, he didn’t answer, and I asked it again only louder...

“What?” Fred shouted back, unusually so for him.

Lisa began to laugh in the back, Fred had got water in his ears while washing his hair that morning she explained, he was just a little deaf.

We both laughed.

“What’s so funny?” Fred shouted again, which was even funnier.

The little man wasn’t happy at his parents laughing but not for the first time he’d made the pair of worriers happy with his ways.

“Hmm,” he humphed, looking away.

It must be so frustrating, having to put up with us all day.

Wednesday was day 16 and Lisa took him off to speech therapy and he did excellently, according to Freddie at any rate. That afternoon her royal highness, Ruby, had to be dropped back to Dingle and Fred went along for the ride. At home I waited and when they were gone for longer than expected I feared the worst but they came back in fine form. The delay was due to the summertime traffic in Dingle but I think he wrangled an ice-cream along the way too, judging by the evidence in the car.

There were signs that not all was well though. As the week progressed Fred began mixing up his words a lot. Not the usual grasping for the right word or words in the correct order but the wrong words completely. The fact he didn’t correct himself was sign that he was slipping. One evening he was cuddled up to me and raised his head to say something...

“Dad?”

“Yes...”

“I don’t want the sick faint,” he said in his saddest voice, scrunching up his shoulders, the big brown eyes pleading with me, “Why do I have the sick faint?”

What can you answer to that?

“We’ll get you fixed,” I tried...

“When?”

“Soon, the doctors are working on it,” was all I could get out.

“Oh, ok,” he said, trusting me with my answer, breaking my heart with that trust, the sweet boy.

There is a smell of cooking coming from downstairs, Ruby is back from Dingle and the sweet man is taking it easy, happy to have his sister back.

Normal life has returned.

Now we begin another session of day counting.

 

 

 

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5Aug/130

The Summer Holidays

Wednesday evening was spent making the card for Aunty Claire. Under Ruby’s instruction Fred made a lovely card with lots of glitter. Lots and lots of glitter. So much glitter all over the kitchen table that it took all his mother had not to lose her rag. There was glitter all over Fred, all over the floor, all over the mother, all over Ruby. Every time one of us turned into the light that evening the glitter would sparkle. Eventually I heard an “I fucking hate glitter, that’s the last time it’s coming into this house.” Fred looked at me with a surprised look on his face, as if he hadn’t been expecting it...

Fred woke up on Thursday morning and declared “Today we’re going to Waterford.” There was no disappointment, no disagreeing, no getting it wrong. Thursday was the day he’d been counting down to and the only problem was at what time we were going. All morning he was asking if we’re going now or is it time to go now? But soon enough the car was packed with every toy imaginable and plenty of changes of clothes. By noon we were out the door and our holiday had begun.

Earlier Rudi had called and asked us to collect Paul in Dungarven on our way down. Lisa made the mistake of telling this to Fred. We weren’t a mile out of Tralee when Fred was making room for Paul in the back, asking where was Dungarven, is this a shortcut and the classic “are we there yet?” Back to the drawing board with explaining time and distance to the little man and by Killarney he’d figured we wouldn’t be collecting his beloved Paulie for a while yet.

We stopped off in Cork for a few things, Ruby was getting some make-up for her birthday and I took the chance to do a browse of the Old English Market. I picked up lunch and coffees and despite a few missed texts we managed to all meet up again. Fred demolished his chicken sandwich while we drove and more importantly he knew that Dungarven was the next stop. Through the real Taoiseach Tunnel we drove, Fred loves the sensation of going under the river, and on we went towards Dungarven. Every town we went through on the way from then on was hit by a “is this Dungarven? Is this Dungarven?”

Fred  moved over next to his Mum, making room for Paulie for when we did make it to Dungarven.

At Dungarven we were early for the bus. Fred’s excitement was reaching fever pitch and he was looking out the window everywhere for Paul. Eventually the bus drove up and a very bewildered looking, hungover cousin Paulie got out. Those couple of days at the Galway Races had taken their toll. In true Paul style though he rose to the occasion and gave Fred the best of attention including praising the new hairstyle...

Fred loved it.

Within in a few minutes we were at Aunty Claire’s with hugs and kisses all round. Aunty Claire hadn’t yet come home from work but Fred was delighted with the company of the twins. They sat inside while we got ready for dinner and caught up with Rudi. Aunty Claire arrived  and she was soon followed by Granddad Jimmy. The adults sat down for dinner. Fred was in and out with his cousins but I think he was just happy to be there, getting time off from his parents fussing and knowing he was surrounded by family. Paul had gone to play a football match so Fred didn’t have him to follow around which allowed time to get to know Tess and Louis.

Around nine o’clock Lisa took Fred off to bed. For the first night in ages Fred didn’t sleep with me, by the time I’d gone to check on him the two were in a deep sleep. I was relegated to sleeping on my own and I had a terrible night’s sleep. Something to do no doubt with missing my man.

On Friday morning Lisa, Freddie and I had to go to Dublin. An appointment for an EEG had come through and so we were back up to Temple Street. The EEG is the one whereby they stick 20 or so electrodes to Fred’s head, do a lot of things like flash strobe lights in his face and read the outcome. Presumably this was a final test to go with all the other work done lately. We headed off about nine in the morning and were in Temple Street bang on 11am, just in time. I went off to park the car and get the coffees. By the time I arrived at the Neurology Dept the two had gone in. So as to not disturb the process I stayed outside and read my magazine. By noon Fred was finished, all had gone smoothly and we were free to go.

Fred’s hair was full of gel from the tests and was sticking up at all angles. Lisa fixed it for him before we set off for Conor and Cathy’s. Another treat in this week of treats. As usual we were welcomed with open arms and sat down to a lovely lunch. Fred being the centre of attention was allowed eat what he wanted and had the extra treat of Conor sitting with him while they watched some Scooby Doo. As we hadn’t been expecting to be back up in Dublin for a while this was a lovely timefor us all; it gave us a chance of yet more chat and laughter.

We set off back to Waterford about 3pm. This really was a big week for our Fred. Not only did he spend time with his cousins but he had a trip to Dublin followed by another trip back to the cousins. In the car down he had a big sleep but not before asking:

“Dad? Are we not going home?”

“No, my boy.”

“Are we staying in Waterford for a long time?”

“Yes, my boy.”

The next time I looked around he was snuggled up to his mother, sending up zeds and soon after his mother was doing the same. What a beautiful sight the two made in the rear-view mirror, fast asleep cuddled up...

That night I was exhausted, the driving eventually caught up with me. Fred said he’d sleep with me so after dinner and a glass of wine I was well ready to hit the hay. Just as we were drifting off to sleep Fred asked...

“Dad, are we not going home tomorrow?”

“No, Fred,” I answered, before asking, “How long do you want to stay?”

“Forever,” was the sleepy answer I got.

Saturday was spent doing the same. Playing with cousins in the morning but at lunchtime Paul came home. All afternoon Fred spent outside with Paulie, doing jobs and following him around. Fred was in heaven and Paul was so very patient with him. After another dinner with Granddad Jimmy, Fred and I retired to the bed. We were both tired, in fact the whole house was tired and the two men were asleep by ten pm.

Sunday was a day of goodbyes but it was also Ruby’s birthday. When I got up Fred, Tess and Louis were busy making birthday cards. More glitter but all was forgotten when our girl rose and wished the warmest of happy birthdays. Fifteen years of Ruby, fifteen wonderful years of the most wonderful girl and all her cousins marked the day with style.

Ruby was staying on for few days so it was a tearful threesome who said their goodbyes around lunchtime. Those goodbyes are very hard to do and Fred looked very sad in the back of the car as we drove off. Driving was difficult for me through the teary eyes. Fred and Paulie had special big hug, if allowed he would have stayed, no doubting that.

Within a few hours we were all home again, back to Tralee and our normal lives.

Our summer holidays for this year are over but we’ve had some fun. At the beginning of the year we would never have believed that we’d get to spend all this time down in Waterford.

It has been great and here’s to many more of the same.

 

 

 

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5Aug/130

Out and About With Fred

The week just gone was Fred’s first full week of holidays since school finished. His first week without Elaine. Last Friday week we said goodbye to Elaine for the last time. She had her final session with Fred, even though he claims he doesn’t like them, the laughter coming from the front room has indicated otherwise. Elaine has been one of the finds of the year and she will be sorely missed. She came into our lives and took over the home tutoring of our Fred in a way that we could never have imagined. Now she has a full time job in Dublin and we’ll have to find a replacement. We fear we’ll never replace her fully. The tears that flowed when she left could have hydrated the Sinai. Fred though is unaware of her significance, as any kid would, and just gave a cursory goodbye after a tearful Elaine gave him a big hug. In the back of his mind he was seeing education free days and no more interruptions to his daily schedule of messing around.

This week wasn’t one of lazing around though. No more of that, now that we have got a semblance of normality back in Ballyard. On Monday the little man went off with Mummy in the car and came back with a cool haircut. Even this was something new. Lisa parked a bit up the street and the two walked down to the busy barber’s shop. Not long ago the idea of parking and walking somewhere with Fred was out of the question. The fear of something happening had us in a vice. Such a simple everyday thing for a family to do and now that we’ve done it once we’ll do it again, if something happens we’ll have to just deal with it. The two came back after a while and Fred had the coolest haircut, the best in a long while. The barber had even used the blade on the back of Fred’s hair to give it a lovely layered, spiky look. That and a gelled swish to the front of his crop of hair made him look just gorgeous.

I came down to inspect the work...

“What a cool haircut Fred,” I said.

“Yes,” he answered, running his hands through the back of his head, “it’s just like Paulie's.”

Having a haircut like his cousin Paul’s was just the best thing ever. All day you’d catch him running his hands over the back of his head, feeling the cut, loving the fact he had a haircut like Paul.

That wasn’t the end of his adventures for the day though. For a while now we’ve needed to get some passport size photos taken of Fred. We are entitled to a Disabled Drivers permit for Fred but it needs to have his photo on it. This will allow us, when Fred is in the car, to park closer to shop entrances which will give us more freedom in the places we go to when out. The freedom of knowing he won’t have to walk too far or if something does happen we’re not too far from the car will be great. On Monday afternoon we set off to the opticians to get the shots taken. I dropped them off at the door and went to park across the road. While waiting for them I didn’t worry much, Lisa was with him so all was ok. They came back out, Fred proud as punch that the photos had come out well and he looked handsome in them.

Mission accomplished.

Nest we had to go to the bank. Now this was a big one for us. Anyone who has been in an Irish bank lately will tell of the length of the ques. Staff cutbacks, combined with not giving a toss about the ordinary customer means that there is only one teller on duty in most branches. Fred and I had to go in as Freddie had to sign the slips. The Dept of Education pays Elaine for the hours she does each week with the little man. To keep things above board they only pay at the end of term and the money is paid into Fred’s account setup for such things. That money needed to be transferred to Elaine on Monday and so the two of us went into our local branch in Tralee.

Lisa dropped us at the door and in we went. Fred’s first time in a bank or any major place of business in a long while. We queued up. Thankfully it wasn’t too busy and Fred played with the pens and slips while we waited. I’d brought every form of ID for the two of us if needed and the teller was very understanding. Then Fred had to sign the Withdrawal slip. I told him to be careful and to do a neat job of it. In typical Fred style he wrote carefully and spelt out each letter as he wrote so as to not make a mistake. Thank you, Elaine. The queue was getting longer behind us but I didn’t care, I was so proud of Fred getting to sign his name in the bank and doing it so well. All new in our world. In no time at all the work was done and we walked back out to a worried looking Mummy in the car park. She too was delighted that all went so smoothly. Fred knew we were proud of him but didn’t let on; he was too busy playing with his new hair cut.

Last week I told Fred that we would be going to Aunty Claire’s both to give him something to look forward to and to give him a concept of time. All this week he’s been asking when are we going and then saying the days left, as I’d been telling him over and over. On Monday it was ‘three more sleeps and then we’re going’...every now and again you’d hear:

“Mum, when are we going to see Aunty Claire and Aunty Rudi and Tess and Louis and Granddad Jimmy and Otto and cousin Paulie?”

T o which the ever patient mother would reply:

“Think, Freddie. What day do we have today?”

“Monday.”

“And what day are we going?”

“Thursday.”

“So how many days is that?”

“Three...”

And then later...

“Are we going to Waterford in three days, Mum?” holding up three fingers in hope.

“Yes, Freddie.”

But it worked. I think he now has a better concept of time and days, counting down to when something is going to happen. His mother may have worn ragged by the constant questions and the different ways of asking the same thing but we go there in the end.

On Tuesday I had a few jobs to do around Tralee. Lisa asked if I was bringing Fred and out of habit, because I was going to a few places, I said no. Then I thought about it, why not? So I asked him if wanted to come and do a few jobs with me...he was in the car before I knew it. The two of us were gone about an hour or more. We went to the Garda station to get his photos stamped; to the Credit Union; to the bank again; to the Off-Licence; to the butchers; to the barbers for Daddy to get his beard trimmed and finally to the small shop to get a treat for Ruby and Mummy, some liquorice sticks.

It was so great for me to be out and about with my son, doing ordinary things but each one an achievement. Lisa has taken the lead in being brave about this, so it was time that I was as well. I loved it, the two of us driving around doing things.

When we got home, Mummy asked where we’d been but Fred couldn’t remember. A frustrating reminder of what epilepsy has done to our boy. Much as he tried he couldn’t get the memory to work. Very upsetting for us. He just looked blankly at us, just not able to remember, no amount of hinting made a tack of difference.

However that night the two of us were in bed. I said what a great day we’d had and thanked him for keeping me company. Then without prompting he listed off where we’d been and what we’d done. Amazing how that boy’s brain works. When Fred woke Wednesday the first thing he said was “tomorrow we go to Aunty Claire’s.” Time is beginning to mean something too.  It has been a tough one, with just a few expletives from his mother, but the effort to get him to think about days has been a success.  It is probably all connected, getting out and about, just living a normal life.

Lisa made out a list of things we needed as she had a lot of baking to do for the trip east. Continuing on from Tuesday’s success Fred came shopping with me. This time Ruby came as well. Fred brought the list, a pen to tick things off with and a coaster off the table to lean on when writing. As we drove over he added glitter and glue to the list, things he wanted for a card he was planning to make for Aunty Claire. We parked up in the car-park at the back of the big Super-Valu and in we went. Fred’s first time in a big supermarket in at least five years. It didn’t seem to bother him much. Around we went, filling the basket and ticking things off as we went; the coaster came in handy.  Ruby even picked out some hair gel so he could keep his hair like Paulie’s. We queued up like a normal family and Fred packed the bag, while I paid.

The two things missing where glue and glitter. Ruby knew a shop in town which may have it.

Off we set again. This shop was in the centre of town and though there was a Disabled Parking spot outside, I couldn’t take it, not having the permit yet. So I parked across the road in a loading bay, while Ruby and Freddie got out and crossed the busy street. Our Fred crossing the street to go shopping, holding his sister’s hand, how wonderful to see. I stayed in the loading bay, waiting. They seemed to take forever and the longer they took the more worried I got. It was busy and I was expecting a Garda to move me on. But it all went well. After about ten minutes, maybe longer, the two appeared, Freddie with a bag in his hand. They crossed the road and jumped in, Fred beside himself with excitement. Ruby said he’d been excellent in the shop.

Home we went to report to Mummy and to make that card for Aunty Claire.

Thursday was coming and Fred wasn’t forgetting that.

 

 

 

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