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

27Jan/130

The Raging Side Effects

Sunday afternoon and all is well. For the first time in I don’t know how long I’m writing this without any activity to report. Nothing. Not a sausage. If I believed in fate I’d probably be tempting it by writing that nothing has happened but by the law of averages and more importantly, experience, something will happen soon. For once though it’s been great to go through ten days of Fred having his life back, to some extent. Not since the induced seizures of early last Friday morning has he seen any activity.

Nobody said anything; we just carried on with our week as normally as possible. Ruby went to school, we all did what we can do in the circumstances and just didn’t think of epilepsy as much as usual. The week we had with Dr Shahwan has given us confidence, we feel like we have someone in our corner now, someone to put some manners on epilepsy. The main reason for the free time we’ve had has probably been down to the increase in the dose of Rivitrol. The Rivitrol, or its generic name of Clonazepam, was supposed to be a temporary addition, to get us through the Christmas period but he sees it as adding a bit of extra protection in the long run. The increase has been small, from .50mg to .75mg per day, but so far so good. Of course the free time we’ve had could be down to the ‘honeymoon period’ of a new drug but this has been an increase not an introduction so there’s hope.

We’re still watching him like a hawk, poor little man. That been said he was able to go to Smyth’s Toys to spend the voucher he got from Conor and Cathy. Two Ninja Turtle toy figures, it’s amazing that they are still so popular, wish I’d come up with that idea. The two have been battling all sorts of Godzillas and King Kong this week, a first for them no doubt. The money he got from Granddad Jimmy went on two action figures from the Ultraman series; they arrived in the post this week too. The excitement on his little face when tearing open the box that came from Japan was wonderful to see. On alternate nights during the week, either the Turtles or the Ultramans came with us to bed. He couldn’t go up without one or the other, searching through the blankets or behind the couch to find one before we went upstairs. There they’d be in the morning, waiting for us on the dressing table, as if they were protecting us through the night. Before going to the ‘toy store’ on Wednesday,  Freddie and Lisa drove me to college. Fred was eventually able to see ‘daddy’s school’ as he calls it, so it’s no longer a mystery when I say I’m off to school. He was impressed and wanted to come in with me, somehow he’s not so enthusiastic with his own school. He wasn’t too impressed when I had to go off early yesterday morning for an exam, have to say that neither was I.

If we could only get a long break or even a few periods of ten days free at a time it would be wonderful for us all. We could get some routine back and Fred could get out there and show the world what a wonderful man he is. For now though we’re all happy with what we have and we know that there is still a long road ahead of us. Dr Shawan said it will take him about ten days to read the outputs from last week’s tests...if my readings of him are correct it will be exactly ten days. That means hopefully we will be hearing from him this week. Lisa and I are both dreading it and looking forward to it. This will be a major part of Freddie’s fight against epilepsy and big decisions will have to be made on foot of what Dr Shahwan reports.

One of the unfortunate side effects of Freddie’s new drug is mood swings. Aggravation and irritability are how he expresses it.  He can go from being a happy little man to a violent, angry fellow on the slightest prompt. This first came to light on Tuesday. That morning I went up to my office leaving Lisa and Freddie doing homework. All seemed ok. About twenty minutes later Lisa called, asking me to come down and try sort Freddie. I assumed it was just him trying to dodge schoolwork. When I got down to the front room he had Lisa pinned to the couch and red in the face from anger. Freddie is a big strong lad but very gentle most of the time. It had all turned on a book Lisa wanted him to read. He didn’t want to read the next in the series, just the one he knew well already. Nothing too surprising there, but his reaction was terrible. Luckily he responds to me but even this time he was slow to, his anger was that bad. It’s funny that Lisa, who does everything for him, spends days in hospital with him, gets the brunt of it, while he’ll do exactly what I tell him to do. If I raise my voice a little or give ‘the angry eyes’ he’ll step in line. It wasn’t so easy on Tuesday, I had to separate the two, send Lisa out of the room and calm him down. The anger in his beautiful brown eyes was scary and upsetting. Incandescent with rage is a term I’ve never used before but it was certainly suitable here. Eventually I talked him down, he broke into tears but still wasn’t too happy with his mother. She was none too happy with him either. We hugged for a while and he gave a grudging ‘sorry’ to his Mum. It’s not in his character to behave like that, he might try shirking homework, who hasn’t, but going all cage fighter on Lisa was new. I left the two, still upset with each other and went back upstairs. About an hour later I came back down to check that the entente cordaile was still in place...the fact that I didn’t hear an MC announcing “seconds out, round 15” as I came down the stairs was a good sign.

When Fred saw me, he beckoned me over...

“Look what I just read,” he said, a beam of pride all over his little face as he showed the new level of books he’d read.

The anger had been forgotten.

“I love my Mum,” he said, giving her a big hug.

So it went during the week. If he didn’t want to do something he’d fly into a rage. Not all the time but enough to be upsetting, just another thing for us to be on the lookout for. So far he’s responded to me and its Lisa getting the brunt, not fair on his mother at all. The make ups have been lovely but the rages really upsetting.

This morning I looked up Rivitrol and its side effects. Anger and irritability are there along with a whole host of horrible rashes, hair loss etc. Nothing too unusual at this stage, sometimes Fred gets a side effect sometimes he doesn’t. When he first went on Tegretol, a drug he’s been on over a year now, he couldn’t use his legs properly but that passed too.

Our precious man gets so upset and then is even more upset with his frustration

Ironically another of the Rivitrol side-effects is bad dreams and nightmares. Freddie has always been a great man for the nightmares, some really vivid ones of being chased by sharks, his little legs going ten to the dozen in the bed. Remarkably he could remember them in detail in the morning. However since going on this dose of Rivitrol the dreams have almost disappeared, typical Freddie.

He did have one during the week...he started going “wooh ooh ooh” in his sleep and then he said “get that needle away from me, I don’t like it.” A dream about getting blood taken and a line put in during a hospital stay no doubt, poor little man..

We can only hope all this is a temporary phase cos the drug is helping him otherwise.

Now he’s down stairs, having his lunch. I haven’t been called to do my peace brokering bit yet, the sandwiches must have been to his liking.

 

 

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20Jan/130

Dublin’s Fair City

Sunday afternoon in Ballyard, it’s a week today since we went on our trip toTemple Street. What a week it has been, full of emotion, tears, laughter. It doesn’t seem that so much could happen in seven days but it has and we’ve come through it. The household is adjusting to us all being back home again, stepping on each other’s toes, getting back to normal. We all slept in till gone half ten this morning and I think that was badly needed.

So we headed up toDublinlast weekend. Lisa, Freddie and I did the long drive together, leaving Ruby behind inTralee. Lisa’s wonderful cousin Jill came round to stay with Ruby and to take her to school Monday morning. The two have a good close relationship and enjoy each other’s company. The drive toDublin, the farthest any of us have been in a long time, took about four hours and soon we were trying to find our way to the hospital…

As we got into the city the satnav on my phone stopped working and I kept going, in what I knew to be, the general direction of the hospital. Lisa started calling out directions a friend had texted to her. I didn’t need them at that moment as I knew where I was and I said so. Anyone who has driven with a close partner in such a situation will appreciate the scene. As we were going down the quays, Freddie decided he needed a pee, badly. All we had were the used coffee cups from the journey. So there we were, me driving in traffic, Fred kneeling over the cups, Lisa telling him to hold it while she poured a full one out the window, luckily it was dark and raining. Then I came to a spot where I no longer knew where to go and so I asked Lisa to read out the directions again. “I thought you didn’t need any directions...” Oh the pleasure of long journeys…

Eventually we got to the hospital, the satnav had started again. Its lovely old building from the outside, a converted old convent and a children’s hospital for over a century. We checked in and went up to the ward. Both Tralee andCorkhospitals are relatively new buildings so going back to an old- fashioned smaller ward, was a bit of a change. Plus we didn’t know anyone, normally we’d have Marie or some other familiar face to welcome us. The dark wood panelled walls and high ceilings reminded me of my first primary school, thankfully there wasn’t an alcoholic red-nosed presentation brother with a cane prowling the corridors, to fulfil the memory. The staff on duty and the other parents in our room were lovely. No doubt the pressure of a stretched healthcare system affects us all and we just get on with it. There were five other kids in our little ward and for a change four had epilepsy, Freddie wasn’t the odd one out for once. It showed too that the staff weren’t fazed by Freddie’s condition, made us feel that we were in somewhere different.

The meals were finished for the day so Lisa sent me off to feed myself and to find something for Freddie. After a pub ‘meal’, I picked up a sandwich for the man and headed back to the ward. The little man was well settled in his bed, sitting up watching a DVD and being looked after. He was delighted with the chicken sandwich and the half of my bowl of chips I’d wrapped up in a napkin. About 9.30 a doctor came to take Fred’s history, a brief one for the ward as we were meeting with Dr Shahwan for the full rundown in the morning. The hospital has a parent’s wing for one of the family to stay in, converted nun’s cells I’d guess from the layout and the nurse got one for me. After the long day, I said goodnight to my two warriors and headed off to try sleep.

Of course, I couldn’t, at least only fitfully and by 7.30am I was back on the ward. Lisa was snoozing, Freddie sitting up watching another DVD. “Oh hi Dad,” he said as I put my head around the curtain. Oh the normality of these stays for the man.

The morning went on, staff giving medicines, parents waking and swapping stories. One big difference for us was that we weren’t allowed tea or coffee on the ward. A sensible enough rule considering the tight quarters we were living in and its there in the other hospitals but not strictly enforced. Here it was different. Lisa went off to get a coffee for us and the other parents but the nurse caught her sneaking back onto the ward, hands full. She was sent to the parent’s kitchen and we all had to go down to drink our coffees, in rotation. No doubting who was in charge. As I sat on my own drinking mine, looking out the window I was struck by how all new this was to us. We didn’t know anyone, I was looking out on buildings I didn’t recognise, we were meeting an expert for the first time and it gave me a sense of hope, of a new beginning.

Back on the ward, a doctor came down to take us to meet with Dr Shahwan. Up we went in the lift. This is it I thought, this is a real chance to get somewhere with Freddie and the thought made me nervous.

On the next floor a very smartly dressed man breezed past us with a team following him, issuing instructions as he went. Lisa looked at me. “That’s’ him” I said, I’d googled him during the week. He looked busy, very busy and I had that sinking feeling that maybe he was only going to give us a cursory looking over and Freddie was going to be just a name on a list to him. In the office we sat and waited. In less than a minute, he was with us.

“Sorry for that” he said, “I wanted to get everyone sorted before I met with you.”

We were reassured immediately. He closed the door behind him and I got the feeling that nobody woul dare disturb us. He was immaculately dressed. Everything was in its place. His tie was tied in a perfect knot and fitted perfectly into the collar. Shoes matched his trousers and were spotless. Jacket fitted him perfectly and not a hair on his head was out of place. This is a man who believes in perfection I thought, just the guy we need on Freddie’s case.

After brief introductions, he filled us in on what he’d planned. He intended to get everything from us and prepared us for what might be a long morning. Lisa and I were only too happy, he meant business and was giving us his full attention. What a change in direction…

“Let’s start at the beginning” he carried on, “tell me what happened that first time.”

So Lisa and I went back to when Freddie was nine months old and that dark night in November when he had his first seizure. Dr Shahwan wanted detail on everything, every last detail. Detail was what he got, every last detail of the last nine years. He questioned why we did things, how Freddie reacted, how Freddie dealt with things, medicines, medicine changes, scans,  what we’d had for breakfast on the 22nd July 2007. Not quite…

When we discussed scans, he pulled Freddie’s MRIs up on the screen.

“Now,” he said, “I’m an OCD geek when it comes to reading scans, I’m sorry but it’s the way I am.”

“Don’t apologise,” I laughed, “its exactly what we want to hear.”

He showed us how he believes there was an area of Freddie’s brain that may be operated on. That he intended to use the week ahead to do enough testing to prove it beyond doubt. A model of the brain was produced and he dissected it to show us where he believed the problem lies. Yes there was a point on the right temporal lobe where Fred’s seizures were breaking through but that was only a reaction to a fault on the left. A new perspective. With his exhaustive questioning, not physically, just in detail, he got us to describe the aura Freddie gets when he feels a seizure coming on. ‘The Confusion’ as its known in our house, another of Freddie’s wonderful descriptive terms. Dr Shahwan saw this as being very significant, an indicator that the seizures were arising from the fault in the left temporal lobe before setting off the right. If Fred wasn’t getting ‘the confusion’ Dr Shahwan wouldn’t be as hopeful of surgery as a solution. In fact, he saw it as crucial. This was all new to us and gave us such hope. He spoke of how he wanted a new PET scan done, the one inCorkhadn’t been done correctly and that he’d pull in favours at the Blackrock Clinic to get one done, without delay. Once he’d done the video telemetry and read the output, Dr Shahwan wanted the PET done, to his specification. While we were talking, he was taking notes and giving Fred tasks to do. This was his way of assessing Fred. Fred drew Godzillas, circles, triangles, squares, wrote his name and notes were taken. After nearly three hours we were done, he’d got our past and mapped our future.

Dr Shahwan tempered his high hopes with words of caution, as nothing had been proved yet. However, he assured us that there would no longer be any delay in getting a resolution to Freddie’s problem. Lisa, Freddie and I headed back down to the ward, the parents delighted for the first time in years. The man had given us a feeling that he knew what had to be done, how to get it done and that he wasn’t going to let up until something was done.

That afternoon I got a call from Con Flood. He was nearby having just finished work and wondered if he could do anything for us. “Just come in and visit,” I replied, knowing that a visit was just what was needed and with the week ahead, it may be the only chance. Freddie and Lisa were off at the bathroom and I didn’t say anything when they returned. When Conor walked in Freddie just beamed with delight. He shot up on the bed, clapping his hands with glee, a smile as big asCorkharbour across his face. Conor was hugged and kissed and made sit down beside Fred on the bed. Con, too, was overcome by the greeting; it really was beautiful to witness. It may have been over two years since Fred had seen Conor but his love for him hadn’t diminished. We spent the next couple of hours joking and telling stories until the doctor came down from Dr Shahwan’s office. It was time for the video telemetry to begin and they wanted Freddie upstairs to have the sensors glued onto his head. It was a perfect time for Conor and I to slip away. I needed to get on the road toTraleeand Conor needed to get home. We walked them to the lift, Freddie gave us big hugs as he said goodbye. The sight of the little man heading into the lift, holding his mothers hand was a tough one for me but this was the beginning of a necessary week of testing. Much work lay ahead but after that meeting in the morning we had some hope to go on.

Conor lead me through the city, no need for the satnav  and I drove off back down the M7 to my darling daughter. When I got home Jill was still there, looking after Ruby who was lying under a blanket on the couch, TV on and Facebook on her laptop. Just as I remembered her. Jill left soon after getting the full update from me, Ruby and I settled down for the evening. I was tired after the driving and not sleeping so it wasn’t long before the two of us headed off to bed. InDublinFreddie was been kept awake, some medicine was taken off his dose as well, all in an effort to bring on a seizure. This time they had a dedicated telemetry room, with sensors on Freddie’s head in places he’d never had them before.

I rang about 11pm. Freddie had a seizure, a good big one but nothing else had happened. He was awake again, watching a DVD.

In the morning, I rang Lisa after dropping Ruby at school. Fred had gone to sleep about 2am but no more seizures had broken through. Typical, when you want them they don’t come.

Throughout the day, Lisa was visited by numerous members of Dr Shahwan’s team, including Dr Shahwan himself. More questions and history for Lisa to go over but she did us all proud. Dr Shahwan was happy with the quality of the readings so far but wanted more seizure activity. Fred would have to produce. Tuesday evening and no activity, Lisa had to stay awake with him, be with him all the time. There was a relief nurse provided who gave Lisa the chance to go for a break but knowing the wonderful woman that she is hardly left his side. They tried sleep deprivation, keeping him awake for hours at a time. At one stage Freddie said “my eyes are burning.” The poor little man, the things he has to go through.

Wednesday and no more activity. They tried medicine changes again. No joy. Lisa met with the neurophyscologist to discuss Freddie going back to school and his mental development but she will need a week with Freddie for a full assessment. More time inDublin, if we have to move there it wouldn’t matter at this stage, we feel we’re getting somewhere at long last.

On Thursday Fred had more visitors. Conor and Cathy came to visit, more joy for Fred. They brought mince pies, Cathy’s sister had baked them specially for the man, she’d read somewhere that he liked them. Such a lovely thought from someone we’d never met. Fred loved having them around but couldn’t get his brain to remember Cathy’s name. As he told me on the on the phone: “Conor was here with his wife.” Later on his favourite cousins came to visit. Paul and Kieran had made it in to see the man, he was over the moon. They also brought him a present of some dinosaurs and a Transformer. It really was a wonderful day of visits for the man. In a way it was a great week for the Fred, all he had to do was sit in bed, watch dvds and get visits from his favourite people. In between, trays of food were brought in, big plates of chops, chips and veg were sent back licked clean.

All great but no seizures.

Thursday was to be the last day of telemetry. Dr Shahwan didn’t want to keep us in if nothing was happening. All day Lisa had Freddie jumping around. They cut back on his meds again. By 2am, nothing had happened but he was full of jerks and twitches. At 5.30am they woke him again. The poor man. Within half an hour they kicked in. Fred had four big seizures and a few small ones by 8am.

Success at last.

Dr Shahwan was delighted when he came down later and they intervened with some Medazalem to stop the cluster developing.

The week was finishing in style. The two could go home Saturday if all was ok.

On Friday evening Ruby and I drove up to collect them.  We arrived inDublintoo late to go to the hospital so we went straight to Conor and Cathy’s home. It had been a while since they saw Ruby so Ruby lapped up the praise heaped on her. We stayed up late, oh, it must have been at least 11.30, drinking wine, eating pizza and laughing. There has been quite a bit of laughing this week, a refreshing break for us all.

On Saturday morning I was up at 7am and off to the hospital. A familiar line for me to write. I asked a nurse where was Freddie and she gave directions, no need for a surname, she knew who Freddie was. The two were asleep when I poked my head around the curtain. I sat watching them for a few minutes until Freddie woke up…”oh hi Dad” he said, rubbing his sleepy little eyes.

The doctor gave us the ok to go home at about 9.30 am and by 10.30 we were back at Conor and Cathy’s. Ruby was up at this stage and Cathy was making breakfast. More laughing, more and more laughing, life felt great. About midday, the ladies went off on a shopping trip toLiffeyValley. In truth, I think Ruby did the shopping while Lisa and Cathy had a coffee. The men stayed at home, all three cuddled up under a blanket, watching TV and chatting. Freddie was in heaven, his Dad on one side, Con on the other, a lovely way for him to pass a Saturday morning.  Dougie the dog sat at our feet. By the time the ladies returned we had to go, the road toTraleewas beckoning.

We said our goodbyes, not without a few more laughs.

The week had turned out to be a great one in the end. Dr Shahwan and his team gave us the impression that they know how to help Freddie. The visitors to the hospital had made the week shorter. For Freddie seeing his cousins was a really special treat and it was very thoughtful of the boys to make their way in. Conor and Cathy looked after us like only they can.

The next few weeks are going to be busy for us, with a lot of ups and downs no doubt. At least we feel we are getting somewhere, not struggling around in the fog  without much hope.

Now its Sunday evening, our first full day in over a week.

Freddie is by my side and I wouldn’t change that for the world.

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13Jan/130

Mince Pies and Birthday Wishes

It’s Sunday morning and we’re waiting for the call from Temple Street Children's Hospital. The epilepsy nurse in charge of Freddie’s case rang during the week to arrange everything. Freddie is due to be admitted today and to start the video telemetry tomorrow morning. The only problem is that it’s a busy hospital so we have to wait for a bed to come free. I called this morning but they won’t know till rounds are finished what beds are free and where.

 

The week just gone by was a big one for the man. He was ten on Tuesday, into the double digits now. The single digit years were eventful to say the least…On Monday evening we asked him what cake he wanted for his birthday. Freddie isn’t a great eater of sweets and rarely eats cake. He just loves his meat and veg but its also to do with the Ketogenic diet we tried for a while. It controlled his seizures a bit but not to any great extent. Without much thinking, he settled on mince pies, a favourite he discovered over Christmas. I made the mince before Christmas; we still had a few jars left and some of Lisa’s puff pastry. The sweet man, no big demands, just mince pies for his birthday treats.

 

On the morning of his birthday he woke, excited with it being his big day of the year. Lisa and I were concerned, as always, that he’d get through the day seizure free. He’s had birthdays ruined before. After Lisa returned from dropping Ruby, we brought him his presents. The man, sitting on the couch on his own, hid under the blanket when we came in singing “Happy Birthday.” He’s always so shy about any attention being brought on him. The sight of him sitting there, on his own, broke my heart a bit. By rights, a ten year old boy should be surrounded by friends on his birthday, not just his parents. He was delighted with his presents, some Ben 10 figures and a Scooby Doo jigsaw, to go with the big money he got from Granddad Jimmy in the post. Getting his own post was really exciting for him and the money is going to be spent on more Godzilla figures.

 

After Ruby came home from school, we sat down to a big birthday dinner. Roast pork with all the trimmings and not much was left by the finish. As Lisa tidied up, I got the mince pies ready, ten of them with a candle in each. Again, we sang ‘Happy Birthday’ and again he hid under a blanket but with big smile on his face. Fred came out after the singing and blew the candles out. He made a wish, which he wanted to tell us but we told him it wouldn’t come true if he told. Without having to ask each other, Lisa and I made our own wishes, those too not to be told, but both knew what they were. The pies were demolished in double quick time; you can’t beat fresh mince pies straight from the oven.

 

During the week, the two of us sat up in bed talking about things. Since Freddie went on the Clonazepam, he’s had difficulty sleeping, or at least getting to sleep. So most nights he’ll go up to bed with Lisa and still be awake when I come up about 11pm or so.

 

This week we spoke of the hospital, and why he had to go….

 

“I’m scared of that needle,” he said one night, “but I’ll be brave and hold my breath.”

 

Another night he spoke about his friends and the ones he hasn’t seen since school:

 

“I miss Thomas, he’s my best friend,” he said, looking very sad.

 

Let’s just hope this visit toTemple Street, this long awaited visit, will have him back with Thomas and his other friends before another birthday comes round.

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6Jan/130

Dancing and Fireworks

It’s Sunday morning and I’m up in ‘Daddy’s office’, Ruby has just risen and the man of the house is asleep in his mother’s arms downstairs. Well he’s more dozing than anything else; as I left the room he lifted his head to ask where I was going. He okayed my response and snuggled up to his Mum again. The little man is sleepy after a good Sunday breakfast and his first tonic -clonic seizure in nearly 17 days.

The tonic-clonic is a seizure which catches him unawares, throws him to the ground and the body shakes and contorts. Thankfully this morning’s lasted only a minute or so, a horrible minute but one we’ve been living with for the last few years. Fred and I were in the kitchen making the breakfast. Lisa is always up to the high doh when Fred’s helping me, in case something happens when he’s around hot plates etc. The last few days have been so good that even though I was watching him and not allowing him near the cooker, at least he could be in the kitchen. We had just made coffee and put an extra spoon of beans on his plate, the ‘Don’t tell Mummy’ treat, when he slid to the floor. Lisa, hearing my shout, I always make a sort of involuntary yelp of ‘hey’, as if something has snuck up on us, ran in from the front room to take charge. In no more than a minute it was all over and we carried our man back to the couch. On advice from the neurologist we didn’t give him anything, just let him sleep.

After about an hour he woke up, “Where’s my breakfast?” he asked, the woolly head looking around him. Lisa tried getting him back to sleep but he was having none of it and I went off to finish what the two of us had started.

This has all happened at the end of a great week for us. Last Saturday morning, 29th December, he’d had a couple of small frontal lobe seizures but they were shrugged off and forgotten about. On Sunday Ruby was making plans for a trip to Dingle on New Year’s Eve and Freddie got wind of it. Lisa explained what NYE was all about, fireworks, parties and dancing, such a romantic...

The next time I came into the room Freddie called me over...

“You won’t believe it Daddy,” he said, beckoning me with his little hands, Fred is a great man for using the hands.

“What?” I asked.

“There’s going to be a party!” he exclaimed, arms up in the air, hands out, “with fireworks and music and you and Mummy are going to dance.”

Long time since Lisa had the pleasure of being seduced on the dance floor by my special moves, so long in fact I wonder if my twinkle toes still have it... Where Fred got the idea that we’d be dancing I’m not sure but it was a lovely one. Maybe he just wants his parents to have a happy time.

One real improvement since Fred went on the extra med has been in his everyday awareness. The things most of us take for granted like knowing what day it is or what a day means have been lost in the fog of his drugged state. The extra med seems to have given him more space between seizure attacks, allowing him to think and take stock of life. It’s obvious from the improved reading, memory retention and just Fred being the boy we know he can be. The one downside so far has been that he just cannot go to sleep at night; sometimes I can hear him sighing in bed beside me at 1.30am, waiting for the night train.

So it was on Sunday night, but with him talking about the fireworks. When he woke Monday morning he was still going on about the fireworks.

“I’m so excited Dad, about the fireworks...” I think was the first thing he said that morning.

Our problem was where we going to find a fireworks display. Ruby was going to the display in Dingle, but that was at 10pm, too late and too far for Fred. There was no sign of Tralee having anything. At about 4pm, Lisa took Ruby off to Dingle. Fred and I went to the door to wave them off. As they went a little piece of paper was blowing in the wind around the courtyard. It caught in the corner by our front door and I picked it up to throw it in the bin. For some reason I looked at it and what was it but a notice of a firework display...yes a firework display. Not only was it on that evening, at 7.20pm, perfect timing, but it was happening from the old railway platform, no more than a couple of hundred metres from the back of our house. Now I could tell Fred there would be a fireworks display and that we could see it.

His little face lit up...

“Can we go now?” he asked.

“Later,” I said, not believing our luck.

So the two of us had dinner and passed the couple of hours in peace. Fred watched Godzilla on the DVD player he got from Santa and I watched the classic “Kind Hearts and Coronets”. About 6.30pm I could hear the cars and people arriving outside, but said nothing...then at 7.15pm, with still no sign of Lisa, I said “do you want to see the fireworks?” He was up faster than lightning and the two of us shot upstairs.

We sat on the bed and I opened the two windows as wide as they could go. It was freezing so the two of us got under the duvet. Lisa arrived just in time.

The first firework went shooting up and exploded in a shower of glittering stars with a massive bang. We didn’t miss a second of it from where we were sitting. It was like our own private display. For the next fifteen minutes or so they exploded into the sky, all in full view. Freddie was beside himself with excitement, screeching and laughing with each one. I looked at his face, it was full of wonder, he was truly happy, loving every second of it. Lisa and I, though not fully relaxed, loved it too, loved seeing our man so happy, neither of us spoke, it wasn’t necessary.

When it was all over, Freddie thanked me. Me?

It really was a perfect end to our peaceful Christmas, the only thing missing was Ruby, but as a teenager she has better things to be doing than spending NYE with her parents. I was the same. When she came home the next day, Freddie filled her in on what she had missed, not gloating, just telling her. He always misses her when she’s away.

During the week I wrote to Dr Shahwan at Temple Street Children’s Hospital. We wanted to thank him for taking Freddie’s case and also just keep us in his mind. The next morning I got a call from his epilepsy nurse. She wanted to assure me that Fred was top of the list and that they hoped to get him on Sunday the 13th for tests. “For as long as it takes,” she said. By the time she was finished I was in tears, maybe something was happening at long last. The date hasn’t been confirmed yet but as she said: “don’t worry, once you have a foot in the door you’ll be taken care of and you have your foot in our door.”

Who said the written word was dead?

So from the horrible beginning to our Christmas, not knowing what it had in store for our Fred to today and the lovely time we’ve had, it’s been a great seventeen days. Plus we have something to look forward to in the New Year.

Tomorrow Ruby is back to school, back to 7am rises, back to driving to Dingle every morning but who cares? It what we’ve being doing for the last eighteen months and those beautiful Spring mornings are on their way.

Freddie is 10 on Tuesday.

Happy Birthday to our wonderful little man.

 

 

 

 

 

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