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

29Dec/130

Thank You 2013

grex2

 

My internal sleep clock is all over the place and has been since the beginning of the school holidays. In our house we’re used to rising about 7am each morning, breakfasting and out the door with Ruby by 8am. Through the dark mornings we’ve been doing it, Fred coming down yawning and rubbing his eyes, Lisa looking like she just stepped off a catwalk and Ruby just being wonderful. For the last ten days nobody has had to get up and so our sleep-ins have gone from a luxurious 8am to a decadent, self-indulgent sometime beyond 9am. This morning Fred and I put our heads over the duvet at just gone 9.50am. The side-effect has been that I’m waking almost every night about 3.30am and lying awake for a couple of hours. For Fred it means that he can’t fall asleep at night; last night he was still awake at gone midnight, the night before he was wandering the house at nearly 1am and getting short shift from his sister when he disturbed her sleep.

As I was awake at 6am, I got up to give Freddie his medicines. This morning routine goes off like clockwork. Lisa normally comes in with the tablets and glass of water, Fred rouses himself, knocks them back and we all fall back to sleep for the next hour.  Today he roused himself, didn’t seem to take much care that it was his father and not his mother with the little cup of tablets, drank the glass of water and rolled over again. In I got beside him and just as I was getting comfortable a little voice spoke in the dark...

“Dad?”

“Yes...”

“I love you,” and with a loud sigh he rolled over, wrapped himself around me and continued his big sleep.

The one thing Fred definitely isn’t short of is love.

This week we’ve had Jaden over twice. On Monday he came for a pre-Christmas afternoon and yesterday he was around again for a post-yuletide catch-up. Before Jaden arrived on Monday we got a surprise visit from Denise, Fred’s SNA at school. She hadn’t had a chance to give Fred his present as he’d keeled over before the last day. Freddie was delighted to see her and gave Denise a big hug. Lisa mentioned that Jaden was coming over and Denise spoke of how upset Jaden was when Freddie had the seizure at school. Apparently when Denise had gone into the classroom to get Fred’s gear Jaden was full of tears, worrying about what had happened to his friend outside. It makes me cry just to think of it.

Once Jaden came around he was smothered in love by Fred. They cuddled up on the couch, under a blanket watching YouTube videos and the TV. They seem to get on very well, Jaden does his thing and Fred does his. Sometimes they will play battles and at others Jaden will play an online game while Fred watches or has a DVD going. At one stage on Monday I looked in at them and Fred was putting Jaden’s arm around him, just so he could get closer, Jaden didn’t seem to mind. Our man stayed until about 7pm, a good six hours and he didn’t want to go. He did leave eventually with a tin of Lisa’s homemade cookies and a card from Fred.

Yesterday Fred and I went round to collect him. Once we had him in the car Fred climbed into the back to be closer. The two laughed and spoke about what they got from Santa Claus. I took the long way home, just so I could listen to then chat in the back. In the mirror I could see them as close as they could be, looking at Jaden’s tablet, a Santa present. Looking at Fred, totally at ease with his friend was a lovely sight and then Fred topped it by saying...

“You’re a great friend Jaden.”

My eyes filled so quickly I nearly had to pull over to wipe them clear.

Back home the presents were shown off and Fred had done well.

In fact we had a great Christmas Day...

Last year Fred had been up by about 6am but this year I had to wake him at 8.30am. We called upstairs to Ruby and the whole family crept down to see what Santa had brought. The tree at the foot of the stairs was all lit up and two big sacks had been left underneath. Fred dragged his into the front room and emptied it out on the floor. All he’d wanted was there, Ironman, Wolverines, Batman, Godzillas and Ultramans. Santa even remembered a bottle of his favourite pink lemonade and a new pair of pyjamas. The pyjamas were quickly tried on for size and the lemonade put in the fridge for later. Santa was good to Ruby too and even the Daddy got a few special presents. For the rest of the day we ate, drank, played, watched movies, read and just had a lovely time. Fred seemed to go for the Godzilla Rex as his favourite and carried him everywhere. However later in the day, after he’d lined them up on an armchair I asked him which was his favourite...

“They all are,” he said, looking from one to the other.

Now a few days later, Lisa has finally managed to get the new PJs off Fred and into the wash. We have had a wonderful week of it and there is the excitement of Auntie Claire coming for a night. For Fred it’s been a great holiday, as it has for all of us

The New Year is on its way and it is a time of looking forward and of reflection. This time last year we were in desperate straits. In fact I think this day in 2012 I wrote to Dr Amre, imploring him not to forget us; he had made contact with CUH only just before Christmas saying he wanted to take on Freddie as a patient. Little did we know then of what an impact he would have on us and how his influence would lead to so many highlights in 2013. Without the guidance of Dr Amre, the great times of 2013 may not have happened as we would not have had the belief to even contemplate them happening.

Among these highlights, and in no particular order would be

  • Visiting Temple Street for the first time and meeting with Dr Amre...it’s led to everything since.
  • Our monthly meetings with Dr Cathy Madigan and her putting us on a path to recovery.
  • Fred going back to school.
  • Jaden coming over for the first time and every time since.
  • Denise as Fred’s SNA.
  • Blennerville School and how they care for Fred.
  • Elaine Stapleton taking over as Fred’s home tutor and hearing the laughter from the front room.
  • Uncle Bill coming over on his motorbike and giving Fred a spin around the estate.
  • Aunty Ella and Ben coming for numerous visits; making visits normal again.
  • The visit of Aunty Claire and Rudi in February and having the house full of chat.
  • Our visits to Inchicore; the love and welcome from Cathy and Conor still makes me cry as I write.
  • Going to the beach for the first time in years.
  • Me going for lunch in Cork with Denis, Brian and Cuzzie and not worrying myself sick.
  • The trips with Ed Galvin which were fun filled and not full of worry.
  • Small things like going shopping with Fred.
  • Family drives.
  • The VNS implant and what it may mean.
  • Fred fighting with his Mum over doing homework and having to go to school.
  • His bus trips to the museum.
  • Having the Swains for lunch.
  • The welcome we get at Temple Street every time we visit.
  • The good wishes from everyone.

I could write forever but all these normal events are highlights because last year they would have been beyond us. The idea of doing any of them wouldn’t have even occurred to us.

To all who made our 2013 so wonderful, thank you.

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22Dec/130

Jayden and The Cream Buns

This is the first pre-Christmas Day weekend in three years that Fred hasn’t been in hospital. It’s a line that I’ve been hoping to write all year and it’s a sure sign of the one we’ve just had that I was confident it would be written. This time last year Fred and I were in CUH Cork waiting to hear if we’d be discharged or not; today we’re sitting on the couch, at home, under a warm blanket. What a difference in a year, gone is the constant jerking, gone are the thrice-weekly seizures and in their stead is the relaxed, happy boy wrapped around me, watching the TV, while the hail lashes the windows outside.

Part of the success of this year has been Fred’s return to school. When I was a boy, the week before Christmas was my favourite at school. My only favourite. It was all part of the build-up to the big day. Now that Fred is happily settled at Blennerville, he’s had that last week of school excitement, too. During the week they were doing art, singing carols and no doubt talking non-stop about who was getting what from Santa. On Wednesday the school arranged a Christmas themed day at the local museum. There was to be a treasure hunt, movies, games and plenty of fun. The idea of Fred going on such an outing twelve months ago would have filled Lisa and me with dread. In fact, we wouldn’t even have considered it.

So on Wednesday morning I dropped Fred at school and went back outside to wait. About 9.30am, a big 50-seater bus drove up and parked at the gate. After a few minutes the lines of kids, two by two snaked out from the school and onto the bus. Bringing up the rear were Fred and Jayden, walking hand in hand with Denise in close attendance. Out on the footpath Jayden looked over at me and waved, as if he was telling me all was ok, not to worry. Denise smiled over and waved too. Fred was busy concentrating on getting up the steps of the bus but Jayden must have said something cos Fred looked over, before disappearing inside.

Once they were all safely inside, the bus started up and headed off. As they passed, Jayden waved out the window and I could just see the excited face of Fred at his side. Off I followed and reached the museum just as they pulled in at the bus stop. The excited kids trooped off and again Fred and Jayden were last out, Denise a step behind. Jayden waved over again, like some secret sign during a cold war spy mission. It was lovely seeing Fred in among the kids, laughing and joining in with excitement. They crossed the road, up the steps and disappeared inside. I got my paper out and settled in.

About 11.15am the kids lined out and crossed over to the bus stop, Jayden giving me the wave again, how he knew I’d moved I don’t know. The bus arrived to cheers and on they all piled. Once they were all on the doors were closed, and off they set for school. As they passed, I got the wave again; all was ok, mission accomplished was the message. At the school gate I collected Fred; we’re still worried about too much excitement and it was a very tired Fred who got into the car. He was also sad about something…

“Did you have a good time?” I asked.

“But Dad I didn’t get one of the magic balls,” the sad eyes looking up at me.

Denise, giving me Fred’s bag, explained that in the treasure hunt they had to find one of nine sweet filled balls hidden in the building. Fred and Jayden had slipped up on that one obviously and Fred wasn’t happy. All was forgotten by the time we got home as Fred was too busy telling Mummy of his morning.

That afternoon Fred had Olivia over for his hour of resource teaching. Olivia is a lot tougher than Elaine was last year. Elaine was no match for Fred and he’d have the duvet down off his bed for her to cuddle up with him. With Olivia though, it’s at the kitchen table, books out and homework done. Both brilliant teachers with their own style but I think Fred preferred the reward of tickling for hard work done that he got from Elaine. He likes Olivia, or Ms O’Shea as he calls her, and greets her at the car door when she arrives each day. Whether he’ll get her under the duvet only time will tell....

About half an hour into the session and Fred started complaining of the confusion. Recently Lisa and I have been wondering if Fred has copped how the confusion can get him out of situations he doesn’t like. Olivia was concerned but happy to continue but Fred was adamant, though his eyes looked clear. We don’t take chances and we have to trust that Fred isn’t pulling a quick one, but he is boy too. So Fred went inside for a snooze and Ms O’Shea left. Within a few minutes Fred was up and looking out the window as if nothing had happened. He’d slipped up in the full execution of the plan or had he? We grilled him on if he really had the confusion and explained how important it was that we could trust him. Nothing was said, but then Fred called me back in…

“Ok, ok, you got me,” he said, head down, voice full of remorse.

“What?” I asked but he didn’t elaborate, just kept his head down while Lisa told him again the importance of telling the truth about his confusion.

If he had it or not we’ll never know but the last thing we want is for Fred not to tell us. Fred’s biggest problem is that he’s a terrible liar, not as bad as his mother but poor enough. With his mother she laughs when trying to lie, Fred just can’t deal with the guilty conscience, yet.

Thursday morning and the two of us are getting ready for school. Lisa was up early and there is a big container full of chocolate flapjacks and cream buns on the sideboard waiting for us. The flapjacks are for the kids, the buns for the staff-room. When we get to school, Fred insists on carrying the big container inside, delighted to be bringing the pre-Christmas treats. I tease Denise about not eating all the buns and she looks at me accusingly.

Oh, the fun.

At 11.00am, Lisa takes over and I head off to do the last of the Christmas shopping. When I get home at 1.30pm, Fred is unconscious on the couch. Just as the morning was finishing at school, Rose had noticed Fred wasn’t looking well. Lisa rushed in just as Fred went into a seizure. Rose had managed to get Freddie into the hall and into a chair just in time. It was a mild seizure and after a few minutes they were able to rouse Fred and walk him to the car. With Fred secured in the back, Lisa drove home, got him into his pyjamas and settled for the day.

It wasn’t the worst of clusters, in all he had three big ones during the afternoon, with a few small frontal lobes thrown in for good measure. When Fred roused himself in the early evening it was just as Ruby, Hannah and Sibeal came in from school. The girls were going Christmas shopping and having a sleepover. Fred managed a bite of dinner even, not much but something was eaten for a change. He stayed up for a while, watching DVDs and looking at the girls going about their business. Around 10pm, he fell asleep in my arms but about thirty minutes later, he had another big seizure. Lisa and I got him upstairs and when he had two more within the hour, Lisa intervened with the Diazepam. Fred slept the night through and I got the expected text around 5am that the boy was looking for his Daddy.

Overall, it wasn’t a bad cluster but Fred did miss the last day at school. Teacher Rose had called the evening before enquiring after him and hoping that they would see him the next morning, just to wish him a Happy Christmas. But, as always he slept the morning through, recovering from the day before.

Fred only got to day thirteen this time. The good side was that it was mild in comparison to previous days and he recovered quickly. Whether the VNS was responsible for the relative ease of Thursday is open to question, Lisa did swipe him with the magnet a few times so maybe. Thirteen days is less than other gaps but far better than the every few days of last December. Also, hopefully, that’s him till after Christmas. The last thing we want is the day he’s been looking forward to so much ruined by epilepsy.

During the week, Fred kept asking when Christmas is and when Santa will be coming. I tried getting him to count down the days but when it’s the biggest day of the year, it’s difficult to reason with any kid. One day Fred let out a big sigh…

“What’s wrong with you?” I asked.

“I’m getting bored waiting for that Santa,” was the reply, “he’s taking forever.”

Well he does have a big job to do but one thing I do now is that Fred won’t be bored come Wednesday morning.

 

 

 

 

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15Dec/130

Our Busy Week

This morning Fred and I are alone in the kitchen. Ruby is still in bed and Lisa is out since sunrise. All that can be heard is the whirring of Fred’s remote control car as it flies around the kitchen. An early Christmas present, one opened before the 25th to be more precise, from his Auntie Ella and family. Fred mastered the controls easily enough and he had it doing backward donuts in no time. Like all boys, he’s now experimenting with what happens when it shoots off shelves or crashes head on into the skirting board. With my father’s voice in my head, I’m telling him that he won’t have it for long if he keeps smashing it around…”ok my Dad,” is Fred’s answer which of course melts my heart every time.

It has been a busy week for us.

On Monday Fred was back at school; the look on Denise’s face when she saw him come in the door was full of concern but also relief that he was ok. As she’d been the one with him when he’d gone down on Friday, we were worried how she would be. But, true to form, she was more worried about Fred. We talked for a bit and she spoke of how it was only later in the day the shock of what happened had hit her. This is a perfectly typical reaction and it helps us all get through a seizure, by concentrating on Fred. While none of us wants Fred to have a seizure, at least we now know that he’s in good hands if he has one at school.

Tuesday was a day of moving. Since we came to Tralee a lot of our furniture has been in storage in Annascaul. The longer it was there the bigger the effort to move it became in our heads. We’ve had a few plans in the past but never got round to doing it. So on Monday I rang Hannah’s Dad, Jim, and the next day was the only free one the two of us had that week. All Tuesday we worked on clearing the lock-up, shifting couches upstairs, dressers into the kitchen and cabinets into the front room. By the evening time the house was transformed into a home, all our possessions around us and ready for Christmas. Fred was delighted with the activity and took time to sit in the new chairs, to see which one suited. Of course he got confusion during the activity and slept for the afternoon while we worked around him.

That morning he’d had choir practice and had gone to the church in the bus, excitement enough. Lisa had followed behind. As it was her house that Jim and I were bringing all the furniture into, she was anxious to come back, to ‘supervise.’ Fred wasn’t having any of it. He wanted to stay with his friends, singing in the church. So after the two fighters came back, Lisa stayed with Jim while Fred and I headed back over to St John’s. When we walked in one of his classmates turned round and when he saw it was Fred he quickly told the others. All their little heads turned with welcoming smiles and Fred walked off to join them. Those welcoming smiles will stay with me forever, one of my best Christmas presents. Fred is in a good place with those Blennerville kids.

For the practice all the kids were lined up on the raised altar, Fred in a chair with Denise on one side and Jayden on the other. After a while one of the kids fainted, it took a few seconds for me to realise that for once Fred wasn’t the kid in trouble. He is usually the one to go down as if picked out by a sniper’s silent shot. The little girl raised herself up rubbing her head and the teacher got her to a seat. Minimum fuss, no panic and the choir practice continued. They’re made of stern stuff those Blennerville kids. Fred loved the fun in the church and though not the religious type, it did mark the beginning of Christmas for me.

On Thursday, we headed off to Dublin. It was time for the next increase in Fred’s VNS output. Fred didn’t want to go to school as he was going to Dublin but I got him out the door and there in time with the promise he could leave early. Denise dropped him out to me at 11am and we were on the road by 2pm, car packed with goodies for Inchicore. All Fred wanted was an egg salad sandwich from the place in Newcastle West, his latest food fixation. He gets these from time to time, peanut butter on his toast one week, pate the next and at the moment it’s egg salad sandwiches. Since we’ve begun these trips to Temple Street I’ve resisted the temptation of service station delis. On Thursday I decided to get what Fred was getting, just for the fun of it. By the time we were beyond Limerick, I was beginning to regret my weakening and when we got to Dublin, I noticed Fred hadn’t finished his one either. Maybe it was a bad batch…

As always, we had great fun with Conor and Cathy. The tree was up and the house looked gorgeous. Fred was able to show his scars off to Cathy as she’d missed them the last time. That night we had the usual musical beds with Fred undecided where he’d sleep. He began by cuddling up to me in the spare room. About 11pm he decided he’d go down to Mum on the couch and set off with his pillow under his arm By midnight he was back upstairs, pillow under the arm, muttering something about Mummy being an ‘angry lady.’ No doubt the constant shuffling trying to find a comfortable spot on the couch had annoyed his tired mother. Soon I was relegated to the mattress on the floor and Fred fell asleep. Part of his problem was that he’d slept a lot of the journey up so tiredness took a while to find him.

Friday and we were up early, our appointment was at 9am. Everyone was up getting ready for the day and a bleary-eyed Fred walked Conor out to his car, waving him off to school. We said our goodbyes to Cathy and headed over to the hospital. The traffic was with us and we were there before nine. Our appointment was over in a flash; a quick scan of the wand, a beep and the cough was back. Five minutes later Fred coughed again, not quite Marlon Brando, more a Christopher Walken this time. The cough eased off after a while but that Walken strain took over every five minutes and it’s still there this morning. With everything done, we had our favourite breakfast in the hospital canteen and we were back on the motorway by 10am. It seems a bit of a trek for such a small procedure but compared to this time last year it’s only mere inconvenience.

Yesterday, Saturday, Fred and I went off to collect the Christmas tree. On the same weekend a year ago I wouldn’t have dared leave the house with Fred alone. The idea of taking him to a packed, bustling shed with people everywhere just wouldn’t have entered my head. However a year on and that’s exactly what we did. Fred was full of wows at all the trees, holly and even the mistletoe, which I forgot to buy but hopefully Lisa will still remember me Christmas morning…The great achievement of the last year too was that I didn’t even worry when out with Fred, we did our jobs and brought the tree home, in time for the visit of his relations.

That afternoon the two of us drove out to Annascaul to get some more of our leftovers and we had great fun. At every corner Fred saw the sun going down over the hills and behind us the moon was coming up so the excitement was in getting our jobs done before it got dark. Simple fun, which we’ve missed out for a few years now.

For the rest of the day we put up the tree and decorated the house. Lisa with her impeccable taste has the place, our home, looking like a proper Christmas scene, all ready for the big day. When we were going to bed last night Fred said, “I like our house Dad.”

No doubt we have many adventures ahead of us in our little house but for now, our home is ready for Christmas.

Maybe I’ll go get some mistletoe just to be on the safe side…

 

 

 

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8Dec/130

Buttered Eggs For Breakfast

The day we’d been expecting for a while eventually came to us on Friday. It’s not that we were wishing it but we knew it had to happen sooner or later...Fred had his first seizure at school. In a way it was good to have that hurdle behind us because there is a certain inevitability about epilepsy. Everyone coped well which had been the main worry for Lisa and me. It happened just as Fred was making his way to the car at lunchtime.

Denise, as always, was with him. As Fred had his bag on his back his fall was somewhat cushioned. Of course Lisa was there in about two seconds, Usain Bolt was still be in the blocks wondering what the streak of beauty was that had just left him for dust. Thankfully all the kids were back inside, leaving just the main players, Denise, Teacher Rose and the Headmaster Terry to witness what happens when a seizure strikes. Now that Fred has had the first one and everyone coped so well we can relax, a bit. In fact Terry rang later in the day to see how Fred was doing and he spoke of how happy they were that, in the circumstances, it all went so well. Denise the star of the show, coping like a trooper.

All week I’d been expecting something to happen. Friday was day 23 in the current cycle and so Fred equalled the current record. We tried swiping him with the magnet. It’s early days with the VNS, and he did have just the seven as opposed to the twelve he had during the last cluster. Whether it made any real difference we don’t know but it’s unlikely to have, at this early stage. On Friday we’re going  for the first cranking up of the stimulator, the first of many trips to try find a therapeutic level, so all this will be discussed no doubt. For now we just hope that he equals the record again and Fred will have a peaceful Christmas.

One definite improvement I’ve noticed is in Fred’s schoolwork. Again whether it’s related to the VNS or not we don’t know. However Fred’s reading has improved dramatically which could of course be down to the excellent schooling he’s been getting. Now that he’s also getting the resource hours, an extra one on one with a dedicated teacher, his abilities are beginning to shine. When we were doing reading homework together I noticed that he now sits up and reads almost without hesitation. No longer is Fred pointing to each word, hunched over the page, as he was just a few weeks ago. Plus he doesn’t fight me when it’s homework time, well not too much.

Fred’s resource hour sessions began the Monday after Lisa did a fundraising bag-pack in Tesco. Fred asked me where Mum had gone and I explained that she was raising money for his new school, planning permission having recently been granted.  As Fred started with Ms O’Shea in a different part of the school, a portakabin out the back, he told Ruby that he had a new school which Mummy had built.

That woman really is a superwoman.

The build up to Friday hadn’t been as dramatic as previous times. He didn’t have terrible jitters or too much confusion. On Monday though he had to come home just after the mid-morning break. Denise came out to tell me he wasn’t feeling too well and when I went to collect him Fred looked very sad. The two teachers were worried that maybe they were being too careful but also worried that he was ok. As I explained we want them to be too careful until we all have a bit of confidence in the VNS. As Fred and I walked back to the car he left out a big sigh...

“I had a bad day, Dad,” he said looking at me with those big brown eyes, the eyebrows furrowed in sadness and worry.

What a sweet way of looking at his morning and in retrospect it must have been bothering him all morning, as back home he slept till about four o’clock. He didn’t even wake for lunch.

On Tuesday we took him out at break time just in case. He had been a bit tired before going to school but we have to build confidence and not let our fears constrain our days. On Wednesday Fred had a full day without any repercussions, though he was too tired for homework when Mummy suggested it....

That night when I went up to bed Fred was lying out flat on his back, eyes closed, looking the picture of innocence. Just as I got into bed he spoke...

“Look at me Dad, my eyes are closed.”

And then...

“How am I doing at sleeping?”

He has a bit to learn yet about not letting the cat out of the bag.

Thursday was library day at school. Every two weeks the Mobile Library, run by the county council, calls to the school. For about a couple of hours all the kids pour out of the school and queue to go into the truck. It’s a lovely sight, the big white truck, full of books and kids lining up full of excitement waiting to make their choices. Fred loves it and usually goes out with Jayden, Denise as always by his side. One week Jayden forgot his library card and Freddie was very upset that he didn’t have a library friend. This time too Freddie was on his own, but I think Jayden was in a bad mood, as Fred explained to me later.

The truck had parked right in front of me, head on so I could see straight in to the mini library. Fred headed for one section but took his time pouring over all the books.  Denise was picking out other ones but Fred was determined to find a particular tome. It didn’t take them long and soon Fred and Denise were heading back across the yard, our man’s head stuck in his new book. At lunchtime he showed to me at home...Ben 10 and one he hadn’t had before, he must have known it was there or spotted another kid with it. The rest of the day he had his head in it, following the stories and identifying the aliens.

Now it is Sunday. Friday afternoon was a wipe out and yesterday was spent sleeping, recovering from the day before. Fred had breakfast this morning, his first meal since breakfast Friday morning. As Ruby had Ali and Hannah over it was an extra special breakfast with the girls. Yesterday I had been at the girls beck and call taking them skating in Cork City and taxiing them around the real capital to do their Christmas shopping. All I’d time for was quick sandwich and a browse around the English Market in the city centre. I actually like ferrying them around and love their excitement while on our drives.

On the way back Hannah and Ali fell asleep in the back, all that skating and shopping tires a girl out obviously.

The one purchase I made was the Cork speciality of buttered eggs, fresh eggs which are brushed with melted butter just after being laid. Fred and I had two boiled buttered eggs for breakfast this morning and they were only gorgeous boy.

Once the girls came down it was all chat about what they’d seen and bought yesterday.

Fred politely made his exit after a few minutes. Ben 10 held a lot more interest for him and he made a bed for himself on the couch, DVD on and a pile of discs beside him to be watched.

Now that’s a man with his priorities right.

Long may it last.

 

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1Dec/130

The Big Switch On

It’s the big switch-on time of year. Christmas lights are being turned on, with d-list celebrities flicking the switch in towns and cities everywhere. On Friday we had our big moment with someone a lot more important than any X-Factor winner. Suzanne in Temple Street switched on the VNS in our Fred’s chest, hopefully starting a new chapter in his fight against epilepsy. It has been a bit of an unfair fight up to now but Fred has fought it with dignity and valour, not giving his condition an inch. Now the sides have been evened somewhat or so we feel, but only time will tell.

All week Fred had been waiting to go to Dublin. Each day was counted down; the amount of school days left before Conor and Cathy’s ticked off. The disappointment that there were still two days left after Tuesday was massive...

“I can’t believe it,” he said, “this is taking forever.”

Fred managed to confuse Denise at school as he came home Wednesday afternoon without any homework to do. She’d been told that he was going to Dublin Thursday but Fred failed to add that it wasn’t till after school. Strange that one as for once he did understand fully that it wasn’t till after school that we were going. Lisa and I had drilled it into him. All part of getting a concept of time into Fred’s brain and he did get it, eventually...

“After today there’ll be two and then we’ll get to the second Thursday,” Fred said to me on Tuesday morning.

The two being the days left at school; the second Thursday being the one I’d told him about the previous Wednesday,  as the day when we’d be going to Dublin...

“Not tomorrow, but NEXT Thursday,” I’d said, which Freddie interpreted as the ‘second Thursday.’

Fred has a future in setting and solving cryptic crosswords.

So with bags packed and the car laden down with goodies, we set off for Dublin Thursday afternoon. The second Thursday. Ruby was coming with us, which was great and added to the excitement for Fred. The Temple Street team wanted to talk to Ruby alone, keep her up-to-date, all part of their holistic approach to treating Fred and family. As always there was the usual bickering as we tried to get out the door at a reasonable time but at least it was still daylight as we left Ballyard. Ruby was in the passenger seat, keeping me company, Fred and his Mummy in the back. With just the one pit-stop, for tea and snacks in Newcastle West it was an uneventful journey. Fred even had a snooze, cuddled up to Lisa reading her Kindle under the blanket.

At Inchicore Fred couldn’t wait to get out and knock on the door on his own. When Conor opened up he got a big “surprise” followed by a big cuddle. Unfortunately Cathy was away for the night but Con was the consummate host. We ate and drank, laughed and told stories, Ruby saying little but taking in all that was being revealed of her parent’s past. Fred watched TV and wandered in around us. Then about 9pm we got a surprise visit from the wonderful Ger Flood. Fred was delighted to get a present, another Godzilla, this one a soft toy version and Fred called it his “Godzilla Teddy.” Although it had been a few years since Fred had seen Ger he wasn’t shy of him and he quickly had him slid off from the herd, watching movies on his DVD.

By 11pm it was all over, Ger was gone and I was settling into a night on the couch. About 1am the door of the room was thrown open and Fred walked in, Godzilla Teddy under his arm.

“I’m sick of that Mummy,” he said as he climbed in over me and under the blanket, obviously they’d been fighting.

Within minutes Fred was asleep and I was pushed to the edge of the couch. He was like a hot water bottle squished up against me but I didn’t mind. There was a big day ahead of him and he needed the sleep.

Friday morning and we were at Temple Street by 9am. Ruby went off for her meeting and Suzanne took us off to another office. With all this space age technology I was half expecting a room like the flight deck of the SS Enterprise but it was just simple office with a PC in the corner. We sat down; Suzanne went through the procedure with us, explaining what will happen and what to expect. Fred was very good, sitting still and listening. He was happy to show off his surgery scars to Suzanne, who was suitably impressed by how much they’d healed.

Then came the moment. Suzanne plugged the wand into a box connected to the PC. It was like one of those portable scanners you’d see at airport security. She placed it over Fred’s chest, a light flashed, she pushed the button and the VNS was up and working. ‘Just like that’ as Tommy Copper would have said.

The VNS is set at the lowest level, 0.5amps, for the next two weeks and will be ramped up by 0.25 every two weeks or so till we reach 2.0. It couldn’t be started at any level higher, the brain would freak at such interference, and each increase will be monitored closely against Fred’s seizure activity. As Suzanne explained there is a spectrum of outcomes from complete seizure free to not working at all.

“I hope to fuck that Fred is nowhere near the lower level,” I said to myself, no doubt Lisa was thinking something similar.

Suzanne explained how every five minutes the VNS would send out a signal, lasting for thirty seconds. For the first few days Fred would get an itching in his throat as he got used to the process. Exactly on cue Fred coughed, it was five minutes since the switch-on. Of course with Fred it was no small cough but a gut wrenching throat clearance, doubled up as if he’d just got one in the Solar Plexus from Mike Tyson. Five minutes later the same again. This was going to be fun.

After breakfast we set off into town. Lisa and Ruby were going to ‘look around the shops’ for few minutes. So Fred and I dropped them on Parnell Street so they could head off to the Jervis Centre. Now I knew this few minutes could last hours and noted that it was just gone 10.50am as they jumped out into the busy Dublin street...

“I’ll text you when we’re ready,” were the famous last words Lisa spoke to me as they disappeared in the crowds.

“Where are the girls going?” Fred asked.

“Who knows,” was all I could answer.

Conor has been teasing me about being a city slicker, with my knowledge gained of Dublin’s streets in the months since we began in Temple Street. In truth I wasn’t nervous about driving in the city anymore; so I decided that Fred and I could go exploring, drive around and see the sights.

“Where are we going?” Freddie asked.

“We’ll drive around, see the city, see the Christmas decorations, see what’s happening,” I replied.

And that was what we did. Fred sat up next to me, under a blanket dragged over the back seat. He oohed and awed at the Christmas scenes in the shops but in reality I think he just loved looking at the city, just as I did. We drove up into the city centre, around by the Powerscourt Centre, out towards Christchurch back in and around by Trinity, down the quays, over the Millennium Bridge and out to the Financial centre. We passed places like the Bord Gais Theatre, the National Conference Centre. The O2 and then back to O’Connell Bridge again. By now Fred’s regular cough was getting stronger and he was beginning to talk like Marlon Brando in The Godfather.

At one stage we were driving down some side streets, out by Dublin Port, enjoying the silence when his raspy “Dad?” scared the life out of me. The man needed water. Now where was I going to find a convenience store that we could easily stop outside? After a couple of minutes we came across one with a disabled parking spot; out came the badge and in we went. Fred gulped the water down; the poor must have really needed the relief.

The text came at 12.41pm,’at the Spire.’ Fred and I were parked in a corner of Stephen’s Green, watching some men digging up the street. The few minutes which had become two hours had gone quickly and the two of us really enjoyed our trip around the capital.

Going to bed that night Fred was still coughing, still doubling up in a dry retch. He put the Godzilla Teddy on the table to watch over us and slept like a babe. It had been a tough few days.

Yesterday, Saturday, he woke up saying the cough was gone and it was a fairly cough free day, just the few Marlon Brando moments and by evening he was as right as rain.

So far so good.

Let’s hope the VNS is giving epilepsy an offer it can’t refuse.

 

 

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