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.
Sunday evening we had a surprise visitor. Rose, Fred’s teacher from school called around to deliver a ‘get well soon’ card from all his classmates. A sheet of A3 hard paper folded in two; apparently it had been designed by Jayden. On the cover were cut-outs of hand drawn Godzillas and dinosaurs, with a big ‘Get Well Soon Freddie’ at its centre. Jayden knows our Fred. Inside all the class had written little messages of goodwill. It really was the sweetest card and Freddie loved it. Usually he dismisses a card and looks for the real present but not this time, he was genuinely taken aback by it. When she had called, Fred had managed to slip on his new ‘Granddad Jimmy’ boots and now he proudly showed them to Rose. She was suitably impressed.
Those boots have gone everywhere Fred went all week. When I wake him in the morning, there are the boots beside the bed, cuddle him under a blanket on the couch and he’s wearing them, at breakfast in the morning they are under the table. If he could he would have worn them to school, Lisa and I had to draw the line at that one but he does love the boots. When we were preparing dinner during the week Fred kept walking around the kitchen, stopping to look at his reflection in the cooker or fridge door...
“What are you doing?” I asked, getting frustrated by nearly falling over him at every turn.
“Practising walking like Granddad Jimmy,” Fred answered as if it was the most obvious thing in the world.
On Monday he had a fight with his mother as he wanted to wear shorts going out in the car, so he wouldn’t have to worry about tucking longer legs into the boots. The mother won for once but I think only when sending the boots back was threatened. Our Fred and his figaries, when he gets something in his head that’s it, and he certainly pushes the limits of his mother’s legendary patience.
With all the recent disruptions Fred’s sleep has been all over the place. By Monday it was only four days since he’d been under anaesthetic and during that time he’d been falling asleep most afternoons. We’d decided that he was well enough in himself to go back to school Tuesday, even if he wasn’t keen on himself...
“I can’t go back to that school, I’m too tired,” was the response to Lisa mentioning it.
I bumped into Denise in town and told her we’d be back the next morning. She said they’d be delighted and especially so Jayden. Lisa had said to Jayden’s Mum that Fred may be back Monday and all that morning Jayden had been looking for Fred. If someone came to the classroom Jayden would look expectantly and the longer the morning went, the more worried the poor boy got about his friend. But all day Fred pulled the tired card, dozing when he could and yawning continuously. However when I went to bed that night he was awake and he was still awake at 12.45am...
“Go to sleep, Fred,” I ordered...
“I am asleep, look my eyes are closed, look,” he answered lying on his back, hands clasped on his chest looking the picture of innocence. He began to list the movies he’d watched all day, eyes still closed, how they’d made him laugh. I let him talk to try get it out of his system.
At 1.05am he rolled over on his side, a sure sign that sleep was on the way. He left out a long, deep breath as if surrendering, and said “night my Dad.” In a way it felt as if that was the end of the surgery intervention, the next morning he would be back at school and normality could resume.
In the morning a sleepy boy came down for breakfast. We all ate and by 8.05am Lisa and Ruby were out the door. Fred and I took our time; Lisa had washed him from top to bottom the previous night, so all we had to do was get dressed. We set off at our usual time and arrived at school just as Jayden was getting out of his car.
The look of joy on Jayden’s face. A smile as wide as Cork Harbour was all I could see as he walked across the yard. Fred, conscious of being the centre of attention, had his head down but looked up to get the big welcome back from all the class. He had the big bandage on his neck to show off and for once he didn’t seem to mind the eyes of everyone on him. Denise settled him into his seat and I went back to my vigil in the car.
It was as if nothing had ever happened. What a boy. That evening he came home with a special, private drawing from Jayden, wishing him well.
Wednesday evening and the two of us are sitting on the couch. Fred goes off and asks his Mum for the Playdough and a tray...
“What are you going to do with that?” I asked.
“You’ll see,” was the mysterious answer.
After an age of chopping and rolling Fred produced his masterpiece. Up he climbed beside his mother, holding the tray away until he was settled...
“Ta dah!” he declared.
“What is it?”
“It’s a map of the world,” Fred said proudly.
He’d made shapes from the different colours and laid them out on the tray, like in an old fashioned atlas, showing the continents spread out in distinct shades.
“Wow!” Lisa and I both said, and it really was great.
“Where’s this? Lisa said, pointing to an island of blue.
“That’s where Jaws lives,” Fred explained and he continued with all the continents, linking them to his movie characters. The Lion King and Madagascar were in Africa, Jurassic Park safely on its own, Godzilla in what must be Japan and so on. Ingenious.
On Friday evening I had to deliver a parcel, it must have been nearly 8pm. I asked Fred if he wanted to come with me, something I wouldn’t have dared risk before.
“Sure,” he answered, jumping up and putting on the boots. It was cold out, a beautiful, clear starry night and Fred found his heavy winter coat too. In the car we drove over to the parcel depot, chatting and looking out at the night. When we finished I asked if he wanted to go through the centre of town, to see what was happening. Fred nodded, he was enjoying himself. We drove up a side street and just as we got to the top I slowed to let traffic past. Fred jumped with excitement...
“Look Dad,” he pointed to the street we were about to turn into, “Christmas lights!”
Sure enough it looked like they had switched on the lights. The previous night I’d driven Ruby and her friends across town and they weren’t on. They must have known Fred was out...
“Keep looking,” I said. As we were on a corner I didn’t know if the street was fully lit. Fred stared intently at the corner.
We turned into the street. It was aglow with beautiful lights.
“Wow! Look at that!” was all Fred could get out.
The first sight of Christmas lights is always spectacular. The traffic was heavy, we didn’t mind, driving slowly; looking at the different lights was just wonderful. Fred’s face was up against the window, pointing at the different shapes...”look at the snowflakes, look there’s Santa, more snowflakes.”
A couple of years ago we’d done the same journey, just before Christmas week. That time though we were on the way to hospital with Fred in a cluster, Lisa and I crying. That this time Fred and I were just out on a drive made it even more special for me.
Saturday morning I took Fred over to the doctor’s to get the stitches taken out. We waited in the surgery and when our time came Fred strode in, happy to be getting the bandages off. The doctor put him up on the examination couch and Fred pulled up his top. Fred is proud of his war wounds. The bandage came off easily enough showing a row of stitches, covering a very neat cut of about four inches across his left breast. Fred looked at the scissors and the blade the doctor now had in his hand.
“What are you doing?” he wasn’t so sure now.
“The doctor is taking out your stitches,” I reassured him.
The doctor pulled up the first knot with the scissors so as to cut it with the blade.
“Oh my Jesus!” Fred shouted. “Ow!”
I don’t know what the others in the Waiting Room thought but I was trying not to laugh. It was all over in seconds, the bandages on his neck and chest replaced by plasters which will come off in the next couple of days. All in all it went easily enough.
Back home Fred waited for Ruby’s friends who were coming in for a sleepover. Six of them were due, Fred was beside himself. When they all arrived he welcomed them all in and showed the uninitiated among them his Godzilla movies.
At one stage, as I was making dinner, I looked into see what was happening. The girls were busy chatting and looking at fashion websites. Fred though had eased one way from the crowd and had her making Playdough shapes. There he was on the couch, boots on, surrounded by beautiful girls, chatting and having fun while dinner was being cooked.
Heaven for any man but especially our Fred.
Richly deserved too.
The week began as all our weeks do, worrying about Fred. He was tired and out of it on Monday morning, so much so that we kept him home from school. When I took Ruby off to school, Fred and Lisa were cuddled up. Ever since that last cluster of seizures, which didn’t develop into the usual full-blown day of activity, Fred just wasn’t himself. For some reason he needs a good day of seizures to clear the brain fully. We don’t know why but it has proven to be the case. The usual outcome of a quiet day is that another cluster of seizures isn’t too far away and that he is never quite ok in between.
When I came back from dropping Ruby, Fred was up, dressed and sorting through his toys. He seemed fine so we decided to try school. Fred is now resigned to going to school so he didn’t put up much of a fight. Before he knew it in was in uniform and out the door. At about noon I went over to send Lisa home and took over the last hour of guard duty. At 12.30pm Fred came out for break but went back in soon afterwards. I assumed that he just wasn’t in the mood and waited for them to come out again at 1pm. This he did but Denise said that he wasn’t feeling great and so they’d skipped on staying out for break time. Nothing unusual in that and I was happy that Denise made the right call. Back in the car Fred said he had the confusion, really badly and wanted to get home.
Back home he cuddled into his Mum and slept it off. Sometimes Lisa and I are wondering if Fred knows the score by now, that if he has the confusion he gets the day off from homework. But we can’t be too sure and the increase in confusion has only happened since that easy seizure day. Monday night he had it again and cuddled up to me in bed, talking how much he wished he didn’t have it. Though he can explain the confusion to us, and we try help him, it really is something Fred himself goes through on his own. He knows it leads to ‘the fainting’ which must be so frightening to the little man.
6 O’clock Tuesday morning and Fred breaks into a big seizure, only eleven days since the last cluster. All I can do is make him comfortable and watch him go through it. Lisa, doing her morning routine with Fred’s medicines, comes in just as it finishes. We both know the score, both disappointed at the time interval. However I think we both hoped that he may have a few, so his brain could reset itself. It’s terrible to think that it has come to this; we’re hoping Fred will have a cluster so he can have a better quality of life before the next day of seizures. That is what epilepsy does to you, I suppose.
As it happens he did have a cluster, one of the worst in a long time. Between 6am Tuesday and 1am Wednesday Fred had eleven full on seizures. We intervened with the Diazepam at about 2pm, after number five, but every couple of hours afterwards he had another one. He even got up for a while in the afternoon but we were back in bed by 7pm, it was all too much. He slept well afterwards but Lisa and I were wrecked. Fred woke about 4am and asked for me, so I took over for the rest of the night. When Lisa came in about 7.15am I could see she was in no state to take Ruby to school, so she took over and I got up.
By the time I came back from Dingle Fred and Lisa were up. Fred was asking for breakfast, not surprising as he hadn’t eaten since Monday evening and I made him some scrambled egg. He took his time eating it, his throat was sore from the seizures and his brain was frazzled. Lisa and I weren’t much better.
At lunchtime Lisa got a phone call. As I was coming down for my lunch she met me at the foot of the stairs...
“Beaumont just called; they have a cancellation and want us up tonight.”
“For a meeting?”
“No, the surgery.”
The word stunned me; the immediacy of something we’d only thought of in the abstract really took the wind from my sails. This was real and suddenly I was quite frightened. My boy was to have surgery. It took us about ten seconds to agree that we should do it. Everything made sense, no point in waiting, it was only a three hour drive away, Fred had just gone through a cluster so there was no fear of epilepsy interfering. He even needed a long sleep and he could do that on the journey to Dublin.
Lisa rang back and booked us in. There followed a couple of hours of arrangements and calls. I’d dropped Ruby off in Dingle at 9.40am saying see you this evening. We found her and she slipped into gear, arranging a sleepover with Ali on the spot. Lisa sent me off shopping while she packed and tidied. Conor called me back after I left a message and of course the bed would be ready for me, whenever I arrived. By the time I was back home the bags were packed, Fred was excited by a trip to Dublin, arrangements were in place for Muttley and all we needed to do was go. In the rush I’d forgotten lunch but we were still out the door by 3.30pm. We stopped in Newcastle-West to stock up on goodies for the hospital and a lunch for Fred. The lady at the deli counter asked me if I wanted the egg sandwich cut in two. I asked her to quarter it as it was for my son. I explained how he had asked for an egg mayonnaise sandwich for lunch, as a treat.
“Is that all he wanted?” she asked, “he sounds like a great little boy.”
More than you’ll ever know I said to myself.
She went on to say that she had two at home who were “mad for the sweets.” And that they’d “eat the hand off you if you weren’t careful.”
She cheered us up no end on the day that was in it.
Off we continued to Dublin, Fred still wrecked from his couple of days, had his sandwich and fell back to sleep in his mother’s arms. Outside of Limerick I heard a traffic report of an accident on the M7 and about twenty minutes later we came upon it. For the next two hours we sat in traffic, going nowhere, listening to the radio and waiting. Eventually at 7pm they waved us on and we continued to Dublin. About 8pm Beaumont called wondering where we were but we happy to hear that all was ok. In a way we were doing them a favour, they had a theatre and a team already booked for the cancelled surgery so they didn’t want to try rearranging all that.
At 9pm, eight hours since the first call, I dropped Lisa and Fred at the main entrance to Beaumont hospital. We’d arrived and preparations could begin. I parked up and the two were in Admissions when I found them. All the paperwork was quickly done and we set off for the ward. As always the staff was very welcoming, this is Fred’s 7th hospital and the staff have never left us down. There happened to be a private room free and the nurse gave it to us. All in all the day was working out, the room was fine and everything seemed to be going to plan. Fred was tired, Lisa and I were wrecked, what a whirlwind of a day for us all. As the nurse was looking after the two I slipped off to Conor and Cathy. My job was done and tomorrow was going to be the big one.
Crossing Dublin all I could think of was sleep. We’d no idea of what Thursday was going to bring but it was going to be a big one in the life of Fred Verling and his family. At Inchicore I was looked after, fed watered, wined and in bed by 11pm. Conor and I had had time for a bit of chat on football and whatever, which helped me wind down. By the time my head hit the pillow my eyes were closed. My family was being looked after in Beaumont and Dingle, there was nothing more we could do but wait for the morning.
At 6am I was up, by 6.15am I was showered and on the road. Back across Dublin as it woke up, doing a reverse of my route from the previous evening and I was at the hospital by 6.40am. Slowly I opened the door of the room, only to be greeted by Fred, wide awake and watching his DVD player.
“My Dad”, he exclaimed, climbing over his mother to give me a hug, “the squirrels woke me up. They were doing this,” and Fred made the usual sound we associate with cartoon squirrels. Turns out he’d been awake since 4am, having not gone to sleep till about midnight. The poor man’s clock was all out of sync after Tuesday and the travelling on Wednesday. Lisa had crawled into his bed to cuddle him and assure him over the threat of the squirrels.
About 7am the nurse came in to do the usual obs. Fred was looking for his breakfast, he was fasting, on top of not having eaten much since Monday night the poor man was starving. We promised him a special breakfast when the surgery was over; he wanted a sandwich like he gets at Temple Street. At 7.45am the surgeon, Donnacha O’Brien arrived to see us, our first meeting. Apparently he’d rung during the night to see if Fred was ok and ready for the morning. He’d obviously come straight from the car, he still had his heavy raincoat on. Donnacha went through in detail what the surgery was about, how he would do it, what he hoped the outcome would be and the possible side effects. A deep thinking, focused, kind man, just the sort you want doing major surgery on your son. As he left I felt completely at ease with him, that he was the man for the job. Donnacha’s registrar had consent forms for me to sign and we were all set.
“See you about 8.30,” Donnacha had said as he left, “you’re first up.”
Lisa got Fred into his gown and a porter arrived to take us up. The nurse came with us, Fred sitting up looking around him, wondering what was going on, but going along with it all. At the surgery we were wheeled into the prep room. There were two lines of people waiting, all in their gowns, laid out on their trolleys, some with relatives, some alone.
The anaesthetist came out with Freddie’s file...
“So Freddie, you’re here for the VNS implant,” she started.
“No, my breakfast,” Fred answered, the poor man was starving by now.
For the next few minutes we had a lot of people coming and going, checking and rechecking Fred’s file. Then the surgery nurse took over and with a jolly porter, wheeled Fred off to theatre. They put a gown and hat on me; I was going with the man, until they put him under. In the theatre Fred was getting worried but the staff reassured him. We all chatted and it turned out the mother of the anaesthetist had taught me maths at school...Donnacha appeared in full gear, double checked Fred’s file with the anaesthetist and we were set. They gave Fred a shot of gas and he was off in the land of nod.
For the rest of the morning Lisa and I wandered around, drank coffee, ate breakfast, read and waited. At noon Fred was out and in recovery. All had gone fine, he was awake but dozy. Fred being tired fell asleep and slept until gone 1pm. We got the nod from the nurse that he was on the way back to the ward. Lisa and I met him at the door of the recovery ward, his eyes half open and a bandage on his neck. When he saw us he drifted off again into a deep sleep.
Lisa and I sat in vigil beside his bed for the next couple of hours. We ate some lunch and drank more coffee. Fred slept it off. At about 3.30pm Freddie opened his eyes...
“Now can I have my breakfast?” he asked through a dry, raspy throat.
What a man, nothing fazes him.
The next few hours went by in a haze. We were visited by nurses and doctors but Fred was doing great. He ate the sandwich I got him and he was up for the chicken and chips at teatime. Indeed he was sitting up watching a DVD by about 4pm. Donnacha dropped down and did the epilepsy nurse, just making sure he was ok. Lisa sent me back to Conor and Cathy’s about 8pm. Our day was done.
In the morning I was over by 6.30am again. I snuck into the room. Lisa and Freddie were cuddled up in his bed, fast asleep, the camp bed was vacant beside them. It was too inviting so I got in and dozed for an hour. When Fred woke he asked me to cuddle him, dispensing with his mother. The rest of the morning was taken up with visitors. Donnacha checking in one last time, the epilepsy nurse giving us the rundown on the VNS. It hasn’t yet being switched on, Dr Amre will do that in two weeks time. The stitches on his chest will have to come off in ten days; the ones on his neck will dissolve in about seven.
At 10.30am we were discharged and by 11am we were on the road back to Tralee. Fred cuddled up to his Mum in the back, ready for more sleep.
We were home by 2pm. Only 48 hours since we’d gotten the call but everything had changed.
Now we’re beginning the first real attempt to tackle Fred’s epilepsy.
Fred meanwhile is wearing his new boots. He asked for some ‘farmer boots’ when in the hospital and he hasn’t taken them off since Lisa got them Friday afternoon.
“Look, I’m just like Granddad Jimmy,” he said proudly walking around the front room, “I’m going to Waterford to help him on the farm.”
We just can’t wait for Amre to switch that VNS on.
During the week Fred had a cold, not a bad one just a blocked nose and the odd sneeze. As a result he had a long snooze Thursday afternoon, the usual kid’s way of dealing with illness. Later on he was wide awake when I came up to bed about 11pm. I read my book while Fred lay on his back, pretending to be asleep...
“Dad,” he said after a while, “I have to tell you about Frankie.”
“Who?” I asked, delighted that we were now getting stories of other kids from school, even if it was at 11.30 at night.
“Frankie, Lenny’s brother.”
“Lenny?”I was wondering which kid was Lenny and if Frankie was in the class too, there were a couple of blonde boys, maybe they were brothers.
“Yes, Lenny,” Fred continued, lying on his back, eyes still closed.
“What happened to him?”
“Yes, the anchor fell on him”
From there Fred went on to retell in detail the opening scenes from Shark Tale, the movie he’d been watching that afternoon. I was disappointed that I wasn’t getting a story from school but in the circumstances delighted that it was just a movie story. Why he was thinking of it at time of night I don’t know but then Fred’s brain has a beautiful way of doing things differently.
Getting a common cold can disrupt Fred’s medicines and during the week he was getting a lot of confusion. We don’t know why but the virus must affect the fragile balance of the chemical reactions that have been giving Fred these long breaks since January. Any time he has an illness he can be really off his game, as anybody would, but with the added complication for Freddie of the confusion.
Earlier in the week he’d have a quick nap and be right again but as the cold came on stronger, the naps got longer. Thankfully the medicines kept on working and Fred only missed Friday at school, as he really was out of it. Ruby was home too as she was getting her braces fitted. While Lisa and Ruby were at the orthodontist Fred joined me in my office. He huffed and puffed his way up the stairs, carrying the laptop to watch Spiderman. One look at his eyes and I could see he wasn’t doing well; the confusion had hit him. The two of us cuddled up in Mummy’s bed and soon he was off in the land of nod. Lisa got a fright when she came home to Fred knocked out but for once all was somewhat ok. Fred had a long sleep, enough to break the cold and to be ready for a good old fashioned row with his sister later on. Ruby was sore from the dental work and it didn’t take much goading from Fred to get the row started. Of course when I came down later, I hid out upstairs, Fred gave me his version...
“Oh that girl,” he started but knowing the form I cut him off, not wanting to rouse Ruby again.
The big pity about the cold hitting and not allowing Fred have a full week was that his hours at school have gone up. Now he does the full four hours, from 9am-1pm and he seems to love it. We sort of bit the bullet Monday, as it was the first day back after the mid-term I just said to his teachers, Rose and Denise that we’d try it. When I handed over to Lisa at 11am the story was that he’d be in until 12.30pm. Poor Lisa, worried enough about the effects of an extra half-hour, was beside herself when he came out with the rest of the kids at 12.30pm. Fred didn’t head for the gate but stayed out playing till 1pm and then headed back in to the classroom. At home I was getting a bit worried too when they hadn’t appeared by 12.40pm. Maybe our fears of it being too much for his brain weren’t as crazy as we’d thought.
The fact was that Fred loved it. They break for a small lunch in the classroom at 12.20, and then head out to play till 1pm. The teachers thought that was what I’d meant when I said he’d stay on. It all seems so silly now but that extra half-hour of playing was throwing his parents in at the deep end, without anyone realising it. However it was just what we needed. I think Rose must have seen the worry on Lisa’s face when she went in to collect him at 1pm as she was very apologetic to me the next morning. As I said there was no need, we were delighted with that push into the extra, extra time. Rose, relieved, laughed and said Fred was watching the clock; he’d known something was up. Denise usually goes for her lunch at noon, taking Fred to the car on her way. But Monday she’d gone off on her own. Freddie kept checking the door, waiting for her to come back to collect him. At the same time though he was getting on with his schoolwork. The poor man had little choice; he does as Denise tells him.
Apparently he loves the break times in the classroom, going around talking to the other kids and having a good laugh so the 12.20 break went well. His social skills are coming on and that was one of the main reason’s Temple Street wanted us to get Fred back at school. That and getting a normal life too for his parents...Obviously the extra time is making Freddie tired but he’ll get used to it. Something I noticed this week was how much he’s improved at his school work. His reading, writing and maths have improved greatly with Fred hardly arguing with us at homework time. He’s still way behind where he should be, but slowly getting there.
On Thursday afternoon Lisa went to Fred’s first parent teacher meeting. For once all was positive, Fred is improving, the other kids love him and he’s proving to be very sociable. That bit we knew already, Fred loves any social gathering. The other great report was how much Fred has brought Jayden out of himself. Lisa and I know how much Jayden means to Fred but apparently our Fred has made Jayden a lot more outgoing, he’s come out of his shell since meeting Freddie. They get great strength from looking out for each other. Such a wonderful thought really.
It’s something I’d noticed recently. Some mornings Fred and Jayden will arrive at the school gate at the same time. They just ease into step together, walk across the yard, Jayden chatting and Fred listening. Even at our house Jayden will chat away to Lisa while Fred will watch a DVD, just happy to know his friend is there. Without knowing it they allow each other to be themselves and that is a true friendship in the making. The first morning that Fred strolled in with Jayden, leaving me at the gate and Denise still in the classroom, really had me in tears. Just a simple every day happening, two little boys on their way to class but only a couple of months ago it would have been unthinkable.
After the horrors of the last few years Lisa and I had to get strong, get Freddie back to normal living. Cathy Madigan has made that her mission and without her we wouldn’t even have begun to try. Even Dr Amre, the man who started all this, has been amazed at Fred’s progress; he said so at the recent big meeting.
The heroes on the ground though have been Blennerville School and Jayden.
Once Fred gets something in his head that is it. It stays there forever or until some shock knocks it out. Usually that shock is one of his parents reaching breaking point and saying something like...
“If you ask about Tara coming over one more time, I’ll lose my life,” that would be the mother.
“If you don’t stop going on about trick or treating or I’ll turn the TV off,” the father.
Then Fred will know he’s gone too far. He’s pushed his obsession with having everything right in his head or realised that everything in his head is ok...Tara is coming over and Halloween is this week. He’ll look at you and say something like...
“Ok, ok I understand, I know I know I’ll stop talking.”
This is the last thing we want him to do, after spending so much time and effort on getting him to talk. To break my heart he’ll phrase it personally...
“Ok, my Dad.”
That ‘my Dad’ gets me every time.
With Halloween he asked when it was, it was being talked about at school and he was excited. This is another great thing about having Fred back at school, his awareness of what’s going on around him.
“Is Halloween tomorrow?” he asked me one day.
“No, Fred, it’s in fifteen days time.”
Explaining the concept of fifteen days time wasn’t as difficult as previous times, another sign of what school has been achieving, getting him to work problems through in his head.
A couple of days later he said...
“Number fifteen is gone and now it’s thirteen, the two have gone?”
So it went in the countdown to Halloween but once he got in the swing of it he was able to work the days out in his head and not ask those cryptic questions.
Which made the fact that he went into a seizure at 6am on Halloween morning even more annoying. The poor little man was so looking forward to the big day and now epilepsy was having its say.
The day before we’d had Jayden over, for some reason the first time of this mid-term break. Fred was only delighted to have him. The two immediately took over the front room, every electronic device we had was turned on. Jayden had the laptop blasting something off YouTube, something else was going on my tablet and he was busy trying to get Ruby’s laptop going as well. Fred meanwhile had himself beside his great friend, under a blanket and getting The Hulk going on his DVD player. The TV was going too.
They were having great fun.
Unfortunately Jayden could only stay for a couple of hours but for that time he stayed close to Fred. He seemed content to just hang out, do his own thing while Fred did the same. At about 4.30pm it was time for Jayden to go home and Lisa took him in the car.
Lisa came back looking upset, as if she’d been crying.
Our man Jayden hadn’t stopped talking about Fred all the way over. Asking lovely questions about Fred’s history, how long he’s had epilepsy, what was he like before the epilepsy, did he have many friends in Dingle. Also, and this really put Lisa over the edge, he spoke of how much he liked coming over, how much he liked being with Freddie and could he come trick or treating with him?
It’s a wonder Lisa didn’t crash with the tears in her eyes.
All that had to be cancelled with that early morning seizure. However though a full blown cluster didn’t really develop. Throughout the morning he had a few frontal lobes, five second or less, maybe four in total. By about 11am he was up to coming downstairs and he even had breakfast, it was sort of a normal day.
Ruby had been away since Monday and unexpectedly she arrived in the door about 2pm. Only on a stopover though. She was on her way back to Ali’s for Halloween but Fred gave her the biggest hug ever when he saw her. After Ruby left again Fred snuggled up to me, had a short snooze but by and large he was unaffected by the morning seizure. Lisa and I were expecting the cluster to kick in at some stage but nothing happened. Fred was even aware that it was Halloween.
Somewhere inside me I found the strength to take him trick or treating. Lisa is usually the brave one, going to the beach or to the market with Fred but this time I took the chance. Fred was in his skeleton suit in a flash and Lisa found me another mask. We are lucky that it is a small estate and our corner only has a few houses, so at least we weren’t going far...
The two of us went next door. Fred rang the doorbell and when Linda slowly opened the door he shoved out the pumpkin basket and asked trick or treat? Linda reacted brilliantly and Fred loved it but kept the basket out. The box of sweets was produced and Fred waited for Linda to fill the basket. I had a cautionary hand on his shoulder, always expecting the worst. Lisa was at our door, doing the same.
After Linda we crossed the road. Heidi’s house was full of young kids and they were excited by the skeleton at their door. Freddie got another bag of sweets and we headed for home, the lights were off in the other houses. Back home Lisa was relieved that the trick or treating had ended with the treat only. Also she has a sweet tooth so the two went through the basket picking their favourites.
Friday morning Fred had a drop seizure when getting dressed. Luckily he was sitting down when he was thrown to the floor and it was all over in seconds. He hasn’t had one of those in a while and of course we thought the cluster was eventually kicking in. But no, nothing followed and we got on with our day, Fred even came on the drive out to collect Ruby.
Maybe we’re all getting a little braver.
On Saturday the Swains’ came over for lunch, passing through on their way home to Canterbury. Fred said he’d be too shy to see them but I asked him to be brave and he said he’d try. Lisa and I spent the morning preparing and I think Fred got air that this was going to be a good time. He was on trial a small bit, a family of five was coming to the house and he was on strict instruction not to revert to childish antics as he often does. I think this has been his default way of trying to fit in, to find a way to get people to like him instead of just being himself.
Bang on 1pm they arrived and Fred went to the door to welcome them. Though nervous he didn’t show it and soon he fitted in as if this was an everyday occurrence. In a way visits are now. People come and come, come and stay or just drop in. Having five adults, full of chat and laughter was great fun, something a bit different for Saturday lunchtime. We all sat around the table, Fred squeezing in an extra bit of quiche and joining in the conversations.
After lunch Fred stuck. He got Mark to come look at his Godzilla collection, I think Fred had sensed he’d found a soft touch in the Dad. After a few minutes I went to see what was happening. Fred had got the whole collection out but more than that he had Mark under a blanket watching YouTube clips with him.
Mission accomplished for Fred.
Later Sam joined them. It was a great sight to see the two grown men, under Fred’s blanket, one either side of Fred and Fred propped up on his pillows. The three watched Godzilla while Freddie gave a running commentary. Sam, a student of Film Studies, was genuinely amazed at Fred’s in-depth knowledge of plot and characters.
As we had all drifted in to the front room it was soon full of chatter. Fred looked at Mark and Sam. Then he looked over at me. Noticing something about the two Dads and the two sons, he made one of his great observations...
“You must have a beard to be a Daddy.”
Later Tara arrived over and she was staying the night.
Fred’s week was complete.
All things considered it was a great one.
Our week began with a call from Dr Amre. No sooner than I’d sat at my desk Monday morning when my phone rang, a Dublin number. In his usual style it was a relaxed, yet business-like call and straight to the point.
They had the surgical consult the previous Thursday and Amre wanted us to come up to discuss the outcome. 10am Wednesday morning, almost exactly two days away. That seemed like an eternity because of what the meeting would entail. What were they going to tell us? What had they decided? What was it going to mean for Freddie?
Lisa was on duty at the school, I thought if I called her she’d probably be beside herself thinking of the potential outcomes. Best to wait till she came home and at least we could share the worries. Ruby was off school, a bad cold but trying to fight it as she had a basketball match in Galway on Thursday. She was downstairs so I went to tell her. I wanted her to have the choice of coming with us or arranging a sleepover for Tuesday night. We were going up Tuesday to be at the hospital for 10am Wednesday. She sensed, I think, that I was beside myself over the meeting but thought it better that she go to school the next day. No point in us dragging Ruby away when she can get on with her life as best as she can. A text to Conor and Cathy was answered with the open doors invitation. The Inchicore home from home would be the perfect place for us to get set for the Wednesday morning meeting.
As soon as Lisa and Fred came home I went to tell them. Funny how in that few seconds before you give someone a momentous piece of news how normal their life seems. You know that their life is going to alter completely in the next few moments but for now you’re almost watching them from afar, getting on with everyday life, as in a TV documentary. For that brief period of time the power you hold is immense.
Lisa was tidying up, settling Fred in back home and caring for her daughter. The true mother. Then I told her about Amre’s call. The look of worry on her face as she thought he’d given me the answer, then the assumption that it was bad news as she realised he hadn’t and then the realisation that we’d have to wait forty-eight hours for one. Lisa went through the gamut of emotions in a matter of seconds.
So for the rest of the day Lisa and I were fairly useless to anyone but the kids. We cooked, cleaned, tidied, bickered, cuddled Fred under the blanket and generally did anything to get through the day. It was nice having Ruby home, to complete the family and give us something else to concentrate on. Monday seemed like the longest day but we got through it and the glass of wine in the evening helped.
Fred had his new costume to occupy himself and the news that we were going on a holiday to Dublin. On Sunday afternoon Freddie and I went on a drive. Recently I’d slipped back into old habits of not doing things with Fred. So when Lisa was going for a run, we went off in the car. At the off-licence I treated myself to a beer, for later, and Fred got a sparkling water. Fred wanted lemonade and I nearly cracked but he settled for the Ballygowan in the end.
Off we drove around Tralee, sharing the water and chatting about what we saw. After a while Fred, recognising the road we were on, asked if we could go to the beach. Again something we hadn’t done for a while. The two of us were laughing and joking along the way, I reproached myself for nothing doing the trip more often.
At the beach the tide was in so we couldn’t find the shells for Mummy. Fred suggested we find another beach but that too was empty of Mummy presents. Back in Fenit I spotted the small shop was open and we stopped to get milk for Lisa. As we walked back out, Fred noticed a display of Halloween decorations. While he looked at it I saw they had skeleton costumes and they had one in Fred’s size. Too good to be true and, to add to the miracle of Fenit, it only cost €5.00, all I had in my pocket.
What a find...
On the way back we found a beach that had shells and lovely flat stones, perfect for Mummy. At home Fred tried on the costume, it fitted perfectly but the mask was truly scary. Like a ski mask it went round his head and seemed to change his appearance completely. Our Fred went to Freddie Kruger in a second. Ruby and I were genuinely disturbed.
The costume was packed in its own bag Tuesday afternoon as we prepared for Dublin. Fred wasn’t going to miss the chance to show it to Conor and Cathy. That and a plaid shirt Lisa had bought him for the journey...
“Look Daddy, I’m just like you!” exclaimed Fred when he tried it on.
In Dublin, Cathy was chatting to us in the kitchen and turned to answer Fred’s call. She jumped with fright as he’d put the costume on, ski mask and all. It was scary, especially in the half-light of evening. Conor was late back and Fred went out to the garden to see if he could spot him and to see if the costume glowed in the dark. Con was genuinely disturbed by what he saw when he came home and Fred was delighted. The gnawing away at our stomachs that the meeting was doing to us was temporarily forgotten in the fun we had Tuesday night.
Thank you Con and Cath.
Wednesday morning and we’re at Temple Street by 9am. Part of the deal was breakfast in Freddie’s favourite cafe, down in the basement. As it was a treat he was allowed have a rasher, hash browns and toast, all washed down with countless cups of water. By about 9.45am Lisa and I just couldn’t settle, so off we set for the third floor. I can’t describe what we were going through, worry, anger, upset, nausea, the heebee geebees and more besides. This was to be the most important meeting of our lives, Fred’s future was to be mapped out and that of the family.
So no pressure Amre.
In Amre’s office there were four chairs. One each for Lisa, me, Amre and Cathy Madigan. A small room, it was once part of the convent and it felt a bit like being back at school. Without the all pervading fear of violence that I had at National School. No, this was with friends, people who cared for us. Lisa began to cry, I wasn’t far behind her, the worry was enormous. Amre and Cathy looked very worried, concerned. They thought something had happened, some tragedy had befallen us.
In a way the tears broke the ice and Amre was straight to the point. There is not to be any surgery, not at the moment. At the surgical consult the opinion was that, though they could see the atrophy on the right of the frontal lobe, they could also see that a small percentage of Fred’s seizures also emanate from the left. Dr Shahwan is of the opinion that these are mirror discharges, reflecting off the right lobe but happen so fast you can’t see their beginning. He may well be right but couldn’t prove it and agreed that without conclusive evidence the risk was too high. If they took out the right frontal lobe but Fred still had seizures, you couldn’t go back in for the left. You get one shot at this type of brain surgery; you have to be 100% certain, all day, every day. If the surgery kicked the right-hand side into being more active we’d end up with a far worse situation than we have now, without options.
Amre has the executive decision when it comes to surgery but he knew the risks were too high.
Before he had explained this in detail and before we had time to take it all in, Amre had an option on the table. In the end it may be a better option than the surgery, mid-term at least. The proposal is to insert a Vagus Nerve Stimulator. This is a battery, inserted under the flesh on the chest and connected to the Vagus nerve in the neck by a thin wire. This battery will send out an electrical pulse that, via the nerve, will calm the discharges of the brain. It is known as the pacemaker for the brain and its success rate is high. It is implanted off, switched on a month later and over a course of six months the battery pulse is increased to a therapeutic level...all done by Dr Amre with a wand connected to his computer. There will also be a bracelet which Fred will wear, that if he is feeling the confusion he can swipe over his chest, either stopping the seizure or lessening its effect.
As Aiden Dunlea said to me, the stuff of Star Trek...
While we were deflated that the ‘cure’ of surgery has been taken away, we didn’t have time to dwell on it by the introduction of the VNS. After questions, not many as Amre had covered most angles, we got up to leave. Fred will stay on medication but he will also stay on the course of getting his life back that the Temple Street team have started. The surgery will be as soon as possible and is just one day in and out the next. It will all be done in Beaumont under the supervision of Temple Street and for now we can’t wait to get started.
There were hugs and kisses for the two. Amre and Cathy have been great; they have turned our lives around in a short space of time.
Yesterday Fred came bounding in the door after school. He was giggling, he was that happy.
“Daddy, I had fun,” he declared, bag of crisps in one hand, sweets in the other.
He had been on his first school outing, a Halloween trip to the scary exhibition at the county museum. As the guest of honour they gave him the top seat on the bus, next to best friend Jayden. Afterwards they’d gone for a stroll in the Town Park. Of course Lisa wasn’t far away but he had the freedom to be with his friends, enjoy himself. Today the two of us went to the cinema, Monster’s University, Fred’s first trip there in years. We loved it and we’re going again.
None of this would have happened without Temple Street.
Monday was one of those days which we hadn’t had for, well, 23 days. After the tough day that he put down on Sunday, Fred was dazed and confused from the minute he rose. Even though the seizures were spread out, he had nine of them all told, from early morning till about midnight. Lisa had given him the Diazepam after number 5 which stopped them for a while but he had another two until she gave him his medicines in the afternoon. Then all was quiet until he was asleep that night and the last two hit about 11pm and at midnight. It’s testament to the man he is that he got up and had breakfast Monday morning, as if it was just another sleepy Monday morning, the type we all have at the beginning of any average week.
Fred dozed his way through Monday and asked to go to bed about 7.30pm, which meant he missed Jeremy Patchman. For some reason Fred got into watching University Challenge with me and picked up Jeremy Paxman as Jeremy Patchman. Fred will ask: who are the good guys? The up team or the down team? So most Monday nights the question will be is Jeremy Patchman on and are we watching? Not this Monday though. When I went to bed about 11pm Fred was awake and his mother was in a deep sleep, no doubt Lisa needed to catch up on her sleep too.
When Fred is in recovery, like he was on Monday, his movements are very slow, deliberate as if his brain is really fighting through the fog. His words are mixed up and he may take an age to form a sentence, so much so that Jeremy Patchman would have fined him 5 points every time he tried to open his mouth. This makes the fact he made it back to school Tuesday even more incredible.
Tuesday the two of us got to school just gone 8.55am. Denise was delighted to see him, Jayden was sitting at his desk smiling and the whole class said “Hi Freddie.” There was a pretty little girl sitting at his desk too who was waving. I think her name is Ali, as Fred was talking about her as the week went on, a new friend. He did well, got lots of homework and even a badge from Denise saying that he was the best ever.
The way he puts up with what happens to him, and bounces back, means Fred is the best ever.
On Tuesday, as we were having breakfast he said he couldn’t go to school as he’d had ‘lots of faints.’ In the end he decided ‘oh ok I’ll go,’ as if he was doing me a favour. In truth I think he likes school, likes the friends he’s making and just the general social scene that is school these days. At break time he’s been playing gentle games with Denise and Jayden, just throwing a ball to each other, taking it easy as he can’t run around. Denise asked Lisa if it was ok if she introduced another game, which of course it was and she came up with a form of shooting hoops. So as the week went on, weather permitting, Fred had a whole line of kids joining in the game, more interaction for him, which is great to see.
Fred was still very sleepy in the mornings and it takes an effort to get him out of bed. Down the stairs he’d come, eyes still half-closed and just about making it to the kitchen table. Jokingly I offered him a cup of coffee ‘cos he looked a bit how I feel before my morning dose. In a few minutes he’d be sitting up though, eating his new found favourite breakfast. A couple of weeks ago I bought a big jar of crunchy, no palm oil, no added nothing, peanut butter. It’s a craving I get from time to time and if I see a good jar when I’m in the mood, I’ll buy it. Fred asked me one day what was in the jar. I told him and he asked if he could try it. He loved it and ever since Fred’s breakfast has been a slice of Mummy’s homemade brown bread, spread with peanut butter and scrambled egg on top. Or omelette or boiled egg, whatever type of egg we’re having that morning. Wordlessly Fred will munch through it, wash it all down with a glass of water before getting ready for school. This weekend we had baked beans as a luxury extra and they went on top of the egg and peanut butter...
“Hmm, delicious,” were the only words uttered over breakfast.
Fred can at times obsess about the one thing, we call it one of his figaries or he’s having a figary about something. This week it was Halloween. Lisa and I are delighted that he’s now aware of Halloween, is getting the excitement of it from the other kids and from it being featured in school work. Unfortunately when he was in the haze of constant seizures and not mixing with people his own age, Fred wasn’t picking up on these calendar events. Now this last while he’s been asking how long is it to Halloween and when will it be Halloween. I tried explaining the amount of days and he grasped the idea of it but wasn’t happy to have to wait so long...
“Fifteen days!” he exclaimed as we drove to school one morning recently, “I can’t wait that long.”
After I explained why it was fifteen days came the real figary...he needed a costume. After much debate with his mother it had to be a skeleton costume. Every day he was asking for the skeleton costume, from morning to night it was the skeleton costume and how he had to have it. So on Thursday morning as he set off for school, Lisa was taking him I was doing the Ruby run, the promise was made that I’d collect him and we’d buy the costume. The excitement on his face when he saw me at the gate was just lovely to see and Denise said that all he could talk about all morning was Daddy collecting him. That single minded way of his will be a great problem solving tool in years to come.
Off we set. The only place I could think of that had easy parking and would have Halloween stuff was on the other side of town. When we came to the turn-off to our house Fred was silent and then he said...
“No, don’t go up there...”
“Where do you want to go?”
“That way,” he pointed, “to get my skeleton costume.”
At the store we found skeleton costumes but unfortunately the only size was aged 5 – 6. I searched all over, just in case one had fallen down the back, but no such luck. The last thing I wanted to do was leave the little man down so we bought it and lots of Halloween decorations. Fred carried them to the counter, I paid for them and off we set back home.
At home I explained to Lisa that it was easier to get the small costume than to have Fred go on and on about getting one for the next few days. With any luck a right sized one will turn up and we’d get it for the big night. Fred showed Mummy his decorations and told her how they’d have to put them up to make the house scary.
As there was a second-hand clothes drive at the school that day, a fund raiser, Lisa went to pack some black bags while Fred and I looked at our purchases.
Fred had to try on the skeleton costume.
Kate Moss in her prime wouldn’t have squeezed into this one but Fred was determined. The two of us were laughing uncontrollably as we rolled the latex up and pulled the Velcro tabs together. The little man was doubled up by the constricting force or the costume. It didn’t leave much to the imagination either. Funnily enough the mask fitted perfectly.
Up the stairs we went to show his Mum. She nearly collapsed from laughing and Fred got a bit self conscious at us laughing so much but we reassured him that he looked great. Back downstairs Fred was delighted walking around, mask on growling in the mirror. After a few minutes playing I went to get his lunch and a bit later Fred called me...
“Can you get this off?”
The costume was cutting in to his skin around his shoulders. Laughing the two of us slowly rolled it off him and Fred suddenly doubled back to normal size.
“Don’t worry,” I said, “we’ll get a bigger one before Halloween.”
In the afternoon Fred was going on that he needed a bag to carry all the loot from trick or treating. Before he could start on another figary Lisa bought him a Halloween bucket when she was out and Fred was delighted.
The set-up was complete.
That night I was going to bed about 11pm. The others had all gone before me and as I was tidying-up I took in how the house was fully decorated in Halloween gear. Rubber bats, bunting, scary things hanging in the window and even Halloween tinsel over the fire.
On the floor was the skeleton costume, laid out in full, the mask at the head and beside it was Fred’s trick or treat bucket.
Fred had gotten his way; subtly the house had been turned into a Halloween Cave.
That single minded way of his does solve all problems.
Well it’s 6.40 in the AM and Fred just had his first seizure in twenty-three days. A new personal best for the little man, which of course is great but I think we’ve been waiting for this moment for a least a week. We knew we’d get a boost once Dr Shahwan put up his dose of Rivitrol, but a break of this length was unexpected. As the seizure-free days had been slipping before the increase, going back to anything like a twelve or fourteen day interval was what we’d been hoping to achieve.
So all in all 23 days ain’t bad.
Today had started as normal, the 6AM rise for medicines. Lisa had come in to give them, frowned that Freddie had drank all the water overnight and went off to refill the glass. The glass of water is a source of amusement that only a couple who’ve been together for a while could find. Sometimes Fred wakes not long after going to sleep, or pretending to go to sleep, saying he’s thirsty. He’s a good man for pretending to go to sleep with his mother, then waking when I come up to take over for the rest of the night. As soon as Lisa leaves the room he’ll start to giggle, as he’s been trying to keep it in as she goes. No doubt he will have been dozing; he doesn’t want to get in trouble with his Mum. None of us do. As soon as he hears my voice he stirs, I see it out of the corner of my eye, and then when the door closes he’ll rise up looking for a story.
Most times I read the story, it would be a hard heart that didn’t weaken when that little face looks at you. Other times I try to be tough, he should really be asleep and I don’t want to encourage him not going to sleep on time. But more often than not it’s a quick read of ‘The Gruffalo’ and he’s off to sleep with a ‘night, my Dad.’ Last night it was ‘The Elephant and the Bad Baby’ an old story but he loves it. Sometimes he’ll ask for a drink before he goes off to sleep. For a while, when he first started the ‘I’m thirsty’ routine there wouldn’t be a glass beside the bed. As Lisa would be downstairs, I’d text her to bring one up on her way to bed. A couple of times she’d already be gone to bed and would refuse to get up. So Fred and I would keep texting till we’d hear the footsteps on the stairs, Lisa giving out about why she had to get up and with a few choice words lighting up the night air...
“I don’t understand why I have to get the glass of water AND you should be asleep,” Lisa would say coming into the room.
Fred, enjoying the fun would reply...
“Well I’m only a little boy and my Daddy is minding me.”
“Feck your father,” she’d say smiling, as she’d turn to leave the room.
“You can’t talk like that about my Daddy!” would be the retort.
Oh the simple fun.
After a couple of these incidents Lisa started leaving a full glass beside the bed but last night Fred had finished it off before sleeping. So I got the frown when Mummy came down to give the medicines. Thirty minutes later I had to call her again though, the seizure had broken through and we had to start the routine we’ve thankfully avoided for the last twenty-three days.
Fred began the week with a couple of tiny frontal-lobe seizures. On Sunday night he had two, just about an hour after going to sleep. So tiny that I wasn’t even sure if he’d had them or not and he had another one just before medicine time on Monday morning. We kept him home from school, expecting a day of activity but nothing happened. The only activity was Fred putting his full milking-it act into full swing. The duvet on the couch for full comfort, Mummy running around looking after him and Godzilla on the go on the TV.
He didn’t have it all his own way though, and Lisa surprised him with home work in the afternoon. The reaction was as expected but he knuckled down to it and got it done. Like me he’s realizing that Lisa won’t back down easily and it’s best all round if you just do it. Standing at the kitchen door I was pleased with how much he’s come on in the time he’s been at Blennerville. Reading, writing, sums they have all improved. Of course he’s way behind where he should be and when we think of that it’s very upsetting but we can only deal with what we have at the moment.
On Tuesday morning he slipped in a frontal lobe about 5AM and stayed home again. Fred didn’t get away with the easy time he’d had the day before but we got through it ok. During the afternoon I went into the front room to a very sad man lying out on the couch...
“Yes,” I said sitting down beside him.
“I’m sick of being sick. Sick of the fainting. I wish I didn’t have the fainting anymore,” the sad little face looking up at me, the eyes filled with tears.
We cuddled and I tried to explain how the doctors were working on fixing the fainting. It must be so hard on the little man to have his life taken over by the epilepsy. His whole life is restricted, as it’s so unpredictable, and this has been going on for over four years now. The fact that he deals with it so well, is still a happy, wonderful little man speaks volumes for his character.
On Thursday I watched him as he came out for break time at school. Fred looked sad, as if something was bothering him. Denise was close to him, as always, and I could see her talking to him, checking him as they walked. After a few minutes they turned and went back inside. I told myself it could be one of a hundred things on his mind and not to worry. If Fred had been playing at something before the break he may have wanted to stay at it and not go outside. Freddie is very single minded like that.
After the break all the kids went back in. Ed Galvin had stopped for a chat and he was filling me in on the saga of the returned chair, when Denise came out. Fred had a headache and wanted to go home. Without waiting I shot in and took him out. He seemed ok but headaches can be sign that something is on its way. Back home I gave him some painkillers and he was fine by the time Lisa came home with Ruby. Lisa mentioned that he seemed ok and did I think he was figuring out ways of getting off school. We don’t know but can’t take any risks though. While we wish he wasn’t and have to trust him, what normal little boy doesn’t like a reason to skip school from time to time? Certainly I wasn’t adverse to the odd ‘sore tummy’ in my school days...
On Friday Fred was home again. The school were on an outing to the Aquadome, the local swimming centre, but swimming is just too risky for him. Instead of Freddie being the only boy who goes home instead of getting on the bus, we decided to keep him away for the day. A bit of a disrupted week but that’s Fred’s life at the moment. They have a day out for Halloween which he will go on, all things being equal.
On Friday afternoon Fred was caught for homework again...Lisa had the books ready at the kitchen table.
“Why do I have to do homework every day?” he asked.
“Because it’s important,” I answered and headed for the stairs so as not to distract them.
“Nice going Mum,” I heard as the kitchen door was being closed.
Poor Mum, she gets all the grief.
Friday was Referendum day and Fred had a day off school. Not to celebrate any proposed change to the Constitution but because his school was being used as a polling station. It’s a quaint tradition; using National Schools as polling stations and I think it has an indirect affect of making us aware of voting from an early age. Anyway, as Fred had the day off, the two of us had a lie-in while Lisa took Ruby to school. Not that the lie-in went far past 8am, I got up first, leaving Fred to take advantage of the quiet but he was down after me in a matter of minutes. He’s so silent in the morning, he gave me a fright when I turned round to see a little man rubbing his eyes and yawning by the fridge door. As Mummy wasn’t around we sneaked in a rasher for the breakfast, there was a buckshee one just asking to be eaten. When I put it in the pan, Fred said... “Don’t tell Mummy.”
Friday was also day 14 of the current cycle. Recently the cycle had been dropping, from a high of 18 days to a regular one of 16 days; it had dropped to only 11 days last time round. Over the last week and especially on Monday, Fred was getting bouts of confusion and the twitching had returned. The last thing we wanted was for him to slip back to a pre-Christmas like last year, when he was seizing every couple of days and twitching for the days in between. On Monday Lisa had to take him home from school, not long after he’d gone in, as he was twitching and a bit confused. Denise was being careful, that’s why we trust her with our little boy. At home, Lisa rang Temple Street and the word came back on Tuesday to up his evening dose of Rivitrol by half a tablet.
So the dose went up and Fred was asleep by 8.30pm Tuesday night. The next morning we couldn’t rouse him, he just wasn’t getting up. We gave him Wednesday off, he slept a lot but by the time I came home about 10.30am he was up watching Godzilla. On Thursday, he was up and back to school, certainly not twitching but a bit groggy, only to be expected. Now we’re on day 16, probably helped by the boost from Tuesday’s increase but if it settles back to a 14-day cycle again, we’ll be happy.
On Thursday as I took him over to school Fred started telling me about all the monsters, in great detail…
“The first one is the smog monster,” he said and proceeded to go into great detail about what the smog monster looks like and what he does. By the time we were at the end of the road he’d moved onto Gamerah, again in great detail. That was as much he got in by the school gate. Crossing the road at the traffic lights, I saw Denise coming to the gate and I could see that Fred was distracted by thinking of the monsters. He’d spent Wednesday looking at old clips on YouTube detailing the Godzilla cast of characters and they obviously were still filling his head.
“Don’t frighten Denise with talk of monsters,” I said as I handed him over.
“Oh,” Denise said, “on Tuesday we opened his maths book and I said look at the numbers Fred. He did but all he could talk of was monsters.”
So the day spent on YouTube wasn’t just out of the blue, Fred’s brain had already been thinking of the monsters he’d neglected recently in favour of the dinosaurs. Fred gets himself preoccupied and the one subject will dominate his brain for days. Fair dues to Denise as she knows this by now and probably rode out the storm before getting him focused on the maths. If I remember correctly, there was math’s homework Tuesday. As an old friend of mine would say “she’s tough that one.” You need to be the toughest of the tough so as not to be wrapped around Fred’s finger.
He certainly has his parents wrapped.
During the week I met Nurse Marie, thankfully we don’t see her as much at her day/ night job anymore. If anyone got us through those tough times a couple of years back, it was Marie. The smile that welcomed us to the Cashel ward, that taking charge of everything and keeping the doctors on their toes are memories that will never leave us. It was a standing joke between us and Marie, that Fred’s bad nights were connected with her being on duty. The truth was we were so relieved when we’d hear that Marie was waiting for us on the ward.
“I see herself out running the mornings when I’m on my way to work,” she said, when we met in Garvey’s, “I know when I see her out things must be ok.”
Brilliant diagnosis and Marie is perfectly correct. If Freddie isn’t ok you won’t see Lisa out. If Lisa ever needed an incentive to go running, keeping our Marie from worrying about Fred is as good as any.
In a lot of sitcoms you used to see a kid in the background with his hand stuck in a tea-pot or milk bottle, if one of the characters had to go to the doctors. An easy joke but it always got a laugh. On Wednesday evening I heard Freddie struggle up the stairs to my office. In he came with a large poster tube stuck to his arm...
“I’m an old man,” he said in a frail voice, pretending the tube was a walking stick. He burst into laughter as I did. Off he went on his old man way. It was probably his impression of the Ed Asner character in UP. As he went downstairs I waited for the thump, thump and bump as he fell to break his two legs, but it never happened.
When I did come down to make dinner I heard some struggling coming from the bathroom...
“Can you help me?”
Not knowing what I’d find, I went in. Fred was sitting on the toilet cover pulling at the cardboard tube. The tube was covering most of his arm. What little was exposed from the shoulder down was a deep red and much larger than it should be...
With Fred holding onto the toilet and me pulling we managed to get it off, exposing a shrivelled white arm underneath.
If there’s trouble Fred will find it.
Yesterday was a day Fred and I spent largely on our own. Lisa took Ruby off to Dingle; our darling daughter was on a sleepover at Ali’s and couldn’t go on the bus. It was a good opportunity for Lisa to get away, catch up with Fiona and a few others.
They went just before lunch. The Verling men took the chance to indulge ourselves; Fred sat down to lunch and King Kong while I read the paper over a sandwich. Just the men doing their own thing, bothering no-one. The bliss lasted about an hour before Fred had the idea of the time capsule. He’d seen a time capsule being buried in one of his programs and thought it a good idea. As it turns out Lisa had uncovered a square trunk, cleaned it up and put it in our room as a bedside table. Perfect for use as a time capsule, it could be sealed and with the big lamp on top of it, not opened again.
So we set off finding things to put in it.
I gathered some magazines, newspapers and a copy of Mark Swain’s Long Road, Hard Lessons. Fred went downstairs to find some toys to be locked away. In the front-room I found him wandering around, not doing anything, just staring and not very responsive. He didn’t have the confusion but he certainly wasn’t firing on all cylinders. In a flash I made us a little bed on the couch and Fred cuddled up for a snooze, handing me his glasses as he yawned for the umpteenth time.
As I followed the football Fred tossed and turned. After about twenty minutes he announced the he was fine and wanted to watch a DVD. Surprisingly he was fine, far better than earlier, whatever it was had passed and left him a more alert little man.
Thus we stayed till dinner-time and a couple of hours later Lisa came home, looking great flowing a day away at the Dingle Food Festival. After Lisa filled us in on her meetings and any gossip, she asked about our day...
“What did you have for dinner Fred?” an air of suspicion in her voice as she knows Daddy will add extra if Mummy isn’t around to police the portions or the ingredients.
“And what was in the pasta?”
“Oh mushrooms, cream, vegetables, cheese,”
“And what else?”
Fred thought for a while.
“Just the chicken worms,” he eventually answered.
Chicken worms...Fred couldn’t remember prawns, so he came up one of his descriptions instead.
Probably not the most appetising of terms but it didn’t stop him looking for more.
Not that there was any, I was ahead of him on that one.
This week has been one of breaks with the past for Fred. For a while now, maybe every couple of months, Fred will ask can he have Colm or Vincent or Thomas over. These are names from at least 3 years ago when Fred was a regular at Lispole School. Sometimes he’ll get angry and remember something Vincent would have done. They had a fight one day over a shoe and Fred brought that up a couple of times this week, something that happened maybe 5 years ago. He’s not one to harbour a grievance is our Fred.
So at times this week Fred would leave out a deep sigh and say something like:
“I miss my friends,” or “I wish I could have my friend Thomas over,” or “that Vincent he makes me mad.” Now why he happens to think of these old friends we don’t know but it must be very difficult for him to come to terms with losing their friendship. But miss them he does. Maybe it’s being in a different school that has reminded him of them, who knows. But this week we had to lay it out that those friends are in the past, for now. Even if Fred remembers them chances are that they may not remember him. In fact Colm has lived in the US for last few years and Thomas left Lispole School before Fred did.
It was difficult having to tell him that those friends are gone and that he should now concentrate on the new ones he’s made in Blennerville. It was like telling a refugee that his past life was over and to forget it ever happened.
There were a lot of tears and sadness. To try overcoming this Lisa and I would point out that he’s making new friends. Jayden was mentioned a lot and Fred did say that Jayden was his best friend. To top it all I think Fred is also thinking of the carefree days he had with those old friends, before epilepsy took over his life. He’s remembering the good old days. It’s hard to tell a ten year old that he has to move on, especially one who’s been through as much as our Fred. But being the stoic that he is, he understood but the sadness is still there. The problem too is that Jayden has his other friends and for the time being Fred can’t go do what they all do together.
Very tough on the little man.
The second thing had to say goodbye to this week were his milk teeth. Fred takes his time with things and has been very slow in shedding those first teeth. Now at ten his adult teeth are coming through and need help getting space in his mouth. On Thursday Lisa took Fred to the dentist to pull the ones that needed to go. Before he went Fred gave his teeth a good washing...
“Did you wash your teeth?” I asked.
“Yes Dad,” he said proudly opening his mouth to show me, “and I dried them.”
“Yes, with the towel, they were all wet.”
Only our Fred would think of that one.
At the dentist Fred had some of his lower front teeth pulled. When he came back he showed me the holes left behind. Apparently he didn’t flinch at the extractions or when the needle went into his gums. Amazing how things have changed. Then again this is the man who had me pull out a tooth once that was dangling from his top gum, and thanked me for doing it.
That night though, just as he and Lisa went up to bed, I heard a big scream. Suddenly someone came running across the landing and down the stairs at the rate of knots. Fred burst into the front room, out of breath and his heart beating ten to the dozen. At the very least I though Dracula must have appeared at the window and Lisa was fighting him off with gloves of garlic. After he got his breath back Fred blurted out that there was a spider in the bed.
The man can look a dentist in the eye and laugh but runs like the clappers at the sight of a spider.
Yesterday Ed Galvin had me on one his magical mystery tours and I left the house at about 9.15am. As I usually go to the market on Saturday mornings to stock up on fruit and veg Lisa had to do it this week. It was great. Fred went with her, they went to all the stalls filling the bags and it was something that a few months ago we wouldn’t have dreamt of doing. He was on his best behaviour, helping Mummy and doing normal things any ten year old would.
Afterwards the two had to drive out to Dingle to collect Ruby. Fred was only too happy to get out and they met Lisa’s friend Fiona into the bargain. Now, on a normal weekend Lisa may have done that trip on her own and I would have gone to the market on my own. The way things transpired Fred got out and about, which can only be good for him.
When I returned around 6.30pm I got one of Fred’s big, dramatic welcome homes. He clings to you for dear life and follows you around so as to remind himself of what you look like. Phrases like “I missed you so much” or “you were gone forever” are used as is “please don’t go away again.” It’s very flattering and makes coming home even more special.
Sometimes he’ll tell tales of fights between himself and Mummy but none such yesterday. He did tell me though that he’d had confusion during the morning while I was away. The fact he didn’t tell Lisa is upsetting as she would need to know so as to minimize the impact of a seizure, the last thing she would want is Fred hitting the floor at the market.
As I said to Lisa he probably didn’t want anything to interfere with his day. He just wanted a normal day with his Mum, just like any ten year old boy would.
Just a normal life, that’s what our Fred wants, with friends around and plenty of fun.
Someday soon he’ll get it, someday soon.