Today is the 14th, less than two weeks now to the big day and Fred can’t wait. Since the beginning of the month we’ve been counting down the days; marking an X on the calendar for each passing date and tearing off the doors on the Advent one. As usual we’ve been dealing with Fred’s ‘almost there’ as opposed to his ‘nearly there.’ For Fred almost there is far preferable to nearly there, for whatever reason we do not know, but it’s just one of his figaries. Now we are on day 14 he can see light at the end of the tunnel but still each morning is greeted by the same big sigh and the question that has bothered kids for generations:
“I’m fed up with this waiting, why is Christmas taking so long?”
This week at school Fred had choir practice for the Christmas caroling session in the church. As usual for Fred the excitement was in the bus trip over, not the actual singing, which with the continual practicing would get anyone down. On Friday when I went to collect him he told me he was sick of the waiting in the church and had got too tired. Too tired is one of Fred’s phrases for bored. Can’t say I blame him either; it takes a certain level of dedication to put in the hours at getting a carol recital just right, no doubt Caruso said the same at times.
On the way home on Thursday I asked him where he went on the bus…
“Oh you know.”
“No, I don’t,” I replied.
“The big place, where the people get married,” he said.
“The church?” I asked.
“Yes, that place.”
The actual recital is on Tuesday night, whether Fred will want to go and wait around for a couple of hours is unlikely, especially when he could be at home cuddled up under a blanket.
Yesterday we had a visit from Fred’s Aunty Ella and his cousin Ben. As always, Fred loves visitors and was looking forward to it all morning. When the visitors arrived with presents for him and Ruby he was doubly delighted; though not so happy when he realized that they were Christmas presents and there was more waiting involved until he could open them. All evening he had his present in front of him, looking at it, wishing he could open it, wishing for Christmas to come, again. More waiting; no wonder he’s sick and tired of all the waiting.
Ben was introduced to Godzilla and the other characters from Fred’s movies. For Fred it was great to have someone else to explain the plots and subplots and Ben showed interest which was great for Fred. The two of them, in typical Fred style, were wrapped up in blankets, keeping warm while Godzilla saved the world. Whether Ben will start collecting the action figures is another thing though.
After lunch we went to get the Christmas tree. This is something Fred has been asking about since the beginning of the month. Now the time had eventually arrived and he was delighted. Out to the car he went, holding Ben’s hand and not a look to his Daddy or Mother, very fickle these kids.
At the Christmas tree market Fred was overawed with all the trees, the different shapes and sizes, lots of holly and all the people. It had a real taste of Christmas about it and for us all, Fred most of all, it marked the beginning of Christmas. He chose the tree with his mother, Ella bought some berried holly and Fred stuck close the Ben throughout. Towards the end of the buying I think he got a bit overcome with all the bustle and went back to the car, again holding Ben’s hand. The tree was put aside for collection today and the two of us will go up later after making room in the car.
When Ruby comes home we can decorate the tree.
Then Christmas will have begun.
Fred is sitting up in a sun drenched bed playing with an old tool box of mine, looking very industrious as he takes out the screwdrivers testing them against each other. Beside him his mother is lapping up the winter rays of this early morning sun, reading her kindle and enjoying the peace. After a tough couple of days socializing in Dublin she needs the rest and Fred needs to be close to his Mum. They may fight like cats and dogs but he misses her when she goes away, as Lisa does her precious Fred.
This is the end of what has been a full week. Fred had bad confusion on Tuesday night and we kept him home from school Wednesday morning. It was day twenty and we thought it better to be safe than sorry. He slept a lot of the morning, though he came on the journey to drop Lisa to work. In the early afternoon he fell asleep, had a couple of frontal lobes before a full seizure broke through about 4pm. All was fine; he cuddled into me and was in a deep sleep by the time Lisa came home about 5.15pm. He woke about 7pm, had some dinner and came to bed with me about 10pm. All evening Lisa and I were watching him, waiting for the second seizure but none happened. When he was slipping off to sleep I fully expected its arrival but no, he slept soundly. All day Thursday I waited for it but no sign and Fred was dispatched back to school Friday morning, much to his displeasure. He had a great time though, despite his misgivings and the weekend arrived without a hitch.
That seems to be the way with Fred and his epilepsy. When you least expect it he gets an awful kicking and the times you know something is going to happen he gets away lightly. Each time, no matter what the severity, Fred will bounce back, come through smiling and get on with his life. Though he has been tired and has slept a lot it was great to get him back at school on Friday, finishing the week as f nothing had happened.
On Sunday last Fred had asked to go to the Grand Hotel for lunch. The two of us had been there before and he wanted to show the ladies of the house its splendour. We parked outside and Fred led the way in, pushing open the well polished front doors and through to the bar. Though it was packed we found two tables free and pushed them both together. Fred in his element waited for the waitress to come back after she gave us the menus. There really wasn’t a need for the menu as Fred knew exactly what he wanted...
“Ah excuse me,” he said when she came back with her order pad.
The waitress readied her pencil.
“I’ll have a ham, lettuce and mayonnaise sandwich on white bread, please,” not forgetting his manners when ordering. For a drink he had a hot chocolate.
We ate our fill, drank our drinks and had a lovely old time of it. Afterwards the ladies left us to finish up and pay while they went to browse with the other Sunday shoppers. Fred and I decided not to be outdone and went over to Eason’s for a peek at the magazines and to the trade-in store that sells all things electrical. He loves looking at the DVDs in there, hiding the ones he doesn’t already have when I tell him we’re not buying. The idea is to come back another time and buy up the hidden ones, that time when he eventually wears me down with his pestering. All week he asked me if we were going to the “phone shop” as he called it, getting the same answer each time...”not today.” This morning he announced that we were going back this afternoon, another battle looms.
Waiting isn’t one of Fred’s favourite occupations; usually he’ll huff and sigh until either one of us gives in or threatens the end of the world if he doesn’t stop asking. So it is with Christmas. Fred just can’t get over the amount of days he has to wait or the length of time it will take for Santa to arrive. Every morning we mark the days on the calendar, at least that way he has something quantifiable to see but the waiting is still beyond his ken...
“I’m sick of all this waiting,” he said one day, followed by, “why is Santa taking so long? Hasn’t he made my presents already?”
Can’t argue with those questions really but waiting for Christmas is the highlight of Christmas, especially as a kid. When we collected Ruby from school Tuesday afternoon we gave her friend Sarah a lift home too. Fred is mad about Sarah and was delighted to see her get into the car. On top of seeing her she was also carrying her Christmas wreaths and candles which she’s selling to parents, teachers and friends. Seeing all the Christmas stuff was doubly exciting and Fred couldn’t get over Sarah having it all. If she wasn’t the best thing since sliced bread already she certainly was for him on Tuesday evening. Christmas for Fred seemed at little bit more real as if it had arrived or at least wasn’t that far away anymore.
That morning though Christmas had been the last thing on his mind. Coming down the stairs for breakfast Fred still had his eyes half-closed and knocked over one of his mother’s glass cabinets in the hallway. Lisa in the kitchen, rushed out to see what the commotion was and once she saw Fred was ok but her cabinet was on its face the fuck sakes began. As I lifted it the door fell off; though the glass wasn’t broken the hinges had cracked the wood. Fred tried to make it up to his mother but it was one of those events he was better off just leaving go, there wasn’t any coming back from that happening, not immediately. No amount of saying ‘but I love you’ was going to save him, not on that one.
Luckily I was able to fix it, amazing what some superglue from Small Benner’s the Mall Tralee will achieve in a few minutes. Though I did put the hinges on the wrong way around at first, all came together eventually and the cabinet was back in situ by early evening.
Now it is Sunday lunchtime. The low winter sun is still shining and Fred wants a trip to the beach. Not a bad way to finish the first weekend in December with Christmas less than twenty days away.
All that waiting will soon come to an end for Fred.
Santa better not let him down.
It is such a beautiful clear wintry Sunday morning here in Ballyard. As Lisa said this morning ‘it’s one of those days that you are glad to be alive.’ My answer was that I’m glad to be alive every day but I know where she was coming from with the sentiment. It’s one of those days where you can forget all your troubles for a while; pack em up in your old kit bag and smile boys smile.
In fact it has been a trouble free week. Fred put down another good five days at school; no confusion or sick tummy as an excuse to come home. Though come Friday morning it was difficult to get him out of the bed and he came out with one of those difficult to answer in a good way questions...
“But why do I have to go to school Dad?” he asked, rubbing the sleep from his eyes.
“Because you have to,” was all I could think to say.
There wasn’t any gain in pointing out the lifelong blessing of a good education at that hour of a wintry morning so I went with bribery...
“If you go this morning you won’t have to go tomorrow,” I said, “and you can stay up late tonight.”
“Ok my Dad,” he said stepping off the last stair before putting on his slippers and shuffling to the kitchen.
I watched him go. Our beautiful boy who’ll be twelve in January, walking tall and proud into the kitchen for his breakfast. The struggles he’s had and will have would daunt anyone but he’s taken them on the chin and got on with life.
On Wednesday Fred announced he needed a haircut and Lisa took him to the barbers Thursday afternoon. I wouldn’t dare, as I can’t even get my own hair cut, going completely tongue tied when asked what style I want. For the last eight years I’ve being going to the same hairdresser and each time I just say “whatever you think, you know best.” In fairness to Magda she is the hairdresser and always does a great job, leaving me to browse the latest fashion magazines, while the women chat around me. If I took Fred to a barber he’d come home with a pudding bowl cut or something worse. Thankfully the barber here in Tralee did a great job and made our man look beautiful. Later on I saw him looking in the mirror, checking the style and swishing the hair to the side. He’s growing up all right.
During the summer Fred and I used to look at the stars before going to bed. This habit dropped off as the cold nights came in. On Thursday night Fred announced he was going outside for a walk. On went the jacket, his boots and he found a torch in the drawer. It was about 8 O’clock and I was settled reading a magazine, in no mood for a walk. Off he went and came back about ten minutes later. You feel the cold off him but he didn’t seem to mind.
“I saw the stars and the half moon,” he said.
“Where did you go?”
“Oh just here and there.”
Santa might be bringing Fred a telescope.
The arrival of Santa or the waiting for the arrival of Santa is driving Fred crazy.
“Why is Santa taking so long?” he said in bed one night.
“That’s the joy of Christmas,” I said.
“Well he’s driving me mad.”
Between school and waiting for Christmas it’s been a tough week for Fred, though one of the best for us.Through it all he’s been flying through his homework, impressing his mother with his reading and despite misgivings having a great time with Denise, Ms O’Se and Ms O’Connor; all three commenting on how much he has come on lately. ‘The Science Man’ came on Tuesday and they had a great time setting off rockets in the yard, whatever actually was going on I never did discover.
Waiting for Santa though and firing off rockets at school.
Now that’s a proper childhood.
Recently we’ve seen great improvements in Fred. It’s probably that the cumulative effect has become more noticeable than it been any sudden change in him. Habit has played a big part, the daily routine, not letting him slide into bad practice and encouragement. Not long after Ruby was born someone said to me that encouragement is the greatest thing you can do for a child. Certainly with Fred we can see the effects; the fact that Ruby is wonderful may be down in part to our encouragement, who knows?
Not too long ago I couldn’t have let Fred alone in my office. Every drawer would have been emptied, every pen left uncapped and every piece of paper scribbled or drawn on. Last week though I did leave him. Fred had come up to see what I was doing, it was early evening and I think he wanted to spend time with his Dad rather than the girls. While I worked he took things out and rummaged about. After I’d finished I said that I was going back downstairs...
“I’m staying here,” Fred said.
“Can I trust you not to take out anymore stuff and to tidy up afterwards?” I asked “and not to go near that bottom drawer?
“Yes my Dad,” he answered, almost annoyed at me.
“I trust you.”
“Yes my Dad.”
Later he came down and watched a program before going up to bed. A couple of hours later I went up to check the room. Everything was as tidy as I would have left it myself. Things were put back in the right drawers and the bottom drawer looked untouched. I was genuinely surprised, delighted and even a little emotional at such a demonstrable sign Fred’s improvement. In bed I told him how proud I was of him and he just said:
“I know, now leave me alone I’m trying to sleep.”
In all of his activities there are improvements. Fred’s schoolwork is coming on, though after seizures he slips back a bit which is a real curse. On Monday the school called saying that Fred was unwell. I went over to asses him. Ms O’Connor and Denise were a bit sceptical but we all know not to take a chance which is why they called. Fred looked a bit pale but not too bad. Maybe because the cluster had been comparatively mild that it hadn’t cleared fully. To emphasise the point Fred moaned and groaned while moving closer to the door. To be safe I took him home.
At home he went to bed and slept for a few hours. He woke about 2pm looking better and even sat up to have a chicken sandwich in bed. Bliss. To add to it he got the laptop and watched a few Ben 10 episodes while I worked at my desk. Later when Ruby came home she snuggled up to him for a while and by dinner time Fred declared:
“I think I’m better now.”
The next morning he went off to school and performed to his best. All the teachers were delighted with him and at homehe flew though his homework, impressing his mother on the way. Sometimes we just have to go with it, listen to Fred and let him have his time when needed. A different type of encouragement.
By Friday Fred was fed up with school but went because it was the last day. There was also a cake sale as a fund raiser and Lisa was up early baking. At about 10am I went over with the Tupperware’s of cream and chocolate buns. Not cupcakes, these are proper buns that taste delicious. Just as I came in the gate Fred walked around the corner with Ms O’Se and a big smile broke on his face when he saw me with the cakes. With the smile getting bigger he took the Tupperware and walked in with to the cake sale.
“Oh excuse me these are from my Mummy,” he said struggling with the boxes, Ms O’Se and Denise standing watchfully over him.
Afterwards I asked him how he got on.
“Great,” he beamed, “I had four cakes.”
Yesterday I was to go away and Friday evening I asked Fred take charge, that I trusted him to be good and not to be fighting with his Mum or his sister.
When leaving in the morning I said it again, adding a quote from Voltaire...
“With great power comes great responsibility,”
He nodded in assent.
I got home about 8pm and Fred ran out to greet me.
“I was great at being in charge,” he said after giving me a big hug.
Now we just have to hope he doesn’t get too power hungry.
Fred and I are just in from bird watching. There is a spot not far from home, next to the Blennerville Windmill which is ideal. In the car park is a grassy bank, where we climbed and took up our positions. We had a pair of my father’s binoculars which did the job perfectly. It took Fred a few tries but eventually he figured where to look and his excitement of seeing a bird on the wing was great. In my pocket I had a book of birds but luckily I was able to identify the ones we saw from sight alone. Beautiful Brent geese, an egret, a heron, some Terns and a lot of crows. During the week I’d seen starlings doing their air display but none of that today.
After about a quarter of an hour Fred got the confusion so we packed up and headed home. I’d forgotten the magnet, which was silly of me in the circumstances. Back home I gave Fred a few swipes and he was as right as rain in no time.
“I’ll just have a lie down and watch The Cat in the Hat,” he said, pulling a blanket over himself.
Ten minutes into the movie and we got a call from the girls to come and collect them. Before going bird-watching Fred and I had dropped them at the gym, now they were finished. Off we drove and picked them up. All the way there and back Fred was talking of his trip to New York. Yesterday evening he overheard Lisa and Ruby talking about a fantasy holiday to the Big Apple. Now he has it in his head that we are going but the deal is that we have to wait until he gets better. That and winning the Lotto. It’s tough on him and the family that we can’t do such trips but yet one day we will. A big decision made was that we were going on the plane rather than a boat and we were going to stay in a big hotel for a long time. All ok with me.
The week has been a good one for Fred. On Monday he started a new routine. Instead of me walking him into to school he now wants me to wait at the car while he goes on his own. I was happy with this, a sign of his independence and growing confidence. Once he reached the gate he turned to wave and then Denise walked out to him. She saw me waiting and gave me the thumbs-up, she had him, all was ok.
At lunchtime Denise told me of the consternation Fred had caused with his new routine. Apparently some of the kids came running into her shouting:
“Freddie’s walking in, on his own!”
She too was delighted with the new move and now it’s our daily routine, me waving and the thumbs-up from Denise.
On Thursday though I knew Fred wasn’t himself. This time he wanted me to walk him in and hold his hand. A step backwards I thought. After school I was waiting outside when I saw Ms O’Connor come out and look around. Not a good sign. When I got out of the car she just gave me the nod. That knowing nod. Fred had been waiting to go home, sitting in his chair with his bag on his lap when a seizure struck. No panic though. We made him comfortable, waited for all the kids to leave and when the chaos had cleared I drove the car into the yard. Fred walked out, got in and we went home.
It wasn’t a bad cluster, the rest of the day was clear, Fred even woke for dinner. The next afternoon he had a couple more, nothing serious and today it feels like nothing happened.
Fred has this lovely practice of lying in bed with his eyes closed and asking me questions before drifting off to sleep. Sometimes it’s about what I did as a boy or it might be about when Christmas will be here. On Tuesday night he lay there, and I actually thought he was asleep, when he came out with...
“Was your Daddy on the moon?”
“Was your Daddy an astronaut?”
“What?” I was confused on this one, wondering where he’d developed the line of thought.
“Was your Daddy an astronaut when you were a kid?”
“Oh, nothing, night Dad,” he said rolling over on his pillow.
Where he got that one I’ll never know.
That’s the beauty of our Fred.
It’s a dirty day. The rain is bucketing down; the clouds are dark and heavy. Without a doubt winter is here and the jackets are on again. Going out this morning with Fred the sun was shining, by the time we were coming home the skies were opening and we hadn’t been out that long.
Taking Fred with me at the weekends is something I should do every week. At times I just leave him be, enjoying the break from school and whiling away his day. Then come Sunday evening I always regret that he hasn’t done much, evidenced by his slowness from not being challenged. Fred’s life is challenging, he has many hurdles to overcome, but his brain needs to be challenged too, that is the other side of the coin. So when I said after breakfast that he was to come out with me his first reaction was to say no, or “no, thanks,” as our polite boy puts it. Other weeks I would have said ok but this time I insisted. After a shower and a change of clothes Fred was waiting with a shopping bag, happy to be going out. The two of us set off, leaving Lisa at home; our Ruby had gone to Cork at 7am, school stuff not shopping...
Fred and I drove over to Super-Valu. Inside he set off on his own, something I am getting confident of letting him do, only checking on him every five minutes. When he did come back to me he had some scented Christmas candles in the bag,
“You can’t be taking stuff off the shelves,” I said.
“But I didn’t take it off the shelves my Dad,” he pleaded, “they were on the table over there.”
It took a few minutes of explaining that it doesn’t go down well to pack your bag before paying for goods but he got there in the end. We kept on shopping until Fred found a display of DVDs and spent the rest of the time shifting through them. As a reward for doing good work, he had to pack the bags at the checkout and carry them to the car, he was allowed one that hadn’t already got at home. Since we got back he’s been watching it, happy that his Daddy is happy and not onto him to do something.
All this comes at what I think has been Fred’s first full week at school for a while. Between seizures, illness and school holidays I think it may be his first this term. It was a good week for him; he did his work, did his activities and came out yesterday afternoon with a smile on his face. It was Friday, the weekend was here and no homework, the perfect day really.
Little by little Fred’s schoolwork is improving. Despite setbacks due to days off I can see his writing reading and maths getting better, still behind others of his age group but that can’t concern us now. What is important is for him to catch up, get the basics right so he can move on. At times it feels like pulling teeth but those days are getting fewer; he is making progress. At night now he reads some of his books on his own, not stopping over words he knows but pushing on, getting to the end of a sentence. It may only be a paragraph here and there but it’s an improvement.
During the week Sam Maguire paid a visit to the school and Fred got a lovely photo of himself with the cup. Fred had no knowledge of what the cup was for just that it was a ‘massive trophy the football team won.’ A good way of putting it I suppose.
For the rest of the weekend Fred will take it easy. There is no point in going out, the weather just won’t let up. A call has been put out for Jaden to come over but that doesn’t look likely now.
Fred is happy cuddling his Mum, his Mum is happy to be cuddling him while the rain falls.
A typical November Saturday really.
This was a week of great days. Days when nearly everything goes right and Fred’s life as well as our own knock along as normal as possible. Fred will always ensure that every day is different no matter how normal it may appear. He’ll find a way of doing things or saying something that is just off centre making us either laugh or cry in the process. Our man has a knack of looking at life differently, sometimes with a single minded purposefulness that would take me years to get down on paper not to mind do justice to his way of thinking.
On Tuesday Ed Galvin paid us a visit, killing time between appointments . Fred came with us on a trip to the electrical shop as we needed bulbs for the kitchen. When I was growing up we had one bulb for the kitchen, a strip-light in the ceiling. Today in our kitchen, which isn’t much bigger than the one I grew up in, we have nine ceiling lights, six under shelving ones plus the two in the hood over the cooker. Energy crisis? What crisis? Anyway I needed to replace some bulbs and we drove over in Ed’s Bentley.
Fred took the front seat, Dad was relegated to the back and at the store Fred took Ed’s hand. In the store he stood near Ed watching what he was doing and taking in the new experience. For me it was great as Fred stood still, wasn’t pulling at everything and not asking to buy a torch, for once. No doubt Ed had an influence but Fred too has grown-up a lot lately and he came through this test in flying colours.
That was day twenty-three in the current cycle, a record equalling day for Fred. When Ed extended an invitation to lunch we thought it better not to push it and Fred stayed at home with his Mum. We still live in fear of something happening in public places; no matter how well life has being going for the man. He didn’t mind too much though and when I came back he was happily watching a movie. For the rest of the day all that was on my mind was would be make it to a record breaking day twenty four.
Wednesday dawned and Fred had made it. He got up as usual and had a good breakfast. Ruby had gone off to Cork with the Currans so when Lisa went to work at noon it was just the two of us. He wasn’t quite himself though he had lunch and I worked around him. During the afternoon he asked me to sit with him on the couch which I gladly did as I had one of those feelings. We watched a movie and some TV. About four o’clock he gave me his glasses and rolled over on his side, immediately falling into a deep sleep. Twenty minutes later and the seizure struck and so day twenty-four became our new milestone.
Lisa came home an hour later just as the second broke through and she wasn’t surprised. Neither of us had really spoken that we expected a seizure but we both knew it was on each other’s minds. In the way only Lisa can she took over Fred’s care and got him through the rest of the evening. It was a bad cluster, spread out over the night but at 2am Lisa called a halt by giving him the Stesolid. We try not to give him the shot as it can stay in his system for days, making him lethargic and it reminds us of the boy he was just a couple of years ago. But after five or six seizures you give up hope of the VNS stopping the run and intervene.
Fred was wrecked the next day but asked for his breakfast about 2pm. As he hadn’t eaten since lunchtime the day before I made him plate of fried eggs and toast which he ate. His appetite was good and he was sitting up watching TV, all back to normal in under twenty-four hours which says a lot for our man.
That night going to bed Fred asked for a bedtime story. I found him a book and he sat up on his pillow waiting for me to get ready:
“Ooh,” he said.
“What?” I asked.
“Ooh, ooh,” he repeated and slipped into a seizure.
That last one, almost a goodbye from the epilepsy as it leaves after a cluster. Sometimes it hits in the morning, other times in the evening and now just as he was going to sleep. We made him comfortable and he slept through the night.
Friday was Halloween, a day Fred had been looking forward to for weeks. Ali and Hannah came in for a sleepover, adding to the excitement for Fred. Once it got dark Fred started to get ready and the two of us set-off trick or treating. At each house we went to I stood back and Fred rang the doorbell, sometimes twice if they didn’t answer fast enough. As we were the first out Fred did well, very well indeed. So much so that I had to carry some of the loot in a separate bag, much to Fred’s delight. Back home he showed Mummy how much he’d gotten and poured it all into a bowl to look at. He showed it to the girls after they came home from the cinema, proudly offering them to take a sweet.
That evening I watched the original Halloween movie and Fred, sitting next to me, did as well. Though it’s a bit dated now it still has some scary bits. Going to bed Fred asked me:
“So there isn’t a man with a knife and a mask in our house?
“No, of course not,” I laughed.
“Not on the stairs? Not in the bathroom? Not in the bedroom?”
A good scare makes a perfect Halloween.
Yesterday the two of us went to the cinema. For some reason we got out of the habit of going and the new Teenage Mutant Ninja Turtles was on, in 3D. We queued, bought our tickets and the 3D glasses. In our seats we put on the glasses and the movie began to roll. The 3D was new to us both but Fred loved it, taking off the glasses and putting them on again, seeing the difference. For about twenty minutes all was well but it got quite dark and noisy. Fred said he was scared, that there was too much jumping. Whether this was due to the surround sound and 3D or maybe a throwback to the Halloween movie I don’t know. We left but the manager kindly put us into an animated movie and all was forgotten. Fred ate some of his sweets from the night before, pulled up the armrest and cuddled up. A great way to help with his recovery.
This morning he slept in and came down for breakfast about 10.30am.
“I’m back to normal now,” he announced, clearly rested after the long sleep.
Another one for the books.
On Sunday Ruby and I went to Dublin. It would once have been strange for the two of us to head off leaving Lisa and Fred behind but such is the progress we’ve made that hardly a mention was made. We left Sunday evening, the two cuddled up on the couch, looking forward to the peace of having half the family gone. In Dublin Ruby and I were well looked after by Conor and Cathy, the only thing missing were the two back home in Tralee.
We got home Monday evening to dinner on the table, a pleasant surprise, and Fred delighted to have us back. I was the delighted one though as Fred was still ok, no signs of any activity, a day down at school and another day ticked off on the seizure free calendar I keep in my head. Again Dr Shahwan has come good, not letting us be distracted by short-term setbacks and helping us keep our heads when before we may have lost them. Today is actually day twenty-one, three lovely seizure free weeks for Fred and the family.
On Tuesday evening Fred had to get the flu jab. For conditions such as epilepsy the flu can be a danger, skewing medicine levels, pushing up temperatures and letting in seizures. Even those couple of chest infections Fred got lately had him in hospital, something that we want to avoid as much as possible. The two of us went to the doctor’s surgery to get the jab and Fred really impressed me by how he behaved in the waiting room. On previous occasions he would have been into everything but this time he sat still, waiting his turn like the rest of the people. When our turn came Fred walked in ahead of me and out of habit got up on the couch, though the nurse offered him a chair. The jumper was off and then he began unbuttoning his shirt, again out of knowing exactly what was expected of him.
The nurse got the paperwork and asked me to sign:
“Now Dad,” she began in the manner all medical professionals address me when with Fred.
“He’s John Verling,” said Fred.
“What’s that?” she asked.
“He’s not your Dad, he’s John Verling,” explained Fred.
Nurse Sile laughed; Fred had won her over.
Fred gave his usual “jesus Christ almighty,” when the needle went in but otherwise all went fine and we were out the door after a few minutes. Back home Fred showed off the bandage to Ruby as if he’d just gotten home from the Front and Ruby was suitably impressed.
Wednesday afternoon and I was driving over to the school to collect Fred when my phone rang. Denise was calling to say Fred was in a bad way and to come straight in. Like Steve McGarrett I pulled up outside Blennerville gates, lights flashing and parking on the double yellow lines. Inside Fred was slumped on a chair, as pale as a sheet and moaning. Just a couple of minutes earlier he’d told Denise that he felt bad and needed to get sick. Around him were Ms O’Connor, Ms O’Se, Denise and Terry, the principal. Fred isn’t short of carers at school that’s for sure. I looked at Ms O’Connor but she said “no, he hasn’t had a seizure,” but it did look as if one wasn’t far away.
As it was school out time the last thing I needed was for Fred to keel over in front of the parents and pupils. So I asked Fred to stand up which he did, then I picked him up and rushed him out the door to the car. Terry ran in front of me opening the door and Denise threw all Fred’s stuff in the back. We strapped him in and I turned for home.
“I’ve got bad confusion,” said Fred, “and the puke is in my throat.”
Seemed like the worst of days but we got home and Fred was soon lying out on the couch. After a small snooze he woke and asked for lunch. A chicken sandwich later and he was sitting up watching a movie. By the time Lisa came home he still had “a little confusion,” as he called it but seemed past the worst. Dinner was had and Fred went off to bed, still with bouts of confusion but slept through the night. On Thursday we kept him home, for observation really but also to help him recover.
On Friday the class were going by bus to the library for a story telling session. Fred said he was up for it and so I drove him over at the usual time. At the school he told to walk behind him, as he was able to go in on his own. So I walked a few paces behind, Fred holding his hand up to tell me to back off. At the classroom door he stopped, the kids were at their desks and they all looked up at him.
“I’m back!” Fred declared hands up in victory.
“Hi Freddie,” they all replied, happy to see him.
“You’re back Freddie,” said Ms O’Connor, looking at me and I shrugged my shoulders in reply saying that all had been ok, he’d come through the couple of days unscathed.
Whether it was the flu jab causing the disruption or the VNS kept a cluster at bay we’ll never know but Fred carried on regardless. On Friday evening Ruby had some of her new friends over to get ready for the school disco and Fred won them all over. He found photos of Ruby as a baby and passed them around, the girls loving his sense of humour as he laughed at each photo before he handed it over.
Being charming without realising it is a special skill and Fred does it at ease.
Long may it last.
Fred, along with everything else in his life, gets wax build-up in his ears. Once a year he has to get it removed and his annual service was due this week. On Tuesday morning I collected him from school at 11am and we drove over to the hospital. As is the practice now I didn’t tell him in advance, as that would be all he would think about, to the detriment of everything else. So for the short journey Fred kept asking why he had to go to the doctor, did he have an infection and would he have to get an injection? Even when we were sitting in the waiting room the questions continued; who what where when and why; the five ws of investigative journalism are well known to our Fred.
The ‘noises’ in his head had started a few days previously and were a sure sign that the trip was warranted. We were lying in bed one night when he shot up, looking around and looking scared.
“What is it?” I asked.
“The noises are back,” he answered,” I can hear Rugrats in my ears.”
Why Rugrats I don’t know but then Fred said he could hear the radio too. Off he went to his mother’s bed where he slept soundly, apparently the noises only play in our own bedroom.
The doctor, who tends not to say much and if anything is a bit wary of Fred, did his job and took enough from Fred’s left ear to start a cottage industry making nightlights. Fred oohed and aahed but when the procedure was over he was delighted. The revelation of being able to hear clearly again was obvious and he was delighted too that ‘the noises’ were gone.
Leaving the doctors there was a big smile on his face, he was looking around taking it all in, as if he’d been locked away in a darkened, sound-proofed room for a month.
“That’s better Dad, I can hear again,” he said.
Back at school he walked in, leaving me at the door and I nodded to Denise that all was good. When I collected him after school Ms O’Connor came out to ask if all was ok. I explained why we went off and she started to laugh. Apparently when Fred had settled himself again he looked up at her at the top of the classroom and exclaimed;
“I can hear you now Ms O’Connor!”
We had another trip to the doctors this week as well, this time for his six month check-up with Dr Shahwan at Temple Street. At 7am we left the house, Fred a bit bewildered at being woken so early, again we hadn’t told him of the trip. With a minimum of fuss the car was packed with the essentials and not far outside of Tralee Fred curled up to his Mum for more sleeping. Thankfully he slept until beyond Kildare which meant he was fresh by the time we got to Temple Street.
On the way up Lisa and I discussed what we wanted to talk about. Our main concern was the decreased intervals between seizures and the gains we had made in seizure severity seemed to have faded too. This we were linking with the changes Suzanne had made to the VNS output at the clinic in August. The output frequency had gone from every five minutes to every three minutes.
The waiting room was packed with kids of all ages. A big change in Fred that I noticed was that on previous visits we’ve had to keep him seated and not to be making noise or disturbing other people. This time however he sat still, watching the other kids and being a grown-up boy. A small improvement but a sign that Fred is maturing. When our time came he went to get his weight taken and also sat still in Dr Shahwan’s room. There was a time he’d be pulling at everything but all went peacefully enough.
Dr Shahwan was interested in the improvements Fred had made; how well he was walking, talking and looking like a young man. This is a big part of Dr Shahwan’s approach, to make epilepsy almost secondary and get Fred a life where he develops fully, with epilepsy just being a condition. As he hadn’t seen our man in six months Amre was delighted with the patient standing in his room. When I said that it was two years since we first met Amre couldn’t believe it. At times we too lose sight of the improvements over the last couple of years.
Over this weekend I’ve tried to take a back seat and watch Fred. He is a different boy, walking tall, talking and not as argumentative as he was over the summer. Of course we don’t know how long all this will last or if it is indeed a permanent step. We too have being slowly trusting him to do things on his own and to tell us if all is ok. The outcome of the meeting was to let the VNS as it is, see if the few bad intervals are just a blip and will Fred return to the longer gaps. Dr Shahwan was anxious for us to see the bright side, the long term improvements and not to get sidetracked by what may only be temporary setbacks. The glass half full approach.
After the meeting we had the traditional lunch in the Basement Cafe and before setting off for home. Lisa and Fred slept for a while and we were home by six, a long day but at least we were home. For a treat we had a Chinese takeaway at which Fred nearly fell off the couch with the excitement when I walked in with the white bag.
Later Fred was watching a DVD when he turned to Lisa and asked:
“Do you miss your Mummy?”
“Of course,” answered Lisa.
“Well she’ll always be with you, in your heart,” Fred said, holding his hand over his own heart.
Where he got that from I don’t know but that boy is always breaking our hearts
Of that we are sure.
Since Wednesday live has been fairly normal in our house. Fred went back to school as if nothing had happened. The teachers and pupils all looked at him with concern but they needn’t have been; Fred had bounced back as if nothing had happened. The hospital, high temperature, chest infection had all been forgotten, Fred was back and that was all that mattered. Kids seem to take everything in their stride and just get on with life. Certainly our Fred just walked in the gate and past Denise as if to say ‘all right let’s get this over with so I can go home again.’
As he walked in Denise, looking concerned asked:
“How are you Fred?”
“Oh fine,” Fred said as if he’d never been away.
You got to admire those powers of recovery.
Before Fred had involved himself in the latest drama we had planned to go on drive and get a hot chocolate on the way. So on Wednesday afternoon the two of us set off to do a few jobs and get a cup of hot chocolate. We parked up in town and walked over to get some money from the cash machine. After getting the messages we set off on our drive and some drinks for ourselves. Driving down the street I spotted a friend and stopped to say hello. John hadn’t met Fred before and was delighted to eventually get to shake his hand.
“Where are you two off to?” John asked.
“Oh to get some hot chocolate in a cup, a proper cup,” said Fred, doing the movement of holding up a cup by its handle, “and a coffee for my Dad, in the restaurant.”
It seemed that Fred wanted a sit down hot chocolate and the idea appealed to me too. So on saying goodbye to John we set off back down the mean streets of Tralee and parked as close to the Grand Hotel as possible.
The two of us approached the fine doors of this old hotel and Fred said “but this is the restaurant for fish soup.”
“Yes,” I said, “but they also do hot chocolates.”
“Cool,” Fred said pushing open the freshly polished, heavy door.
Inside we sat at the high stools around a small table. Fred loved it looking around at all that was happening in the busy restaurant and soon the waitress who seems to have been there forever, came over to take our order.
“Excuse me,” said Fred, his manners shining through, “can I have a cup of hot chocolate please and a cup of coffee for my Dad.”
The order was taken and we sat waiting. Soon afterwards a big mug of foamy hot chocolate topped off with marshmallows was placed in front of the man. My cup of coffee looked inadequate in comparison.
“Wow,” said Fred, the eyes popping out of his head. For a minute or so he just sat looking at it, stirring the marshmallows around the foam, smiling in anticipation.
There was also a biscuit to with it and I gave Fred mine saying:
“Don’t tell Mummy.” That always adds an element of indulgence to a trip out.
“I won’t,” answered Fred without looking up.
For the next while we supped our drinks and looked around at what was happening. Fred asked about the beers and what the different taps served. I tried to explain that the black tap served Guinness which was the best drink and the other taps served only lagers and ales.
“They would make you sick?” asked Fred.
“If you drank too much yes,” I answered, without claiming any prior knowledge.
There was a man sitting at the bar, a man I’ve seen many times around town. He always wears a suit with a fine flat cap over his head of grey hair. In winter days he has a black great coat on and he strides around with the gait of a gentleman. Once I pointed him out to Lisa and said it looks like he comes from “good old stock.” That phrase always comes back to me when I see him and spotting him sitting at the bar of an old hotel seemed to fit my image of him perfectly. The cap was on but the great coat was hanging on the coat hook, like a gentleman would, not draped over the back of his seat like others. He ordered a pint of Guinness which was a perfect example to show Fred of how a pint needs to be poured and left to settle. Fred watched the process, fascinated with the black pint and the collar of white cream forming at its head.
When our time was up, our drinks drank, I suggested we go. Fred didn’t want to leave, he was loving the watching, the observing of the habits of a hotel bar on a wet afternoon, the people coming and going and so was I. It was time to collect Ruby from school though and leave we did.
Back in the car Fred said:
“I liked it in the restaurant Daddy, can we go back again?”
“Of course,” I said, delighted that it had all gone so smoothly.
On Friday evening we had a few jobs to do, in and out of the house and by 5.30pm it was just Fred and I catching up on time while the girls went to the gym. It suddenly occurred to me that we’d forgotten Fred’s five o’clock medicines. It’s important to keep to a regular schedule with the meds and with all our jobs we’d forgotten the evening dose. Fred swallowed the pills and went back to watching TV while I started on dinner.
When Lisa and Ruby came back I went to off-licence to get some beer for a night out. One of our five-aside football players had snapped his Achilles tendon while on the pitch last week and as he couldn’t go out it was thought we’d bring the beer to him. A pure act of selfless care if there ever was one and Finbarr was only too happy with the arrangement.
When I got back with my box of beer Lisa was in a terrible panic. Fred was sitting up looking at me on the couch.
“You gave him his medicines and so did I, before I went out,” Lisa was saying, checking on a fairly dazed looking Fred.
Those meds are strong and the fear of an overdose chilled me. Liver function is the usual side effect but you never know with the meds. Stupidly the two of us were looking online which only gave us the worst case scenario, cardiac arrest, liver failure and you name it.
I rang Temple Street.
They put me through to the reg on call and the first thing she said was;
“Don’t panic this happens to parents all the time, just tell me what he’s had,”
This I did and she went away to check what to do.
After a minute she was back...
“Well what you just gave him would still be under his daily allowance so you’re way off an overdose,” the relief was massive, “the only thing to worry about would be a difficulty in breathing from the Rivitrol, very unlikely given the small amount taken and that would have happened after a few minutes.”
“Thank you so much,” was all I could say. I had the phone on speaker and Lisa standing beside me visibly relaxing as she listened.
“One thing is certain he won’t be having any seizures tonight,” the doctor said as we said goodbye.
She doesn’t know our Fred, I thought.
There never isn’t a moment of drama in our Fred’s life.