How to begin the last one? For the last one hundred and eighty Sunday mornings, mainly Sundays as life has intervened at times, I’ve sat down and written of our week. What had begun as a short term plan to see if I could write, and write regularly, turned into Verlingsweek, at which I became very disciplined at producing. That Fred’s epilepsy took a turn for the worst when only two Sundays in was coincidental but Fred then became the dominant theme of each week’s post, so much so that the project evolved into a diary of his life. Over a couple of pints with friends recently they commented how they read Verlingsweek so they don’t have to ask me about Fred, which I now remember as being one of the reasons I initially included his epilepsy in the weekly posts. Now Fred is growing up he deserves his privacy and I can’t write of our week without his condition cropping up, his epilepsy is our week. This past Thursday Fred turned twelve and I’ve decided it is as good a time as any to stop writing Verlingsweek, to give him a private life again. Fred is becoming a young man and one needs to do that in private, not with your father cataloguing your every move...
All week Fred had been counting down to his birthday. For the last three Thursdays he’s been counting down to an event; Christmas, New Years and his birthday, they fall on consecutive weeks. Fred was planning a lot. One was for all his school friends to come over, one I think was a surprise party and another was for Ruby’s friend Sarah to come for tea. In the end we decided to keep it as low key as possible and to do some of Fred’s favourite things on the day.
In the morning Fred came down to breakfast with cards from his parents and Ruby on the kitchen table. We made a fuss over him; how great it was to be a grown up boy and how much we all loved him. Unfortunately for Fred he still had school, though he did claim that he couldn’t go as it was his birthday. Later when showered and dressed we set off and dropped Ruby first to her school. At Fred’s I left him at the gate; he now walks in on his own as any other kid would do and Denise waits in the classroom for him. It is lovely watching him head in, hands in the pockets and not even looking over his shoulder at me. If there isn’t anyone in earshot I’ll say ‘I love you,’ to which he’ll reply ‘Love you too.’
Before heading home I went and bought the ingredients for the chocolate birthday cake which he’d chosen. At home Lisa got baking while I went to my office. The postman arrived with a card from Granddad Jimmy which we brought with us when collecting Fred at lunch time. Unfortunately his Mecha Godzilla, which he’d also asked for, didn’t arrive though I knew it was on the way. Lisa and I drove over to collect him after school which is a special treat for him these days. Usually it’s just me.
At the school gate he came out all smiles...
“I did brilliant Dad!” he declared, to which Denise nodded in agreement.
In the car he opened his card but looked about...
“Hey where’s my Mecha Godzilla?” he asked.
“It didn’t arrive Fred,” I answered, “but as it’s your birthday we’ll go to the toy store and get you something until it does arrive.”
“The big toy store?”
“Yes the big one.” I answered.
“We’re going to the restaurant for a birthday lunch,” Lisa said to which Fred smiled in delight.
At The Grand, Fred and Mum got out while I went to park the car. When I arrived in the two were sitting at a high table towards the rear of the restaurant with the menus unopened. There wasn’t a need to look at them; Fred knew what he was getting. Soon the waitress came down and asked if we were ready to order...
“Ah excuse me,” said Fred, hand in the air as if in school, “I’ll have a white bread sandwich with ham and coleslaw, please.”
The lady nodded and took the rest of our order.
“Fred will have a hot chocolate too,” Lisa said.
“For his birthday,” I added.
The birthday lunch was eaten, the hot chocolate with marshmallows arrived and the waitress brought Fred a load of extra biscuits ‘for your birthday,’ she said. He was getting spoiled, no harm in that.
Afterwards we dropped Mummy home before Fred and I went to the ‘big toy store.’ Fred is like the proverbial kid in a sweet shop when in a toy store. He can’t make up his mind, keeps walking up and down the aisles, always looking for what in all likelihood isn’t there, or else, like his mother clothes shopping, he’ll go back to the first toy he looked at and decide it’s what he wanted as if he just found it. After a quarter of an hour of this I was losing my patience. On walking up one aisle Fred stopped one of the assistants...
“Ah excuse me,” he said, “I’m looking for a big blue dragon.”
“Ok,” she said and walked off, Fred following.
Down another aisle she found on a higher shelf a big blue dragon.
“How about a red one,” Fred asked.
She climbed up and looked at all on display but no red ones. Off the patient assistant went to check the stock of the computer but returned to say none were in stock. Fred sighed and said the blue one was fine. We bought it along with a batman DVD and headed for home. Back in the kitchen we opened the box and Fred went off to play with the blue dragon, the happiest man in Ireland.
That evening for dinner we had another requested meal. Fred wanted burgers and chips, “and the burger buns,” as he also insisted. The homemade oven chips, burgers and buns were eaten, nay demolished, by all of us and a fully stuffed Fred got up from the table.
“Wait for your cake,” Ruby ordered and Fred sat down again.
The lights were turned off, the candles lit and we all sang ‘Happy Birthday’. Fred was beaming; all was working out to plan. With cameras at the ready he blew out the candles and the most delicious of chocolate cake as baked by Lisa’s fair hand was eaten.
Squeezing in a slice on top of the dinner wasn’t easy but we managed it. Fred and I struggled inside to recover, Ruby went off babysitting and it really was the nicest of days.
The next afternoon I went to collect Fred from school. Ms O’Connor and Denise told me Fred was full of chat about his birthday, that he’d had a great day. We all had in truth. His Mecha Godzilla arrived Friday morning and on Saturday Ruby’s friends came over for the weekend, rounding off a great couple of days for the man. Now it is Sunday morning, Fred is watching Godzilla online while the ladies are breakfasting downstairs. Lisa has gone off for a run with Muttley and all is calm in Ballyard.
Verlingsweek is ending on a high note. Thankfully it was good one for Fred considering some of the weeks I’ve written about over the last few years. While his epilepsy has stabilised we’ve also learnt to live with it and to not let it dominate us. There is a long road ahead of us but at least we are on that road and many people are helping us. Fred is a wonderful, caring, funny, intelligent young man with a unique look on life. The next few years will be all about him fulfilling his potential, something I’m looking to watching Fred do in style.
For now I’d like to thank everyone for reading, for commenting and just for being a listening ear over that last one hundred and eighty Sundays.
Goodbye from us all.
By 3am this morning Fred was on his way to his mother’s bed for the second time, pillow under his oxtor, out into the dark night attempting once more to find sleep. He’d gone up to our bed about 10pm with Lisa, to go to sleep but when I went up at 11.10pm Fred was looking at me awkwardly as Mum was fast asleep and he was wide awake. In I got, Lisa went off to her bed and Fred cuddled up. By midnight I was finished my book and Fred was still awake...
“Maybe I’ll go to my Mummy,” he said, setting off for the first time.
Shortly before 2am he was back, pillow tucked up tight...
“I think I’ve found my sleep,” he said, standing at the bedroom door like little boy lost.
In this time I hadn’t been to sleep as I had a feeling he would be back and being a light sleeper these ideas prey on your mind.
“Get in,” I said, “and go to sleep it’s too late for all this wandering around.”
“Yes my Dad.”
I didn’t find his love for me cute at that time of the morning, all I wanted and needed was sleep, for the two of us.
Forty-five minutes later Fred was still sighing, rubbing his legs around on the bed, obviously not asleep. I switched on the light and took up a book of Raymond Carver short stories I keep by the lamp for just such occasions. Fred was lying on his back, eyes scrunched closed, pretending to be asleep.
“Go back to your mother,” I said sternly, patience long gone.
“Go back upstairs and don’t come down again tonight, you need to sleep.”
“Ok my Dad,” and off he went, trusty pillow stuffed up under the oxtor once more.
Raymond Carver wrote fast paced short stories and the subject matter is never the happiest. His sentences are short and his narration tends to fly along, probably not the best for helping one to sleep. Four stories later and I was still wide awake but at least no sign of Fred. At 5.35am I took one last look at the time on my phone and turned off the light, eventually drifting off to sleep.
Why Fred couldn’t sleep is anyone’s guess. He had a couple of seizures Friday afternoon which no doubt threw his system out of kilter. All this Christmas activity plays havoc with all of us and Fred has had a fairly lazy time of it. When he had the seizure on Christmas Day we feared it might be the change up to 400mg of Tegretol from the 200mg. Lisa went back to 200mg immediately after that and thanks to the kindness of a friend combined with the help of a pharmacy in Killarney we now have a supply to do us through to February, when Novartis say the 200mg will be back in general supply. The fact he now had another seizure a week later might point to the change not having had an effect, though we are not convinced, Fred is definitely better on the 200mg dose. Apparently ‘the holidays’ are the worst time for seizure control with bad sleep patterns combined with bad eating and little exercise leading to breakthrough events.
Who knows anymore, except that we do know Fred on 200mg and on regular routines tends to deal better with his epilepsy. Tomorrow sees the return to school, back to normal and, much as I’ve loved this break, it might be the best thing for us all.
Back to early morning rises, the school run and homework. Since the turn of the year I’ve been trying to get Fred around to the idea of the 2015 being the year of the big steps in improving himself, becoming the great young man he is capable of being. Fred will be twelve on Thursday and we’re using that as the milestone for him to aim at, doing what a twelve year old would do. It won’t be easy and there will be a full year of work ahead of us but Fred will respond well, he’ll work hard at school, do a few jobs around the house and the such, if only to keep his parents quiet.
Now it’s mid-morning. Fred and Ruby are watching TV, Lisa is pottering around doing Sunday morning jobs. The sun is shining and it is a beautiful winter’s day. The plan is to go out for a drive later; I had gone back to bed after breakfast but of course I couldn’t sleep so I’ll let the day wash over me and I’ll be exhausted by 9pm.
As for our Fred? I wouldn’t be surprised if he’s still wandering the house come 2am...
Today is the day we begin to engage with the world again. It’s been a very lazy, quiet, wonderful Christmas and this gap period until New Years Eve is just perfect for doing nothing. I’ve watched The Great Escape and It’s A Wonderful Life while Fred has watched every episode of SpongeBob on Netflix, at least once. Lisa has cried her eyes out At Saving Private Ryan, though the Vanity Fair I bought her yesterday with the Bradley Cooper feature cheered her up. Now Fred is downstairs watching some other old favourites while Lisa and Ruby are off at the gym, burning off that Christmas food which has been on a continuous roll since the 24th.
Thankfully we all slept in until about 8.45am Christmas morning. Fred got a load of presents but this year Santa went easy on the Godzilla toys, as we feel he has to move on a bit to more age appropriate and practical stuff. So the little man got puzzles, DVDs, clothes, a scope for watching wildlife, games and heavy fleece pjs. For a while he was disappointed and went looking under the tree to see where the Godzillas were but he quickly got over it and went back to his collection in the corner. Those pjs were put on and only came off this morning, three days later. Fred wore them everywhere along with some heavy duty socks. In bed, under the blanket watching TV on the couch which he hardly left, at the kitchen table, not once were they taken off, day or night. He did have a shower Stephen’s Day but the pjs went back on. This morning when he came down for breakfast the smell preceded him and into the wash they went, to be ready in time for the big visit tomorrow.
The smile is still on Fred’s face from when Lisa told him this morning that Aunties Claire and Rudi were coming tomorrow. Already he’s planned the visit to the Grand for lunch and the movies they will watch together. Last Sunday his cousin Paulie came on a surprise visit and Fred nearly passed out with excitement, jumping into his lap as soon as Paul drove up to the house. Paul, who had been at a party in Killarney the night before was a bit worse for wear but he indulged the Fred. Again it was a perfect excuse for a visit to The Grand which was lovely on that Sunday afternoon, with pre-Christmas shoppers coming and going. Fred had the Galvin special which was as good as ever with chowder up to the lip of the bowl.
On Monday Lisa went to get Fred’s medicines from the chemist so we’d have a supply for the holidays. For some reason the 200mg tablets of Tegretol which he usually gets, were out of stock and so we had to use the 400mg. He takes three and a half tablets per dose and now that was changing to the bigger pills it worried us. Epilepsy control is very tight; any change in meds can have terrible effects for some reason which is why we can’t change to non-generic cheaper versions. The worst bit is that the 200mg are out of stock until February so we’re trying to ration the existing 200mg ones until the pharmacy can find an alternative source.
On Christmas Eve Fred got very bad confusion just as he went to bed and shook himself to sleep, having a tiny frontal lobe about 1am. On Christmas morning he was fine and got on with the day but he did seem a bit off at times. About 6pm he got the bad confusion again and cuddled up with his mother for a snooze. A seizure broke through about 6.45pm throwing our day upside down. If this was due to the medicine changes we could have been in for a bad night, the last thing we wanted on Christmas Day. Fred slept for another couple of hours but woke feeling fine, a bit hazy but fine. For the rest of the evening he watched DVDs and played with his presents with us constantly watching him.
That was that though. Lisa went back to the 200mg tablets the next morning and we don’t know what we are going to do about a supply when they run out. Tomorrow we’ll be on the phone seeing what can be done, looking for a source somewhere. Also in our heads we’re thinking maybe it was just a coincidence, just one of those unexplained breakthrough seizures that epilepsy likes to throw at us from time to time. Who knows?
What I do know for certain is that Fred will continue on and we’ll bring in the New Year on Wednesday night. Now that 2014 is nearly over we’ll look back and remember all the people who’ve made the year easier for us. My family and Lisa’s who come and visit and make Fred so happy. Blennerville school, without who Fred would have a very contained life. The freedom that their care gives us is beyond describing and the fact Fred loves going to school says it all. Conor and Cathy who, though we haven’t had to lean on their hospitality as much, we know are always there for us; Conor’s visit was a highlight of the year for Fred. Ed and Pamela Galvin who look after us from Maine and Kilmurray; Ed taking me to lunch introduced The Grand to the family and Fred hasn’t looked back since. The staff of Temple Street and Kerry General Hospital who care for Fred and his parents so well. Brian who is always at the end of the phone for me, giving me advice and distracting me with cricket scores. All our friends who we know are there if we need them, who always ask, who always care and who we know would be here in the drop of a hat.
To all of you thank you and have a Happy New Year.
Fred is hanging with the girls. Last night, Ruby and friends went to a gig in Killarney and two of them stayed over. Actually when we arrived back at ten past midnight Fred was in his pjs at the top of the stairs to welcome them home. Such had been the expectation that he hadn’t been able to sleep but he quickly drifted off once we got into bed. Now this morning he had breakfast with them and afterwards the four cuddled up under a blanket to watch a movie, Fred in between the two visitors. Christmas has truly arrived for the little man; all that waiting has paid off eventually.
All week he’s been counting down the days. Finally Fred has got it into his head that it’s a matter of days now and all he has to do is sit it out. Each morning we mark off the calendar and another door is opened on the Action Hero Advent one. Lisa and I have been counting the days as well, both of us aware that if Fred went through a good spell seizure free then that run could be broken on Christmas day, the last day you’d want it to happen.
On Wednesday Fred came out from school looking very tired and telling me he didn’t feel well. We drove home and he was twitching badly in the front seat. Luckily we got home and onto the couch without incident. He slept if off and was fine by the time Lisa got home at 5pm. Ruby was off ice skating in Cork so the two of us relaxed and it seemed to do the job. That night Fred was saying he didn’t want to go back to school, he was too tired and it was time for holidays. For every kid the last day at school before Christmas holidays can be the best part of the year and I didn’t want Fred to miss it. So I told him there would be a party and he reluctantly agreed. I dropped him off in his civvies, no uniform day at school, and in he went anticipating a big day.
The excitement of national school kids when breaking up for Christmas is wonderful. Out they all come with whatever they made, decorations, Yule logs, cards and presents, proudly showing them off to the waiting parents. Fred was no different. He came out beaming having had a great day of eating and watching movies, possibly his best yet in education.
“I had a great time Dad,” he said, selection box of sweets in his hand, sitting up in the seat full of excitement.
“Oh we had a party and did toy telling.”
“What’s toy telling?” I asked.
“Oh you know when you have to tell the class about your favourite toys.”
“Did you do it?”
“Yes,” he beamed “I stood up and told the whole class about Godzilla, Gigan, Mecha-Godzilla, King Gidorah and all the monsters.”
“Yes and when I was finished all my friends clapped and Ms O’Connor said I was brilliant.”
The tears in my eyes made driving dangerous, I was so pleased for him. I could only imagine the detail and the actions played out, every monster named and described. For Fred it would be a big thing to stand up and tell the whole class but it shows how comfortable he has become at Blennerville. Merry Christmas to them all.
At home he proudly showed Mummy his present and the selection box. The wrapped present went under the tree and Lisa opened the sweets. Then Fred went to his bag and pulled out the prize he won in the school raffle, a radio.
“Now I’ve got my own radio,” he declared, opening the box with a scissors.
I got some batteries and Fred turned it on. For the rest of the week the radio has gone everywhere with him and is beside the bed at night. He’s found some music channels and is getting used to its workings. His first radio and he loves it.
That evening he fell asleep while watching a movie and had a seizure about an hour later. At least we thought, it may now be out of the way for Christmas. Lisa and I did the routine, made him comfortable, settling in for the evening. Thankfully he only had the one, as per the last two events and he woke hungry about eight o’clock. The rest of the evening went peacefully and the two of us cuddled up in bed about 11pm, Fred sleeping the night through, me watching him, waiting for something to happen.
On Friday afternoon Ruby came home with the girls and Fred roused himself from the couch to go dance in the kitchen to the music they were playing. That evening he came with me as we drove over to the off licence to get a beer, twice going around town to look at the Christmas lights. Oddly enough he had another seizure about 7am Saturday morning but even that one he slept off and still came down for breakfast at about 11am. All in all not a bad way to see a seizure event through and hopefully that’s it for a few days.
Now we’re on the full countdown to the big day and our house is looking very seasonal thanks to Lisa.
Just before I came upstairs I checked that Fred was ok. Cosy under the blanket, cuddled to the two girls but yet had a sour look on his face...
“What’s wrong?” I asked.
“I hate this movie, it’s boring,” he said.
Another lesson Fred will have to learn, there are times when you have to like those girly movies...
Plenty of time for that though, for now we’ll enjoy Christmas and see what Santa brings to those who’ve been nice...Happy Christmas.
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.