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

29Jun/140

End of Year

Well Fred’s first full year at Blennerville School has come to an end. The summer holidays finally arrived on Friday and Fred now has the long, hot months ahead of him to recharge his batteries. Leaving day on Friday was very emotional for us, the advancements of this academic year have been unbelievable and are all due to that wonderful team of people.

On Monday we had Fred’s school report. Ms O’Connor and Ms O’Se thought it best for us to meet rather than send an impersonal sheet in the post. Lisa and I headed over first thing and we sat at the desk in Ms O’Se’s classroom like guilty school kids. The report didn’t surprise us; Fred’s advancements were highlighted as were his weaknesses. There is much work to be done over the summer, reading and writing mainly but the emphasis was on keeping the momentum going. How this will sit with Fred is another thing, homework during holidays is much worse than homework during school term. Somehow we’ll have to get around to it but first he might get a week off.

In true Fred style he wasn’t about to sign off from school without a bit of drama. We got the phone call about 2pm on Tuesday, just eight days from his last seizure. Again the school were out at the playing field and Fred had keeled over after running a race. The heat and activities are just too much for him but in time he will adjust to it all. It has been too long since he was able to enjoy such fun with other kids and we can’t stop him now just out of fear. There have been other days when he’s come through it ok but on Tuesday the combination of heat and running was just too much.

When Lisa and I got to the playing field Fred was cuddled up to Denise in the goals. The other kids were still doing their races and not in a drama over Fred. Just how we want it, the epilepsy is part of Fred but it doesn’t define him. No, Fred is a wonderful, loving, full of fun and popular boy, something Ms O’Connor was really emphasising at our meeting. “A pleasure to have in the class,” was how she put it.

We bundled him into the car and got Fred home in a couple of minutes. On the couch he slept for the rest of the afternoon, waking for toilet breaks and a glass of water. Even when Otto arrived on his odyssey from Derry Fred slept on, only waking at 8pm looking for dinner. Once again he didn’t cluster, we didn’t have to intervene and the next day he was as right as rain. The short gap was a disappointment but we think that was due to the heat and running around. This we don’t know for certain but we’re enjoying the improvements for now.

Fred was back to school Wednesday, a bit shy but was given the usual welcome from all the kids. No fuss, no drama, just how it should be. When I collected him afterwards the girls were giving him big goodbyes and he was full of fun from yet another great day at school.

That night I went to Dingle on a sleepover. Judy was over from Australia, Conor was down from Dublin, Otto down from Derry and Jenny from Mayo. A reunion of sorts and it was at least ten years since we’d all been together, if not longer. Fred didn’t want me to go and I had to lie that I wouldn’t be gone for long. It was actually very hard for me, I really missed the little man, the fact I wasn’t worrying about him probably made me miss him even more. Previously the worry would override all other emotions but on Wednesday night not going through our usual routines was a bit odd. Normal stuff for a parent really and couldn’t let it overshadow my night away. Not that the company I was in would let it and we had a ball.

By the time I got back on Thursday morning Fred had gone to school. It was a long morning waiting for 2.30pm to come around, waiting to see my man again. Lisa and Ruby headed off to Waterford for Granddad Jimmy’s birthday barbecue about 2pm, leaving me alone. At 2.15 I headed off to sit outside the school, waiting for 2.30pm to come around. When Fred eventually did appear in playground I was struck by how grown-up he looked. Maybe it was the short time away or maybe it was that I was waiting for him but out walked a confident 11 year old boy, one that I hadn’t noticed fully before. He nearly knocked me over with the hugging and kept saying how much he missed me. It really was a great welcome home.

Back in the house Fred hardly noticed that Mum and Ruby were gone. The weather had broken, the rain was lashing down and Fred wanted to do nothing, just lie out on the couch watching a movie. This suited the tired me perfectly. I could read and doze while Fred did his thing. Even when Ms O’Se called over with some presents Fred wasn’t too disturbed, gladly chatting to her and thanking her for everything. That evening the two of us had dinner on the sitting room floor, watching TV, cuddled up under a blanket.

Bliss for Fred and Dad.

On Friday Lisa and I headed over to the school with presents for the three teachers, “the women who care for me,” as Fred calls them. At midday they whole school trooped out, the 6th class girls crying at their last day, the boys running for the gate shouting “freedom.” Lisa and I had emotional thank-yous with Ms O’Connor, Denise and Terry, the principal. Hugs and kisses, tears and goodbyes while Fred sat in the car waiting. The school has done so much, all in their stride, and it is beyond words to express how much they mean to us.  Fred’s improvement is the tangible proof of how wonderful Blennerville School has been it will be only in future years that it will all be put in perspective. For now all we can say is thank you Blennerville, thank you so very much.

That afternoon Fred had a special visitor, one that I kept secret from him. Luckily Conor arrived early in the day so Fred’s curiosity over the ‘secret visitor’ was quickly satisfied. Fred was delighted to have Conor in our home, as were we all. Fred took him upstairs, into all the bedrooms, all the ‘attics’ and then outside. We had a great lunch, much chat and laughter. Fred loved it having Conor with him and it was a very sad man who said goodbye a few hours later. We’ve been promised a return visit, a sleepover by Conor and Cathy which will be wonderful for us all.

To cheer-up the man and stop him wondering when Conor would be back, I told him we were having another surprise visitor on Saturday. As Fred had been asleep he’d missed Otto on the way through on Tuesday. So when he arrived dinner time Saturday Fred was only too happy to take him on another house tour. Otto stayed for dinner, Fred sitting beside him at the table, listening to all that was going on. Much to Fred’s delight Otto stayed overnight so he had him for breakfast again in the morning. I don’t know if Fred remembered meeting Otto before but he took to him immediately and was sad when he left.

It’s been a great week, Tuesday’s hiccup besides and a great start to Fred’s summer holidays.

Hopefully they will be busy holidays, full of fun, laughter and visitors.

 

 

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22Jun/140

The Five Second Rule

It’s an odd one that I find myself writing of Freddie having a seizure and finding so much good in it. Not the fact that he had one; a call from school just as I was heading to collect him Tuesday afternoon confirmed what we guessed on the first ring.  No the good news lies in how it developed.

Lisa and I got to the school to find Fred in his chair, in the shade of a tree, just coming around. The ‘postictal stage’ as it is medically known. How many times did we hear hospital staff use that phase? His eyes were half-open and he seemed to recognise us. This in itself was something new; usually Fred is unconscious for a while afterwards. Denise and Rose were standing over him, wiping his face and keeping him cool. Fred had got a bad attack of the jitters outside, and while they got him in his chair and had swiped him continuously, the seizure had broken though. The kids were playing around him, oblivious almost, which was great to see.

We bundled Fred into the car and drove home. At the house the man was able to walk in, dazed and confused but he made it to the couch. Poor Ruby had to be disturbed from her lying out but then she still had study to do for her final exam Tuesday. Lisa cuddled up beside Fred and he slept for the afternoon.

That was it.

No more seizures, just rest and bathroom breaks.

Fred was awake fully for dinner at six. After dinner he asked “when’s dinner?” as that meal was only lunch.

Nothing wrong there.

This was the first time in five years, I think, that Fred has gone so long seizure free, seventeen days, and hasn’t clustered when one did strike. On top of that he recovered so quickly, so much so that by Monday evening I’d forgotten the drama of lunchtime at school.

On Tuesday morning Fred could have gone back to school but we kept him home.

So many positives that Lisa and I were scared to discuss the events of Monday, in case we jinxed matters.

It must be the VNS; nothing else has changed in the last while but we’ll have to see and we won’t get our hopes up too much until we’ve had a few more days like Monday.

On Wednesday they had Sports Day at school. It was very hot and being the worriers that we are it was decided that Fred would be collected from the field at 11am, because of the heat. The heat of the day can be a trigger and it was very hot during the week. Fred actually didn’t want to go to school that morning but I persuaded him to go, with the sweetener of coming home early.

That was a mistake.

From the moment I dropped him he was telling Denise that he was going home soon, he couldn’t or wouldn’t concentrate on his schoolwork and I don’t think Ms O’Connor was too happy with me. When Lisa went to the sports field at 11am Fred was busy kicking ball and running races but he was happy to go home. The kids were unhappy that Truly Scrumptious hadn’t brought cream buns...

When I collected Fred from school on Thursday afternoon he hobbled across the yard. Denise behind him was trying not to laugh. During both breaks Fred had been playing with the older girls, ignoring Denise’s instructions to slow down during tag. While looking over his shoulder to check on Denise, he fell over another boy, hurting his leg. Another time, looking around again to check that Denise wasn’t too close, he bumped into the wall, hurting the other leg. Playing to the gallery Fred had hobbled his way through the rest of school, not exactly sure which injury to favour the most. Like a WW1 veteran with his pack on his back, he limped wearily to the car, making sure he moaned the requisite amount of times. Back home he limped into the kitchen, telling his mother that he was too sore for Ms O’Se.

That didn’t happen. Ms O’Se arrived and Fred was put to work, much to his annoyance. Again he blamed his mother but Ms O’Se wasn’t having any of it. In the end the little man did his homework and even apologised for giving his mother gyp...

It’s a strange darkness that seems to fall over Fred when he doesn’t want to do something. Part of it is sheer pigheadedness, a stubborn streak that his sister also possesses. The other part though is as if his brain switches off; he doesn’t listen, won’t co-operate and would prefer to be comatose, spread-eagled on the ground or on the sofa, eyes rolled up, completely unresponsive.  No amount of arguing, cajoling, threats, dragging or in the end shouting will get him to respond. It’s really upsetting as Fred can go into this state on the slightest whim and no amount of sendings to his room seems to prevent further events.

To try counteracting this, cut it off at the pass as it were, I’ve introduced a five second rule when we see Fred sliding into this state.

I threaten with:

“I’ll count to five and if you don’t go wash your teeth you’ll spend the day in bed.”

Sounds silly now but such a situation can develop over something fairly trivial and escalate to a whole day ruined by Fred disappearing into his comatose state.

Maybe it’s Fred thinking that by mimicking his seizure status he’ll get his own way. But how does he know what that status is?

The five second rule has worked to an extent, stopping a lot of more recent fights but I feel terrible issuing the threat and worse when I have to actually follow through and frog march him upstairs. Usually half an hour in the cooler will do the trick and a repentant Fred will call me up to plead his case.

“I’m good now,” he’ll say, brown eyes looking over at me, melting any hard heartedness I’ve left in me.

It’s probably only a temporary situation borne more out of frustration at not having the freedom and control of his life that Fred sees in other kids.

We just hope it passes soon.

With more days like last Monday Fred will be well on the way to getting some sort of life back.

As will we all.

 

 

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15Jun/140

You’re Truly Scrumptious

Fred is downstairs making chocolate biscuit cake with his mother. We’re going to the school end of year barbecue this afternoon and everyone is bringing something. Last night Lisa made about a thousand mini meringues which they are going to dribble with chocolate before dropping them to the party. With the cake and meringues the kids are going to crawl home from the barbecue, if the parents don’t eat them all first. Hopefully they’ll remember the Verlings for more than just Fred’s epilepsy when we eventually leave Blennerville, raised cholesterol being one alternative.

The man is on probation though. This week he reverted to the silly phase of not doing what he’s asked. Part of this is his strong-minded attitude, which we wouldn’t change for the world. Ruby was the same at his age and still is now, except now she disdains of her parents and she’s the one telling us to behave. With Fred though he just walks away, won’t talk and pretends to be unable to hear.  It’s very frustrating when all you want him to do is come in for dinner and he ignores you. Doubly so for his mother who isn’t used to being ignored, though I can still hear her saying “That child!” when infuriated by Ruby doing the ignoring a few years back.  Unfortunately with Freddie we have to be able to trust him, to get him to do as asked because running away or not responding can be dangerous. How many times in the past have we had to pick him off the ground when he’s gone off in a strop? The image of him dropping ten feet off a ditch into a deep stream a few years ago will haunt me forever. That too was when he was refusing to get in the car and ran off instead.

So it with this fear in our heads and annoyance at his childish behaviour that we’ve been coming down hard on Fred this week. A few times he’s been sent to bed early and the threat of ‘never being allowed out again’ has been issued too. Even this morning breakfast was going to Muttley until he agreed to put King Kong away. It must be very difficult for Fred, he wants his independence but we can’t give it to him until we can trust in him fully. Having said that, last night Fred went for a walk but came home as he’d gotten ‘a fright’ when the confusion descended on him. That’s responsibility, he knew that all wasn’t ok and he came home. A few swipes of the magnet and he was as right as rain...

“Where did you get the confusion?” asked Lisa.

“Over by the trees.”

“Which trees?”

“The tall ones.”

“What tall ones?”

“You know, the old ones.”

Not ‘the trees behind Billy’s house,' no, that would be too simple and not half descriptive enough for Fred. May that never change...

Again this week Fred hasn’t been sleeping or at least not going to sleep on time. On Tuesday we had another lights on, door slamming and Fred appearing at the end of the stairs. Wednesday night though he slipped back into a pattern and has been drifting off by ten o’clock, with no fighting. Just as well as the World Cup began on Thursday night and there is a lot of football to watched, hopefully in peace.

On Tuesday Fred went playing hurling with his class. Denise told me on Monday that she’d be with him and would keep a close eye. When I went to collect Fred after school she was full of how good Fred had been and how he looked the part with his helmet, flipping the ball off the ground like Christy Ring in his prime.  Christy Ring was my reference, Denise being young enough to be the maestro’s granddaughter. Now that we are getting some control over Fred’s epilepsy and he’s becoming more aware of the confusion, days of playing Hurling or other sports may come back.

Not that Fred is without his interests. On Monday he wanted to take his shark book to school for ‘show and tell.’ Not that Ms O’Connor was doing this; it was something Fred picked up from an American TV show. In went the book and when Fred got to school he dropped his bag quickly on the table and went looking for it.

“I brought something,” I heard him say as I left.

Afterwards Ms O’Connor said he was brilliant. Fred gave an impromptu, uninterrupted talk to the class on sharks and all the different species. I don’t know if he went into a scene by scene breakdown of Jaws but they’d probably still be there if he had...

School is really working out for him. On Thursday Ruby and I were driving past at lunchtime when we slowed to have a look. There was Fred in full conversation with two girls, walking around the side of the building, Denise a few paces behind. It was lovely to see. Ms O’Connor told us that now they are wearing polo shirts due to the hot weather, Fred is pulling down his open top and showing the girls his surgery scar. That will do it every time.

On Friday the class went on their annual walk, along the mountain and down onto Derrymore beach, a good three hours of trekking. Unfortunately it was too far off the road for Fred to go but we met them all on the beach at lunchtime. The welcome Fred got was lovely. As I walked down the path I could hear the word go around “here’s Freddie,” and they all dropped what they were doing to talk with the man. Fred was straight into the stream and a lovely girl called Molly came over to give him her bucket and spade. Lisa was the big hit though; she had made cream buns and chocolate chip cookies which she was doling out like Truly Scrumptious from Chitty Chitty Bang Bang.  The kids swarmed around her and the buns were gone in double quick time. A few boys were boasting that they’d gotten two, their faces covered in cream and chocolate. Fred went home on the bus with the rest of the kids, Denise taking the magnet just in case.

If only all school days could be like Friday, I’d go back myself.

Now it’s time to go to the barbecue. Last year it didn’t occur to us to go; now we’re looking forward to the afternoon.

No doubt Truly Scrumptious will be a big hit.

Not just with the kids either.

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8Jun/140

Who Lives in Pineapple Under the Sea?

There is an episode of SpongeBob SquarePants where the writers hit a peak of creativity. SpongeBob and Patrick hide out in a box and use their imaginations to create all sorts of scenes. The much maligned neighbour, Squidward, doesn’t get imagination and doesn’t understand from where the boys are getting their fun. It’s a scene I’m reminded of whenever I watch Fred playing with his action figures such as Iron Man, Wolverine, Batman and many different Godzilla characters.

As a kid of eleven maybe he should be more into hanging around, getting ready for the teenage years of being sullen. There may be a grain of truth here as his years out of school have lead to him being behind what other kids are doing. I know Jaden has no time for them, preferring to be on his phone or tablet. But watching Fred build complex story lines from a couple of figures, battles that go on for ages and conversations of which a Hollywood scriptwriter would be proud, assures me he is on the right track.

During the week, when we were on our way to school, Fred found two old dinosaurs figures on the floor of the car. From the house to the school gate they battled, chatted and fought to the bitter end,  as much to my entertainment as Fred’s. Great imagination. The recent school fundraising initiative also confirmed Fred’s imagination.

They20140604_195101 had a clever idea of the children to do one piece of artwork, the subject to be of their own choice. The finished paintings were professionally framed and priced at €10.00 each. An exhibition of the entire school’s work was held on Tuesday night and I went down not knowing what to ex20140604_194930pect. It was beautiful.

The exhibition was laid out in a classroom, all 130 pieces of framed work, mixing age groups and classes on freestanding display units. There were lots of dogs, other animals, mountains, skies, cars and country scenes. Finally I found Fred’s, three musical instruments on a strong red background. A flute, a violin and a trumpet; they may not have been drawn as well as some other works but from what I could see it was the only one of its type.Needless to say it brought a tear to my eye.

Every parent went along with the fundraising bit and the work came home with the children the next day. When paying, I asked the curator what the take up was like... “Nearly 100%” he said proudly.

Fred came home Wednesday showing off his framed work, which now hangs proudly in the front room.

Not that the week hasn’t been without any lows. Fred was fighting most nights with his mother over going to bed. The long evenings have him confused as to what time it is, plus he’s finding the brightness difficult when trying to sleep. When I was a kid it was the same. Going to bed at 8.30pm when it was still light outside was a tough one. We lived in an old house so the shutters would be closed and the heavy, lined blackout curtains drawn. Still I’d be awake when the others would be going to bed and I remember asking my sister Ella if it was still bright outside, which it would be, much to my amazement.  Fred has inherited the inability to drift off easily from me, much to his mother’s annoyance. Behind this lies the worry of Fred not getting a good night’s rest as sleep deprivation is a key epilepsy trigger. This has been evident since going back to school on Wednesday.

Fred was off school Monday and Tuesday and the Friday before, part of giving the kids a break in the sun. Fred loved his time but got into bad habits of not sleeping, not that he needed much encouragement. On Tuesday morning he was having breakfast when his right hand shot into an involuntary jerk spilling orange juice across the table. “I got a fright,” he said, a look of fear on his face, not understanding the why. Lisa took him inside and much to our relief nothing else happened. Other little bits happened such as small, five second frontal lobe seizures as he was, eventually, going to sleep. Whether these are all connected we don’t know but Denise was on high alert at school, swiping him continuously. Maybe it’s a new progression in the VNS adjustment, maybe because his last clusters were so mild that his brain didn’t right itself, who knows. Funnily enough he didn’t get any confusion, the portent of seizure activity and had a great week in every other way.

Fred has been getting himself up in the morning, following me down after a few minutes and helping with the breakfast or emptying the dishwasher. His schoolwork has been praised and he’s still playing with the older girls. On Friday evening he and I went to collect Ruby after her Maths exam, the two of us laughing all the way to Dingle. All great fun and just what the doctor ordered, literally in Fred’s case.

Lisa was away Friday, supporting her wonderful sister, Clare, who was doing a fundraising ‘Let’s Dance’ in Kilkenny. Ruby, Fred and I had dinner and settled in the front room on a cold, wet evening. We had received an invitation from a new arrival on the estate, just drinks from 7pm to 9pm. At 7.30pm I went off, leaving Ruby in charge of Fred. As I walked across the green the though struck that here I was off on my own and Lisa was in Kilkenny, while the kids were home alone. A first. Not that I was more than five minutes away. I was planning to just have a glass and head back at 8pm. But I relaxed, got to know people from our estate and even had a glass followed by a bottle of beer. At 9pm I headed home, Fred looked up momentarily to say hello but outside of that I doubt if I was missed.

Just a great, normal week but one that would have been beyond our imagination not that long ago.

Now it’s not anymore.

SpongeBob would approve.

 

 

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1Jun/140

Lessons Learnt

As I waited for Fred outside his school gate on Tuesday it occurred to me how normal his life has become. There he was coming out with Denise and all the other kids plus this week Fred went up to the full day at school, 2.30pm, without a bother.  His parents are able to relax; Ed Galvin had remarked earlier how nice it was to sit with Lisa and me in our kitchen, just like normal people do. Other parents nodded and said hello, some of the grandparents were talking about their time at the same school over sixty years ago.

Fred walked out at his own pace, Denise just beside him. As they passed a group of girls, I guess 6th classers, they broke into a chorus of “Hi Freddie.” Fred feigned not to hear them; looking at me over the wall but they kept going until he eventually gave them a “hello.” They continued with a “see you tomorrow.” Fred looked at me with a happy, chuffed smile mixed with a bit of embarrassment but definitely more chuffed than embarrassed.

Denise told me that at break time Fred had gone off on his own to talk with the older girls...

“I think he has an eye for the older woman,” she laughed, winking at me.

“They’re just my friends,” protested Fred.

Turns out at both break times he’d searched them out and had even coaxed the girls into a game of hide and seek. Denise, always in attendance, was told to stay away...

“I have to find those girls,” Fred had said rushing away from Denise at lunchtime.

Poor Denise; pushed to the kerb when the other girls take interest. She’ll always have a place in our hearts though, taking our boy when we were in a fragile state and giving us the confidence, the freedoms, we enjoy today. She really has been a key player in the improvements of the last while, something Lisa and I will never forget.

Ms O’Se, Olivia, has been another key player this year. With her determination that Fred isn’t allowed to slack or find excuses she has pushed him on. Each afternoon Olivia comes around and Fred is handed over. He protests a lot, especially on sunny days, but normally he gets down to the work. Olivia doesn’t allow him pretend to have confusion or tiredness and many is the time I’ve passed the kitchen to hear...

“Come on now Freddie, you’re not tired, just one more.”

Fred now knows he can’t shirk with Olivia and it’s easier to do the work than not. Even on Friday, a day off from school, Olivia came around, much to Fred’s annoyance.  Lying, I appeased him by saying that Olivia would only be around for a “short time.” Fred’s favourite length of school work. Actually Olivia stayed for ninety minutes, a half hour longer than usual without the man noticing.

This week, after much work, Olivia had a breakthrough. Fred has been good at his reading and usually if he gets stuck, he’ll look at an accompanying picture to help find the word. All part of Fred being very visual as anybody who has spent time with him would notice. Fred will describe an object instead of using its name, as his brain works that way. For instance the kids on the estate have go-karts for zooming around the place, Santa presents this year. Fred calls them the car-sit-down-bikes, the laptop is the-big-black-computer and all his Godzillas are named by their shape or sizes....”you know the circle Godzilla with the spiky back and the big teeth” I’ll be told to get from the cupboard of toys.

The problem has been if Fred is shown a word on his own he won’t recognise it. This has driven Lisa and I daft over the years. Fred will read a book without a problem but once shown a word-card with a word from the story he’ll look blankly at it. Olivia has stuck at it and this week I was called in when I came home...

“Watch this Dad,” Fred said proudly, taking a load of single word cards from Olivia’s case.

With Olivia holding them up Fred shot through the words, random words from anywhere in the pack. If he got stuck he’d look at the word and sound his way through it. This really is a major breakthrough and a compliment to Olivia’s doggedness. Not that she has been immune to his charms and I think he’s managed to soften her approach over the last few months. I hear talk of dinosaurs and Godzillas coming from the kitchen from time to time. One day recently Olivia arrived just as Fred was putting on his t-shirt. He stopped to show her his scars, proudly running his fingers over where “the doctor cut me with his knife,” as he put it. Not everyone is shown them.

Fred had a bit of confusion at school during the week but Denise just swiped the magnet and all was ok. Now that he’s aware of it, and Denise is able to cope, school life doesn’t need to be interrupted too much. The day of confusion was the one after Fred wouldn’t go to sleep the night before...

Monday evening I was watching a program and about 11.30pm I heard some raised voices. Pausing the TV, I was just about to get up when the light on the stairs came on...

“I’m sick of you.”

“No I’m sick of you.”

“Get down those stairs to your father!”

“Oh ya?”

“Yes, now!”

There was Fred standing at the foot of the stairs, his mother a few steps above him. Having gone to bed at 9.00pm Fred hadn’t gone asleep as planned, resulting in the fight with his mother. Sleep is important to his condition, especially regular sleep patterns. I quickly turned off everything and took him up, his mother glaring at us both. As Fred had been waiting for me, I was implicated too, guilt by association. The two of us went up and he was asleep in minutes, cuddled up to me while I read. When Denise told me of the confusion the next day it was a perfect example of how he needed to sleep and Fred nodded in agreement. Every night since he’s gone up on time and is in a deep sleep by the time I arrive, as is his mother.

Friday was a scorcher and Fred was out playing all morning. Jaden came over at gone 3pm, a bit later than usual but the two set off up the green to play. From my office I heard screaming and Jaden came around the corner, Freddie running behind him. Jaden had a chain which Freddie was chasing. The screaming, the excitement and the running had me worried but I tried not to be. They continued and I did get worried, running and screaming in excitement has had Fred on the ground previously.

Outside I found Lisa trying to get Fred to stop. He did but then that look of confusion was in his eyes and he cuddled close into Lisa. The magnet was back in the house and we struggled back over home. Fred began to jerk as he walked, he looked very scared.

Lisa got him inside and onto the couch, he was jerking quite badly at this stage. Jaden stayed outside. I found the magnet and Lisa began to swipe. We got his medicines into him but he was jerking uncontrollably, his eyes full of fear. His knuckles were white as he tried to fight the seizure onset, his head shaking, his body stiffening and his eyes flickering. Lisa was madly swiping but it was too late, the seizure broke though.

A mild one, but still lasted about a minute or so. Only eleven days since his last one and I was bucking. Angry at everything, angry at the world, angry at epilepsy and blaming everything under the sky. Why can’t Fred run around and have fun? Why can’t we be allowed to relax while he has fun?

In my anger I took Jaden home, who asked about a million questions along the way. This helped dissipate my anger, even made me laugh at the way our J man looks at the world. When I got home Fred was awake, groggy but aware of the world. The rest of the evening went fine; Fred slept and woke occasionally for toilet breaks. He even woke for food and watched a DVD for a while. He didn’t have another seizure which was wonderful and slept a peaceful night beside me.

Yet another eventful week in the world of Fred Verling. One where he took everything in his stride; charmed the girls and took big steps in his education. Sure epilepsy paid a visit but Fred took care of it as well, politely showing it the door after its brief visit.

Never a dull moment with our Fred.
 

 

 

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