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

28Apr/130

What a Week

The usual Sunday morning in our house, Ruby watching her YouTube videos, all four of us under our blankets just taking it easy. Yesterday was a bad day, Fred’s first day of seizures in 15 days but, as is the way at the moment, they came hard and fast. The gap between seizures seems to be settling on a 14/15 day rotation, which we’re delighted with, but the episodes seem much stronger.  The great thing about there being a break between seizures is that we begin to relax and forget about epilepsy, we always know its there somewhere, waiting to hit, but as advised, we enjoy the free days, value them and not live them in fear of what may happen.

 

As has been the way recently he had the seizure in the morning. The little man had gone to his mum’s bed about 4am, leaving me on my own for a change. As I was getting ready for the day, about 8.30am, I heard that horrible sound, the one I could pick out in hurricane, the howling sound Fred makes when going into a seizure. When you haven’t heard it for a couple of weeks you hope that it’s not what you think it is, but it is, it always is. Upstairs Lisa was with him, holding him, keeping him safe. While deflated, you’re always hoping that he might go longer each time; we’re also trying to be positive, deal with the incident but not let it take over again. Our plan, now that he’s fine today, is to let him recover and go to school tomorrow. Make his life as normal as possible, treat the epilepsy as part of Fred’s life, not all of his life.

 

Easier said than done but with Lisa’s strength and determination we’ll get there.

 

Yesterday I was due to go to a meeting inCork. Once Fred started seizing I decided not to go but Lisa insisted that I did, she could cope, Ruby was with her and we couldn’t let the epilepsy dictate our days. Reluctantly I agreed, I wouldn’t be gone for long and Rubes is a great help when needed. We carried Fred downstairs, not easy when he’s knocked out after a seizure, but we did and made him comfortable on the couch. He settled himself and I got on with my Saturday morning duties.

 

By the time I was ready to go, Ruby was up and the house was stocked with all that was needed. Fred had had a couple of the small frontal lobe seizures but it was three hours since the big one that had announced epilepsy’s return.  It’s hard leaving in such circumstances but as Carthy Madigan advised, we can’t let the epilepsy dictate anymore; just get on with our lives as much as possible. On the way I called home a few times, all was ok, just a couple more frontal lobes. It was a beautiful spring day and the drive to the Real Capital was a sunny one with plenty of cherry blossom lining the route. However the beauty was lost on me, all I could think of was my little man and even though Lisa was telling me not to worry, I did.

 

On arriving I rang home, all was still sort of ok, Fred was sleeping, the two ladies having a lazy Saturday. The meeting went well but during the first break I rang home, he’d had a three big tonic-chlonics, the ones we hate, all a minute long but Lisa gave him a shot of Stesolid to try put a stop to them. Back in the meeting, I couldn’t concentrate and when it was polite to, I left, driving down the narrow lanes of the Northside, held up by traffic and I couldn’t wait to get on the open road.

 

By the time I got home he had another two, one was just finishing as I got in, it had been two hours since the last one, at least a gap was opening up. Ruby was fed and we tried to see if we could rouse the man with some ‘crispy chickens’ but no luck, he really was knocked out. A couple of times he woke, looked around but dropped back into unconsciousness very quickly. About 9.30, the two went off to bed, Lisa giving Fred a piggyback, me behind, standing guard. By the time of my bedtime the two were well settled, so much so that I was sent upstairs to sleep on my own. At 4am I got a text, bleary eyed I tried reading it, it was from Lisa, “Fred wants his Daddy.” He’d woken and noticed the wrong parent was with him. This after Lisa spending all day with him, minding him, caring for him, seeing him through all those seizures, doing all the nursing while I was off inCork, no, mother was dismissed and the father welcomed in her stead.

 

Oh, the lot of the unappreciated Irish mother…

 

 

On Monday afternoon Fred wanted to go to the beach with me, something I hadn’t had the courage to do in over two years, probably longer. He loves the beach, but has had a few seizures there in the past and the idea of a beach trip has filled me with dread ever since. But if Lisa was being strong enough I had to be too, we weren’t going to get anywhere with the normalization process if I didn’t practice what I preached. So without thinking about it, we gathered up our bits and the two men headed off to Fenit, where Lisa had previously found an easy to-get-to beach.

 

Funnily enough it was a great relief to be on the road again, the two of us off on an adventure, like old times, I loved it. Fred knew exactly where to go, he has a memory for directions. He also has his own way of giving them…

 

“You drive, drive drive…” – go straight on

“Go round, round, round…” – go around a bend in the road.

“Go down, down, down…” – go down a side road.

 

Combined with Freddie pointing out remembered landmarks on the way, we easily found the little beach. I drove down as far as I could and the two of us got out. Fred showed me a good spot, where we sat and gathered stones. He’d brought a paintbrush so we could brush the rocks and look for dinosaur fossils like inJurassicPark. After about ten minutes, it felt like hours, we packed up and headed home.

 

On the way we got an ice cream as a treat. This really was a big day, a trip to the beach and an ice cream, all I could think of was that I wished we hadn’t lost the last few years, how I loved being out and about with my man. The two Verling men and the open road, no stopping us. We spoke about his big day Tuesday, the first day back at school. Fred wanted to see his school and so we drove down to see it, the kids were just coming out and we slowed to have a look…

 

“I’m scared Dad,”

“Why?” I asked.

“Of the big boys, they won’t like me, those big kids,” Fred looked at me with those worried eyes, the brows arched in the cutest manner that just makes you want to kiss him.

“Of course they’ll love you, they’ll all want to play with the Fred when they get to know him,” I joked.

“Oh, all right, I’ll go,” he said the eyebrows arched even more, if it was possible.

 

So this really was to be a big week, Fred’s first trip to his new school, his first time sitting in a full classroom in over three years. Tuesday was the day. On Monday Lisa went and met all involved, the headmaster Terry, the teacher, the SNA, and Fred’s home tutor Elaine. The idea was to get everyone on the same page, so there would be continuity in his education.  Tuesday morning Ruby and I set off, leaving the two to get ready. By the time I got home all was over, Fred’s first day was behind him…

 

”I was brilliant Dad,” he told me, as I came in the door but in a nonchalant way, as if it was only to be expected.

 

Lisa, having spent the hour outside the school having twenty nervous breakdowns, was delighted the first day was over; delighted we’d made the first step.

 

It felt like normality was returning at last.

 

For the rest of the week all we wanted was for the first week to go without incident.

Each day Lisa sat outside the school, on my way back from Dingle I’d stop and offer to take over or to get a cup of tea. Lisa, a bundle of nerves, couldn’t relax, her eyes fixed on the door of the school, her phone gripped tightly in her hand. If she wasn’t watching the door, she was checking her phone, waiting for it to ring. There was no way I was taking over; in fact, I was hunted away. This meant that I was at home waiting for the man to come in, bag on his back and in his new uniform, looking the scholar, even with the tie askew.  As soon as he got in the door, the uniform was pulled off and his civvies put on, the best part of the day for Fred, I think.

 

We got to Friday, all was ok, the first week was down and we’d survived. Fred loved his time at school and it seemed the other kids loved him too.

 

On Friday evening the two of us were chatting before he went to sleep…

 

“Dad?” he asked.

“Yes…”

“Has the sun gone to bed?” was the question.

 

He still retains that beautiful innocence even though he’s been through so much.

 

Long may it last.

 

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21Apr/130

Fred and The Two Cathys

Its Sunday morning again,  the weeks seem to pass quicker at the moment but at least I can report another seizure free week, nine days of Freddie being himself and getting on with his little life. On Friday evening he went for a walk with his Mum, just a short one over to the green area near our home. When they were playing, Lisa noticed that look in his eye, the one when she knows not all is quite all right. When asked Freddie, said he could feel the ‘confusion’, that horrible state he gets pre seizure. Lisa walked him back to the house. She was upset that the confusion had come on him when out on a break, we’re only getting brave enough for small walks and don’t need any setbacks. Luckily he made it back to the house and curled up in his mother’s arms to try sleep it off.

Ten minutes later he was awake. The confusion had passed over him; maybe because he had the nap or maybe due to Lisa giving him his medicines an hour earlier than usual. Either way we got through the evening, had a fine dinner of roast chicken, roast potatoes and cheesy cauliflower before heading off to bed about 10pm. When I went up about an hour later he was fast asleep, wrapped around his Mum without a care in the world and didn’t notice when I took over night watch duty. All was well until about 4.30am when Lisa burst in the door, she’d been awake, worried about him getting his medicines early the evening before, so decided to give them early again. She was also mindful of the early morning seizure which had led to a day of seizures the previous Friday. The poor little man was in a deep sleep, we really had to prise his teeth open to get them in but out of habit he swallowed and rolled over back to sleep.

Oh the madness of parents worrying over their little boy...

On Tuesday we headed to Temple Street again. Lisa packed a food parcel for the Inchicore Two including a birthday cake, a chocolate one herself and Freddie had baked the evening before. As Conor and Cathy had birthdays coming up it was to be a joint gesture. The trip up went as smoothly as usual. Freddie had only the one pee stop, off a side road somewhere outside of Portlaoise, the rest of the time he spent looking out the window, snoozing or asking where we were, waiting for Dublin to be declared. Fred has this thing about “almost there” and “nearly there”. “Nearly there” is when you’re about half way, “almost there” is when Dublin is in sight. This starts outside of Limerick...He used to occupy himself on long journeys by watching his DVD player but a couple of times he had a seizure mid movie. In our usual madness at trying to prevent seizures, watching DVDs in the car is no longer allowed. Fred doesn’t seem to mind; in fact he doesn’t ask to watch them, content with looking out the window and maybe staging Godzilla battles.

The Godzillas came with us this time; Fred has spoken of them so much in the past that the whole collection, Godzillas, Ultraman, King Kong and all the other monsters were packed in a big bag. Conor was shown them all, one by one and described in great detail, Cathy was out so she missed the introduction. Later, after dinner, plates were cleared and Fred, sitting on Cathy’s lap, laid them all out again like an army on the table. They made quite a sight and I think she was genuinely impressed, the army was still in position when we came down in the morning.

Fred loves his time with Conor and Cathy, it’s such a safe environment and he goes off, leaving his parents on his own, to watch Conor cook or chat with Cathy. It’s a funny feeling for us to not have to watch him all the time, we can even half relax for a few hours, unwind a little, have that extra glass of wine.

After the big dinner, Fred wanted the cake brought in, candles and all. He had it in his head that it was Cathy’s birthday only and presented to her, proud as punch. To top it all off he sat and sang “Happy Birthday” to her, a very special moment, it really was, and all three blew out the candles, each making a wish.

At Temple Street the meeting went well. Cathy Madigan takes Freddie for nearly three hours, breaking for lunch. The lunch break is what Freddie likes the most about Temple Street. It’s an old building and the excellent restaurant is in the basement. “The Kitchen” as Fred calls it and we go down in the lift to get there.  He always has a sandwich but loves the queuing up and sitting at the tables, getting cold water from the font, it’s all part of a life he hasn’t had much access to lately. These little, everyday things mean so much to him at the moment but hopefully the mundane will become just that again, as he gets back into life. Cathy Madigan is determined for him to get there and has been a great strength to us lately. When she heard that Fred’s SNA still hadn’t been approved she was far from happy. Freddie can’t get back to school until he has an SNA to care for him.

After lunch Fred went into the afternoon session. Cathy reckoned he was only up for ¾ of an hour but in the end he was in for nearly two hours. As always Fred confounded the experts and was as bright as a button when we went to get him. Cathy showed us how delayed she believes Fred’s brain is in processing information. It takes a long time for his brain to store something he learns, so long in fact that it takes an age for him to retrieve it when needed. No wonder Lisa is driven daft trying to teach him, he takes words in, recognises them but an hour later can’t tell you what the word is, looking blankly at you when asked. He has a great memory; he can tell you things that happened years ago, it’s just his brain doesn’t allow him to retrieve things in a hurry. This may be due to the medication; they are sedatives after all but probably due to the effect of his frontal lobe defect too.  IF and I stress IF, he gets the surgery hopefully learning won’t become so much of a chore.

The good news Cathy had for us, was that she’d made some calls. She’s not one for standing on ceremony and had banged a few heads together...Freddie had got his SNA. He can start back at school, its only 15 hours a week but that’s three hours a day, enough for any man to back into the rhythm of things. Lisa has a meeting on Monday with the principal and all going well he may be back in uniform Tuesday morning.

This will be a major change in our lives but one we’ve waited and hoped for, for nearly two years now. Of course we’ll be worried sick but Freddie’s education is our focus, worrying will have to be done on our own time.

Fred slept most of the journey home, he didn’t even wake when I stopped for food. It was almost 8.30pm when we got home; a long day but it had been another great trip to Dublin. Tara was staying for a sleepover, Fred was only too happy to have another female to play with and he cuddled up to her to watch some TV.

The rest of our week went as usual. Fred’s home tutor came for two sessions and he did quite well with her, all I could hear from the front room was chatting and laughing...

Fred loves entertaining the ladies.

 

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16Apr/130

Lisa in Control

It’s a Tuesday morning in Tralee. Fred and I are sitting up watching Mr Bean, the cartoon version, which annoys me a lot more than the TV original, which was bad enough. Usually I publish this piece on a Sunday evening but this week I’m a couple of days late, nothing but tiredness prevented me from writing earlier, that and the fact I was in Dublin for the weekend.

 

Dublinnearly didn’t happen. After sixteen days of seizure free bliss, epilepsy came back with a vengeance on Friday morning. During the sixteen days you always know it’s just around the corner but you hope against that it will stay away from your little boy forever. No such luck for our Fred.  About 4.30 am on Friday I was woken by Freddie having one of those 5-second frontal lobe episodes. At least that’s what I thought it was, it all happened so quickly I couldn’t tell for sure. For the next couple of hours I watched him, dozed and watched him again. He seemed fine, was even talking in his sleep and making the usual noises an active sleeper makes. Then about 6.30am, a big seizure struck. He was lying so peacefully in the bed, head on his pillow, the way any kid would sleep. The seizure lasted about 90 seconds or so, seemed like forever when I was holding him, it had been so long I’d almost forgotten how horrible these things are. Afterwards, all is changed, now he’s unconscious, making horrible noises as his body readjusts itself and he becomes a patient.

 

Immediately I called Lisa and she came down to take charge. We tired getting his medicines into him but his jaw was shut tight. There are a few aftershocks when he shivers a lot, shakes and makes a lot of snorting noises. Lisa was in the bed with him by now, as I had to get up and take Ruby to school. Not long later he had another seizure. Another big one. This wasn’t looking good. We settled him, tried again to get the morning medicine into him but no luck. Before I went down to make breakfast we managed to get his jaws open and the medicines into him. The poor little man was looking at us through the eyes of a zombie, not recognising us or knowing what was going around him. This state is very upsetting, no matter how many times we witness it we’ll never get used to it.

 

Before I left for Dingle he had another seizure. Not good at all, in previous times we would on the way to A&E after a third. Lisa gave him a Stesolid, the last thing we wanted was another hospital visit. This seemed to settle him and I set off with Ruby someway confident that all was under control.

 

By the time I returned he was doing ok. The seizures were now presenting as the five-second frontal lobes but he was still in a deep sleep. Lisa sent me off to work; there was no way I was heading to Dublin on Friday, for all I knew hospital could still be the weekend’s destination.

 

When I got back for lunch the two were still in bed. He’d had another big seizure and was still having the small ones. This was a sort of state of control. As long as the big ones stayed away or were only occurring every hour or so we were getting somewhere. Freddie was also coming around slightly, not much but you could tell he was aware of his surroundings. At one stage I kissed him and said “I love you” and he answered back “I love…” before falling back to sleep.

 

All day Lisa stayed with him. Sitting up in bed, Fred propped up on cushions between her legs, sleeping and seizing. The way she takes over is wonderful, the devotion to her boy is beautiful to witness. The two may fight like cats and dogs at times but when he is in seizure activity, do not step in Lisa’s a way. She nursed Fred through the day, I took over from time to time or brought cups of tea but it was Lisa who was there for him at all times.

 

No words can truly describe how she nurses us all through these times.

 

Throughout the afternoon Freddie slept and seized. Mostly little ones and he had what proved to be his last big one about 4pm. In all he had seven big seizures on Friday and countless little frontal lobe ones. From 4pm onwards, he slept a peaceful sleep and returned to the sleeping little boy we know and love. In that period you are beside yourself with worry, not daring to hope that it’s over or even hope that it’s in decline. You never know when epilepsy is going to hit again. You try compare it with previous times but you could name a dozen similar times with a dozen different outcomes. One example that I always use to temper my hopes, is when he had a bad day and the seizures stopped about 6pm only to return with a lot more about 2am the following morning.

 

About 7pm Friday evening I went up to see how things were. Fred was sitting up in bed, dopey head on him but awake at least. Twelve hours on and he seemed to be pulling out of it.

 

“Hi Fred,” I said, delighted to see him awake.

 

“Dad?”

 

“Ya?”

 

“Where’s my breakfast”

 

What a man, he gets a kicking that would knock an army but wakes up with his priorities in the right place.

 

The two came down for ‘breakfast’ and we spent a peaceful evening watching TV.

 

About 10.30pm we went to bed, I was now going toDublinat 5am, all going to plan. Fred cuddled into me as I read him some stories and the two of us rolled unto our pillows looking for sleep not long afterwards.

 

When Lisa came to take over about 4.30am, Fred was awake. If he’d been awake all night, I’m not sure. At one stage he did wake me to stop snoring…

 

In Dublin Conor and Cathy looked after me, as only they can. It was late Sunday evening by the time I got home, about 9.30pm but I couldn’t wait to see my man as it felt like days since I’d seen him.

 

Unfortunately, he was asleep. Friday had taken a lot out of him and it does take a few days of sleep for him to recover fully.

 

Now we’re getting ready for another trip to Dublin. Fred has an appointment in Temple  Street tomorrow morning, part of the psychological assessment process he has to go through. We’ll be imposing on Conor and Cathy again; the two are quickly becoming part of Fred’s story.

 

Fred for one can’t wait to get up to Inchicore, he woke this morning full of excitement about going to see the two.

 

Somehow I don’t think he’ll be so excited about going to Temple Street in the morning though…

 

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7Apr/130

Lisa the Brave

Now it’s Sunday morning and all is quiet. It has been a good week for us. Freddie has been seizure free for eleven days, eleven whole days of our little boy being just our little boy. Fred is sitting on the couch, under a blanket cuddled up to his Mum and playing with his Godzilla toys. The poor mother is under the weather, not wine induced but a bad cold; she’s talking about taking to the bed, which in fairness doesn’t happen too often...

 

Why the epilepsy has left him alone is anyone’s guess. The increase in his meds must be a factor. Lisa only finished increasing the daily dose, as recommended by Dr Shahwan, on Monday. It’s always good to phase in the increase as it cuts down on any possible side effects or at least it makes any possible side effects easier to spot. As Fred is on tablets it means Lisa has to cut little slivers off the tablet, increasing the sliver size weekly and adding them to his daily dose. It took about two weeks to add the .25grm to the recommended daily dose. Maybe this has had its effect or maybe it’s only the honeymoon effect of adding more medication, only time will tell, for now we’ll happily take the eleven days of normality.

 

One side effect did make a return this week. Yes, the dreaded temper tantrums returned, hopefully for one week only. On Tuesday Ruby went off on her Easter travels, a night out in Tara’s and then the two, joined by Hannah, were off to Waterford for the rest of the week. This left Fred at home with his parents. Sometimes this makes me very sentimental. Yes I miss Ruby when she’s away, something I’ll have to get used to as she gets older, but it also brings all our attention on Freddie, it’s just him and his parents, he becomes our sole focus of those days. On Tuesday evening, Lisa took Freddie off to bed and I stayed watching TV. About 11pm, I heard slamming of doors and raised voices. Having a good idea of what was happening I quickly shut up for the night and by the time I was finished, Fred was standing at the foot of the stairs….He was in a rage, fists clenched, arms fully extended tight in by his sides. In his eyes, his beautiful brown eyes, I could see that look of determination, his pure anger at whatever had happened…

 

“What are you doing?” I asked…

 

“I’m sick of Mum,” was all he could get out, by now he was shaking with rage.

 

Then he swapped insults with his mother up the stairs, it always amazes me how two who love each other so much can fall out so completely, so quickly.

 

“You’re a big baby…”

 

“No you’re the big baby...”

 

Such high class insults…it seemed it all began with Fred not going to sleep on time and then reacting to Lisa telling him off. The rage kicked in and his feisty mother wasn’t in the mood for backing down either, too late at night for compromise apparently.

 

So the two of us cuddled up in bed. It took about three stories before he’d calmed down enough to go to sleep but he wasn’t backing down on his upset with Mummy…

 

“I’m fed up with her, she makes me so cross,”  were his last words before going off to sleep.

 

The next morning all was forgotten but it took a couple of hours for them to get back together. Fred wasn’t for forgiving until Mummy said sorry, as if it was all Mummy’s fault. Sorry doesn’t feature much in his mother’s vocabulary either…

 

This continued for the rest of the week. At work I got a phonecall from Fred one morning, telling me how much he hated Mummy and he wasn’t doing homework. Later in the week, Lisa and Freddie collected me at lunchtime. Back at the house, Fred went straight into a rage and ran off to the rocks a bit away from the house. Now it wouldn’t be much of a worry normally but if Fred had a seizure that much away from the house, it would be difficult getting him back home safely. Also, he could bang his head or fall between rocks, making it even more difficult to get him out. We’ve been in similar situations in the past, still frightens the living daylights out of me…

 

No end of coaxing or threats from me could get him out. Usually his mother gets the brunt of it and I’m the one he responds to, but not this time. Lisa took over and sat with him while he calmed down, he has to go through the rage, let it subside before he can put it behind him. Thankfully, this time the rage didn’t last too long and soon he was walking back with Lisa, and saying sorry for being bold.

 

That was lunchtime Thursday and all has been quiet since. On Friday I went down to Waterford to collect the ladies and was half expecting to come home to a bloodbath after the two had been left alone for the day, but no, the moods must have passed for now.

 

The other side of this has been Lisa getting on with the normalisation process. As recommended byTemple Street, we’re trying to get back to leading an ordinary life. Easier said than done. We’ve been so scarred by all the bad happenings of the last few years that we’re worried of doing the slightest thing away from the safety of home. Lisa has been the brave one here, I’m still nervous going out into the back garden…

 

Lisa the brave took Fred off to the beach during the week. They collected shells and strolled around without a care in the world. At least Fred didn’t have any worries, which was great. I’m sure Lisa was beside herself with worry but fought the urges and went back the next day. These little things mean so much to Freddie and hopefully I’ll get the strength someday soon to do it on our own. With the summer coming it would be wonderful if we could spend some days on the beach instead of locked up at home.

That is if we get a summer.

 

For now we’re enjoying the free days, the days where epilepsy doesn’t feature and Fred has a normal life.

 

Its nearly lunchtime and Fred is doing his drawings, Ruby is watching reruns of Friends and the weather is changing.

 

No beach trips today for the little man.

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