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

26May/130

Home Lunch

Another Sunday and another week has gone by. Today is day fourteen since Fred’s last cluster of seizures so we’re expecting something to happen any moment. It’s not something we’ve spoken of but both Lisa and I know it is coming and probably have been on alert since Wednesday. Fred likes to turn convention on its head and do things his way so you never know when he’ll succumb. The last couple of mornings I’ve woken thinking is this the day and tried to leave it at that, we have to live around the epilepsy not let it dominate us. Even when I was thinking on Friday of what beer I’d get in to keep me company when watching the Champions League Final Saturday evening , the thought struck me that a few months ago I wouldn’t even have planned a day ahead. There is a bit of confidence returning to our lives, just a little but enough to let us live a bit.

Fred’s return to school has contributed a lot to this. He’s getting on with life again, loving it and events that would have filled us with dread are losing a bit of their fear. This week he went up to the two hour mark in the mornings. This included the 10.30am break, what we used to call elevenses. This ten to fifteen minute break is also a time for the kids to have a snack, usually half a sandwich from what I can see. A good way to keep the kids sated till lunchtime and also to feed the kids who may have missed breakfast. So Monday was the first day of this break for Freddie, probably the first time he’d been in a school playground in four years. Lisa was on school duty and she was beside herself with worry. The small kids aren’t allowed run around much as the yard is small and there are a lot of kids, so at least the chance of Fred keeling over when playing tag was eliminated. Plus his SNA, Denise, the softest touch Fred could wish for, was to be with him at all times. These mornings she comes out to the car and walks him in and walks him out again at home time. So at 10.30 they all came out, Fred with his new friends Jayden, Joshua and Daniel along with the 100 or so other kids of Blennerville National School. Lisa was up to the high doh, trying not to be the mother hen but watching his every move from behind her Kindle. They played basketball and each time Denise’s head disappeared from view Lisa held her breath till it popped up again.

At home I was waiting, doing some work and trying to rationalise everything. When the two walked in a little before eleven I was at the door...Fred sauntered by, schoolbag on his back, laptop bag in his hand...

“Oh, Hi Dad,” he said in passing.

“How did you get on?”

“Oh, fine”

“Were you outside?

“Ya,” as if it was the most normal thing he’d ever done, which it should be, but hasn’t.

“Dad I was playing basketball!” he said, excited by the memory of it.

“With who?” I asked.

“Oh just Jayden, Daniel and Joshua.”

The first morning was over and it was such a relief that it went so normally, as if it was something he’s been doing for the last four years without thought. His poor mother followed from the car, not looking as carefree as Fred but glad too that another milestone has been passed. Fred was in the sitting room, taking off the uniform, that was over with for another day.

“Mum,” he shouted, “can I have my lunch?”

This was the beginning of another of Fred’s little phrases, another look at how Fred sees the world. As the week went on he’d go off with a sandwich and bottle of water each morning and then look for another lunch when he came home, as if the effort of school had him famished. Soon he came up with a term for it... “Home lunch”...as he said when I asked him Wednesday had he not eaten his lunch already he said “that was my school lunch now it’s time for my home lunch.” He’s some little man for his phrases.

On Tuesday it was my turn to take him to school. Denise came out and collected him and I tried reading my magazine while waiting for him. At 10.30 all the kids came out, Fred and Denise a bit after them, he must have been finishing his school lunch, and soon the boyz were playing basketball. So as not to be in the way of the others they play in a corner, just out of vision from the road. Now I could see how Lisa was so worried the day before, the man was playing basketball and you couldn’t keep a close eye on him. Come 10.40 the kids were still out so I thought they must be out till 10.45, but that time came and went. As did 10.50. 'What are they up to?' I thought, sitting in the car getting more and more nervous by the passing minute.10.55, 56, 57, 58, 59 came and went, I was getting worried now. Then at 11.01 the girl ringing the bell came round, as it was such a fine day the teachers gave the kids an extra 15 minutes outside. Despite my fears I was delighted with the idea. Now they all lined up to walk back into the classroom. I watched Fred; Denise had to walk him up and explain what they were doing...he wandered away once but she got him back. Conformity definitely isn’t in Fred’s make-up; the idea of standing in line isn't for him. Then when inline I saw the hand go into his pocket and he squeezed something out to show the kid I now know is Jayden. It was his collection of SpongeBob Squarepants cards; he’d had them in there all morning and waited his chance to show them. Jayden looked suitably impressed.

When we got back home a very tearful and worried looking mother met us at the door. As we were so late, it was nearly 11.30 she feared the worst had happened. Fred tried to breeze past but was caught up in a big relieved hug from Lisa. He wasn’t that interested, just wanted his ‘home lunch.’

On Thursday Fred managed to chip his glasses frames and went to school with then taped up, just a small bit but enough.  Lisa made an appointment with the eye doctor. In his early years Fred had gone through about five pairs due to circumstances but we’d managed on these ones for about three years. Off we went after lunch, back doing another normal activity. Not long ago the idea of going out, sitting in a waiting room would have filled us with dread.  Fred sat in the chair and chatted with the man, reeling off the letters when asked and only stumbled over the last lines. While Fred needs glasses his eyesight is still very good. Fred now had it in his head that he was getting new glasses and when we went to the opticians with the prescription he went straight up to the optician...”excuse me but I need new glasses, black ones.” His little eyes pleading that not even the hardest heart could say no.

Now we’re on day fourteen. Fred had a tiny frontal lobe last night as he fell asleep. So small that I hardly noticed it but we took it as a sign that the cycle was coming round. At 4.30am this morning Lisa came in with his meds in an attempt to at least ease him into the day of seizures we were expecting...

“I don’t want to go to school,” he said in his sleep as we roused him.

Poor little man, he now knows which day is what, which is excellent and he wasn’t about to be caught out.

He had four more tiny ones before we got up at 8am.

What will happen now? We don’t know, he’s twitchy and a bit dopey but his mother has him cuddled up next to her...

If and when something hits he couldn’t be in safer hands.

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19May/130

The Blennerville Card School

It has been a week since Fred’s last seizure, well almost. The curious condition that is epilepsy seems to have Fred on a two week cycle at the moment and the last few times he’s had a bad day the epilepsy has signed off with one last seizure, just as you think the little man is out of the woods. Last Sunday Fred was put through the wringer but as always he fought back and about 6pm he asked to get out of bed. He came downstairs, wrecked after a day of about eight big seizures and a few small ones thrown in for good measure. Plus he’d had a shot of diazepam to try stopping the cluster and an extra tablet of Rivitrol.
For the next couple of hours he sat, mouth open in a daze and watched TV. About 8pm he asked me if we could go to bed as he was tired. After the day he’d had and all he could complain of was of being a little tired, some man...so I took him up. At this stage the last big seizure hadn’t hit, I was fully expecting it at some stage. Lisa and Ruby were watching The Vampire Diaries and Lisa said she’d come up later to take over. One of my many oddities is that if I go to bed before 11pm I just can’t get to sleep, so 8pm was far too early. Lisa the wonder woman knows me well enough at this stage, so the offer of letting me come back down later was much appreciated. Not that I didn’t love being cuddled up with my man, him sleeping and me reading, also the weather was terrible which makes it even cosier being in bed. Now Lisa had spent the day with him, nursed him through each and every seizure, while Ruby and I tried to have a normal Sunday. Selfless is too small a word for what she does on these days...
So about 10pm Lisa came up and took over. When Freddie had gone to sleep, almost immediately we got into bed, I was fully expecting that last seizure. It quite often comes on him when falling into a deep sleep, not this time though. After watching some TV and reading the paper for a while, I took over again and once more Lisa offered to spend the night with Freddie but I sent her up to her bed. I probably fell asleep almost immediately; I do remember waking at one stage with my book open on my chest, like a comedy stereotype of a sleepy Grand Dad. Then at exactly 3.45am the big seizure struck, that last one which we’d been expecting since the night before. Epilepsy just doesn’t give up. I called Lisa, she took over again, neither of us said it but we were both hoping it was the last one and not the start of another cluster...you never know with epilepsy.
At 7am I got up to make the breakfast and take Ruby to school. Freddie had slept soundly since the seizure and Lisa was sitting up reading her Kindle. Just before Ruby and I left for school the two came downstairs, Mr Sleepyhead and his beautiful mother.
“How are doing?” I asked.
“Fine,” he answered, slightly annoyed that I was asking.
When I got back from Dingle he had had his breakfast, it takes a day or two for his appetite to return fully but he still doesn’t like to miss a meal if at all possible. The little man stayed awake during the day watching TV and doing his own thing. All Lisa wanted to do was snooze; she’d had a long 36 hours or so of being on guard and deserved every stolen nap she managed.
On Tuesday we were off to Dublin again, for more neuropsychological assessment with the excellent Cathy Madigan. To keep with the mantra of getting Freddie back to a normal life and to keep epilepsy as just an inconvenience, the little man went to school for the morning. As usual he loved it and the fact he went really helped to put Sunday to the back of our minds. A small thing maybe, but it really helps normalise our lives that bit more. We set off about 2pm, the car full of Freddie’s toys and the obligatory food parcel for the Inchicore Two. When all this is behind us I think the UN would do well to employ Lisa for delivering food relief to troubled parts of the world. Fearless, with a brain for logistics and a timeless beauty, what more would they need.
On the way up Fred had a snooze, just a small one, most of the time he looked out at the passing countryside and asked every so often “where are we now?” In no time at all we were in Dublin and Fred ran from the car straight to Conor and Cathy’s door. Conor was given the biggest hug and Fred went in looking for Cathy. As he was out he spent the next while out watering the back garden and then took up a spot by the front window to look out for Cathy. When he saw he arrive he ran out to give her her big hug and walked her in home.
The rest of the evening was spent laughing, eating and a little drinking. These trips to Dublin have become real tonics for us, we all relax and put the bad days behind us...all part of the normalization process. As it got dark Conor took me for a walk around the estate they live in. Built in the 19th century by the GSWR for their employees on the railways, it’s a unique part of old Ireland. The fact that there are 240 houses with just one narrow road in and out, makes it feel like a hideaway from the rest of the world.
It certainly is for the Verling family.
On Wednesday we set off for Temple Street. Lisa was bit hung over, the result of a few carefree glasses of wine, only what she deserved after the Sunday she’d put down. Fred was looking forward to seeing the other Cathy in his life, not as much as Cathy Berry, but he’s resigned to the fact that these trips are all part of him getting better.
The little man spent two hours before lunch with Cathy and then we went down for lunch in the basement restaurant. In truth I think this is the real reason Fred likes Temple Street, the chance for lunch in a restaurant. It’s a great place with excellent food and the staff are all true Dub women. They really care about doing the job well and outside of preparing good food they always give large helpings, they know you’re not there for the fun of it.
After lunch Cathy took Fred for another session. She wasn’t expecting this to be a long one as she thought he was a little tired. Once again he confounded the sceptics and did a good hour and a half. Afterwards Cathy called us in for a summary of where she thinks we are. This is a no punches barred session, Cathy tells us it as she sees it and she’s the expert. As parents we know Freddie and know he is full of potential but Cathy is there as a dose of reality.
Cathy was amazed at his progress. Freddie was scoring 9 in tests that only two months ago he was getting 3. As Conor had said the night before he sees a much more confident Freddie than he saw in January and Cathy Madigan agreed. His walking is much improved, his speech is clearer and he is much more alert. She was delighted that Conor and Cathy had seen the difference too, it confirmed her thoughts. The one thing I’ve noticed recently is that Fred is now taking his time with talking, if he can’t remember a word he’ll wait for his brain to retrieve it rather than blurt out an incorrect sentence. You can actually see him stopping and thinking or waiting for the right word.
We believe all this improvement is down to a few factors. The longer breaks between seizures no doubt helps enormously, the balance of medication that Dr Shahwan has him on must help too. A big help is the return to school, just getting him out with other kids is jolting his brain into action. The normalization process, the trips to the beach, going into shops, being outside playing, all these many things must be adding to this alert Freddie we’re getting back.
The improvements have been so great that Cathy can’t yet produce a final report for the surgical team. The report has to be accurate to the nth degree, no ifs, buts or maybes. In fact during lunch I met Dr Shahwan in the restaurant and he remarked that the work Cathy is doing is almost more important than the surgery itself.
We are so lucky to have got in with the team in Temple Street, so, so lucky. Because Cathy wants to do more work we’ll have at least one more trip to see her. If she thinks it will take ten more trips then we’ll be there.
On Friday I took Freddie to school. He’s now up to an hour and a half. His SNA now comes out to collect him and walks him in, bag on his back and laptop under his arm, quite the scholar. While I was waiting Pam and Ed Galvin stopped for a coffee on their way to Dublin. I couldn’t leave my station so the three of us stood on the footpath in Blennerville, drinking our coffees while Freddie did his learning inside. It’s a funny life we live at the moment but all our friends combine to work around it and every bit helps.
At 10.30am the kids came out on a break but no sign of Freddie. The headmaster came out to say he was busy playing cards and would be a few minutes, then his teacher came out to apologise too. There was no need to apologise, the idea that Freddie was inside playing cards with his new friends was the sort of thing we’ve been wishing for, for the last five years, if I had to wait till three o’clock I would have gladly done so...
“Who were you playing with?” I asked when he came out.
“Oh just Joshua, Daniel and a girl,” was Fred’s nonchalant answer.
The fact his answer was so matter of fact, the fact he has friends he can talk about, the fact he’s started a card school, make for such a normal life for our Fred.
All in all it makes everything just about right.

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12May/130

A Curious Condition

Epilepsy is a curious condition. We’ve gotten to know it intimately over the years, unfortunately for Freddie a little too intimately, but still it seems like we hardly know it at all. Lisa and I have tried predicting when it may strike so as to ward off a seizure attack. Fred went through phase a few years ago of having seizures just as he woke. So we started waking him at 6am, giving him his medicine and getting him out of bed. The poor little fellow, bewildered but doing as his parents wanted, went along with our madness. For a while we thought we had it licked, then of course, the epilepsy started hitting at 5.30am, it was as if it knew we were trying to outsmart it. Then about 5pm became the attack time so we started giving him his medicines about 4pm. No such luck it moved to 3pm ish. To counteract that we started splitting medicine times to three times a day, which worked for a while but only until the epilepsy figured out what was happening. Fred has tried numerous medicines, some worked for a while before the epilepsy got around them. The diet worked well for a while but it cracked that one too. You could spend a lifetime trying to outsmart it, people have but it keeps coming back for more.

 

Recently Fred’s epilepsy has been on a 14-day rota and when it hits, it hits badly. We’ll take the 14-day turnaround if the epilepsy will keep its end of the bargain. Freddie got up to seventeen days free, down to ten days but all is better than the every three days and the constant jerking he was suffering towards the end of last year. This time I think it’s due to the addition of the Rivitrol, just before Christmas, to his dose of Tegretol. The honeymoon period that you get with the introduction of a new medicine is long over, Dr Shahwan has increased the daily intake and we’re living with the break, for as long as it lasts.

 

As we’ve been on the new seizure schedule for a couple of months now and yesterday was two weeks since the last time, the last few days were spent waiting. Lisa and I knew it was coming and even on Thursday Fred was obviously not himself. Though he did go to school and came home full of excitement about the tin whistles….

 

“Dad,” he looked up at me, eyes open, “you won’t believe it! All the kids at school had instruments.”

 

When did instruments come into his vocab and how come he can say it so perfectly but still calls his DVD player his “d player.”  Our Fred is full of surprises.

 

I gave him a big hug, one of those ones where I just don’t want to stop squeezing, we’ve waited for these moments for over four years now.

 

“Can I get a tin whistle?” the big brown eyes looking sad and pleading at defenceless me.

 

“Of course, of course…”

 

That afternoon, after Elaine came around for his two hours of home tutoring, we went out shopping. Fred has Elaine wrapped around that little finger of his. The laughing and joking coming from the front room wasn’t what I remembered education to be about. At one stage he was laughing so much, I thought a seizure would be the next thing to happen. It was great to hear him laugh so much and Elaine sounded like she was enjoying it too. Turned out they had a deal going, Elaine would write a line of sums and every time Fred got one right, he’d get a tickle.

 

It must have been a long line of sums and the boy genius must have got them all right.

 

On our trip out in the car, even though we knew it was getting close to the two-week mark, we put it out of our minds and carried on regardless, we saw the sights of Tralee. The veg shop, the butchers, the off licence,  they were all visited but the one shop that sold tin whistles didn’t have any free parking outside. So we had to come home, empty handed, the sad little man upset at not getting his instrument. When it came time to collect Ruby from school Freddie came with me, we were going to give it another shot. This time Ruby popped in, Fred and I parked illegally and waited for her. When the big sister came back with the brown paper bag, he was over the moon. Then he blew on it and the memories of how horrible a sound it can make when not playing a tune rushed back. Fred and I made a deal, he wouldn’t play with it till his teacher in school showed him how, we were both happy with this and when we got home he put it in his school bag.

 

Thursday night Fred felt sick and didn’t want his dinner. Unusual for him and a sign that something was building up in his head. He slept for a while in the early evening and woke about 9pm, somewhat better but only wanted a slice of toast. As he had slept already, the two of us didn’t go to bed till about 10.30pm and then we sat up reading stories. Its one of our favourite things but we haven’t had time to do it lately as he’s normally so tired after a day at school he drops off about 9pm. Fred even found a book we’d never read before, normally he likes the tried an trusted old favourites but the new school going man wanted a new read.

 

On Friday morning I was expecting a seizure to strike and was awake about 5am, the old boy scout in me was being prepared. Nothing happened but he wasn’t himself when he woke later. The little jerks were there, not too badly but there nonetheless. He got up about 7.15am and really wanted to go to school. I was in favour of him going but Lisa, rightly so, didn’t want to push our luck just for the sake of a couple of hours in the classroom. If something was to happen, it is best for it to happen where we’re in control, where we can keep the drama to a minimum. Ruby and I left for Dingle, the little man pleading to go to school but when I returned he was happily cuddled up to his Mum, playing Godzilla battles.

 

Friday continued as a normal day, a few rows with his Mum and a big dinner of shepherd’s pie to make up for the missed one of the night before.

 

Going to bed Friday evening was a strange event, if viewed from the outside. Lisa and I were both aware that the two weeks were up the next day and that lately the day begins badly. We discussed what we’d do and how we’d just have to go through it, or Freddie would, we’d just be there to help him. It felt a bit strange planning for a day of hell.

 

Then nothing happened, a clear day. Fred passed the fourteen-day mark.

 

So Sunday would be the day.

 

At about 4.30am this morning the seizures began. Two little frontal lobe ones, no more than five seconds each but I woke instantly. Nothing to do but call Lisa. She gave him his morning meds; maybe they’d get to work and help him through the day. Fred rolled over and cuddled back into me, sighing at having being disturbed.

 

He slept soundly for the next couple of hours till about 7.45am when he had another two, slightly longer. Lisa came down and took over and about 8.15 I went down to make breakfast. I made Fred his boiled egg too, just in case he got up. Ruby came down and had hers; I brought Lisa up a coffee. Then at exactly 9am a big seizure struck. It was inevitable, probably, but still, I hate that sound, Ruby and both knew immediately what was happening.

Now it’s nearly noon. Fred has had two more big ones and a few small ones. Lisa, the wonderful woman that she is, is sitting in the bed with him, nursing him through the day. I’m up and down the stairs but Lisa doesn’t want me fussing around, disturbing the little man. In truth there is little I can do.

 

There is little either of us can do, just sit and wait it out, mind our little boy.

 

Fred is the hero, the one who has to go through it.

 

 

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6May/130

And Keith Was There Too

It’s a bank holiday Monday and we’re having a lazy weekend. So much so that when I went to lock up last night all doors were already locked, not one of us had stepped outside all day. A lost day but not like some of the lost days we’ve had in the last few years, all was ok, it just worked out that way. Fred has been good for the last week, fitting with the two-week cycle he’s slipped into over the last few months. Now it is May, nearly five months since we came under the wonderful team in Temple Street and our quality of life has improved immensely. Today we’re going on a drive, at Fred’s request, he loves the trips out and I think this is the first such drive in a couple of years. He was so unstable that a drive could set him off and in line with that, a fear built up in us. So it’s a family day out, ice creams and a trip to Fenit. Mind you it will only be a proper Verling family drive if we manage a row or two…

 

This week Freddie wanted me to take him to school. On Tuesday the two of us set off. Lisa took Ruby to school, leaving the house at 8am, the two men under strict instruction on how to behave. Following our instructions to the letter, the two of us were ready and out of the house by 8.35. Fred was full of excitement; he had the whole thing prepared…

 

“Now we’ll going in and I’ll say to my teacher ‘I have a surprise’, then you’ll come in…’surprise!’ was Fred’s plan.

 

I was so nervous about getting everything right that we left far too early. Fred gave me instructions as we drove…

 

“We go up the up road…” drive up the hill.

“Round and round to the straight road” take the bendy road till it straightens out.

 

The two of us were about ten minutes early, standing in Fred’s classroom waiting for the kids to come in. The kids were outside running around, it was great to hear them and I can’t wait for the day that Fred will be able to join them. Memories of my own school time came back to me too, thankfully for the kids of today the fear seems to be gone. When they all came in laughing and chatting, happy to be at school I could see Freddie is in the right place. Some of the kids said hello to him, a couple of earnest ones went straight to their desks and took out their books, other were busy chatting.

 

Fred introduced me to his SNA Denise and I think he has her wrapped already, afterwards she told me how they’d watched Godzilla on YouTube…

 

I slipped out and sat in the car. Now I know what Lisa goes through every day. Each time the door opened my heart jumped, any movement in the schoolyard and I was checking it out, my phone was checked every two seconds to make sure it was on. When Lisa came back from Dingle, she stopped for a chat. She was laughing at me being up to the high doh with worry, happy that she isn’t the only nut in the relationship.

 

When it came time to go in and collect him, why does time go so slowly in these cases, I had a look in the window first. Fred was busy doing drawing so I left them alone for a few minutes, eventually one of the other kids noticed me at the window and I was brought in to take the man home. Such a relief to be able to do these normal everyday activities, go to school, go to the beach, just ordinary things we would have seen as daily chores not long ago.

 

During the week, I went out to Dingle to do a few jobs and catch up with some OLD friends over fromEnglandfor the week. It was lovely to be someway relaxed, to be able to report good times with Freddie for a change. Of course we’re never fully relaxed but I think we’re learning to live with a certain amount of fear and its great for Fred. Over lunch with Trevor and friends, we went back over old times and told some good funny stories, most of them unrepeatable in print due to libel laws.

 

When I got home with Ruby all was ok, Fred was watching TV eating his dinner, just as things should be, just how we want them.

 

On Friday, I did the same trip again, except this time Tara and Hannah came home with us. Fred was over the moon having the girls over and soon had them on the couch, cuddled up between them, just how he likes it. The girls are very fond of him too and they love his little ways, he always gets a laugh with the two. They went home on Saturday but Fred’s disappointment was offset by the visit of Trev, Glenn and Gaye, who called in on their way home. Not long ago we would have been full of fear of someone calling over in case the excitement set Fred off. This year though Fred met the visitors at the door, shook their hands and was the perfect host. Even when they left he walked them to the door, waving them off before carrying on with his day.

 

What a difference a bit of confidence makes.

 

Just now Fred came in from the garden with his fingers covered in nettle stings. He didn’t know what had happened him, he asked Lisa to take the stings out. I went and got some doc leaves, the usual cure for nettle stings. Now he’s sitting on the couch looking sad and his fingers wrapped in giant doc leaves.

 

Getting stung by nettles, fingers wrapped in doc leaves, all part of a boy’s growing up and a welcome part of Fred’s normalization process.

 

Fred mightn’t appreciate the nettle stings but I’m delighted he’s getting these experiences in eventually.

 

Far better than a lot of the little man’s experiences so far in his life.

 

 

 

 

 

 

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