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

31Aug/140

First Week Back

Well Fred and Ruby are downstairs lying out on the couch. Fred is watching the new Godzilla movie and Ruby is reading while also on her phone. We were all up comparatively early this morning, a product of getting back to school this week. The two were back on Thursday, Fred to the familiar Blennerville and Ruby to the new surroundings of Gael Cholaiste Chiarrai.

Before all the school going though we had a journey to Dublin. On Monday evening Lisa got a call from Temple Street. As they were all getting back to normal we had a choice. Either go to Dublin the next morning or wait until the six month check-up in October. Lisa and I were anxious to have the VNS checked as Fred’s pattern has been a bit erratic lately. Suzanne, the VNS nurse, was fully booked for the next morning but if we turned up she would make time to see us. Fred’s check-ups only take a few minutes so we decided to take Suzanne up on her offer.

At 7am Tuesday morning we were up and on the road by 7.30am. Fred was a bit shell shocked; this summer has been the first where we’ve felt comfortable with him having a lie-in. So much has changed in the last while but there was a time when we stuck to the strictest of morning routines. Partly out of fear that too much sleep might trigger a cluster and also we couldn’t relax leaving him in bed alone. These holidays though he has been sleeping until gone 9.00am, coming down sleepy headed for a late breakfast before starting his day.

In the back of the car he snuggled up to his mother, pulled a blanket over himself and drifted back to sleep. Every now and again he’d wake to ask where we were or where was next but he slept most of the way. By the time we reached Rathcoole he was well rested and sat up for the rest of the journey. It felt strange not to be calling to Cathy and Conor but this was a mission; get the job done and get home was the goal.

At Temple Street it was packed. The waiting room was full of screaming kids and stressed parents. Luckily as soon as Suzanne knew that we were there she made time for us. Still thirty minutes of bedlam was enough for anyone. The staff at Temple Street has always been so welcoming and it was so very reassuring to see Suzanne’s smile one more. Once in her office she took Fred off to be weighed before we got down to a catch up.

We tried to give as accurate a rundown of the last few months as possible and Suzanne took many notes. Her answer to Fred’s recent pattern was instead of upping the output to increase the frequency of the VNS coming on. In essence this is what Lisa and I have been doing by swiping him with the magnet at regular intervals. Now she changed the timings from every five minutes to every three minutes, a proper method of what we had been doing, 24 hours a d day, seven days a week.

The idea behind this is to tackle that cycle of seventeen to twenty-one days which has been Fred’s normality for the past few months. Maybe the more regular output will help stabilise his brain, which has always been the plan. Instead of upping the output which may have side effects and run the battery down quicker than scheduled, an increased frequency may do the job. Only time will tell. Now that we are getting some sort of control over the seizures and clusters maybe we can push the frequency a bit too.

Here’s hoping....

Once the session was finished we headed down to the Basement Cafe for lunch, a favourite with Fred. We were back on the road by 1pm and home by 4.30pm. The day had passed in such a haze of activity that we just collapsed into the front room after dinner and all were in bed by 10pm.

Wednesday was a day of getting ready for the dreaded back to school. We had left it so late with Ruby that she only had a meeting with her new school principal that morning. Both parties suitable impressed and he left us with a “See you tomorrow.” Nothing like leaving things to the last minute. Lisa took Ruby out uniform shopping while Fred and I took it easy. It’s been a good summer; Fred has had a few setbacks but nothing we couldn’t fix. Now at the end he didn’t want to go back to school, a good healthy attitude and a sign that all is ok.

Thursday and Friday were all about getting up and out the door by 8.45. Now that Ruby is at school in Tralee there aren’t any more early rises and aiming to be in the car by 8.05am. It wasn’t really the early mornings more the driving, nearly 500km a week and ten hours on the road that we dreaded. That was all before weekend trips or maybe having to out in the evenings if she had training or a match after school. We did it though, three years of those daily trips and that is all behind us now.

As I drove Fred over to school Thursday morning he let it slip that he was excited about going back to school. At Blennerville he walked in, head up and smiling, as if he’d never been away. The kids all welcomed him back and Fred sat in next to Jaden ready for the day. No more half days or three-quarter days; it’s full on until 2.30pm from now for our boy and he’ll be all the better for it too. It’s important for Fred to be among his peers, learn from example of what is expected of him and in the process get his life back. On Friday morning Lisa went back to the car to get his jacket but Fred continued on, walked in on his own, just as any boy his age would do.

Oh the normality of it all.

Yesterday Jaden came over. Fred had asked him after school and of course the J man said yes. Lately his visits weren’t great, Jaden being very quiet in himself, happy but only wanting to play on his tablet. The visit yesterday was very successful; the two played outside, watched a few movies and did their own thing when tired of each other.  Jaden stayed for dinner and afterwards they played outside again. Lisa went to round them up at going home time and found a drenched Freddie walking home. The two had been playing at the broken pipe on the green and Jaden had turned it on Fred. Good old fashioned messing and great to see.

Lisa took Jaden home while Freddie and I went to change.

“I nearly drowned,” Fred said, getting out of his wet clothes.

Nothing wrong with that boy’s imagination.

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24Aug/140

Picking Blackas

When Fred’s epilepsy began to overtake out life, shocking us into almost a total retreat from day to day activities, Ruby kept us going. Her involvement in normal life, sports, dancing, having friends over kept the house alive and our focus off Fred’s condition. She still does it in her own way, keeping her parents on their toes but it hasn’t been an easy few years for her either. The changes have affected her just as much as it has affected us but she has dealt with it all with a maturity beyond her years. This week we had to break the news that she couldn’t keep going to school in Dingle, it has become inpracticable, but she understood and got on with the change. There were tears but mainly from her parents at having to ask her to change schools when she hadn’t done anything wrong and at her taking it so well. We’d been putting it off all summer, scared at upsetting her and ruining her holidays. Her response was to reprimand us for always leaving things to the last minute...so very true.

Earlier in the week Lisa and Ruby had gone to Waterford for the last time this summer. Rudi was going back to the US of A and the two were driving the Gaulke family to Shannon early Wednesday morning. This left Fred and me at home, a chance for the men to enjoy the last of the summer wine. Funnily enough when they left Monday afternoon I couldn’t think of a time before when Fred and I had two nights at home alone. Certainly not since the move to Tralee.

So after the last of the dancing girls left Tuesday morning and after we’d taken the empty champagne bottles to the recycling the two of us went to the library. Fred has become resigned to the hour of reading now, not that he doesn’t kick up a fuss, but he knows it’s a losing battle and all went well. His reading is much improved, though still he wanders off to Fredland looking out the window or staring off into the distance. I think we spent almost two hours there on Tuesday, me browsing, Fred drawing pictures and reading his books.

Back home we had lunch and afterwards Fred went out to play. The kids in the estate are younger than Fred and he tends to stay at the periphery but he is safe, which gives me a bit of time to work. When I was finished we went of picking blackberries. One of the strongest memories of my mother is the two of us setting off ‘up the fields’ to pick ‘blackas,’ as they were known. The sight of a blackberry juice stain can send me back over forty two years when all was ok with the world. With my father’s crooked walking stick we’d pull down the best branches at the top of the bushes and fill the big red mixing bowl before struggling home.

Fred was a bit sceptical of leaving the fun around Springwell Gardens but he came anyway. The two of us set off up the mountain roads behind Ballyard and our first job was to find the blackberry bushes. Fred, probably like most kids today, had no idea what we were looking for but when we found a good spot he got stuck in. The hunt for the fruit, trying to fill his bowl quicker than Daddy soon had him hooked. He had his wellies on but took off the gloves as they were slowing him down. Even after a few minutes he ignored the constant pricks of the thorns and concentrated on getting the fruit.

Once one spot was cleaned out we drove on to find other ones, Fred the lookout for the bushes. About two hours we spent up and down the little lanes, getting bemused looks from passing drivers but having great fun. Even when our bowls were nearly full Fred wanted to keep going and I think it was hunger in the end that got him home. The little man sat in the front seat proud as punch at our harvest and couldn’t wait to show Mummy when she came home.

The two of us had our dinner and settled in for the night. Before going to bed we went outside to look at the stars, Fred spotting the few that were out, as he does most nights. In bed I read him a story and as he turned over to go to sleep he said...

“Dad?”

“Yes?”

“I had fun today picking the blackberries.”

Such a simple little time but hopefully one that will stick in his memory.

When our two ladies came home on Wednesday Fred showed them the big bowl and they were suitable impressed.

Later I asked him to help with making the jam.

“No thanks, you do it,” was the response from the front room.

Mummy was home and she needed to be cuddled.

Yesterday all was forgotten though and Fred was banished to his room for the afternoon. A row had broken out between the two of us, culminating in his throwing a fair sized stone at me in a fit of anger. He was frog marched home and sent to bed. It took the three of us to get him up the stairs such was his anger, anger that came out of almost nothing.

Later when all had calmed down I asked him why he got so angry. It’s a worry of mine that Fred’s temper can boil over so quickly, though rarely, and that he can become so intransigent for the time it lasts. A lot I reckon is to do with frustration and boredom, of not being able to lead a normal life.

“The anger is in my head and my legs,” he answered me, “I can’t stop it.”

Getting back to school this week and mixing with the kids should help. There will be a special effort to get Fred involved again and maybe get more friends over. More routine and more play will help but also the two of us were working on anger control yesterday; maybe that will help too. As Fred gets older his frustrations will increase so there is a lot of work ahead of him.

I’ve said it before, but it’s not easy being a Fred.

 

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17Aug/140

Bizarro World

On Tuesday I drove over to Waterford to collect Ruby. It felt like she’d been gone forever and certainly Freddie was missing his big sister. He’d have a hung dog look on his face and sit silently waiting to be asked why so. Or else he may just be quiet for a long while again waiting to be asked why so sad...

“You’re very quiet Fred,” I’d say, “are you ok?”

At the forefront of our minds at all times is that question, is Fred ok? Any sign out of the normal and he’s quizzed, sometimes by both parents in a matter of seconds. Impatiently he’ll normally answer...

“I’m fine!” and the exasperation has got stronger in recent times.

So when asked this week it was answered with:

“I miss my sister,” followed by short tears or at least sobbing, depending on the mood.

Fred though also misses his friends. Jaden hasn’t been in the form to come over much and Fred was only beginning to make new friends when school finished for the year. Not that Fred is in any hurry to go back to school; whenever it’s mentioned he says he’s not going back. He did make new friends last school year and we’ll have to work on getting them over once they start again. Socializing is vital to Fred’s return to normal life and he is great company. Being with friends his own age can only help too with speech development and a general awareness of his place in the world.

Before I left on Tuesday the two of us did a few chores around town. It was day 22 of his current seizure rotation and though I was aware of this I still wanted us to do jobs together. So we went to the bottle recycling, the post office and the library. Fred was a bit out of it but nothing that he couldn’t shake himself of when called upon.

Saying goodbye as always was difficult but the promise of getting Ruby sweetened the pill. When I called home not long after arriving in West Waterford, Fred was sleeping off an attack of confusion, the first for a while but not surprising. Going to bed that night my phone lost coverage and I could only hope that all was ok.  For Lisa and I the shock of having to go to the hospital on the last cluster was lurking in the back of our minds. The last thing we wanted was for that to become the norm again.

On Wednesday morning I got a call from Lisa. All was fine and they were preparing for speech therapy. Day 23 had been reached; the old record had been matched. Now the hope was to make Day 24 and set a new record. After a day of working in Waterford I set off back to Tralee, a very tired Ruby in the seat beside me. She’d been up late all week, talking with her aunts and cousins, going on shopping trips and visiting relations. All in all a tiring time for my darling daughter and we weren’t twenty minutes on the road before she nodded off.

We were home by about 6.30pm and Fred was in his mother’s arms on the couch when we walked in the door. He jumped up to greet us but I could tell from the way Lisa guided him that all wasn’t ok. They’d gone to speech therapy at which Fred did very well. Afterwards they’d gone shopping but just as they finished Fred got the jitters, his body jerking and eyes flickering.  Lisa swiped with the magnet and got him to the car.

Back in the house she continued to swipe but a seizure broke through about 1.30pm. Afterwards Fred fell into his deep sleep and Lisa continued with the swiping regime. Thankfully that was it and if I didn’t know any better I wouldn’t have guessed he’d had a seizure.

Mummy was now dispensed with and Daddy was called to cuddle him...

“I don’t want her,” he said of the mother who’d nursed him all afternoon.

Poor Lisa gets all the grief.

We had dinner; Fred even had two helpings, allowed under the circumstances. Fred and Lisa went to bed about 9.30pm, Lisa allowed back into his good graces and went I went up an hour later he was fast asleep. Lisa had been swiping him and I continued to do so. We put down a peaceful night, me jumping at the slightest movement but nothing happened, Fred was over the worst. What a contrast from 23 days earlier.

The next day though he was still out of it, getting regular attacks of confusion and not himself by any means. When I came home from a job I was on Fred was asleep on the couch again. Out of nowhere two seizures had struck, about an hour between them. This was unusual but not too surprising considering how he’d been all day. In fact the way he was on Thursday was how Fred can be when a cluster is beginning and Wednesday was more like a day after. Bizarro world but then nothing is unusual with our Fred.

That was it though. He woke about 7pm and had a bowl of pasta. Later he fell back to sleep but made it peacefully through the night. Friday he was much improved and today he’s the same old Fred, full of fun and enjoying a lazy Sunday.

Last night when Lisa was talking with one of the neighbours it was mentioned that soon it will be ‘back to school.’

Fred, inside the house turned and looked at me...

“I’m not going back to school,” he said.

A new battle looms on the horizon...

 

 

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10Aug/140

What comes after Macroom?

Another week of Fred’s holidays. Seven days of nothing to do and all day to do it. Mind you Fred found plenty of opportunity to fight with his Mum or get in trouble with his Dad. That last cluster has affected us and knocked us out of the relaxed state into which we’d slipped. If Lisa is with Fred she is constantly out on the estate looking for him or just watching the man. When I’m in charge I try to encourage him inside which isn’t fair on him at all.

On Friday morning I was in my office on the top floor and could see Lisa looking around for Fred over by the green. It was obvious she couldn’t see him and I was trying not to get anxious. One of the men cutting the grass pointed to a spot behind the houses, a blind spot really. From my window I watched Lisa disappear down the nook and waited for her to come back into view. I waited and I waited. Just as I was getting out of my seat to run out the two reappeared. Fred carrying a big bunch of sticks which he struggled across the tarmac with and dropped into the boot of the car. Down I went to investigate and it turned out he’d been collecting wood for Aunty Clare’s fire; Friday was also the day we were going on a little holiday.

All week Fred was asking of when we were going to Aunty Clare’s house. It was all he wanted to do, go to Aunty Clare’s, have dinner, sleep there, see Granddad Jimmy and Uncle Bill. We had planned on Tuesday but I had work commitments and though I drove down it was only to drop Ruby before I headed to Dublin. When I got back Wednesday evening Fred was very cross that I’d slept in Aunty Clare’s house and wouldn’t talk to me. Poor little man just didn’t want to be left out and it was worthless trying to explain.

The other side of the proposed trip is that any misdemeanour or dissent, no matter how small was met with “there’ll be no Aunty Clare’s if...”It worked to an extent as Fred was much more open to going to the library or speech therapy. Fred’s normal reaction to any formal appointment is to say no but this week the alternative wasn’t worth contemplating. We’ll have to see if the spirit of cooperation will carry over to this week.

Fred has been getting speech therapy,on and off for the last year, to help with his conversational skills . The problem with Fred’s condition, a mixture of the meds, the epilepsy and just being a boy, is that his concentration is very poor. Fred will be in mid-conversation and he’ll just drift away...

“Well, I was in the car with Mummy,” he’ll start to tell you about an incident...

Then silence. You’ll look at him but he’ll be distracted looking out the window or at a book or whatever is on the TV.

“Fred,” you’ll try to call him back

“Yes?” he’ll look at you, focusing on you slowly.

“Fred!” you’ll try again

“Yes my Dad?”

“What happened with Mummy?”

“What?”

“Turn off the TV and tell me about being in the car with Mummy,” for TV you can substitute book, window, computer etc.

“Oh all right,” he’ll say resignedly before starting back at “well, I was in the car with Mummy and ...” at which stage you’ll probably get the full story.

So the speech therapy is all about listening, concentrating and finishing conversations. All very difficult when your brain is doped with strong meds, working at a slower rate and trying to keep up with the pace of what is happening. When Fred is drawing or building something there isn’t any delay; it just seems to affect him when listening and in conversation.

Friday we were ready to go.

“I’m so excited about going to Aunty Clare’s!” Fred exclaimed when he woke.

All morning was about preparing. Packing the car with his toys, the firewood and anything else needed. After breakfast Fred asked what were the towns we were going through to get to Waterford. He got his little spiral notebook and pen. I called out each town, spelled it slowly and Fred transcribed, putting a little box after each one. It was in his hand all morning and when it was time to leave Fred had it to the ready.

“What town is first?” he asked, more than once.

“Killarney,” I answered.

When we reached Killarney it was ticked off and the next one was asked about and the next until we passed Dungarven, all more than once. Luckily Fred had a snooze along the way...

Fred knows the beginning of the lane to Aunty Clare’s as ‘Aunty Clare’s trees’ and after passing Dungarven he began looking for them. About twenty minutes later the shout of “Aunty Clare’s trees,” came from the back and we had arrived.

The hugs and kisses were monumental; Aunty Clare was knocked off her feet. Everyone else was greeted; the boxes of toys brought in and the chatting began. After a big dinner, lots of wine and more chatting, it was nearly 11pm. Fred and I went off to bed, the tired but very contented little man was asleep in my arms within minutes.

During the night Fred rolled over in his deep sleep...

“What comes after Macroom?” he asked for about the twentieth time that day.

Yesterday evening we came home after visiting Granddad Jimmy.

In bed, just before going to sleep Fred said...

“I’m glad to be back home Dad.”

‘Níl aon tinteán mar do thinteán fein,’ I suppose.

 

 

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2Aug/140

The Tiny Teaspoon Expedition

This week has been one of those for which we long. A normal seven days of nothing much, just doing our jobs and getting on with life. As Ruby was away the house was quiet and when Lisa left us on Thursday it got even quieter. When I say ‘left us’ I mean just to Shannon to collect Rudi, not to her eternal reward, which I’m sure will be great.

Once Fred got used to having the couch to himself he began to miss Ruby. He had a long face on him and was moping around the room...

“What’s up?” I asked.

“I miss my sister,” he said through some fake sobbing but the sorrowful eyes told the true story.

Fred loves his sister and does miss her when she goes away, even if they spend their time bickering when she is around. Nothing unusual in that for families the world over.

As I had dropped the girls down to Waterford late on Sunday evening I stayed over. It was a treat really for me, cooking for the six women in the house and washing it all down with a couple of glasses of wine. That great feeling of relaxation that neither Lisa nor I get too often, knowing Fred is fine and being looked after while you kick back a bit. In the end I must have had more than a glass as I felt decidedly seedy driving home on Monday morning.

We started back at the library on Tuesday. Fred and I had been going regularly but visitors and epilepsy broke the routine recently. The visitors are a more than welcome diversion but not so the epilepsy. Strangely enough Fred picked up the reading again very quickly. Sometimes after he’s been through a bad cluster his memory is completely cleared but not so this time. Though as usual the concentration was poor initially and the idea of Jaden coming over was a distraction. It comes back to what his teachers raised during the year: if Fred knows something is happening in the near future he won’t concentrate on the present. So it was on Tuesday.

The two of us took our little seats at the kids reading table. Fred started on the first page but then stopped and started to look around...

“Fred?” I asked, “Are you ok?”

“What?” he answered.

“Are you ok?” I repeated.

“Yes, but when will collect Jaden?”

I’d made the mistake of saying his best friend could come over. To Fred that meant the countdown was on, that Jaden was due any minute. After a few stalls and stares out the window I had to put my foot down...

“If you don’t stop thinking about Jaden there won’t be any Jaden,” I said as sternly as possible.

“Ok my Dad” was the answer, followed by, “but when is he coming over?”

“What did I just say?”

“Ok my Dad.”

Lisa was out all day and I made an excuse that Jaden was in Listowel, visiting relations... As I had work to do I couldn’t look after the two of them but I promised we’d find him the next day.

Jaden eventually came over on Wednesday. The little man was very quiet in himself and though Lisa asked him, he did want to stay. He didn’t say much, went on his tablet and probably spent more time with Lisa than with Fred. Billy from across the way had his cousin Jack staying over and the two joined Freddie to play battles. Jaden played for a while but was happier inside talking to Lisa and helping to clean the windows. At the end of the evening he wanted to stay longer but it was time for Fred to settle down for the night and Lisa took him home. We suppose he just wanted a quiet time and playing with the kids wasn’t for him that day. Hopefully when he next comes over all will be fine.

On Thursday Lisa left early for Shannon and the two men had the house to themselves. We had a long lazy breakfast before I went to my office to catch up with work. At around midday we went off to the library for more reading. I had promised Fred that if he did well all week there would be a day off on Friday. A promise he didn’t forget...

“Is today the last day?” he asked on the drive over.

After a great session of reading we drove home through town. Lisa rang and I pulled over outside the park to take the call. While I was talking Fred was looking out the window and after I finished he asked if we could go for a walk. Out we got and walked around but not until I gave him a few good swipes of the magnet. It was beautiful. The Rose Garden was in full bloom and Fred loved wandering among the beds, sniffing the different colour blooms. Back in May when the weather turned good Lisa and Fred had had a couple of picnics in the park. I suggested to Fred that we’d come back with Lisa and Ruby for a picnic next week, to which he didn’t seem that bothered. Maybe if Jaden was involved he might had agreed, but then that would be the preoccupation for the next seven days.

Back home we had lunch and I did some more work. Later Fred and I went for a drive but stopped for an ice cream first. Fred brought a tea spoon from home and had it in his pocket walking into the shop. It took him about an hour to choose the right one but back in the car he pulled off the lid and took out the spoon. He was a very quiet boy on the drive, eating the tub spoonful by tiny spoonful until it was all gone. That was why he wanted the spoon and that particular small one too.

After dinner we watched movies and on our way to bed went to look at the stars. There wasn’t much to see as the cloud cover was heavy. Coming back into the house Freddie ran ahead and up to the bedroom.  Once my teeth were washed, I got myself ready for bed. Fred was sitting in the middle of the bed looking worried.

“Dad I got the confusion,” he told me.

In I got, swiped the battery and cuddled him to me. Soon he was calm and it seemed the confusion had passed.

“All that running gave me the confusion, I’m sorry,” he said turning over to his pillow.

We don’t know if running affects his brain but Fred certainly doesn’t have to apologise for anything.

The sweet little man.

 

 

 

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