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

27Apr/140

Away From Fred

This week for the first time in a long time, I voluntarily spent a night away from Fred. It must have been at least five years, possibly Ger Flood’s wedding, that I last dared socialize away from home. On this occasion it was Conor’s fiftieth and the chance to celebrate with friends was just too good to let pass. So I made the trip to Dublin, surprised by how relaxed I felt, how far we’d come and I really enjoyed myself. Fred on the other hand cried because he missed his Daddy, the boy knows how to pull on the heart strings.

When I came back last night the hugs and cuddles nearly knocked me off my feet. As we cuddled in bed, my eyes heavy from not sleeping, Fred kept up the emotional warfare...

“I missed you my Dad,” he said, “I don’t want you to go away again, I missed you so much.”

Surprisingly though I was quite relaxed. My worries I pushed below the surface, knowing that Lisa was in charge. Though each time the phone rang I got a fright and each time I called Lisa I listened not to her beautiful voice but to hear sounds of Freddie in the background, just to know that all was fine in Ballyard. All was good; the man was fighting with his Mum, going out playing with friends and getting confusion.

His Daddy too was going out playing with friends, laughing, eating, drinking and telling stories; giving him a different type of confusion on Saturday. Thankfully the train trip back to Tralee gave me a chance to recover and enjoy the evening at home, though we were in bed by 9.30pm, asleep by ten.

This last week of the Easter holidays has been great, passing all sorts of records for normality. Fred has been playing each day with the kids on the estate, they were even calling over to ask him to come outside. Fred loved it but for some reason or other he kept getting confusion. One of us would be keeping an eye on him, checking on him from time to time and at least once a day he’d have to come back inside for a rest. In a way this is great, he’s getting the warning signs, heeding them and resting up until the worst has passed. You can tell all is not ok as he turns for home, almost dragging his feet and has a lost look on his face. A short snooze on the couch, a swipe with the magnet and he’s out again. We both worry, want to keep him in but we know we can’t, we have to let him off, doing what he loves doing.

Once again he’s got all the kids into digging for dinosaur bones. Fred dragged my old tool box over to the rocks and before we knew it all the kids were banging away with him. After a few close misses I took the two claw hammers back, being responsible for creating a batch of one eyed kids was just too worrying. Jaden was over a few times as well and he seemed to enjoy it as much as the others. Our Jaden also came up with the idea of giving his phone number to Lisa so that when they are out, Lisa can call the man for reassurance. Such a good idea and I don’t know if he did for practical reasons or just the make Lisa feel better, but what a sweetheart.

It’s funny how much Jaden has become part of the household. He just breezes in and relaxes us all while he relaxes too. Jaden likes his curries hot and shares mine with me, he likes to chew on a coffee bean and have a mint tea while watching TV. This week he even began to reprimand Lisa for leaving her phone in the bathroom or for having it covered in make-up, all done with a smile on his face.

On Thursday evening I took him home at about 7.30pm. He was upset to be going but I explained that as I was collecting Ruby from a match it made sense to do the two at the same time. At the match they were only mid way through the first half so I turned around to drop Jaden home...

“Can’t I go back and play with Freddie?” he asked and I wanted to but it was getting on to 8pm so I drove him home. A very quiet boy got out at his house, upset at his day being cut short.

Even though Fred is on holidays Lisa has been trying to keep up his school work. This makes perfect sense as he is as likely to forget what he’s learned and he made such good progress up to holidays, it would be a shame for him to slip. Of course this met with a lot of resistance and he managed to get out of it most days, between playing and confusion attacks. Though a couple of mornings he did his work and did it very well.  We’ll see how that continues with Denise and Ms O’Se tomorrow...

There are times when I look at Fred, especially when he’s with friends, that I think about the dual task of being Fred’s parent and his carer. Usually the roles are merged into one but there are times that he is Fred the boy with epilepsy instead of being Freddie my son with epilepsy. The father wants him to have a great life and also wants to protect him, nothing unusual in that but the carer only sees Fred as the boy with epilepsy. When Fred is out playing with friends, or even when he’s in watching a movie it strikes me I miss that he is the boy being himself, the Freddie that we all adore and I only see the epilepsy patient. In a way, the years of living with epilepsy have done that and the advances of the last year have let the son come to the fore again.

The fact that Fred has come through all the changes in his life and is even more determined to have a normal life is testament to his strength of character. There are many, many times I’m reminded that he is too just a normal kid, looking for a normal life. Though I know he is strong, it will take enormous strength for him to achieve his potential. This strength he has, it’s his Dad’s reserves that are under pressure, and if anyone can get us through it will be Fred, with Jayden pushing us on...

This week Fred mastered what he called the CarBike. A sit down, three wheeled go-kart with a front wheel which you peddle and you steer by leaning from side to side. For the first day he wasn’t getting anywhere but by Sunday afternoon he was whizzing around the estate, careering around corners and parking up outside the house like a Lewis Hamilton. Lisa and I loved watching him, though filled with trepidation.

This was our boy being a boy.

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20Apr/140

Trains, Go-Karts and The Easter Bunny

This week Fred went on the train to Dublin. We had an appointment at Temple Street, the six month check-up; it has been that long since the VNS was inserted in Fred’s chest. One of the benefits of the VNS is that Dr Amre runs the out-patient clinics so not only were we getting a review of the VNS progress but also the team was getting to catch up on Fred’s case. Of course everyone was getting updates on his status but when no news is good news the face to face is important for all those involved, team and parents. It keeps us all on the same page, to use the language of corporate speak.

On Thursday we were up at 6am. Well poor Fred was dragged out of the bed about 6.20am and the three of us bounced up the road to be in the station by 6.50am. Despite a minor row in the ticket office, we were on the train by 7.00am. Lisa as Fred’s official carer was given a travel pass for allow for free rail journeys. Under an anomaly we had to pay for Fred. Not the end of the world but the bureaucracy of the system had me arguing with the station master. Why Lisa had free travel and Fred, the reason Lisa is an official carer, did not, just wouldn’t be dealt with by the official. The problem lay with the issuer of the travel pass, Fred’s name wasn’t on the pass, but time was when a train inspector would see the problem and rectify it himself. The fear of making a decision and dealing with the consequences outweighed the sense to do the right thing. Surely he could see that Lisa wasn’t over sixty-five and why else would she have the pass?

Anyway we weren’t going to let officialdom ruin Fred’s first train trip. Strictly speaking it wasn’t his first. We did go from Stansted Airport to Liverpool Street on a London trip, when Fred was just three years old and epilepsy was just a term you’d see in a book. Fred however doesn’t remember that one, we barely do, and so this was his first proper train journey. We sat at a table seat, Lisa and Fred on one side, me on the other side. Not long after we sat down the train slid away from the platform, we were on our way. One of the best bits of train travel for me is to stare out the window, watching the world go by. Once we got beyond the station Fred asked for the computer...

“Don’t you want to look out the window, see all the fields?” asked Lisa.

“No,” said Fred, “I just want to watch the Godzilla battles.”

This was Fred’s idea of heaven, the laptop all to himself, no Ruby to disturb him and the promise of breakfast to come.

It has been busy week for Fred. Now that he is on holidays and the sun is shining he’s keen to go outside to play. Time was when that filled Lisa and I with fear. How many times in the past have we lifted him off the ground, carried an unconscious little man back into the house? But we have to let him off, trust that Fred will deal with the confusion if it hits and not pretend all is ok. All part of making epilepsy just an incidental in Fred’s life. We did it last summer; this season, with the VNS and Fred a year older, we have to let him off. This year Fred has the confidence to approach the kids on the estate, to ask them to play and to follow their lead. “The girls” as he calls the group have been wary of him, they don’t know who is this boy and he’s being taking a softly, softly approach to getting to know them. When Jaden has been over the two can play together but it’s not easy trying to break into a group of girls. Not that it will get any easier as he gets older...

After about half an hour on the train hunger set in, we had been up early but had skipped on breakfast. From the buffet carriage we got coffee, a sandwich and a breakfast bap for Fred. This he reluctantly shared with his Mum. Now the idea of heaven had become a reality: on the train, watching Godzilla and eating a bap stuffed with rasher, egg and mushrooms.  The next stop was at Mallow and a woman from the Cork train took the free seat next to me. Fred was getting tired and when finished the bap he snuggled up to his Mum to complete his sleeping.

All week he’s been sleeping in but we’re conscious of not letting Fred lose his sleep pattern. As Dr Amre reiterated at the meeting, regular sleep is vital and sleep deprivation is a huge trigger for seizures. So Fred is going to bed a bit later now that school is on holidays but we’re only letting him sleep in until 9 o’clock at the latest. Most mornings he’s been getting up without being called or at least without much coercion.

This morning he’s been on an egg hunt. This was organized by the mother across the way from us, Heidi, who is one of those super-moms, always with a trail of kids in tow and always gathering more to entertain. Fred was still in bed as I got up but when I came out from the kitchen a few minutes later, I found him on the stairs, putting on his socks. The other kids were out already, the sun was shining and he was eager to be joining them. Soon he was on the scooters and the three wheel go-karts that the kids have, speeding around the estate without a fear in the world. Who would have thought our man would be out go-karting this time last year? Certainly not his parents. After he came in for breakfast the call came to go back out, the Easter bunny had arrived, hiding chocolate all over the walls and in the bushes. Fred went off with the kids, finding the hidden treasures. All finds were put in a basket and evenly distributed back out among all the kids when the hunt was over. Fred asked Heidi if he could have a chocolate bunny lollipop for Jaden. One was given and Fred put it in his pocket, to keep for his friend who is never far from his mind.

On the train Fred woke just as we approached Dublin. As we trundled through Inchicore I called Conor, who was picking us up and taking us to Temple Street. Another treat for Fred, I hadn’t told him and so he was doubly excited. Conor picked us up outside and Fred jumped. Chatting and laughing we headed off across the city, getting a guided tour of the spots along the way. In an all too quick time Conor dropped us at the hospital; we said our goodbyes and headed up to neurology.

Not long after checking in Cathy Madigan called us to her office. It had been a few months since she’d seem Fred, probably last August, and she was delighted with the change in the man. His stature, his walk, his whole appearance has improved dramatically and she noticed this immediately. Of course the VNS has been a big factor but Cathy’s hard work and setting us on the path last spring has been crucial. We had a good meeting, everything was discussed, education, social life, Jaden, reading, speech and plans for the future. It sounded like we were boasting but there was so much to tell of Fred’s progress and how proud we were of him, the effort he has put in to get himself better. Cathy though was only delighted and for once we had a meeting with her that didn’t involve tears.

The same was true of the meeting with Dr Amre. He was astounded by how much Fred has come on, the changes in a year he thinks are little short of incredible. As both he and Cathy said, we are with Fred all day and don’t always notice but to them he’s a different boy. Suzanne put up Fred’s VNS to the next level and it may be that he will stay at that output for a while. The VNS, at a good level, may take time to show all its benefits so it might be worth leaving the machine do work over time. Both Suzanne and Dr Amre were conscious too of preserving the battery life and if the VNS can do a job at a lower level, so much the better. Fred’s output is at about half of what Temple Street considers a maximum; there is plenty of room if needed. For now we may just let time do its job.

After the meeting we had lunch in Fred’s favourite cafe, The Basement Cafe, in the hospital. He feels safe there, knows where everything is and the food is good. Coming on 2pm we left, the man at the desk called a taxi and before we knew it we were on the 3pm train back to Tralee. The train was packed but we found a seat. Lisa slept; Fred drew pictures and even looked out the window for a while between watching YouTube. We were home by 6.45pm, Ruby was waiting for us and the family was in bed by 10pm. I tried reading but my eyes were too heavy, Fred was already asleep beside me and soon I joined him. All in all a very successful trip and first proper train journey for our Fred.

Now he’s downstairs having lunch. The estate is quiet; all the kids are in resting after the morning. No doubt Fred and the friends will be out later, playing in the sun and having go-kart races. Just like any normal day. In fact Fred’s legs are covered in plasters; he managed to fall a few times and grazed the knees, just like any other little boy.

The chocolate from the bunny and the cuddles from his Mummy will help the healing.

I might go look for some of that myself.

 

 

 

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13Apr/140

A Life More Ordinary

Two full weeks in a row for Fred at school, in fact 3 weeks but the first one was only three days long due to holidays. No coming home early due to confusion, no late starts, no days off and the poor man didn’t even get to dodge Ms O’Se in the afternoon with one of his excuses.  We are seeing something of a transition in our boy, going from permanently zonked to an ordinary eleven year old. Of course there is more to do, more catching up and we have to be constantly on our guard still but Fred’s life is improving, bit by bit.

At school now Fred doesn’t want to stay inside at his desk, nor is he content with playing gentle games of throwing the ball. During the week I was on duty for break times and I watched as Fred and Denise went striding around the playground. Striding is the only word I could use. The two did laps of the school yard Fred with his head up, confident walk and going at speed. At one stage I saw Denise almost running and I immediately thought Fred had gone down. On looking I saw it was only Fred walking so fast that Denise had to pick up the pace. They’d stop to talk to other kids, play ball and even one morning Fred was jumping hurdles laid out on the yard. My heart was jumping hurdles too, a lot bigger ones than the foot high bars Fred was negotiating. Denise was probably worse than me and she got him away from them quickly enough.

Where all this confidence is coming from we’re not sure. The VNS must be helping, making him more aware of his surroundings, that fog his head has been is finally lifting. The school too have been making big efforts to move Fred on, get him out of his comfort zone. His teachers, “the women who care for me”, as Fred puts it, are very proactive and are always encouraging him. The other kids are great with Fred, everyone seems to know his name and he gets big hellos everywhere. The overall ethos though of the school is what matters; they all pull together as a team. Nothing is too big for them and a year on since his enrolment at Blennerville Fred has only blossomed under their care. Lisa and I don’t know how to fully express our gratitude but I can say with confidence that Blennerville National School has been the making of our Fred. Lisa did bake the most sumptuous cream buns for the staff on Friday as a small gesture but we really do owe them so much.

This week they went to the Aquadome for the usual swimming lessons. It didn’t even occur to me to be worried, it was just another bus trip for Fred. At Halloween I had followed the bus from the school to the museum, waited outside and followed it back again. On Wednesday I didn’t even leave the house, mind you he couldn’t have been closer but still the level of worry is way down. Lisa was at a cookery demonstration and I was at my desk, life couldn’t be more ordinary. Although, on Thursday Denise asked me if it was ok to take Fred on the egg-hunt the next morning. They were going to the playing field, about a five minute walk away and would be hunting for a half hour or so. I agreed but Lisa was worried, which got me worried. Fred is the important one though and so Friday morning I went down to keep guard while the hunt was on. 10am I was outside the school waiting for them to leave. By 10.15 they hadn’t come out and when the school came out for the mid-morning break at half ten, I rang Lisa. She didn’t know when they were going but thought it was at 10am too, so she texted Denise. The call came back, they’d been and gone. Fred was actually out doing the hunt when we thought he was at school. He found one of the eggs as well. Jayden found two though.

 

Not that it has been all plain sailing this week. Getting Fred out of bed is still a struggle some mornings and there have been plenty of “I don’t want to get up!” moments, perfectly natural for any boy. He still manages a fight with his mother most days about something or other. This week was worse than a lot of recent weeks and Lisa thinks it may be due to seizure build-up. It is a strange phenomenon but it does seem epilepsy builds up to breaking point and we were getting close to day 17. Day 17 seems to be the tipping point these days. Before recent improvements, the build up would include a lot of confusion, dizziness and headaches but those days seem to have given way to irritability. Fighting with his mother is standard but with me he usually doesn’t too much and he certainly doesn’t dare with Ruby.

However this week the old small things, like coming in when asked or being unhappy with dinner because it isn’t what he wanted, they all made a reappearance. On Tuesday he was upstairs in Lisa’s bedroom under the duvet watching a DVD, Fred does like his comforts. At about 7.30pm I went up to ask him to come down. Fred said he wanted to go outside to which I answered no as it was too late and he was in his pyjamas. Off he ran and when I got down the front door was open. Outside there was no sign of him but when I went around the corner he was standing in the classic male pose, legs spread and peeing in the neighbours flower beds. I had to swallow a laugh but still it wasn’t good. He looked up and saw me...”fuck” was all he said, quickly trying to put everything away, followed by “oh hi my Dad.”

He was strong armed in and sent to bed. Later when Lisa went to get him all he could say was “I hate being grounded.” That boy watches too many American movies. But tough love has been the order of the day for a while now. The zero tolerance policy of coming down hard on his immature behaviour has paid dividends. Lisa, I and Ruby are intent on pushing him on, making him use his brain and not allowing Fred to get away with being too childish any more. Not that we want him to be wearing a smoking jacket and espousing the sublime beauty of Yeats’ later works. Just no more getting into pyjamas as soon as he gets home from school, no outside in the evening in his pjs, no baby talk only proper conversation, doing what he’s asked, when he’s asked and so on. Small pieces of behaviour that should make him aware of his age. No doubt it is tough for Fred but he has really made an effort, this week’s irritability aside.

The little bits of bad behaviour became too much for me as the week went on.

On Thursday evening I asked for the remote control, to which Fred shook his head. This was after maybe two or three days of constant battles over the smallest things and I just gave up, walked away as I couldn’t bear to fight with my boy again. Ruby stepped in and handed me the remote. A few minutes later Fred came up to me. I explained that getting in fights over small things was just too much, not good and I’d had enough. Fred looked me straight in the eye, mano a mano, and I feared another row... But the little man just said, “Sorry, my Dad, I won’t do it again.” What could I do? Only open my arms and have the man cuddle in for the night.

That boy.

Yesterday morning, day 20 in the current round, a seizure hit at 5.29am. Not too unexpected but horrible all the same. Fred went through it and a couple more, well spaced apart and by 11am he was down sleeping on the couch. Lisa was swiping the VNS like there was no tomorrow and he did have a comfortable day. By about 5pm he’d had six in all but he was beginning to wake, a sign that maybe the worst is over. The amount of swiping could only have helped and by 8pm Fred was awake watching a DVD. Another cluster when we didn’t have to intervene with the Diazepam. The two of us went to bed about 10.30pm and though he had a few small, frontal lobe, two second long seizures he slept well. By about 2.30 am I gave up on the swiping as it seemed to wake him and the frontal lobes only kicked in when he was dropping off. One more little twitch later and he was in a deep sleep, so deep that he woke like a new boy this morning. He even got up before me and went down to his mother, just back from her run.

Yesterday was just one day in twenty. All the other days matter so much more. Though Jaden couldn’t come over he is doing so tomorrow. Lisa and I worked around the epilepsy, did our jobs and tried to have as normal a day as possible.

Whenever I looked at Fred yesterday I thought of our visit to the bank during the week, instead of thinking of the epilepsy. At the bank Fred had sat on one of the comfy seats, reading the book he’d gotten from the library. In the queue I looked over and saw my beautiful boy sitting up straight, book in hand and looking like any other eleven year old. When he caught me looking he smiled and waved.

“How did I do?” he asked afterwards.

“Excellent,” I answered.

We walked out hand in hand, carefree, back to the car.

That’s our Fred, the boy we love.

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6Apr/140

A Full Week of School

A full week at school for Fred, the first for a while. Between holidays, seizures, bugs and colds he just hasn’t had the full five days in a row for a while. It all went smoothly, Fred didn’t complain of tiredness or boredom, nor did he feign confusion to try slip out of going. In a way he was just accepting of this is what he has to do, get on with it and keep the parents happy. At school Denise, Terry, Olivia and Rose were all full of praise for how much he has come on but all thought that March had been a bit of a wipe out. Denise said how this week had been one of his best, Rose and Olivia agreed. ‘The women that care for me’ as he calls them were all in agreement. Terry, the principal, has a more removed role but in a meeting with Lisa he was saying how changed a boy he sees from the one who started twelve months ago. Maybe now that Fred knows there isn’t any escaping the routine he’ll take it all that more seriously.

Jaden still hasn’t forgiven Fred fully for the betrayal of his friendship with TJ. Poor TJ, who Fred hasn’t mentioned since, has been kicked to the side. Though Jaden is back on good terms with Fred he still refused to sit with Fred on the bus trip to the Aquadome. Fred was very upset and told me when he came home at lunchtime that he had to sit on his own on the bus. The idea of the little man, sitting on his own, looking out the window and not understanding why Jaden was still cross, really upset me but life can be tough on us all I suppose. Yesterday Jaden came over and was still with us when I arrived home from Cobh. A very quiet Jaden but one who didn’t want to go home when Lisa called time at 8pm so all must be ok in the camp. Fred was sad that Jaden had gone but understood as it was getting late.

He didn’t understand though when Mummy said it was bedtime at 9.30pm. Reluctantly he followed her up the stairs, asking me why as he left the room. As usual I explained that his brain needs the rest, he needs to do what he was told, he’d had a great day with Jado and 9.30pm was late enough for any young man.

Within five minutes he was back down...

“I don’t love that old lady anymore,” he said, standing in front of me, pointing upstairs to where his mother was waiting. Then I heard the door of his mother’s room close so I knew the row was gone beyond repair.

“Don’t you love your mother?” I asked, “the woman who cares for you, loves you, cuddles you, minds you when you faint, is always there for you?”

“I’m sick of her,” he declared, getting in under a blanket on the couch.

After I watched my program I started to tidy up and get ready for bed. Fred sat up on the couch and asked if I would read him a bedtime story. Though I love doing so I had to say no, explaining that as he had been bold and said horrible things about Mummy he had to go straight to sleep. As I put Lisa’s wine glass out to the kitchen I heard a “sorry” come from the edge of the couch. The two of us trudged up to bed and he was asleep in my arms within minutes. All the fighting must have exhausted him

This morning when I got up Fred said he wasn’t ready yet and I went off to make breakfast, telling Fred I’d call him when it was ready. When I went up to fetch him he wasn’t in bed and he wasn’t in the bathroom. Up in his mother’s bed I found him, cuddled up to her, telling her how beautiful she is and how much he loves her.

All was forgiven.

On the way to school during the week Fred was looking out the window while I was driving. The Burt Bacharach song “What the world needs now” came on the radio, just after a Martin Luther King clip. MLK was pouring his heart into the speech and I was reciting it along with him. Burt Bacharach segued in nicely after “my eyes have seen the glory.” After a few lines of me singing about love sweet love Fred spoke...

“Dad,” he said without turning his head.

“Yes?” I asked, thinking he may ask who had been talking on the radio or who was singing the beautiful song.

“Please stop singing, it’s hurting my ears.”

After I picked myself up off the floor we drove on to school.

Fred’s new activity, initiated by him, is to go for a walk at break times. Denise, Fred and Jaden go around the school a few times, Lisa watching from the car, convinced that he’ll keel over. It’s great that Fred wanted to do something outside of the games they’ve been playing, expressing himself and not letting our fears rule his life.

Long may that last.

 

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