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

28Jul/130

Best Birthday Present Ever

“Mum, is it almost Thursday?” Freddie asks for the umpteenth time today and its not even 2pm on Sunday.

 

Ever since we told Freddie that we’re going to Auntie Claire’s house next Thursday he’s been asking if it is “almost Thursday.” Almost is closer than nearly in Fred’s world. If we’re on our way anywhere almost is much better than nearly where his patience is concerned. Once we reach the outskirts of Tralee, the question comes from the back…

 

“Dad, when will we be in Dublin?”

 

“In about three hours, my boy.”

 

“Are we almost there?”

 

“No, Fred we’ve a bit to go yet.”

 

“But are we almost there?”

 

“Nearly,” I try to compromise.

 

But nearly is too long so usually I have to give in to almost and encourage him to sleep for a while. Usually once he hears the almost our man is happy.

 

Today he got told off for continually asking, and the threat of not going to Aunty Claire’s was issued if he asked again.  Fred just can’t wait to go though and he even packed his suitcase on Friday when he heard of the trip. Into the suitcase went his Godzillas and his pyjamas. Essential kit for travelling. Yesterday he was looking for a change of pyjamas but couldn’t find any as he’d packed them all away. This is all part of us trying to give Fred a concept of time. He doesn’t really have one but he’s learning this weekend about how long five nights takes and how almost may be better than nearly but it doesn’t bring next Thursday any closer. Maybe the ultimatum from his mother will help the brain figure it out…

 

Last Sunday Ruby had friends over, on their way to Waterford for a few days, and they came for lunch on Thursday on their return journey. Fred loves the girls, but was becoming a bit too demanding of their attention, so this week he just sat with them, happy to be in their company. Unfortunately, he’s discovering that teenage girls have little time for ten-year-old boys and being cute only goes a certain distance. I keep telling him he has to give the girls room, that they’ll come round eventually. A piece of advice he may not see the wisdom in for a few years yet.

 

Yesterday Fred had even more visitors. Aunty Ella and cousin Ben made the trip down from Cobh and spent a few hours with us. It is still such a relief for us that we can have visitors without having to worry about Fred keeling over. The normality of having visitors over is great and Fred is even getting used to it too. He got more presents, which he loves getting. No doubt soon they’ll be getting bashed by Godzilla but for now Spiderman is safe on his motorbike. Ben played walkie-talkies with Fred, one of the presents he got, and he spent a lot of time in the car playing. The visit went smoothly, Fred didn’t act up as he used to do in the early days of visitors and all in all it was a stress free day.

 

Fred was still a bit doped yesterday though. Tuesday night, the cluster we’d been waiting for since the weekend, broke through. It was sixteen days almost to the minute. The last time it was at 11.40pm, this week it was 11.05pm. He’d been fine all day but we were seeing a drop in his concentration and speech as the week progressed. He’d had a snooze earlier in the day and went to bed about 10pm with Lisa. I was downstairs locking up for the night when the first seizure hit. It’s a sound I’ll never not recognise or confuse with any other noise. That deep howling that follows a prolonged ‘aah’ must be unique to epilepsy, I doubt if it could be reproduced by anyone not in seizure.

 

As usual I rushed upstairs and of course Lisa was in control. The man came out of it after a minute or so and lay there unconscious while his body recovered. He shudders a lot afterwards, his breathing slows down to normal but can be quite stilted for a while, he may open his eyes but doesn’t react to anything. It looks like he’s in a deep trance. Lisa slid him onto his back and took over for the night. There is no point in me doing anything except making a cup of tea for Lisa. She has her way of looking after Freddie, of dealing with the cluster and I’m only a bit player. Fred will never know how his mother cared for him during these times but it is something truly wonderful what Lisa does for him. You’d think he’d appreciate it but Lisa is always the first to be given out to by the little man if things aren’t up to scratch during a normal day, but I think that’s the lot of a loving mother. In truth he adores his Mum and that’s all that matters.

 

Lisa stayed with him all night. I came down about 3am and he was sitting up looking dazed. He’d had five seizures at that stage and was fairly out of it. Lisa was waiting for one more to hit before giving him the Stesolid and no sooner than she’d spoken than it arrived. We made him comfortable and I went back up to bed.

 

I was back down at 6am. Lisa was heading off to Shannon to collect Rudi who was flying in for few weeks and driving her down to Waterford. I offered to do the trip, after all she had been up all night with Fred and it was lashing rain outside. Of course, as I already knew, Lisa wasn’t hearing anything of it. Off she went about 7am, looking like a million dollars and certainly nothing like a woman who’d been up all night nursing her boy. I took over beside Fred, he’d been seizure free since the Stesolid at 3am and he cuddled up with a smile on his face.

 

There we stayed all morning. Fred sleeping while I read, snoozed and browsed the internet. Its amazing how time goes when you’re caring for someone. About every hour, from ten-thirty on, he had a couple of frontal lobes. Tiny seizures that seem to finish before they even start. Each time he’d open his eyes, look at me and cuddle even closer to me. At 1pm I got up and made brunch with a pot of coffee. Eating it back in bed I thought the smell of food might rouse Fred, but he was in a deep sleep. After a bit more of Facebook, twitter and various news websites I drifted off too, only to be woken by a call from Lisa.

 

They had arrived safely at Aunty Claire’s but she was wrecked from the ordeal of it all. Not that she’d admit it but I could tell from her voice. After getting the reassurances that all was ok she left us alone. Fred was sleeping soundly and didn’t even wake when the phone rang.

 

Then about 3.40pm he had another big seizure, twelve hours since his last. This worried me. Was another cluster on its way or was this the ‘goodbye’ one we get most times. The frontal lobes had been getting smaller and less frequent as the day went on. This was out of the usual cycle, coming so late after the big cluster. He came through it ok and about ten minutes later I gave him his evening meds. It was a bit earlier than usual but Lisa had given him his morning ones a bit early too.

 

I struggled to get them in him, he was still very groggy. Eventually, after a change of top, he swallowed them and bizarrely he began to wake up. About 4.30pm he asked if we could get up. After a day in bed I was only too happy to give it a try and we inched our way downstairs. Fred dug out his DVD player and looked like nothing had happened.

 

“Do you want some food?” I asked.

 

“I’ll have my breakfast now,” was the reply, after all he’d just got out of bed I suppose.

 

So the two of us sat down to a big breakfast at 5pm. We demolished two plates of cheesy omelette, baked beans and fried new potato and Fred returned to his DVD player while I cleaned up. He was talking about having dinner later but in the end the big breakfast kept us going for the night.

 

About 9.30pm Fred was getting tired again so the two of us returned to the nest we’d left only five hours earlier. We sat up reading stories and Fred was fast asleep by ten o’clock. I thought I wouldn’t be able to sleep but I wasn’t long after him. It was still bright outside but I drifted off, happy that we’d gotten through the day ok.

 

At 6am, I woke Fred for his morning meds. He swallowed them and rolled over on his pillow. At 6.15am my phone went, a text from Lisa reminding me to give the meds and to wish me a ‘happy birthday.’

 

“Who was that?” Fred asked, obviously not that sleepy after the day before.

 

“Just Mummy,”

 

“What did she want?”

 

“To wish me a happy birthday.”

 

Fred sat up looking at me. A big smile broke across his little face. I looked at him and he broke into song…

 

“Happy Birthday to you, happy birthday to you,” he sang, cupping my face in his hands.

 

What a wonderful birthday present and totally unexpected.

The best birthday present ever.

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21Jul/130

Jayden

Its Sunday once again and Fred is in his element. Ruby has arrived back from a party back the west with not one, but three friends in tow. When I got home this morning he had all three of the girls on the couch, putting the chat on them and showing them his movie collection. A step-up from showing his etchings and he had them charmed. They went upstairs a couple of hours ago and he’s been waiting for them to come back down ever since. He has his golf clubs out and is going to teach them how to play later, he relaxed once they assured him they were staying over. A captive audience for the man to entertain.

 

It’s been another good week for the little man. Today is day 14 seizure free so Lisa and I have being watching him even closer than usually. No sign of any jitters though he has been a bit dopey from time to time, since Friday evening he’s been slightly off form but only slightly. From time to time his eyes will flicker which tells us something is on it’s way. It can wait though, none are us are in any hurry to see the man go through a seizure cluster even though we know it is inevitable.

 

This week saw Jayden come over for a couple of hours of playtime. Jayden, the new friend Freddie made at school. The gorgeous little fellow who Freddie couldn’t stop talking about after the first week. So excited was Fred that Jayden was coming over that he couldn’t remember his name….

 

“My friend Adrian is coming over,” he said on Wednesday after Lisa had organised the playtime.

 

“Jayden, Jayden, Jayden” Lisa and I would say over and over.

 

Fred would start again and get the name right.

 

Thursday morning and the first thing he said when he woke up was…

 

“I’m so excited that…” he stopped to think, give his brain a chance to catch up, “Jayden is coming over today.”

 

Downstairs he said to Lisa…

 

“I’ll be inside in the sitting room and you will say it like this, “Freddie! Your friend Jayden is here.”

 

The little man just couldn’t wait.

 

Eventually 11.30 came round and Jayden drove up with his Mum. The excitement was massive. Every toy was dragged out, every room visited and every game possible was played. By the time Jayden’s Mum came to collect him at 1.30 the two had had a great morning and the first playtime in four years had gone as smoothly as possible.

 

Freddie was very sad when Jayden had left…

 

“I miss my friend Jayden,” he’d say, eyes down, big sighs and a hangdog look to melt the hardest heart.

 

Thursday evening saw Freddie exhausted after it all and he fell asleep on his mothers lap by about 8.30pm.

 

Another landmark day in Fred’s getting back to normal.

 

We tried it again on Friday morning and the two had a great time again. However about 1pm the men came downstairs and Freddie didn’t look 100%. Lisa and I thought it best to be safe than sorry, not to have a playtime ruined, so Lisa called Jayden’s Mum. She collected him and in the end we only missed the last half hour of the allotted time. All in all not bad for such a momentous occasion. After Jayden left, Lisa and Freddie walked him to the car, on their way back inside Fred turned to Lisa…

 

“Can I have my lunch now?” he asked, not that disturbed by all the carry-on, thankfully.

 

On Monday Fred wanted to go to the ‘toy store.’ As he doesn’t get out too much and we are trying to get him out and about, the three of us set off. In the car I was thinking how great that we have the confidence to do these things. After all it’s only a trip in the car but so shattered has our confidence been that we avoided these trips. At the store he didn’t see anything he wanted. He’s gotten back into Yu-Gi-Oh cards recently, even wiped the floor with Conor on the trip the Dublin last week. Though I think Conor eventually clicked that he was consistently getting the low value cards. Unfortunately Yu-Gi-Oh is so last year and they don’t stock them anymore. Back in the car with us and over to the other shop in the centre of Tralee.

 

As the traffic was heavy and there wasn’t any parking, I jumped out to have a look in Caballs. Fred asked if he could come. A few months back I would have said no but I nodded and he jumped out too. Lisa drove off and the two of us were alone on the mean streets of Tralee. In the shop we found a plane on sale, which covered his budget of €5.00 and even had time for a look around. After a few minutes we were back on the street, waiting for Lisa and watching the crowds go by. Such a simple thing but lovely for us to do it again and without any fear. After about five minutes, Lisa drove up and in we jumped, Fred over the moon with his new plane, Dad happy that the trip to the shops had gone so well.

 

Such simple pleasures.

 

Fred still has Elaine coming over for thee hours a week. He claims not to like it and says he doesn’t want her over but once she arrives the two take over the front room. The laughing and giggling is worse than Ruby with her friends. Fred’s reading and speech is improving no end and despite himself, he’s doing well with Elaine. The sad news is that Elaine is leaving for Dublin in August as she got a fulltime job. We’re going to have to find a new Elaine which won’t be easy and I know Fred will miss her terribly.

 

Now the girls are back downstairs. Hungry and looking for food. Fred wants to play with them but they are too busy with Facebook on their phones and iPods. He’s looking longingly at them and it’s only a matter of time before he gets Hannah over on his side. She’s usually the one to crack first.

 

It has been a week of firsts for Freddie and having the girls around just tops it off nicely.

 

When they all leave tomorrow he’ll be far from happy.

 

Jayden will have to come again

 

 

 

 

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13Jul/130

The Love Of Paulie

Fred nearly made it to day 17. It would have equalled his best current record but it wasn’t to be. On Sunday evening Freddie went up to bed about 9.30pm, as usual, but when I followed about 10.30pm he still wasn’t fully settled. We read the ‘Friendliest Giant in Town’ and then Fred curled up in my arms to drift off to sleep. About 11.10 he asked “Dad, can I go to my own pillow?” The sweet boy thinks/ knows he’s doing me a favour by cuddling up to me in the bed. Soon afterwards I turned off the light and fell asleep myself. The current heat wave has me wrecked and sleep isn’t a problem these days.

About 11.40pm that all too familiar noise woke me from my light dozing. Eventually, after nearly three full days of waiting, epilepsy made an appearance. The seizure was a long, strong one and after turning on the light I held him as he went through it. After it was over I fixed him on his pillow and gave Lisa a call. As usual she took over, try stopping her, and I went upstairs to bed. About a half an hour later I heard a second one and came down to help. Lisa sent me away; she was in charge and was doing things her way, the way she knows best.  She nursed him through the next three hours and in all he had seven seizures before she gave him a shot of the Diazepam. Unfortunately we’ve learned that you have to let the cluster run its course before intervening. If you intervene too soon you may only prolong the attack as the epilepsy will keep coming back for a few more goes. Too late and you risk not being able to stop it at home and a trip to the hospital would be inevitable. Much and all that we love the staff of KGH, the less we see of them the better.

Funny how we welcomed the cluster, well maybe not welcomed but were certainly relieved that it had come when it did. As it had hit him overnight Fred woke on Monday almost unaware of what had happened. The only clue, I think, was that he was sore and a bit dopey. Also he didn’t have an appetite all day and had a couple of headaches. All in all he came through it ok.

On Monday morning Lisa got a call to say that an old family friend had died. May was 91 and her death not unexpected but still it upset Lisa that she was gone.  She had taught Lisa so much in her life from how to boil potatoes to how to wallpaper a room and Lisa wasn’t going to miss the funeral. As we were trying to work out how to manage things, Freddie had an appointment in Temple Street on Wednesday, I had an idea. Now that he’d had the cluster why didn’t we all go down to Waterford on Tuesday, stay overnight and travel up to Dublin Wednesday morning? It would give Freddie a chance to see all his cousins, Granddad Jimmy and of course Auntie Claire. We couldn’t see a downside to the idea and so it was done.

Fred was too excited for words when he heard we were off to Waterford. It has been about four years since we last went down and that has been too long for the little man. He slept on and off Monday and had a big long sleep Monday night.

Ruby had plans with friends so instead of dragging her around the country I dropped her out to Dingle. She was staying with friends and had a big match on Wednesday evening.  It is now Saturday afternoon and I haven’t seen her since she, Ali and Hannah sashayed off onto Ballydavid beach Monday lunchtime. The match was won, I know that much and I’m sure she’s having fun but when we’ll see her again I just don’t know.

Tuesday lunchtime we set off and it was roasting. Even with the air-conditioning on it was an uncomfortable journey and really we should have left either in the early morning or late evening. We arrived, baked, at about 4pm and Fred was delighted to be at Auntie Claire’s. Boonie was the only one there and Fred had a good look around to look for the others. If anything it was hotter down there than at home so I was conscious of keeping Fred in out of the heat. While too much heat isn’t good for some, it is certainly not the best for my little man. Eventually Auntie Claire arrived and got the biggest hug ever. Soon afterwards, in remarkably quick time for Shanahan women, Lisa, Claire and Boonie set off, leaving of course the barely supped mugs of tea behind. Soon afterwards Paulie arrived and Fred was beside himself with excitement. Paulie is a favourite and even came to see him when Fred was first in Temple Street earlier in the year. It seems like last year but it was only in mid January that we started our trips there.  Fred and Paulie went off to chat and get the TV working, as a distraction from him going out in the heat.

As it was getting on in the day I went and made dinner from whatever I could find. Fred and Paulie sat at the table and ate from the same big plate of fish fingers and pasta with pesto sauce. To say Freddie was in heaven would be putting it mildly. Sitting at the table with his cousin Paulie and both having the same dinner was just paradise for the little man. What was great for me, not just to watch, but that Fred didn’t need me, he was engrossed in Paulie and the sweet man that Paulie is he gave Fred his full attention. When they were finished Paul had outdoor jobs to do in the garden and Fred helped him, in between being called indoors by his ever worried and ever fussing Dad. Funnily enough I think that all the Vitamin D  Fred has being getting lately from the extra sunshine has done him the world of good, it’s just I don’t want him getting sunstroke in the bargain...

“Fred?”

“Yes my Daddy...”

“What are you doing?

“I’m doing Paulie jobs,” was the usual exasperated reply I’d get.

After Paulie had to go feed the horses, Freddie came in to watch some more TV. I checked on him after a few minutes and there he was in his throne. The armchair pulled up in front of the TV, footstool in front of him, legs up with a blanket over them and remote control in hand.

Such a sweet boy.

About 8.30pm Lisa and the girls arrived home, followed soon after by Granddad Jimmy, Rosarie, Aunty Helen and Cousin Susan. Fred ran out to give Granddad Jimmy a big hug and to ask where Paulie was. As Paulie wasn’t with them,  Fred went back to his throne. One by one guests would wander in for an audience and Freddie would tell them about what was on TV or ask on Paulie’s whereabouts. Beer, glasses of wine, cups of tea and GnTs were had and about 10pm Fred and I went off to bed.

Luckily as we were getting ready, Paulie drove up and Fred called him from the window. Paulie came straight up, kissed the man goodnight and promised to be around in the morning. As we were settling ourselves to sleep Fred said...

“Dad, I think I don’t want to go to Dublin.”

“No? Why not?”

“I think I want to stay here with my cousin Paulie.”

The little man just loves his cousin Paulie.

Wednesday morning we were up and out by 8.15am. Luckily Paulie, Boonie and Aunty Claire were up to say goodbye and a very sad Fred set off for Dublin. Just down the road we met Uncle Bill,an extra treat for the man, but didn’t make up for the leaving of them all behind. An uneventful but cooler journey had us in Dublin by 10.20am and a breakfast in Temple Street.

Thankfully all the excitement and heat hadn’t dulled Fred’s brain and he had a great session with Cathy Madigan. This was to be our last time with Cathy and Fred spent about three hours with her, breaking only for lunch. By now Cathy reckons she has enough to compile a report on Fred’s brain. The work Cathy has done has been invaluable to us and Fred of course. She has given us the courage and the belief to get back into living. Without her we wouldn’t have Fred back at school, back at the beach, out on drives, indeed we probably wouldn’t have even been to Waterford. So much is owed to her by us that I could never describe in full how much she has actually done.

We said our goodbyes with hugs and kisses. It’s not the end by any means with Cathy but, as fellow epilepsy suffer Winston Churchill said, ‘it’s the end of the beginning.’ The meeting of the surgery team won’t happen till the autumn so we won’t be all together again till probably September at the earliest.

Off we then went to Conor and Cathy’s. This too was our last visit for a while and even a few months ago it would have been unthinkable for us to go stay in someone else’s house. The stays there have been wonderful and the highlight of every trip to Dublin. We had a big dinner, more beers and wine and a lot of laughing before we all went off to bed about 11pm. These special sleepovers in Inchicore will be badly missed by us and not only because it gave us a chance to get a break away. As we said our goodbyes on Thursday morning the sun was beginning to beat down again, a big contrast from the first morning there when it was snowing as we left.

Hopefully it won’t be September before we see Conor and Cathy again. Our visits to Dublin have been made special by the stays in Inchicore, something we’ll never forget.

If all the promises of visits come true Fred will be inundated with guests over the next few weeks and hopefully it will be so. Paulie, Auntie Claire, Conor and Cathy, Ella and Ben, his brother Thomas, Granddad Jimmy and Rosarie...its going to be a busy house.

At the turn of the year Lisa and I couldn’t have dreamed of such a summer. Back then the dread of another year locked up trying to keep Freddie safe was all we could see ahead of us.

So much has changed and all for the better.

Thank you to all involved for making it so.

 

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7Jul/130

16 Not Out

It’s a really beautiful Sunday evening in Tralee and the Verling/Shanahan household is at peace. Ruby is watching some video on YouTube, Fred is watching Jaws 2 on his DVD player and Lisa is under a blanket reading her Kindle. I’ve been relegated to the second couch while the three beautiful people in my life are all settled on the other. Ruby is tired after a weekend on the beach and shopping; she had Ali over for the weekend so there was no end to the giggling. The two together are so funny; I’m scared to leave the room first in case they start on me as soon as the door is closed. Lisa was in stitches at their impressions last night; I pity the boys who try put the chat on those two.

 

It’s been a stressful weekend though and ironically so in the circumstances. Friday was Fred’s fourteenth day seizure free.  Recently it’s been a cycle of 13 or 14 days and 6 or 7 days on the shorter turnaround. So as the week went on Lisa and I were dreading the end as it approached. Thursday evening and things were going exactly to plan. Freddie started getting the ‘confusion’ as he went to bed. Par for the course and once again I was marvelling at how epilepsy can be so predictable at times… As I got into bed, Fred cuddled up and fell asleep in my arms. A deep sleep and in that deep sleep he stayed till the morning time, so deep that he didn’t stir as I got up.

 

This week I’ve been on a training course, Friday was my last day, and when I came home at 1pm I was expecting the seizures to have hit. No, our Fred was sitting up having lunch as if everything was good in the world. No reason why it wouldn’t be but day fourteen is normally the one when he suffers. That afternoon he spent outside under a tree in the garden, playing with his dinosaurs and Godzillas…he called it his ‘shade’ and was very happy in there out of the sun.

 

Lisa and I were at our worst, worrying about him, wanting him to be careful when up walking and checking on him all the time. He had the jitters, not too badly but enough to have us worried that a seizure was on its way. It’s a bit of throwback to a few months ago when were continuously on edge, always expecting something to happen. Now were are better, not much but a bit and on days like Friday we are on constant alert. Now that he has the freedom to roam about and we have the confidence to let him do so, he wanders off as much as possible. The problem is on bad days he could keel over anywhere and bang his head or break a bone or two. This happened a few weeks back and he still has the scars on his feet from scraping them on the tarmac during a seizure.

 

All this stress about what may happen led to a lot of snapping and fighting with Fred when trying to restrict his movements…

 

“Get in Fred…if you’re going out stay sitting down…don’t run…don’t go too far’ was all he got from his parents on Friday.

 

Of course he is a stubborn young man and doesn’t like to be under any constrictions. Personally, I blame the mother for his stubborn streak while she is very quick to say, “What is it about the Verling men that they won’t do what they are told?”

 

If I did what I was told after Lisa and I first met…..suffice to say we wouldn’t have celebrated 18 years together this June…

 

The longer the day went on the more we got worried about him but in true Freddie style he came through it unscathed. As we went to bed that night I was thinking how hard it is for him, epilepsy always waiting to strike and his parents always fussing over him like I don’t know what.

 

Saturday morning I was expecting to woken by a seizure but nothing happened. All day he was jerky but he kept it under control. As the day wore on he became very tired and a bit lost at times. Again, he spent it outside under the shade of the tree with his parents watching his every move. When I left to drive Ruby and Ali to the beach I fully expected to come home to an unconscious little man, but no he was still awake and fighting with his mother. At this stage Lisa and I were almost willing a seizure to strike, to get the event over with and let us back to another couple of weeks of not worrying too much about things.

 

Odd thing for us to be contemplating but having an expectation of when a seizure may strike, for the first time in years, has us on the rack a bit. The two-week gaps we’ve been getting have been wonderful especially now that the summer is upon us and Fred can be outside or at the beach. The other reason we want it out of the way is that we’re due a trip to Dublin this week and we’d like Fred to be at full capacity for Cathy Madigan. He has been so good lately, Elaine is delighted with him and his progress has been obvious to all of us. If things go wrong over the next couple of days the trip may have to be cancelled and on the selfish side that would mean we’d miss a night with to Inchicore…

 

Now it is Sunday evening and all is well. Fred has moved over to sit at my feet and is watching Bob the Builder, a sure sign that his brain is slowing down. The jerks seem to have stopped but he’s not himself. Ruby is fast asleep, stretched out, head on her mother’s lap.

 

Anyone looking in the window would think we’re the perfect family…

 

I wonder what it will be like in 24 hours time…

 

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