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

29Apr/120

Hope against Hope

This morning Lisa was outside trying to get Muttley into the car, so as to take him for a run in the woods. Listening to her trying to coax him into the boot reminded me of The Admiral Bar. When I was a kid, we used to sneak into the Admiral Bar on Cobh’s West Beach, aged about 15 or 16 we’d look around us, make sure there weren’t any parents about, slip through the front door and down the back. Always after school, never at the weekends, we’d throw our bags in a corner and just hang out. We never took alcohol, the bar owner knew us all plus we didn’t have any money, the hardest drink taken would have been instant coffee. No, we’d just sit around playing video games, pool, watch TV and listen to the jukebox. The Admiral was where I first heard Clearance Clearwater Revival, put on by Donal Randall, something a bit different from what was then on the radio all day and I group I’d still listen to from time to time. The Admiral was also where the Navy hung out, usually the guys in the Navy who weren’t from Cobh and certainly not the officers. When a navy ship was in from sea or leaving in the morning the bar would be full of men with Dublin accents, the air heavy with cigarette smoke and swearing. So listening to Lisa swearing at Muttley just now brought all those memories flooding back. It always amuses me that my beautiful, stylish, striking wife can swear like a navy listing of the 1980s. A woman who knows exactly what goes with what, what goes where, just the right make-up to wear, who still has the manners to call older people mr or mrs, can string a list of expletives together that would have got her barred from The Admiral and left the men blushing. The perfect lady.

Eventually I had to lift the dog into the car,  they went off to the woods, leaving the kids and me to get on with doing nothing. Ruby was yet again watching make-up videos on YouTube and at the same time texting her friends, probably messaging other ones on Facebook too. The king himself was in his throne, flicking through channels whilst having battles between Ben 10 characters and Godzillas.  Our week just gone by has been a relative quiet one. Freddie went seizure free till Friday, a week, a whole seven days and a record in the current series of events. Events are how they refer to seizures in the neurology department at Cork University Hospital. An event to me was something I looked forward to like a disco, a football match or a couple of pints with Con Flood, not something that fills me with dread and drags the life out of me. It’s going to take a long time before all these associations can be erased from my consciousness, but it will be a happy day as it will be the one when epilepsy has been shown the door. Then it will be time for some proper events….

The longer Freddie goes between seizures the higher the dread we feel that something is about to happen. Occasionally too if he goes a few days more than the norm we hope that maybe the medicine or to be precise, one of the medicines, he’s on, are working. Usually you don’t let that feeling or belief linger, as you know epilepsy is only just around the corner waiting to take a running jump at your little boy. So it was on Friday, seven days since the last one and I wasn’t too surprised when Lisa rang to say he’d had a small one just as they were heading out in the car. Ruby and I were in Dingle still, it was about 4pm and she’d just arrived in from school. As soon as was possible I closed up and we headed for Tralee, staying just inside the speed limit, always trying to stay aware of what I was doing, carrying my precious cargo back home.  We drove back in quiet, Ruby listening to her music on her phone, me listening to Lyric, not really taking in what was on. As usual, the journey seemed to take forever but we probably got home in the usual time. We drove up to the house but it looked very quiet, no Freddie at the window looking out for his sister or Lisa in kitchen cooking his dinner. After parking, I rushed into the front room to be greeted by Freddie, jumping up to welcome us home with a big hello and a hug.

“I fainted Dad!” he said, his word for a seizure, better than event in my book.

The sight of him awake and full of life was just wonderful. Soon afterwards he was digging into a big dinner and we tried to get on with the evening as normally as possible, checking him every two minutes, waiting for something to happen. All four of us fell asleep in the front room and I took myself off to bed around midnight. As per previous times’ the little man threw my door open about 2am and cuddled up to me for the rest of the night. We slept the sleep of the just till about 6.15am when he had another seizure, not a long one and he came around almost immediately. Feelings of elation are a side effect of frontal lobe epilepsy and he had a big smile on his face as I took him to the bathroom. After the trip to the toilet, we slept on till Lisa woke us about an hour later. He went off with his mother and I fell back to sleep, until Lisa woke me at 9am. He’d had another small one but again it hadn’t fazed him and he was up waiting for breakfast. Maybe and its only a maybe, the Tegretol is having some effect; I just don’t know anymore, we’re too bamboozled by it all to think straight. Experience has told us to discount everything, every sign of hope, every feeling of progress, unfortunately.

The rest of the weekend, at least up to now, about 4.30pm, has gone well. Ruby had a football match over in a place called Listry and I’m just back from collecting her, discovering a few more Kerry back roads in the process. As soon as she was in the door, she was back out again, some important shopping to be done with her mother.  Freddie is sitting beside me doing his artwork and SpongeBob is on in the background. Any time we stay away from the hospital when Fred is in seizure activity is a good time as far as I’m concerned and it’s a plus we’ll take any day of the week. This little boy deserves so much more than weekends like this and the sooner he gets the surgery or seizure control from medication the better.

It really can’t come soon enough for us all…it really can’t.

 

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22Apr/120

The week of ups and downs

The end of a long week. That first week back at school is always tough, back to the early rises, lunch making and no more lingering over breakfast. The worst is that it seems to last forever and the return to all the routine gets me down. Having said that, when you have a weekly routine of early rises etc it does make the weekend more enjoyable, something to look forward to. Since Fred’s epilepsy took its present course, our weekends have become fairly lazy affairs, keeping him relaxed and out of hospital is our main objective.  So, if sitting around reading and watching football is what is required, then, to quote Kev Moriarty “it has to be done.”

Since we started reducing Fred’s Topomax, one of the failed Anti-Epileptic Drugs he’s been on, he seems to have increased his seizure activity.  AEDs are very difficult to deal with... You are dealing with the central nervous system so everything has to be done slowly, very slowly. Firstly, you have to increase the intake over a number of weeks until you reach a therapeutic dose, this being defined as the amount of the drug you should be taking according to your weight and age. Only when this dose is reached and tested over another length of time can you decide if it’s working or not. To reach a therapeutic dose can take months and the only way to test if its working is you remain seizure free or have a reduction in your amount of seizures. To add to the annoyance of it all you can have a honeymoon period when the dose works and suddenly stops working, then you have to decide whether to increase the dose again, introduce another AED or start weaning yourself off it. Fred has tried seven different AEDs since he was two years old, all with some limited success and currently he’s on four different ones. Four is too many, one is optimal and two is usually the most you should be on. So now we have to start weaning him off two, Keppra and Topomax, then try introducing a new AED on the market, Vimpat, leaving us to get him then off the last one, Frisium. At that stage, he’ll be on just two, Tegretol and the Vimpat, which, so the theory goes, will give him seizure control. Seizure control, that elusive term we’ve been hearing since he was first prescribed Epilim seven years ago. Lisa is in charge of Fred’s medicines and she is so meticulous about it all. She might not remember my birthday but can tell you the exact four, twice-daily doses, his different vitamin intakes and where exactly Fred is on the reduction ladder for Topomax.

One of the terrible paradoxes of these AEDs is that even though they might not work, the coming off them can be a nightmare. So it was with Epilim Chrono, the reduction of which put Freddie in the ICU last August and it have given him no protection at all on the therapeutic dose. So it is too with the Topomax, it has had a moderate effect but nothing to justify keeping him on it. Lisa has begun weaning Fred off it but its taking about 8 to 10 weeks. On Monday evening, Ruby and I came home to Freddie in tears on the couch cuddled up to Lisa. With his tear stained eyes he looked up at me and said, “I had a faint” his words for a seizure. Wednesday, Saturday and now Monday, the weaning of the Topomax is not going well. The poor man was so upset by it all that he had burst into tears, uncontrollable tears at this epilepsy giving him such a hard time, his feeling that he can’t escape it is really getting him down. The helplessness his parents feel at these times is beyond description. For the rest of the evening we watched him like a hawk but for the third time in a row, the little man faced epilepsy down and avoided going into a cluster that requires the IV drug Lorazepam. He ate a big dinner, watched a movie or two on his DVD player and slept soundly through the night. At 1am I went to bed leaving Lisa, Freddie and Ruby asleep in the front room, we don’t like moving him on these nights after he’s settled. As before, at about 3am, my door was thrown open like John Wayne looking for Maureen O’Hara and in strode Fred, looking to cuddle his Dad for the rest of the night. Despite the horrible circumstances, I love having him come to cuddle me in the middle of the night.

Thursday was a great day. A man brought me a half-dozen duck eggs as a thank you for holding a parcel from the courier for him. Others brought a cup of coffee and a big bar of chocolate as a thank you for other small jobs done. The coffee was drunk and I delivered the chocolate to Ruby at school with her lunch money, which she had forgotten in her hurry out of the car that morning. The one thing I was never in a hurry to do was get to school and certainly not to get there early. Ruby and her friends demolished the bar of organic, fair-trade, expensive present in no time, which I was delighted to hear. Just before noon, the lovely Siobhan Mac called and offered to take me to lunch at a new place in town. We sat outside in the Spring sunshine discussing the world with another man who had joined us, laughing at our financial woes, how fecked we all are and how to put things right. A perfect way to escape from the world for a while.

Friday began a bit the same. My fellow Gooner Keith rang and offered to take me to lunch. Am I looking particularly thin these days? Doubt it. We had a lovely lunch of sandwiches and coffee whist discussing TV, family life, things to auction on EBay and football. As with the day before I was in no hurry back to work afterwards but back I went. About four Ruby came in from school, tired after her first week back and collapsed into my seat. Lisa rang shortly afterwards, Fred had had another seizure and was sleeping on the couch. She told me not to worry but then she is great at coping and I am not. As soon as I could, but not soon enough, Ruby and I closed up and headed for home. We spoke with Lisa and all was fine, Freddie was awake and waiting for dinner. Just as we got in the door the little man had another, it wasn’t looking good for a peaceful night. He recovered quickly enough and managed to eat his dinner and watch a bit of TV but by 7.30 he’d had two more so we headed over to the hospital. As per normal, I dropped them at the door and went to park the car. Then the usual rush back with the bags, up the stairs and into the ward, I could do it all blindfolded. On the ward, the desk was empty but as I walked down the corridor a familiar nurse’s voice, somewhere behind me, said “Room 1 Dad.” In Room 1, Freddie was laid out and just beginning another seizure. As with the strict protocol, they gave him the Lorazepam, once they found a vein, Doctor Brian handling it all with calm and reassurance. Doctor Brian looks like he should be sitting the Junior Cert. but despite his youthful looks he’s a very good doctor and we’re always happy to see him on duty.

Lorazepam is a very strong sedative but on Friday night, Freddie was having none of it and by 10 o’clock when I was heading home, he was sitting up watching a DVD. Lisa was sending me away so she could get him settled. As I left Nurse Angie was wondering why he wasn’t knocked out, if he’d gotten the full dose from Brian! She checked and he had.  Back home Ruby and I watched TV till about midnight when I felt I was tired enough to sleep. Only after another hour of reading did my eyes begin to tire, eventually my brain was relaxing, maybe Lisa and I should get a shot of Lorazepam from Doctor Brian in future. Not that it would work for Lisa; she is so dedicated to minding our little man that I don’t think anything would get her to sleep when he’s inside.

Saturday morning and I repeat what I’ve done so often these days. Up before seven, shower, flask of coffee made and head over. This time the two are awake, Lisa with her kindle, Fred watching yet another DVD, he’d woken at 5.30am but had a peaceful night. The Lorazepam might not have knocked him out but did stop the cluster. Didn’t stop him being a cranky fecker though, the usual side effect, and by nine o’clock he was fighting with everyone. Lisa went off to drop Ruby to the Dingle bus, I’d already decided that I wasn’t going to work, I just couldn’t face it. Not long after Lisa returned, the consultant called in to check on us. He took one look at Freddie, awake and feisty, one look at us and suggested that we could go home if we liked. It didn’t take ten minutes for us to pack and go. Being home only twelve hours after going in was a relief. Freddie’s mood improved remarkably after a big lunch and a three-hour snooze, the bad night on Friday wasn’t ruining our weekend completely.

Now its Sunday lunchtime, the weather is picking up and I am thinking of walking the dog. Freddie is demolishing a fine Sunday lunch and Lisa is….looking beautiful and effortlessly elegant as if nothing had ever happened. Never in my wildest dreams did I see myself being married to such a wonderful person.

Lucky, lucky man.

 

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15Apr/120

Aunty Clare

Whilst I wrote Last Sunday evening we were all well settled at home and a week later, it seems little has changed. Lisa is sitting reading her Kindle, Ruby is under a duvet on the couch watching YouTube videos on make-up and Freddie is making Lego buildings for Godzilla and Ultraman to destroy. Lunch has just been eaten and we’re all a bit sleepy. We’ve all been up since 7am and its beginning to kick in.

As the others roused themselves this morning, I took the dog for a walk in Ballyseede woods. It was such a cold crisp Spring morning I just had to do it. At 7.10am, Muttley and I were the only two listening to the birdsong, watching the rising sun break through the trees and marvelling at the haze coming off the river. In fairness, Muttley was too busy chasing fresh scents but I’m sure he appreciated it. The frost was so heavy I’d had to pour a kettle of hot water over the windscreen before we left but it all added to what was a magical early morning.

This week has left Lisa and I, as Francis Albert Sinatra would have put it, bewitched bothered and bewildered. Freddie got through Easter without a hitch which was lovely and the first holiday this year that this has happened. By Wednesday, he’d reached day ten since the last incident and we began to worry that something was coming. He seems to be on a ten to twelve-day cycle at the moment. That evening about 5.30, I was coming through Lispole on my way home when Lisa rang. Nothing unusual in that as she calls most evenings to tell me to pick up milk, wine, chocolate or other such essentials. The tone of her voice told me only one thing, something had happened. We both know intuitively at this stage, the immediacy of the tone tells its own story. Fred had fallen asleep in the afternoon and as he woke he’d gone into a seizure. The usual minute of full-blown seizing but then he slipped into one where the whole body shakes and shudders with the eyes rolled up. This lasted nearly fifteen minutes and Lisa gave him the diazepam to try stop it. Luckily, it did and Lisa was calling me from the car on the way to the hospital. She was fortunate too, that Ruby was there to help as trying to move a semi-conscious Freddie isn’t easy. Lisa told me not to worry as all was ok but that isn’t easy when you’re 35 miles away and phone coverage is poor. Knowing that crashing the car wasn’t going to help I tried to drive as carefully as possible but probably broke a few rules of the road whilst trying to keep my thoughts and fears under control.

At the hospital I parked up and ran over to A&E. A nurse on duty recognised me from one of our many visits and before I could ask she told me Freddie had gone straight up to the ward. Up those stairs I ran, those stairs up to the Cashel ward I know only too well. On the ward, the Nurse Eileen saw me coming through the door and pointed at a closed door. In I went to see Ruby sitting by the window and Lisa lying on the bed.  Freddie was lying on the other side of her and his little head popped up when I came in.“Oh hi Dad” he said as if nothing had happened. I collapsed into the spare chair, all that running and stress isn’t good for a man of my age.

Lisa took Ruby home to feed her and to get the hospital bags. Fred, though dozy, sat up in my arms playing with my phone while we waited for his DVDs and glasses. The doctor came round but she couldn’t find a vein to put the line in and went off looking worried and crestfallen. No amount of reassuring from me could make her feel better. She said as she went out the door that she’d send up the senior doctor to try. After a while, Lisa returned with all the stuff and got the room ready for the night. One of the catering staff, knowing that Freddie hadn’t eaten, came round with a plate of rashers and toast. His favourite and she knew it. The care that little man gets from everyone at Kerry General breaks my heart.

The next morning I was up at 6.30am and headed off with the flask of coffee and toast about 7.20. Nurse Catherine was behind the desk and she gave me a smile as I came in the door. In the room, Freddie was sitting up watching a DVD as if nothing had happened and for once, nothing had. He’d gone to sleep about 9pm and slept a peaceful night through to 7am. It doesn’t happen too often, no stream of seizures, no IV Lorazepam given, only the second time since last August in fact. Is the Tegretol beginning to work again? Is it not stopping the seizures but preventing the clusters? Maybe it’s the high dose of vitamins we have him on is helping the drugs to work? Who knows? By eleven o’clock the two were heading home. Wonderful stuff indeed, especially not having Fred doped on Lorazepam for once.

On Friday, Lisa’s beautiful, wonderful, caring sister Clare came to visit. Freddie’s Aunty Clare his favourite Aunt and he didn’t let her out of his sight. We hadn’t told him Clare was coming in case the anticipation would be too much. Epilepsy is such a fecker that way. Clare had to sit through all his favourite movies and I think was slightly surprised that he knew all the words to Austin Powers. When I came home that evening he was wrapped around her under a blanket and hardly gave me a hello.He was so knackered by it all that he collapsed asleep at nine; he couldn’t fight it anymore and slept a deep sleep until 7am. When I woke him, he jumped out of bed to go find Aunty Clare, to make the most of her last hours with us. After she left about 9am, the poor little man was very down. “I miss Aunty Clare” was all he could say for a while afterwards.

Yesterday evening I was out in the kitchen tiding up after dinner when Lisa came in to say Fred had a seizure. Just sitting down watching his bedtime programmes, when he’d keeled over. “For fucks sake “was all I could say, over and over again. In the front room, he was laid out, recovering. After about an hour he woke up, a bit dazed but ok. He put on his glasses and continued watching his programs. We were watching him like a hawk. By ten, he was exhausted again and fell asleep for the night in Lisa’s arms. We continued to watch him, studying every move. About forty minutes later he had a 5 second frontal lobe seizure, a long 5 seconds for us but it didn’t develop. In the next twenty minutes, he had another two very similar ones but nothing developed again. What a relief. About 1am, I went off to bed leaving Lisa and Freddie on the couch, all seemed settled.  At four o’clock my bedroom door was thrown open, Freddie had woken and came looking for me. We cuddled up under the duvet and slept the sleep of the just till seven. No hospital this time, excellent.

Two good nights in a week, nothing to celebrate as we don’t want him to be having any seizures if at all possible, but at least he avoided the serious drugs and even avoided the hospital too. Much and all as we love everyone on the Cashel Ward we don’t want to be seeing them too often.

Freddie and the rest of us would prefer to see more of Aunty Clare if we had a choice!

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8Apr/120

No Dillydallying

It’s 7pm on Sunday evening and we’re sitting in the front room all stretched out happily under our blankets. Ruby is eating a banana noisily, Freddie is watching TV and Lisa, well she has her head in her kindle lifting it only to glare at Ruby for eating her banana so noisily. An oh so cosy, happy family you’d think that never a cross word was heard in the little house in Ballyseede. Ironically, I wrote last week about the tension in our house on days off and how it seems to affect Freddie and last Sunday was tense. As I wrote it, Freddie was sitting on the couch between his Mum and me, eating his dinner whilst watching TV. Couldn’t be safer and I think its one of the favourite places in his little world. Just as he took the last bite and as I was posting my finished piece, he went into a seizure. Two weeks, almost to the day, since his last one. That gap would have led to the day’s tension as we were expecting something to happen, dreading it but hoping against hope that it wouldn’t happen. The seizure was a short one, less than two minutes but two minutes that immediately put us back to square one, the medicines aren’t working. At least the current combination isn’t working. Bollocks to all that, even thinking about it makes me angry.

Over the next four hours we tried to contain the seizure activity. We gave him the diazepam after first one and he held till 7 o’clock. Then he had a brief frontal lobe seizure, lasting about ten seconds and another two-minute one at about 8 O’clock.   By 9.30 he’d had another ten second frontal lobe one and two one-minute generalized ones. All this told us is was time to give up the fight. Even though the hospital is only five minutes away, we don’t want to be rushing there in an emergency so Lisa sprang into action. We were out the door in a matter of minutes. As always, the hospital staff were wonderful, settling us in and putting us at our ease. They take Freddie as their personal charge no matter who’s on duty. We hate putting them out but they also see us at our wits end and each time its such a relief for us to be taken under their wing.. It really is frontline care at its best. Always when they have Freddie settled, a tray of tea and biscuits is brought in as they try to settle the parents. No doubt the same free refreshments are banned under HSE cutbacks but sometimes rules have to be flaunted Minister O’Reilly...

Lisa is truly wonderful whenever all this happens. She takes every seizure as a personal insult, as if each one is her fault, a slight on her care of Freddie. Each day she looks after him from the moment he wakes until he goes to sleep in her arms at night. She administers his medicines with the precision of a ward nurse, feeds him his controlled diet and is always there for his every need. Whenever he keels over she curses like a barrack room full of drunken troops whilst wiping his forehead and making him safe. Once he’s ok, she jumps into action. The hospital bag is packed, his DVD player gotten ready and the call to the hospital is made. Before we head over, she makes sure Ruby is ok too and even finds time to tidy up. At the hospital, she arranges everything around her, making the nurses laugh with her efficiency and sends me home once Fred is settled. Underneath all this I know she’s eaten up with upset and anger that all this is happening again. If it weren’t for her composure this ordeal would be much harder for all of us to endure. She fights Freddie’s corner for him when he isn’t able and she’s a formidable fighter at that, I do what I can but I’m not a patch on her. It’s been said before by me but I am married to Wonderwoman.

Monday morning and I head over to the hospital at about 7.30am.  The flask of coffee is made and is in bag with the mugs, milk, sugar and toast. My usual fears of what I will find when I get there overtake me but I try to keep them in check as the stairs are taken two at a time. Nurse Noreen smiles at me from behind the desk and on the ward the two are cuddled up on the child size bed. I wake Fred with a kiss.

“Dad” he says sleepily “what are you doing here?”

There were no signs of a line having being put into his arm but my hopes that he avoided the Lorazepam are misplaced. Freddie had had another four seizures during the night and about 3.30am, the doctor was called to put the line in. She couldn’t get a vein in his arm so like Elvis she found one in his ankle. The seizures stopped after the drug was given and they’d slept the rest of the night through. Probably would have slept all morning if I hadn’t arrived to wake them. On days like Monday I don’t care about anything and instead of going off to work, I stayed with the two for a while.

About ten o’clock I made a call to the Hermitage Clinic inDublinwhere Freddie is due to have his PET scan. As the HSE haven’t made the one in CUH available, we have to go private with this one. My call is to find out if the appointment has been made yet. It turns out the paperwork had been sent to CUH for confirmation the previous Tuesday but they hadn’t heard anything back yet…. This was relayed to Lisa…Without hesitation she grabbed her phone and headed to the corner of the ward to call the consultant’s secretary inCork. The poor woman never knew what hit her, no peaceful start to the week for Margaret.  Lisa was perfectly composed but she put the secretary in no doubt of what was expected of her. The other side of the conversation I can only guess at but I doubt if there was much said. The line “I don’t want any dillydallying on this one Margaret” has now entered the Verling family phrasebook.

The rest of the week went as per normal. The two came home Tuesday morning, in fact they were discharged so early I was able to bring them home before going to work. Friends as always asked how things were but sometimes I just don’t have the strength to go over everything and I answer ok, plus I don’t want epilepsy to dominate our lives. One friend in particular came into the shop Monday afternoon after noticing that I was late that morning, wondering if all was ok….it breaks my heart how much concern people show but I had to lie to her, sorry! Later in the week, Ed Galvin phoned and offered to take me to lunch. Talk about perfect timing. It was a lovely gesture, really appreciated, the good lunch and funny conversation were the perfect distraction. At the end of lunch, Ed joked that he could tell Pam, his wife, that he had done something nice without being prompted by her. ‘More than you’ll ever know’ I said to myself as we left the building.

Now it’s Sunday evening and our week is behind us. We’re having a snack of cheese, biscuits and salty nuts as Freddie calls peanuts. The sun has gone down, The Arsenal has won and I have a beer waiting.

 

How bad?

 

 

 

 

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1Apr/120

Anyone for some stress?

HP1

It’s Sunday afternoon in sunny Ballyseede. The dog has been walked; I took him to the woods this morning so as to avoid the crowds that go walking in the afternoons. The thing with Muttley is that after six months of walking in the woods, sometimes not meeting another soul, he now thinks the woods belong to him. Some dogs he’ll ignore but others, usually big dogs, he’ll bark and snarl at. To stave off rowing with the owners I usually praise the poor hound Muttley is claiming and ask the type of breed. This morning he managed to scrap with three different dogs, all Japanese type breeds according to their masters.  Muttley must be descended from the war in the Pacific POW stock….

This morning I brought Ruby breakfast in bed. Since I came home we’ve had lunch but Ruby still hasn’t come downstairs, busy doing make-up and girlie things that Dad’s don’t ask about. Lisa got into running gear about four hours ago but so far has only gone from the couch to the kitchen and back again. Right now she’s under her blanket reading her Kindle, with Freddie cuddled up beside her. She may look like Mrs Incredible in her gear but in the movie the same Mrs Incredible did leave the couch from time to time so as to help her husband save the world….

Freddie and I were fighting for a while this afternoon. We don’t normally fight but days when we’re all home together can get fractious. There is real stress involved in looking after him, Lisa suffers most from this seven days a week and at the weekends it all seems doubled up. When one of us is away from Fred we keep excepting the word to go up that he’s keeled over. Every time the phone rings when I’m out of the house I jump, dreading the news. It’s got so that the first thing the one who’s with Freddie says to the one away is ‘its ok, everything is fine’ before we go into further conversation. Both of us are aware of this but there’s little we can do about it. You just spend your days worrying about the little fecker, no way out of that.

This afternoon he went upstairs to be with Ruby for a while. This is worrisome for a few different reasons…you worry that he’ll keel over going upstairs, you worry that you’ll hear the dreaded shout from Ruby and you worry that if he avoids the first two something will happen on the way back down. Worry… that’s all we do these days! Not exactly true because we laugh, joke and fight like any normal family too, thankfully, but stress levels rise quickly. After a while I couldn’t take the worry anymore, I was constantly listening out for him making his way downstairs or other noises from upstairs, so I went up to retrieve him. He didn’t want to come back but did so grudgingly. Downstairs he went into a strop with me. Like Ruby as a child, Freddie can get into major deep strops. Once Ruby packed her bag and left home, I waved at her as she left, as I knew the eight year old would be too scared to go beyond the garden wall. That was as far as she went but she stayed there for a long time with a determined, defiant look in her face, even an offer from me to drive her to town couldn’t shift her. Definitely a trait inherited from the mother. Poor Fred has got himself so worked up a couple of times that he managed to bring on a seizure, one time falling ten feet into a stream next to our old house. That one involved an ambulance trip and a Sunday afternoon in A&E….

By the time he got into his strop today, I was already well stressed and determined to get him out of it. We exchanged barbs and he refused to budge, determined that he was going back up to Ruby. After a while I threatened to leave, sounds stupid now but he hates it and talk of me leaving was all I could think of. Stupid stress, stupid epilepsy ruling our lives so, all the little fellow wanted was a trip upstairs. Once I’d left the room he crawled up to his Mum and began to cry, I felt as low as is possible, what’s happening to us here? Nevertheless, the strop had been broken and in seconds I was back on the couch, Freddie wrapped around me and with me wiping the tears from his eyes.

No matter how much we try not to let previous episodes prey on our minds it’s inevitable that they do. Lisa and I try to live as normal life as possible, give the kids as normal a life as possible, but in this current situation, it is proving very difficult to do that.

Look out world, when all this is behind us and one day it will be, the Verlings will be coming for ya!

 

 

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