Epilepsy is a curious condition. We’ve gotten to know it intimately over the years, unfortunately for Freddie a little too intimately, but still it seems like we hardly know it at all. Lisa and I have tried predicting when it may strike so as to ward off a seizure attack. Fred went through phase a few years ago of having seizures just as he woke. So we started waking him at 6am, giving him his medicine and getting him out of bed. The poor little fellow, bewildered but doing as his parents wanted, went along with our madness. For a while we thought we had it licked, then of course, the epilepsy started hitting at 5.30am, it was as if it knew we were trying to outsmart it. Then about 5pm became the attack time so we started giving him his medicines about 4pm. No such luck it moved to 3pm ish. To counteract that we started splitting medicine times to three times a day, which worked for a while but only until the epilepsy figured out what was happening. Fred has tried numerous medicines, some worked for a while before the epilepsy got around them. The diet worked well for a while but it cracked that one too. You could spend a lifetime trying to outsmart it, people have but it keeps coming back for more.
Recently Fred’s epilepsy has been on a 14-day rota and when it hits, it hits badly. We’ll take the 14-day turnaround if the epilepsy will keep its end of the bargain. Freddie got up to seventeen days free, down to ten days but all is better than the every three days and the constant jerking he was suffering towards the end of last year. This time I think it’s due to the addition of the Rivitrol, just before Christmas, to his dose of Tegretol. The honeymoon period that you get with the introduction of a new medicine is long over, Dr Shahwan has increased the daily intake and we’re living with the break, for as long as it lasts.
As we’ve been on the new seizure schedule for a couple of months now and yesterday was two weeks since the last time, the last few days were spent waiting. Lisa and I knew it was coming and even on Thursday Fred was obviously not himself. Though he did go to school and came home full of excitement about the tin whistles….
“Dad,” he looked up at me, eyes open, “you won’t believe it! All the kids at school had instruments.”
When did instruments come into his vocab and how come he can say it so perfectly but still calls his DVD player his “d player.” Our Fred is full of surprises.
I gave him a big hug, one of those ones where I just don’t want to stop squeezing, we’ve waited for these moments for over four years now.
“Can I get a tin whistle?” the big brown eyes looking sad and pleading at defenceless me.
“Of course, of course…”
That afternoon, after Elaine came around for his two hours of home tutoring, we went out shopping. Fred has Elaine wrapped around that little finger of his. The laughing and joking coming from the front room wasn’t what I remembered education to be about. At one stage he was laughing so much, I thought a seizure would be the next thing to happen. It was great to hear him laugh so much and Elaine sounded like she was enjoying it too. Turned out they had a deal going, Elaine would write a line of sums and every time Fred got one right, he’d get a tickle.
It must have been a long line of sums and the boy genius must have got them all right.
On our trip out in the car, even though we knew it was getting close to the two-week mark, we put it out of our minds and carried on regardless, we saw the sights of Tralee. The veg shop, the butchers, the off licence, they were all visited but the one shop that sold tin whistles didn’t have any free parking outside. So we had to come home, empty handed, the sad little man upset at not getting his instrument. When it came time to collect Ruby from school Freddie came with me, we were going to give it another shot. This time Ruby popped in, Fred and I parked illegally and waited for her. When the big sister came back with the brown paper bag, he was over the moon. Then he blew on it and the memories of how horrible a sound it can make when not playing a tune rushed back. Fred and I made a deal, he wouldn’t play with it till his teacher in school showed him how, we were both happy with this and when we got home he put it in his school bag.
Thursday night Fred felt sick and didn’t want his dinner. Unusual for him and a sign that something was building up in his head. He slept for a while in the early evening and woke about 9pm, somewhat better but only wanted a slice of toast. As he had slept already, the two of us didn’t go to bed till about 10.30pm and then we sat up reading stories. Its one of our favourite things but we haven’t had time to do it lately as he’s normally so tired after a day at school he drops off about 9pm. Fred even found a book we’d never read before, normally he likes the tried an trusted old favourites but the new school going man wanted a new read.
On Friday morning I was expecting a seizure to strike and was awake about 5am, the old boy scout in me was being prepared. Nothing happened but he wasn’t himself when he woke later. The little jerks were there, not too badly but there nonetheless. He got up about 7.15am and really wanted to go to school. I was in favour of him going but Lisa, rightly so, didn’t want to push our luck just for the sake of a couple of hours in the classroom. If something was to happen, it is best for it to happen where we’re in control, where we can keep the drama to a minimum. Ruby and I left for Dingle, the little man pleading to go to school but when I returned he was happily cuddled up to his Mum, playing Godzilla battles.
Friday continued as a normal day, a few rows with his Mum and a big dinner of shepherd’s pie to make up for the missed one of the night before.
Going to bed Friday evening was a strange event, if viewed from the outside. Lisa and I were both aware that the two weeks were up the next day and that lately the day begins badly. We discussed what we’d do and how we’d just have to go through it, or Freddie would, we’d just be there to help him. It felt a bit strange planning for a day of hell.
Then nothing happened, a clear day. Fred passed the fourteen-day mark.
So Sunday would be the day.
At about 4.30am this morning the seizures began. Two little frontal lobe ones, no more than five seconds each but I woke instantly. Nothing to do but call Lisa. She gave him his morning meds; maybe they’d get to work and help him through the day. Fred rolled over and cuddled back into me, sighing at having being disturbed.
He slept soundly for the next couple of hours till about 7.45am when he had another two, slightly longer. Lisa came down and took over and about 8.15 I went down to make breakfast. I made Fred his boiled egg too, just in case he got up. Ruby came down and had hers; I brought Lisa up a coffee. Then at exactly 9am a big seizure struck. It was inevitable, probably, but still, I hate that sound, Ruby and both knew immediately what was happening.
Now it’s nearly noon. Fred has had two more big ones and a few small ones. Lisa, the wonderful woman that she is, is sitting in the bed with him, nursing him through the day. I’m up and down the stairs but Lisa doesn’t want me fussing around, disturbing the little man. In truth there is little I can do.
There is little either of us can do, just sit and wait it out, mind our little boy.
Fred is the hero, the one who has to go through it.
It’s a bank holiday Monday and we’re having a lazy weekend. So much so that when I went to lock up last night all doors were already locked, not one of us had stepped outside all day. A lost day but not like some of the lost days we’ve had in the last few years, all was ok, it just worked out that way. Fred has been good for the last week, fitting with the two-week cycle he’s slipped into over the last few months. Now it is May, nearly five months since we came under the wonderful team in Temple Street and our quality of life has improved immensely. Today we’re going on a drive, at Fred’s request, he loves the trips out and I think this is the first such drive in a couple of years. He was so unstable that a drive could set him off and in line with that, a fear built up in us. So it’s a family day out, ice creams and a trip to Fenit. Mind you it will only be a proper Verling family drive if we manage a row or two…
This week Freddie wanted me to take him to school. On Tuesday the two of us set off. Lisa took Ruby to school, leaving the house at 8am, the two men under strict instruction on how to behave. Following our instructions to the letter, the two of us were ready and out of the house by 8.35. Fred was full of excitement; he had the whole thing prepared…
“Now we’ll going in and I’ll say to my teacher ‘I have a surprise’, then you’ll come in…’surprise!’ was Fred’s plan.
I was so nervous about getting everything right that we left far too early. Fred gave me instructions as we drove…
“We go up the up road…” drive up the hill.
“Round and round to the straight road” take the bendy road till it straightens out.
The two of us were about ten minutes early, standing in Fred’s classroom waiting for the kids to come in. The kids were outside running around, it was great to hear them and I can’t wait for the day that Fred will be able to join them. Memories of my own school time came back to me too, thankfully for the kids of today the fear seems to be gone. When they all came in laughing and chatting, happy to be at school I could see Freddie is in the right place. Some of the kids said hello to him, a couple of earnest ones went straight to their desks and took out their books, other were busy chatting.
Fred introduced me to his SNA Denise and I think he has her wrapped already, afterwards she told me how they’d watched Godzilla on YouTube…
I slipped out and sat in the car. Now I know what Lisa goes through every day. Each time the door opened my heart jumped, any movement in the schoolyard and I was checking it out, my phone was checked every two seconds to make sure it was on. When Lisa came back from Dingle, she stopped for a chat. She was laughing at me being up to the high doh with worry, happy that she isn’t the only nut in the relationship.
When it came time to go in and collect him, why does time go so slowly in these cases, I had a look in the window first. Fred was busy doing drawing so I left them alone for a few minutes, eventually one of the other kids noticed me at the window and I was brought in to take the man home. Such a relief to be able to do these normal everyday activities, go to school, go to the beach, just ordinary things we would have seen as daily chores not long ago.
During the week, I went out to Dingle to do a few jobs and catch up with some OLD friends over fromEnglandfor the week. It was lovely to be someway relaxed, to be able to report good times with Freddie for a change. Of course we’re never fully relaxed but I think we’re learning to live with a certain amount of fear and its great for Fred. Over lunch with Trevor and friends, we went back over old times and told some good funny stories, most of them unrepeatable in print due to libel laws.
When I got home with Ruby all was ok, Fred was watching TV eating his dinner, just as things should be, just how we want them.
On Friday, I did the same trip again, except this time Tara and Hannah came home with us. Fred was over the moon having the girls over and soon had them on the couch, cuddled up between them, just how he likes it. The girls are very fond of him too and they love his little ways, he always gets a laugh with the two. They went home on Saturday but Fred’s disappointment was offset by the visit of Trev, Glenn and Gaye, who called in on their way home. Not long ago we would have been full of fear of someone calling over in case the excitement set Fred off. This year though Fred met the visitors at the door, shook their hands and was the perfect host. Even when they left he walked them to the door, waving them off before carrying on with his day.
What a difference a bit of confidence makes.
Just now Fred came in from the garden with his fingers covered in nettle stings. He didn’t know what had happened him, he asked Lisa to take the stings out. I went and got some doc leaves, the usual cure for nettle stings. Now he’s sitting on the couch looking sad and his fingers wrapped in giant doc leaves.
Getting stung by nettles, fingers wrapped in doc leaves, all part of a boy’s growing up and a welcome part of Fred’s normalization process.
Fred mightn’t appreciate the nettle stings but I’m delighted he’s getting these experiences in eventually.
Far better than a lot of the little man’s experiences so far in his life.
The usual Sunday morning in our house, Ruby watching her YouTube videos, all four of us under our blankets just taking it easy. Yesterday was a bad day, Fred’s first day of seizures in 15 days but, as is the way at the moment, they came hard and fast. The gap between seizures seems to be settling on a 14/15 day rotation, which we’re delighted with, but the episodes seem much stronger. The great thing about there being a break between seizures is that we begin to relax and forget about epilepsy, we always know its there somewhere, waiting to hit, but as advised, we enjoy the free days, value them and not live them in fear of what may happen.
As has been the way recently he had the seizure in the morning. The little man had gone to his mum’s bed about 4am, leaving me on my own for a change. As I was getting ready for the day, about 8.30am, I heard that horrible sound, the one I could pick out in hurricane, the howling sound Fred makes when going into a seizure. When you haven’t heard it for a couple of weeks you hope that it’s not what you think it is, but it is, it always is. Upstairs Lisa was with him, holding him, keeping him safe. While deflated, you’re always hoping that he might go longer each time; we’re also trying to be positive, deal with the incident but not let it take over again. Our plan, now that he’s fine today, is to let him recover and go to school tomorrow. Make his life as normal as possible, treat the epilepsy as part of Fred’s life, not all of his life.
Easier said than done but with Lisa’s strength and determination we’ll get there.
Yesterday I was due to go to a meeting inCork. Once Fred started seizing I decided not to go but Lisa insisted that I did, she could cope, Ruby was with her and we couldn’t let the epilepsy dictate our days. Reluctantly I agreed, I wouldn’t be gone for long and Rubes is a great help when needed. We carried Fred downstairs, not easy when he’s knocked out after a seizure, but we did and made him comfortable on the couch. He settled himself and I got on with my Saturday morning duties.
By the time I was ready to go, Ruby was up and the house was stocked with all that was needed. Fred had had a couple of the small frontal lobe seizures but it was three hours since the big one that had announced epilepsy’s return. It’s hard leaving in such circumstances but as Carthy Madigan advised, we can’t let the epilepsy dictate anymore; just get on with our lives as much as possible. On the way I called home a few times, all was ok, just a couple more frontal lobes. It was a beautiful spring day and the drive to the Real Capital was a sunny one with plenty of cherry blossom lining the route. However the beauty was lost on me, all I could think of was my little man and even though Lisa was telling me not to worry, I did.
On arriving I rang home, all was still sort of ok, Fred was sleeping, the two ladies having a lazy Saturday. The meeting went well but during the first break I rang home, he’d had a three big tonic-chlonics, the ones we hate, all a minute long but Lisa gave him a shot of Stesolid to try put a stop to them. Back in the meeting, I couldn’t concentrate and when it was polite to, I left, driving down the narrow lanes of the Northside, held up by traffic and I couldn’t wait to get on the open road.
By the time I got home he had another two, one was just finishing as I got in, it had been two hours since the last one, at least a gap was opening up. Ruby was fed and we tried to see if we could rouse the man with some ‘crispy chickens’ but no luck, he really was knocked out. A couple of times he woke, looked around but dropped back into unconsciousness very quickly. About 9.30, the two went off to bed, Lisa giving Fred a piggyback, me behind, standing guard. By the time of my bedtime the two were well settled, so much so that I was sent upstairs to sleep on my own. At 4am I got a text, bleary eyed I tried reading it, it was from Lisa, “Fred wants his Daddy.” He’d woken and noticed the wrong parent was with him. This after Lisa spending all day with him, minding him, caring for him, seeing him through all those seizures, doing all the nursing while I was off inCork, no, mother was dismissed and the father welcomed in her stead.
Oh, the lot of the unappreciated Irish mother…
On Monday afternoon Fred wanted to go to the beach with me, something I hadn’t had the courage to do in over two years, probably longer. He loves the beach, but has had a few seizures there in the past and the idea of a beach trip has filled me with dread ever since. But if Lisa was being strong enough I had to be too, we weren’t going to get anywhere with the normalization process if I didn’t practice what I preached. So without thinking about it, we gathered up our bits and the two men headed off to Fenit, where Lisa had previously found an easy to-get-to beach.
Funnily enough it was a great relief to be on the road again, the two of us off on an adventure, like old times, I loved it. Fred knew exactly where to go, he has a memory for directions. He also has his own way of giving them…
“You drive, drive drive…” – go straight on
“Go round, round, round…” – go around a bend in the road.
“Go down, down, down…” – go down a side road.
Combined with Freddie pointing out remembered landmarks on the way, we easily found the little beach. I drove down as far as I could and the two of us got out. Fred showed me a good spot, where we sat and gathered stones. He’d brought a paintbrush so we could brush the rocks and look for dinosaur fossils like inJurassicPark. After about ten minutes, it felt like hours, we packed up and headed home.
On the way we got an ice cream as a treat. This really was a big day, a trip to the beach and an ice cream, all I could think of was that I wished we hadn’t lost the last few years, how I loved being out and about with my man. The two Verling men and the open road, no stopping us. We spoke about his big day Tuesday, the first day back at school. Fred wanted to see his school and so we drove down to see it, the kids were just coming out and we slowed to have a look…
“I’m scared Dad,”
“Why?” I asked.
“Of the big boys, they won’t like me, those big kids,” Fred looked at me with those worried eyes, the brows arched in the cutest manner that just makes you want to kiss him.
“Of course they’ll love you, they’ll all want to play with the Fred when they get to know him,” I joked.
“Oh, all right, I’ll go,” he said the eyebrows arched even more, if it was possible.
So this really was to be a big week, Fred’s first trip to his new school, his first time sitting in a full classroom in over three years. Tuesday was the day. On Monday Lisa went and met all involved, the headmaster Terry, the teacher, the SNA, and Fred’s home tutor Elaine. The idea was to get everyone on the same page, so there would be continuity in his education. Tuesday morning Ruby and I set off, leaving the two to get ready. By the time I got home all was over, Fred’s first day was behind him…
”I was brilliant Dad,” he told me, as I came in the door but in a nonchalant way, as if it was only to be expected.
Lisa, having spent the hour outside the school having twenty nervous breakdowns, was delighted the first day was over; delighted we’d made the first step.
It felt like normality was returning at last.
For the rest of the week all we wanted was for the first week to go without incident.
Each day Lisa sat outside the school, on my way back from Dingle I’d stop and offer to take over or to get a cup of tea. Lisa, a bundle of nerves, couldn’t relax, her eyes fixed on the door of the school, her phone gripped tightly in her hand. If she wasn’t watching the door, she was checking her phone, waiting for it to ring. There was no way I was taking over; in fact, I was hunted away. This meant that I was at home waiting for the man to come in, bag on his back and in his new uniform, looking the scholar, even with the tie askew. As soon as he got in the door, the uniform was pulled off and his civvies put on, the best part of the day for Fred, I think.
We got to Friday, all was ok, the first week was down and we’d survived. Fred loved his time at school and it seemed the other kids loved him too.
On Friday evening the two of us were chatting before he went to sleep…
“Dad?” he asked.
“Has the sun gone to bed?” was the question.
He still retains that beautiful innocence even though he’s been through so much.
Long may it last.
Its Sunday morning again, the weeks seem to pass quicker at the moment but at least I can report another seizure free week, nine days of Freddie being himself and getting on with his little life. On Friday evening he went for a walk with his Mum, just a short one over to the green area near our home. When they were playing, Lisa noticed that look in his eye, the one when she knows not all is quite all right. When asked Freddie, said he could feel the ‘confusion’, that horrible state he gets pre seizure. Lisa walked him back to the house. She was upset that the confusion had come on him when out on a break, we’re only getting brave enough for small walks and don’t need any setbacks. Luckily he made it back to the house and curled up in his mother’s arms to try sleep it off.
Ten minutes later he was awake. The confusion had passed over him; maybe because he had the nap or maybe due to Lisa giving him his medicines an hour earlier than usual. Either way we got through the evening, had a fine dinner of roast chicken, roast potatoes and cheesy cauliflower before heading off to bed about 10pm. When I went up about an hour later he was fast asleep, wrapped around his Mum without a care in the world and didn’t notice when I took over night watch duty. All was well until about 4.30am when Lisa burst in the door, she’d been awake, worried about him getting his medicines early the evening before, so decided to give them early again. She was also mindful of the early morning seizure which had led to a day of seizures the previous Friday. The poor little man was in a deep sleep, we really had to prise his teeth open to get them in but out of habit he swallowed and rolled over back to sleep.
Oh the madness of parents worrying over their little boy...
On Tuesday we headed to Temple Street again. Lisa packed a food parcel for the Inchicore Two including a birthday cake, a chocolate one herself and Freddie had baked the evening before. As Conor and Cathy had birthdays coming up it was to be a joint gesture. The trip up went as smoothly as usual. Freddie had only the one pee stop, off a side road somewhere outside of Portlaoise, the rest of the time he spent looking out the window, snoozing or asking where we were, waiting for Dublin to be declared. Fred has this thing about “almost there” and “nearly there”. “Nearly there” is when you’re about half way, “almost there” is when Dublin is in sight. This starts outside of Limerick...He used to occupy himself on long journeys by watching his DVD player but a couple of times he had a seizure mid movie. In our usual madness at trying to prevent seizures, watching DVDs in the car is no longer allowed. Fred doesn’t seem to mind; in fact he doesn’t ask to watch them, content with looking out the window and maybe staging Godzilla battles.
The Godzillas came with us this time; Fred has spoken of them so much in the past that the whole collection, Godzillas, Ultraman, King Kong and all the other monsters were packed in a big bag. Conor was shown them all, one by one and described in great detail, Cathy was out so she missed the introduction. Later, after dinner, plates were cleared and Fred, sitting on Cathy’s lap, laid them all out again like an army on the table. They made quite a sight and I think she was genuinely impressed, the army was still in position when we came down in the morning.
Fred loves his time with Conor and Cathy, it’s such a safe environment and he goes off, leaving his parents on his own, to watch Conor cook or chat with Cathy. It’s a funny feeling for us to not have to watch him all the time, we can even half relax for a few hours, unwind a little, have that extra glass of wine.
After the big dinner, Fred wanted the cake brought in, candles and all. He had it in his head that it was Cathy’s birthday only and presented to her, proud as punch. To top it all off he sat and sang “Happy Birthday” to her, a very special moment, it really was, and all three blew out the candles, each making a wish.
At Temple Street the meeting went well. Cathy Madigan takes Freddie for nearly three hours, breaking for lunch. The lunch break is what Freddie likes the most about Temple Street. It’s an old building and the excellent restaurant is in the basement. “The Kitchen” as Fred calls it and we go down in the lift to get there. He always has a sandwich but loves the queuing up and sitting at the tables, getting cold water from the font, it’s all part of a life he hasn’t had much access to lately. These little, everyday things mean so much to him at the moment but hopefully the mundane will become just that again, as he gets back into life. Cathy Madigan is determined for him to get there and has been a great strength to us lately. When she heard that Fred’s SNA still hadn’t been approved she was far from happy. Freddie can’t get back to school until he has an SNA to care for him.
After lunch Fred went into the afternoon session. Cathy reckoned he was only up for ¾ of an hour but in the end he was in for nearly two hours. As always Fred confounded the experts and was as bright as a button when we went to get him. Cathy showed us how delayed she believes Fred’s brain is in processing information. It takes a long time for his brain to store something he learns, so long in fact that it takes an age for him to retrieve it when needed. No wonder Lisa is driven daft trying to teach him, he takes words in, recognises them but an hour later can’t tell you what the word is, looking blankly at you when asked. He has a great memory; he can tell you things that happened years ago, it’s just his brain doesn’t allow him to retrieve things in a hurry. This may be due to the medication; they are sedatives after all but probably due to the effect of his frontal lobe defect too. IF and I stress IF, he gets the surgery hopefully learning won’t become so much of a chore.
The good news Cathy had for us, was that she’d made some calls. She’s not one for standing on ceremony and had banged a few heads together...Freddie had got his SNA. He can start back at school, its only 15 hours a week but that’s three hours a day, enough for any man to back into the rhythm of things. Lisa has a meeting on Monday with the principal and all going well he may be back in uniform Tuesday morning.
This will be a major change in our lives but one we’ve waited and hoped for, for nearly two years now. Of course we’ll be worried sick but Freddie’s education is our focus, worrying will have to be done on our own time.
Fred slept most of the journey home, he didn’t even wake when I stopped for food. It was almost 8.30pm when we got home; a long day but it had been another great trip to Dublin. Tara was staying for a sleepover, Fred was only too happy to have another female to play with and he cuddled up to her to watch some TV.
The rest of our week went as usual. Fred’s home tutor came for two sessions and he did quite well with her, all I could hear from the front room was chatting and laughing...
Fred loves entertaining the ladies.
It’s a Tuesday morning in Tralee. Fred and I are sitting up watching Mr Bean, the cartoon version, which annoys me a lot more than the TV original, which was bad enough. Usually I publish this piece on a Sunday evening but this week I’m a couple of days late, nothing but tiredness prevented me from writing earlier, that and the fact I was in Dublin for the weekend.
Dublinnearly didn’t happen. After sixteen days of seizure free bliss, epilepsy came back with a vengeance on Friday morning. During the sixteen days you always know it’s just around the corner but you hope against that it will stay away from your little boy forever. No such luck for our Fred. About 4.30 am on Friday I was woken by Freddie having one of those 5-second frontal lobe episodes. At least that’s what I thought it was, it all happened so quickly I couldn’t tell for sure. For the next couple of hours I watched him, dozed and watched him again. He seemed fine, was even talking in his sleep and making the usual noises an active sleeper makes. Then about 6.30am, a big seizure struck. He was lying so peacefully in the bed, head on his pillow, the way any kid would sleep. The seizure lasted about 90 seconds or so, seemed like forever when I was holding him, it had been so long I’d almost forgotten how horrible these things are. Afterwards, all is changed, now he’s unconscious, making horrible noises as his body readjusts itself and he becomes a patient.
Immediately I called Lisa and she came down to take charge. We tired getting his medicines into him but his jaw was shut tight. There are a few aftershocks when he shivers a lot, shakes and makes a lot of snorting noises. Lisa was in the bed with him by now, as I had to get up and take Ruby to school. Not long later he had another seizure. Another big one. This wasn’t looking good. We settled him, tried again to get the morning medicine into him but no luck. Before I went down to make breakfast we managed to get his jaws open and the medicines into him. The poor little man was looking at us through the eyes of a zombie, not recognising us or knowing what was going around him. This state is very upsetting, no matter how many times we witness it we’ll never get used to it.
Before I left for Dingle he had another seizure. Not good at all, in previous times we would on the way to A&E after a third. Lisa gave him a Stesolid, the last thing we wanted was another hospital visit. This seemed to settle him and I set off with Ruby someway confident that all was under control.
By the time I returned he was doing ok. The seizures were now presenting as the five-second frontal lobes but he was still in a deep sleep. Lisa sent me off to work; there was no way I was heading to Dublin on Friday, for all I knew hospital could still be the weekend’s destination.
When I got back for lunch the two were still in bed. He’d had another big seizure and was still having the small ones. This was a sort of state of control. As long as the big ones stayed away or were only occurring every hour or so we were getting somewhere. Freddie was also coming around slightly, not much but you could tell he was aware of his surroundings. At one stage I kissed him and said “I love you” and he answered back “I love…” before falling back to sleep.
All day Lisa stayed with him. Sitting up in bed, Fred propped up on cushions between her legs, sleeping and seizing. The way she takes over is wonderful, the devotion to her boy is beautiful to witness. The two may fight like cats and dogs at times but when he is in seizure activity, do not step in Lisa’s a way. She nursed Fred through the day, I took over from time to time or brought cups of tea but it was Lisa who was there for him at all times.
No words can truly describe how she nurses us all through these times.
Throughout the afternoon Freddie slept and seized. Mostly little ones and he had what proved to be his last big one about 4pm. In all he had seven big seizures on Friday and countless little frontal lobe ones. From 4pm onwards, he slept a peaceful sleep and returned to the sleeping little boy we know and love. In that period you are beside yourself with worry, not daring to hope that it’s over or even hope that it’s in decline. You never know when epilepsy is going to hit again. You try compare it with previous times but you could name a dozen similar times with a dozen different outcomes. One example that I always use to temper my hopes, is when he had a bad day and the seizures stopped about 6pm only to return with a lot more about 2am the following morning.
About 7pm Friday evening I went up to see how things were. Fred was sitting up in bed, dopey head on him but awake at least. Twelve hours on and he seemed to be pulling out of it.
“Hi Fred,” I said, delighted to see him awake.
“Where’s my breakfast”
What a man, he gets a kicking that would knock an army but wakes up with his priorities in the right place.
The two came down for ‘breakfast’ and we spent a peaceful evening watching TV.
About 10.30pm we went to bed, I was now going toDublinat 5am, all going to plan. Fred cuddled into me as I read him some stories and the two of us rolled unto our pillows looking for sleep not long afterwards.
When Lisa came to take over about 4.30am, Fred was awake. If he’d been awake all night, I’m not sure. At one stage he did wake me to stop snoring…
In Dublin Conor and Cathy looked after me, as only they can. It was late Sunday evening by the time I got home, about 9.30pm but I couldn’t wait to see my man as it felt like days since I’d seen him.
Unfortunately, he was asleep. Friday had taken a lot out of him and it does take a few days of sleep for him to recover fully.
Now we’re getting ready for another trip to Dublin. Fred has an appointment in Temple Street tomorrow morning, part of the psychological assessment process he has to go through. We’ll be imposing on Conor and Cathy again; the two are quickly becoming part of Fred’s story.
Fred for one can’t wait to get up to Inchicore, he woke this morning full of excitement about going to see the two.
Somehow I don’t think he’ll be so excited about going to Temple Street in the morning though…
Now it’s Sunday morning and all is quiet. It has been a good week for us. Freddie has been seizure free for eleven days, eleven whole days of our little boy being just our little boy. Fred is sitting on the couch, under a blanket cuddled up to his Mum and playing with his Godzilla toys. The poor mother is under the weather, not wine induced but a bad cold; she’s talking about taking to the bed, which in fairness doesn’t happen too often...
Why the epilepsy has left him alone is anyone’s guess. The increase in his meds must be a factor. Lisa only finished increasing the daily dose, as recommended by Dr Shahwan, on Monday. It’s always good to phase in the increase as it cuts down on any possible side effects or at least it makes any possible side effects easier to spot. As Fred is on tablets it means Lisa has to cut little slivers off the tablet, increasing the sliver size weekly and adding them to his daily dose. It took about two weeks to add the .25grm to the recommended daily dose. Maybe this has had its effect or maybe it’s only the honeymoon effect of adding more medication, only time will tell, for now we’ll happily take the eleven days of normality.
One side effect did make a return this week. Yes, the dreaded temper tantrums returned, hopefully for one week only. On Tuesday Ruby went off on her Easter travels, a night out in Tara’s and then the two, joined by Hannah, were off to Waterford for the rest of the week. This left Fred at home with his parents. Sometimes this makes me very sentimental. Yes I miss Ruby when she’s away, something I’ll have to get used to as she gets older, but it also brings all our attention on Freddie, it’s just him and his parents, he becomes our sole focus of those days. On Tuesday evening, Lisa took Freddie off to bed and I stayed watching TV. About 11pm, I heard slamming of doors and raised voices. Having a good idea of what was happening I quickly shut up for the night and by the time I was finished, Fred was standing at the foot of the stairs….He was in a rage, fists clenched, arms fully extended tight in by his sides. In his eyes, his beautiful brown eyes, I could see that look of determination, his pure anger at whatever had happened…
“What are you doing?” I asked…
“I’m sick of Mum,” was all he could get out, by now he was shaking with rage.
Then he swapped insults with his mother up the stairs, it always amazes me how two who love each other so much can fall out so completely, so quickly.
“You’re a big baby…”
“No you’re the big baby...”
Such high class insults…it seemed it all began with Fred not going to sleep on time and then reacting to Lisa telling him off. The rage kicked in and his feisty mother wasn’t in the mood for backing down either, too late at night for compromise apparently.
So the two of us cuddled up in bed. It took about three stories before he’d calmed down enough to go to sleep but he wasn’t backing down on his upset with Mummy…
“I’m fed up with her, she makes me so cross,” were his last words before going off to sleep.
The next morning all was forgotten but it took a couple of hours for them to get back together. Fred wasn’t for forgiving until Mummy said sorry, as if it was all Mummy’s fault. Sorry doesn’t feature much in his mother’s vocabulary either…
This continued for the rest of the week. At work I got a phonecall from Fred one morning, telling me how much he hated Mummy and he wasn’t doing homework. Later in the week, Lisa and Freddie collected me at lunchtime. Back at the house, Fred went straight into a rage and ran off to the rocks a bit away from the house. Now it wouldn’t be much of a worry normally but if Fred had a seizure that much away from the house, it would be difficult getting him back home safely. Also, he could bang his head or fall between rocks, making it even more difficult to get him out. We’ve been in similar situations in the past, still frightens the living daylights out of me…
No end of coaxing or threats from me could get him out. Usually his mother gets the brunt of it and I’m the one he responds to, but not this time. Lisa took over and sat with him while he calmed down, he has to go through the rage, let it subside before he can put it behind him. Thankfully, this time the rage didn’t last too long and soon he was walking back with Lisa, and saying sorry for being bold.
That was lunchtime Thursday and all has been quiet since. On Friday I went down to Waterford to collect the ladies and was half expecting to come home to a bloodbath after the two had been left alone for the day, but no, the moods must have passed for now.
The other side of this has been Lisa getting on with the normalisation process. As recommended byTemple Street, we’re trying to get back to leading an ordinary life. Easier said than done. We’ve been so scarred by all the bad happenings of the last few years that we’re worried of doing the slightest thing away from the safety of home. Lisa has been the brave one here, I’m still nervous going out into the back garden…
Lisa the brave took Fred off to the beach during the week. They collected shells and strolled around without a care in the world. At least Fred didn’t have any worries, which was great. I’m sure Lisa was beside herself with worry but fought the urges and went back the next day. These little things mean so much to Freddie and hopefully I’ll get the strength someday soon to do it on our own. With the summer coming it would be wonderful if we could spend some days on the beach instead of locked up at home.
That is if we get a summer.
For now we’re enjoying the free days, the days where epilepsy doesn’t feature and Fred has a normal life.
Its nearly lunchtime and Fred is doing his drawings, Ruby is watching reruns of Friends and the weather is changing.
No beach trips today for the little man.
Freddie starting talking about the Easter bunny this week. I don’t know why, I can’t remember it being mentioned it before and the only time Ruby had an interest was when the wonderful Lorna Swain used to do an annual egg hunt, many years ago. The origin of the Easter bunny, I looked it up, seems to lie with German Protestants, which would explain why he didn’t figure much in my own childhood. What I do remember was the line of Easter eggs on top of the piano, and me waiting for Easter Sunday, so I could break my Lenten fast. Eggs would be sent out from Granny and other relations in Cobh plus the one my father would get in Cork. They were then put on display, laid out, tempting me for the week before the big day. The smell of chocolate still brings back memories of walking into that room during those days before Easter.
It’s a mark of Fred’s innocence that he chose to believe in the bunny. But also it’s a sign of how, when he gets something in his head, that he just can’t let it go. Whatever the current obsession is, he’ll go on about for ages and ages and ages. Usually until he drives his mother to breaking point. Sometimes he gets two obsessions going at a time and we have to threaten one never happening to get him to stop talking about the other one...
If you were outside our house during the week you’d probably have heard lines like...
“If you don’t stop talking about the Easter bunny there will be no metal detector...”
“If you don’t stop going on about that metal detector there’ll be no Easter bunny...”
If Lisa was the one saying them you could probably insert a few expletives as well.
The metal detector obsession is my fault. Fred likes nothing better than going through catalogues and I got him one from Argos this week. He couldn’t go to bed without his “magazine” and he’d sit up looking at what he wants to get. I always wanted a metal detector too so maybe when all this is behind us the two men in the house might get a treat.
For the meantime he’ll have to be happy with the picture but at least he got an Easter egg. From the moment he woke up this morning he was looking out the window, under the bed, in the cupboard. He nearly walked into the wall on the way out of the bedroom because he was looking over his shoulder to see if he’d missed anything. In the kitchen downstairs he was looking everywhere and I could see him getting more and more anxious. Then I pointed to a bag on top of the cupboards and the look of excitement was only wonderful.
“Jesus Christ,” he said looking into the bag, Freddie appropriately mixing religion with commercialism for the day that was in it.
All this has come at the end of a busy week for us.
On Tuesday Fred had an appointment at Temple Street. This is part of the assessments that are needed, so we know where he is with regards to returning to school and also what the effects of any possible surgery may be. There will a few of these over the coming months and it’s all part of getting Fred back into normal life, whether normal life is ready for our Fred is another question again.
As the appointment was on Tuesday morning, we headed up on Monday evening and stayed with Conor and Cathy. This was a major thing for all of us. We’d stayed in a hotel the last time and this was Fred’s first time staying in another house for maybe four years. Plus he loves Conor and Cathy and has being asking to go stay with them for a while now. Another of his obsessions. Heading off on Monday afternoon the car was so loaded down with homemade breads, cakes, beer, and wines, not to mention the wild garlic pesto and Lisa’s dill mayonnaise made from scratch, that you’d think Dublin hadn’t seen a food parcel since the lockout of 1913. It all added to the excitement for Fred and he was happy in back under his blankets. He never snoozes on these trips, just so happy to be looking out at the passing countryside and asking where are we now? Ruby sat beside me, iPod on and slept for a lot of the journey. Lisa was under her blanket reading her Kindle.
At Inchicore we had a ball. Fred had Conor all to himself, telling him stories and getting him to watch his Ben10 DVDs. We were all having fun in reality. Lisa and I were relaxed, someway, leaving Freddie do his thing and not having to sit with him all the time. The wine flowed and the laughter could be heard back in Slea Head. There were stories told and embarrassing memories dug up, all mixed with a bit of sadness that we haven’t been able to do such things in a long while. Lisa and Cathy were reminded how lucky they were to have landed Conor and me, as we were the kings of the Hillgrove dancefloor circa 1995.
When Freddie and I went off to bed about 10pm we were both knackered. Cathy got a hug and a kiss goodnight from Fred after she made him comfortable in the bed. The two of us chatted for a while, Fred looked out the window and I started to read...
“Can we stay in Dublin for a long time?” he asked.
Fred loves the fun more than any of us.
The assessment went really well. Lisa and I were worried, as he seemed very dopey that morning but at lunchtime , Cathy, the neuropsychologist, said she was very happy with him, that he was very alert. That little man, you just never know where you are with him.
As Lisa and Ruby had gone off shopping, Freddie and I went for lunch together in the hospital cafe. Cathy wanted another session with him in the afternoon. The cafe in Temple Street is in the basement and is very good. The two of us went down in the lift, queued up and sat down at a table on our own. As I told Cathy afterwards it was probably the first time Fred and I had gone out for lunch together in about five years. Thankfully it all went smoothly, another step in us getting a normal life back. On our way back up we met Dr Shahwan and I gave him an update on Fred’s progress.
As always with epilepsy it’s never too far away.
We got home safely on Tuesday and got back to our usual lives on Wednesday. As I came in the door about five o’clock I could see Lisa lying an unconscious Fred out on the couch. He’d gone out in the garden with his paintbrush to brush down the rocks and find some dinosaur fossils. Jurassic Park is a big influence in Fred’s life, in fact combined with Jaws, Steven Spielberg must be Freddie’s favourite director. The little man wasn’t outside more than a couple of minutes before he went into a seizure, exactly seven days since the yoga incident.
Another night of Freddie watching was ahead of us. Remarkably however he woke up within the hour and carried on as if nothing had happened. Fred had dinner, watched a movie and went off to bed as usual. What a relief for us. Whether this is a new routine or not we don’t know, but it probably isn’t, unfortunately. At one stage during the night he asked “what happened to me, Mummy?” Poor little man just hates those seizures.
The rest of our week went peacefully, incredibly so since Ruby has been around all day and Fred usually sees this as a good chance of starting a row. He likes to start a row and then blame Ruby or his mother for everything, looking at me with a pleading innocence that would soften the hardest heart.
Just now I had to break up a row in the kitchen. Lisa trying to keep him away from the fridge had to threaten with calling the special bus. The one that takes naughty boys away, I used to be threatened with Upton Industrial School so maybe just a bus is an improvement...
As I reasoned with Fred and used my cross eyes, Lisa went inside. After Fred calmed down, he followed her. I watched him go; he took Lisa’s phone and hid it under a load of cushions.
He wasn’t taking any chances on that special bus not working Easter Sunday...
For the last week or so Fred has been asking me to get tattoos for him. The press-on type, not the full needle mermaid across his chest that he may choose to get when he’s older. As with all his obsessions, wolverine claws, Thor hammer, having Conor on a sleepover, he goes on and on about it for ages, and then stops for a while, before taking up the pestering again. When the pestering fails or his Mother tells him, in no uncertain terms, that what he’s looking for is an impossibility, he’ll stop. Usually this is followed by deep sighs and an ok, the sad face capable of breaking a million hearts. His one trick, before the pestering goes too far, is to throw his hands up in the air and sigh a lot. When asked, he’ll reply in a heartbroken little voice … “I’ll never get those...” Just his way of giving you a gentle reminder…
On Friday I got the gentle reminder and on the way home from work I popped into a shop that sells everything from toys to religious memorabilia. They had a choice of pink princess or pirates. Knowing my boy as I do I got the pirates and headed home. The look of delight on his face was worth a dozen Euromillions. Pirates, sea serpents, swords and ships were applied all over, and I have to say his mother looks hot with her tattooed arms. We all went to bed Friday night covered in tats.
About two in the morning, Fred woke up screaming…
“Oh Daddy I had a bad dream,” he cried, “a terrible nightmare.”
I asked what had happened.
“The pirates were chopping me up with the big swords,” he said before drifting off to sleep in my arms.
I don’t know if it’s the meds or his powerful imagination but Freddie has some great dreams and gets nightmares from the most unlikely sources.
On Wednesday evenings Freddie does yoga. An idea of Jillian’s and going is part of our trying to get back to normality. With the encouragement ofTemple Street, we’re trying to get back out in the world and not let the epilepsy imprison us in the house. Fred goes with Lisa and Jillian but Mummy isn’t allowed near him once he gets to the centre. It’s his thing and he likes doing his “exercises” as he calls the session.
The three set off and I went shopping.
When I got back, the others were just arriving home. Far too early. During the yoga Fred had got a look in his eye, Lisa, though not next to him was still watching him like a hawk and knew the signs. Apparently without notice, she swooped in and took him off to the car. Jillian, who’d never seen Lisa in action in these circumstances, did what she was told and drove the two home. On the way Fred had the seizure in the back of the car. Lisa the wonderful, caring woman that she is, saw it coming, she knows her boy inside out. Jillian was amazed by the whole event but it came as no surprise to me.
Inside, Freddie was lying out on the couch and we settled in for a night of watching him. Since the cluster of last week, we’d feared this night. We knew that only time would tell if the bad cluster was a one off or if we were back to the regular hospital visits. Though we weren’t talking about it, we both knew it was on our minds. Lisa had put up his Tegretol dose to try increase the levels in his system; maybe get some control of things again. The downside of this is that he can be very dopey when on an increased dose; it takes the body about ten days to absorb the change, to get used to processing the extra medicine.
Every move he made made us jump. The first hour is always crucial. By about 7 O’clock the first hour was over and we could relax a bit. I made dinner for Ruby and myself, trying to get on with things, hoping that the cluster wouldn’t develop. Freddie woke up about half eight, dopey but hungry…”where’s my dinner?” he asked. Phew.
The rest of the night went smoothly. We went to bed after watching a DVD and Fred slept a good comfortable sleep, no nightmares.
At 6am though, he woke with a seizure, quickly followed by another about twenty minutes later. Two full blown, minute long, tonic-clonics.
As Ruby had to go to school, I carried on and Lisa stayed with the boy. By the time we left about 8 O’clock, he was sleeping in his mother’s arms. Maybe his morning meds were taking over, slowing things down.
At work, I called home and he’d had another tonic-clonic. The same as the two he’d had earlier.
It just doesn’t leave him alone.
When I got back for lunch there was Freddie sitting up on the couch, a plate of food in front of him.
“Hi Dad,” he waved at me, as if nothing had happened.
I just love how he gets on with life.
After work I went off shopping and coming out of the off-licence, a text came through from Lisa…
“He just had another tonic-clonic,” it read.
Talk about a kick in the teeth, one would have thought by that stage the seizures would have left him alone.
He was asleep by the time I got home but thankfully, he didn’t stay asleep for long, maybe the hunger took over. We spent the night watching him again but it seemed that the five o’clock seizure was a parting blow, just a reminder that the epilepsy can strike at any time.
Now it’s Sunday morning. Ruby is on a sleepover “back the west” and the two men are on the couch. We had the Sunday morning big breakfast and my hero is laughing it off watching Austin Powers. He never tires of the jokes.
Freddie is looking forward to Hannah coming over for the night.
No doubt he’ll show her his tats.
It’s St Patrick’s Day and the two men are home alone. Freddie and I are cuddled up under a duvet, he at one end of the couch, me at the other. I’m trying to write this on Ruby’s little 10”netbook, as Fred is happily watching YouTube videos on my laptop. Before I could use this netbook, I had to deep clean it of make-up and food droppings. It’s amazing how a girl who puts such effort into her personal appearance can have such a manky computer.
We’re alone as the ladies have gone off to Dingle, for the Parade, and all its social extras. It’s not about seeing the parade, its more about who you will see at it. Phonecalls have been made and coffees arranged. It didn’t take them long but they both look stunning heading out the door; if there was a competition for most beautiful mother and daughter, Lisa and Ruby would have it in the bag before leaving the house. I wonder will they make it past the first roundabout…at least Hannah and Tara are with them, so the rows will be kept to the odd bark.
Hannah and Tara came for a sleepover last night. As always, it was great to have them around and Fred was in his element drawing pictures as presents and getting the girls to join in his games. For dinner they all cuddled up on the couch, Freddie in the middle of the girls, happy out telling stories and devouring his chicken wraps.
The little man is a bit doped again.
After a good ten days of a bright, alert and full of fun little boy, Fred got hit by a terrible cluster of seizures on Tuesday afternoon. We knew that something was on its way, ten days is a long time for Freddie to be seizure free. What we weren’t expecting was the ferocity of it all. After the joys of last week at Temple Street and the new regime of rolling with the punches, Tuesday really was a kick in the teeth.
I was home for lunch and Fred was at his homework. He was doing his tasks and I was watching. As always it came out of nowhere, he just slipped into a full seizure, the usual minute long horrible, horrible tonic-clonic one. Luckily, Lisa was sitting beside him and was able to hold the little man as he went through it. We put him on the couch, he was in a deep sleep and he cuddled up to Lisa, the safest place in the world for the little man. Lisa sent me back to work, we have to try get on as normal, not let the epilepsy rule our lives.
As I walked back the road I felt a little uneasy, worried but then I always worry. To keep my mind occupied I locked myself away in the news booth, practicing my voice projection.
At about 4pm I texted Lisa...
“He’s had four tonic-clonics,” read her text…
I couldn’t believe it; this was a ferocity we hadn’t experienced since August 2011. Lisa sounded very serious when I called; I packed up and hurried home.
At home, he had another one, not long after I got in. We gave in and gave him a shot of Diazepam in an attempt to stop the cluster. As it was nearly five, I headed off and collected Ruby.
Just as we got back, he had another one. That was it. Six is just too many, he was unconscious, this was status-epilecticus, a very dangerous situation. In a flash, Lisa was packed up and we were off to the hospital. As we drove over, the contrast with last week's high was all that was in my head, it couldn’t have been starker.
At the A&E I ran in to get a wheelchair... Fred was so zonked we couldn’t rouse him from the back of the car. Luckily, Peter, a nurse who’d been through this with us before, met me at the door. He knew from the look on my face that it wasn’t a social call. Pete got me a wheelchair and went off to ready a treatment room.
We rushed Freddie in and the team took over.
By the time I completed the paperwork in Admissions and got back to the A&E, Fred had another one. The Diazepam wasn’t working; epilepsy was definitely giving our man a good going over. He was so out of it that, when they put the line in for the Lorazepam, he didn’t flinch. Normally he’d wake and fight the needle to the last, making it even more difficult for the doctor to find a vein. Not this time though, the line was prepped and blood samples taken without so much as a peep from our boy. It was nearly time for his evening meds and we were anxious to get them in him before the Lorazepam was given, if it was to be needed. Lisa managed to rouse him enough to get the tablets in; he looked through me with eyes that had no focus, very upsetting for us.
I needed to move the car as it was parked in a no park zone outside the A&E. It’s a no park zone for a reason and I was conscious of blocking anyone else’s access to the emergency unit. So off I went and parked in the car park, I took Fred’s bags up the Cashel Ward, there was no doubt he’d be spending the night there. Up on the ward I got the usual welcome from the nurses, they had his bed ready, as always next to their station so they could be at hand. We never can describe fully how assured they make Lisa and I feel.
Down in the treatment room they’d given Fred the shot of Lorazepam. A full adult dose, they know he can take it and it was necessary after he had his ninth seizure of the day. Now it was a matter of wait and see, he’d been stabilised and time for him to go up to the ward. Peter went with us and gave the team there a full run down of what had happened, before heading back to the A&E. Anyone who criticises frontline staff need only spend a couple of hours with the likes of Peter or our nurses on the Cashel ward to realise what a vital job they do and how they earn every last cent of their pay.
Lisa, practical as always, sent me home to feed Ruby and get a list of things she’d forgotten in our rush over. I kissed and hugged our knocked out little man and did what I was told.
Ruby was well settled on her netbook, iPod and phone. All she needed was to be fed. After feeding her and packing up all that was needed, I headed back to the hospital. It was nearly 9.30pm, the whole afternoon and evening had gone in blur, I was sick to the stomach but had managed a bowl of pasta. On the ward, Lisa and I had cups of tea and toffees, anything to keep the strength up. Luckily the little warrior, the strongest, bravest man I know, was sleeping peacefully and seizure free. The Lorazepam was doing its job. An hour or so later I headed home to look after our daughter.
All Lisa and I could think of was what had gone wrong, why had this terrible cluster come back to attack our boy, the worst in nearly eighteen months. On my way home I reckoned it must have something to do with his Tegretol levels, if the level in his blood had dropped, then would he have had no protection against a cluster. Why it would drop was another question.
On Wednesday morning, I drove Rubes to school and was on the ward by about 9.30. Before heading to Dingle I’d rung Lisa, they had had a peaceful night and Freddie was still sleeping. When I arrived he was awake, trying to watch a DVD, but was so doped he didn’t know if he was coming or going. I’d brought some breakfast but he wasn’t even hungry, very unusual for him. The doctor and his team came and gave us the all clear to go home. Flap over, we were being sent home to recover; at least there we’d be comfortable and only five minutes away from the hospital, if needed.
On the way out I met Nurse Marie, she’s been on duty when we’ve gone through some terrible nights and it’s always great to see her. Thankfully for Freddie, and Marie, this cluster was all over and we could have a happy chat.
Funny how Freddie can bring you to the ends of the world with worry, then within hours it’s all behind him and he’s walking out as if nothing ever happened.
Of course he leaves his parents, Marie and the rest of the Cashel Ward feeling as if they’ve gone ten rounds with the Incredible Hulk.
Long may it be that way though, that’s what we’re here for…
Sunday morning and its very quiet around the house. It is always the same when Ruby goes on a night away. Yesterday she went for a night at Hannah’s, back in Ballyferriter, which meant I had to drive “back the west” with my darling daughter. It was good timing as it gave me a chance to catch up with Kev Moriarty, home from England for the weekend. It’s always good to catch up with an old friend, especially as our news has improved somewhat since I last saw him in early December.
While I was off travelling, Lisa took Freddie off to the beach. While it’s not exactly beach weather Freddie wanted to go and collect seashells. The beach trip is all part of the new policy introduced by Temple Street this week. On Wednesday we had THE meeting, the one that was to give us Dr Shahwan’s opinion on the tests carried out in January and early February. Dr Shahwan’s complete analysis on everything done by his team; scans, pet scans, psychological assessments, everything…
This was a presentation of their plan for Fred’s future. Lisa was dreading it; I tried not to think about it. Lisa was having sleepless nights; I was trying so hard not to think about it that I finished by book in record time. Appropriately enough, the book I was reading was “The Road to Wellville.” After all the years of struggle we were going to hear if Fred was indeed a candidate for surgery, was he eventually to get some sort of life back?
Ruby came with us. This was an important time for the family, the most important yet and Lisa thought that she should be there. As always, well nearly always, she was right. We are a tight group, rows aside, plus, we wanted to make something of the trip. The meeting was for a few hours on Wednesday afternoon so we booked a hotel for the night, to make an adventure of it all. The Verling family set off in the morning on the adventure, not knowing what was ahead of us but at least we were all together. We stopped off inLimerick, for what Freddie called a snack; those picnics in the car are part of any trip away from home.
At Temple Street, we were almost an hour early. Unusual for us. I dropped the family at the door and went off to park the car. When I got back, they were in the café in the basement, Freddie tucking into a ham sandwich.
“Look what I got Dad,” he said, holding the sandwich up for me to see. At least it was an adventure for him.
I always make myself eat when nervous, there was a time when I couldn’t but now I force myself, takes my mind off things, I suppose. At about 2.10 we went up to the top floor, the meeting was at 2.30 and knowing Dr Shahwan, Amre, he wouldn’t be late.
In the waiting room it hit me. This was the big meeting of my life; nothing could match it for what was going to happen. Freddie was relaxed, Ruby was on her iPod and Lisa was together but very nervous.
Bang on 2.30, Cathy Madigan, the Neuropsychologist, came for us. Ruby and Freddie were staying in the waiting room but Cathy took Ruby to where the meeting room was, just to show her in case she had to come find us. Always thinking ahead…
There were five of us in Amre’s consulting room. Lisa, Cathy, Amre, Imogen the speech therapist and myself.
On his computer, Amre went through all of Freddie’s scans. He had samples from Cork of the telemetry, PET and MRI, which were all done last year and had alerted him, via Brian Mac, that there was something in Freddie’s left frontal lobe worth taking a look at. Then he went on to the work he’d done in January, his versions of the same scans. His work confirmed his belief; there is a malformation in Fred’s left frontal lobe. A piece which probably didn’t form correctly in the womb, and now had atrophied. It looked obvious once he’d shown us but then, he was only showing one good sample from the hours and hours of work he’d gone through. Thankfully, the man is a perfectionist in everything he does. His PET scan confirmed his telemetry work.
Dr Shahwan believes that Freddie is a candidate for surgery.
At long last we’d heard from someone who specialises in this field, a man who is a true wonder to us, that he believes our Fred is a candidate for surgery.
This of course, this is his opinion, a very well thought out and thought through opinion. His next job is to convince a surgical team that he is correct and that surgery would improve Freddie’s condition. As the team work in different hospitals, it will be sometime in May before he can get them all together. In the scheme of things and considering how long it took us to get where we are, till May isn’t a long time to wait.
Now Amre broke Fred’s case into three sections. The epilepsy and its surgery was one, Fred’s reintegration into normal life another and Fred’s education the final one. It makes sense and it shows the holistic approach the team are taking to get Freddie back to normal. He handed the meeting over to Cathy Madigan, to cover the next two stages.
Cathy has spent a lot of time one on one with Freddie recently, so she knows where he is at with his social skills. She believes that it is vital for Freddie to start back into normal life immediately. As Amre added, it will not be like flicking a switch after Freddie’s surgery; he will not suddenly be like a normal ten year once the surgery is done. In a further meeting, with us alone afterwards, Cathy laid it out what we need to do; we have to put our fear of epilepsy behind us and get Freddie back to school, get him back out into the world. Easier said than done of course but the back up we are getting from Temple Street is just amazing. Cathy has been in contact with our local school, they are ready for Fred to start after Easter, and she has had the Irish Epilepsy Association visit the school, to talk with teachers and pupils. She is fighting the Dept of Education to get a fulltime care assistant to be with Freddie at all times at school. There isn’t a stone left unturned from what I can gather. It is her firm belief that Fred needs social integration more than anything else; his education will follow afterwards. A half hour of school per day, then working up to more until he can do a full day, is the plan.
What the parents have to do is get used to thinking if he has a seizure we deal with it, not let it dominate our lives…this isn’t going to be easy.
Imogen too spent time with Fred lately. She is in total agreement with Cathy and is working closely with her as part of the team. Even though Freddie’s speech development has stalled at that of a six year old, oddly his vocabulary is very rich. The job now, and this is connected with his return to the outside world, is to get his speech to catch up with his vocabulary.
There is much work to be done. The trip to the beach yesterday was part of the new plan. It was a very brave Lisa who took the little man to the beach to collect his shells, but they did it and returned unscathed. When I got back from meeting with Kev, Freddie was busy painting them, a very happy little man.
After the meeting, the team were anxious to meet Ruby, put a face on the name. All part of their all round approach to the Freddie conundrum.
A relieved, happy, daunted family left Temple Street and headed for the hotel. The plan was to check-in, before heading over to Conor and Cathy’s for dinner. The family headed up to the room and I went off to park the car. It couldn’t have been more than ten minutes but when I got to the room Freddie was already in his jamas and in ‘our bed’ watching a DVD. It was a dirty evening and we were all tired.
The room was lovely, comfortable and warm…outside is was dark, misty and overcast.
I phoned Conor…we weren’t going anywhere… he said he’d be over about 8pm.
Lisa sent me out to get water and biscuits. Up the road, I found a Chinese takeaway and took a menu. In a convenience store, I got biscuits and big 2-litre bottle of sparkling water. Freddie loved the sparkling water; he called it 7-Up and kept the bottle next to the bed. That lead to an evening of burping and peeing.
The Chinese was ordered and delivered. The Verling family, for once feeling like things are going our way, tucked into spring rolls, noodles, sweet and sour prawns, rice and tofu in black bean vegetable sauce. Nothing quite like that stuffed with a take-way feeling when you’re in a hotel room, tired and its miserable weather outside.
About 8 O’clock Conor and Cathy came round. We explained our day, the first time we’d done so since the meeting. Hearing the words come out of our mouths was a real feeling that all this was happening. Pints were ordered, wine for Lisa and tea for Cathy Berry. Freddie had Conor to himself, showing him the Godzilla movies on YouTube. The laughing and joking in our little hotel room must have echoed around the world, it felt that great to us.
Back home on Thursday night, Freddie and I were sitting up in bed…
“Dad?” Fred asked, “Is the doctor going to fix me?”
“I hope so,” I answered, trying not to cry.
“In the giant magnet?” was the next question, referring to the PET scan.
Whatever happens I hope Freddie's view of the world doesn’t change that much.