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

11Aug/130

Day 18

Day 18 came and epilepsy eventually caught up with Fred. On Friday night he couldn’t get to sleep. When I went up at about 11pm he was still awake; his mother fast asleep beside him had long given up the ghost. We had been expecting something to happen since Thursday, day 16, if not before then but Fred as always confounded us. As the week had gone on he’d gradually worsen, but then he’d rally. At times you’d be led to believe that maybe we’d cracked it; whatever combination of what we’d been doing had worked, we eventually had epilepsy at bay.

So when he opened his eyes on Friday evening, a big smile on his face, it wasn’t totally unexpected by me. Sometimes I go up to bed and he’s in a deep sleep, other times he’s pretending to, so as to try fool his mother. I knew as soon as I opened the door he wasn’t asleep. Lisa went off to her room, Fred was up and over to the bookshelf...

“My eyes aren’t working Dad,” he said over his shoulder, “I close them but they won’t go to sleep. I need you to read me a story. Now what’s your favourite?”

How could I resist that one? I tried, threatening the withdrawal of all sorts of treats if he didn’t get back into bed and go off to sleep...

“I know my Dad,” he carried on, that ‘my Dad’ always gets me, “just the one book to get my eyes working.”

So we sat up in bed and read the Gruffalo’s Child. Fred hooked under my arm, as near to me as possible, commenting on bits or correcting me if I read something wrongly.

On closing the book I kissed him on the head, took off his glasses and he squished himself even closer to me. As I read he made all sorts of contented noises and began to drift off to sleep. After a while he asked if he could go to his pillow and over he rolled.

His eyes must be working, I thought.

About half an hour later a tiny frontal lobe hit. No more than about five seconds. I looked at the time, it was ten past midnight. Day eighteen. About twenty minutes later another tiny one happened but that was it. I waited with the light on for a while but he fell into a deep sleep, all seemed ok, so I turned off the light and drifted off myself.

As always, Fred manages to find his way over to me in the bed, usually I wake up with him wrapped around me and have to peel him off. On Saturday morning I was woken by the horrible howling in my ear. Fred had indeed rolled over and limpet like attached himself to me so when the seizure struck he was right in my ear. No matter how many times we hear it, we will never get used to it, that horrible howling coming from deep in his belly. I managed to wriggle myself clear and hold him in my arms as he went through it. That first one is always the worst, as if the body is caught totally unawares.

A sleepy Lisa was quickly in the door, the howling had woken her on the next floor up. Like clockwork she took over, dispatching me to her room, while making Fred comfortable. We go through this a lot and deal with it well but it never gets any easier. You always fear for Fred, wonder if we’re going to be able to control things, wonder will we need to go to the hospital. Lisa has her routine and all I can do is fit in with that.

Upstairs I heard him have another one at about 6.30am. It sounded liked it lasted the usual minute or so as well. I lay there listening for a while, by 7.30am he hadn’t had another, maybe this was going to be a gentle cluster I thought. About 8.30am I went down, I must have dozed a bit. Just as I went into the bedroom he had a seizure. Three in two and a bit hours wasn’t too bad. Lisa was looking after Fred and I went off to make her a cup of tea, as instructed, before making the coffee.

So the morning went, we had coffee and breakfast. We chatted and tried to make light of things, read a bit, laughed a bit, worried a lot. Fred had a seizure about 10.30am, two hours after the last one but still a ferocious one. When I got back from shopping the two were downstairs, I’d hoped to come home to them on the couch, Fred had asked for it not long after I left and was under the duvet on the couch. After a while he woke up and said he wanted to go downstairs, I told him we were but he got up to go, the poor man was a wreck. We went upstairs so as to show him we weren’t there and back down again to the couch. Not long afterwards he fell into a deep sleep.

Later Lisa went off to do some shopping for herself. This strange sort of normality we’re having, carrying on with our days while Fred does his thing, didn’t go unnoticed. It was good that the epilepsy was spreading itself over the hours, giving Lisa a time away and leaving me take over for a while. Before she went out he had another, number six so we gave him the Stesolid, time to try call a halt. Epilepsy had done its bit, his brain was reset, time to try fight on equal grounds.

Fred fell back to sleep, he is in a comatose state really by this stage. Of course another one broke through while Lisa was out; this was number seven but again over an hour since the last one. When there are so spread out you always think the previous one was the last one. You live on your nerves, expecting one but hoping each time that the cluster is over. I checked the time, it was nearly 4pm, where had the day gone, it didn’t seem that long ago when the whole thing had kicked off. Lisa was soon back and she gave him his medicines, Fred wasn’t awake enough to take them so we had to fight him to get them in but he eventually swallowed them with a glass of water.

A couple of hours later the ‘goodbye’ seizure struck. We never know it at the time but hope that it was the one. Fred slept for the rest of the evening, every move was monitored, with every sharp intake of breath we too inhaled but he had it on the run. Freddie even sat up for a while, put on his glasses and looked around, a sure sign that he’s winning.

“What happened to me,” he asked through dry lips and a throat sore from the howling.

“You had some faints,” Lisa answered.

“Oh,” he croaked.

The two went off to bed about ten. When I went up about 11pm, he wasn’t asleep but this time he wasn’t looking for a story, he just looked bewildered, the thousand yard stare was back but he’d had enough sleeping for one day. After a while of trying to get his eyes working he asked for his Mummy. Maybe a different parent would help him find some sleep. The Dad was sent upstairs and the Mum took over. The change worked and he passed a peaceful night.

The funny thing about the week just gone was how we tried to forget a day like yesterday was coming while still preparing for it. We’d come back from Waterford knowing that he was showing the signs, sleeping a lot and jittering a bit every now and again.

On Monday we went for a drive, just around North Kerry for a change of scenery. Fred sat up in the front beside me but instead of being full of chat he just sat there, looking out...he had me worried. I asked him a question, he didn’t answer, and I asked it again only louder...

“What?” Fred shouted back, unusually so for him.

Lisa began to laugh in the back, Fred had got water in his ears while washing his hair that morning she explained, he was just a little deaf.

We both laughed.

“What’s so funny?” Fred shouted again, which was even funnier.

The little man wasn’t happy at his parents laughing but not for the first time he’d made the pair of worriers happy with his ways.

“Hmm,” he humphed, looking away.

It must be so frustrating, having to put up with us all day.

Wednesday was day 16 and Lisa took him off to speech therapy and he did excellently, according to Freddie at any rate. That afternoon her royal highness, Ruby, had to be dropped back to Dingle and Fred went along for the ride. At home I waited and when they were gone for longer than expected I feared the worst but they came back in fine form. The delay was due to the summertime traffic in Dingle but I think he wrangled an ice-cream along the way too, judging by the evidence in the car.

There were signs that not all was well though. As the week progressed Fred began mixing up his words a lot. Not the usual grasping for the right word or words in the correct order but the wrong words completely. The fact he didn’t correct himself was sign that he was slipping. One evening he was cuddled up to me and raised his head to say something...

“Dad?”

“Yes...”

“I don’t want the sick faint,” he said in his saddest voice, scrunching up his shoulders, the big brown eyes pleading with me, “Why do I have the sick faint?”

What can you answer to that?

“We’ll get you fixed,” I tried...

“When?”

“Soon, the doctors are working on it,” was all I could get out.

“Oh, ok,” he said, trusting me with my answer, breaking my heart with that trust, the sweet boy.

There is a smell of cooking coming from downstairs, Ruby is back from Dingle and the sweet man is taking it easy, happy to have his sister back.

Normal life has returned.

Now we begin another session of day counting.

 

 

 

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Posted by John Verling

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