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

13Oct/130

Mummy Gets All The Grief

Well it’s 6.40 in the AM and Fred just had his first seizure in twenty-three days. A new personal best for the little man, which of course is great but I think we’ve been waiting for this moment for a least a week. We knew we’d get a boost once Dr Shahwan put up his dose of Rivitrol,  but a break of this length was unexpected. As the seizure-free days had been slipping before the increase, going back to anything like a twelve or fourteen day interval was what we’d been hoping to achieve.

So all in all 23 days ain’t bad.

Today had started as normal, the 6AM rise for medicines. Lisa had come in to give them, frowned that Freddie had drank all the water overnight and went off to refill the glass. The glass of water is a source of amusement that only a couple who’ve been together for a while could find. Sometimes Fred wakes not long after going to sleep, or pretending to go to sleep, saying he’s thirsty. He’s a good man for pretending to go to sleep with his mother, then waking when I come up to take over for the rest of the night. As soon as Lisa leaves the room he’ll start to giggle, as he’s been trying to keep it in as she goes. No doubt he will have been dozing; he doesn’t want to get in trouble with his Mum. None of us do. As soon as he hears my voice he stirs, I see it out of the corner of my eye, and then when the door closes he’ll rise up looking for a story.

Most times I read the story, it would be a hard heart that didn’t weaken when that little face looks at you. Other times I try to be tough, he should really be asleep and I don’t want to encourage him not going to sleep on time. But more often than not it’s a quick read of ‘The Gruffalo’ and he’s off to sleep with a ‘night, my Dad.’ Last night it was ‘The Elephant and the Bad Baby’ an old story but he loves it. Sometimes he’ll ask for a drink before he goes off to sleep. For a while, when he first started the ‘I’m thirsty’ routine there wouldn’t be a glass beside the bed. As Lisa would be downstairs, I’d text her to bring one up on her way to bed. A couple of times she’d already be gone to bed and would refuse to get up. So Fred and I would keep texting till we’d hear the footsteps on the stairs, Lisa giving out about why she had to get up and with a few choice words lighting up the night air...

“I don’t understand why I have to get the glass of water AND you should be asleep,” Lisa would say coming into the room.

Fred, enjoying the fun would reply...

“Well I’m only a little boy and my Daddy is minding me.”

“Feck your father,” she’d say smiling, as she’d turn to leave the room.

“You can’t talk like that about my Daddy!” would be the retort.

Oh the simple fun.

After a couple of these incidents Lisa started leaving a full glass beside the bed but last night Fred had finished it off before sleeping. So I got the frown when Mummy came down to give the medicines. Thirty minutes later I had to call her again though, the seizure had broken through and we had to start the routine we’ve thankfully avoided for the last twenty-three days.

Fred began the week with a couple of tiny frontal-lobe seizures. On Sunday night he had two, just about an hour after going to sleep. So tiny that I wasn’t even sure if he’d had them or not and he had another one just before medicine time on Monday morning. We kept him home from school, expecting a day of activity but nothing happened. The only activity was Fred putting his full milking-it act into full swing. The duvet on the couch for full comfort, Mummy running around looking after him and Godzilla on the go on the TV.

He didn’t have it all his own way though, and Lisa surprised him with home work in the afternoon. The reaction was as expected but he knuckled down to it and got it done. Like me he’s realizing that Lisa won’t back down easily and it’s best all round if you just do it. Standing at the kitchen door I was pleased with how much he’s come on in the time he’s been at Blennerville. Reading, writing, sums they have all improved. Of course he’s way behind where he should be and when we think of that it’s very upsetting but we can only deal with what we have at the moment.

On Tuesday morning he slipped in a frontal lobe about 5AM and stayed home again. Fred didn’t get away with the easy time he’d had the day before but we got through it ok. During the afternoon I went into the front room to a very sad man lying out on the couch...

“Dad?”

“Yes,” I said sitting down beside him.

“I’m sick of being sick. Sick of the fainting. I wish I didn’t have the fainting anymore,” the sad little face looking up at me, the eyes filled with tears.

We cuddled and I tried to explain how the doctors were working on fixing the fainting. It must be so hard on the little man to have his life taken over by the epilepsy. His whole life is restricted, as it’s so unpredictable, and this has been going on for over four years now. The fact that he deals with it so well, is still a happy, wonderful little man speaks volumes for his character.

On Thursday I watched him as he came out for break time at school. Fred looked sad, as if something was bothering him. Denise was close to him, as always, and I could see her talking to him, checking him as they walked. After a few minutes they turned and went back inside. I told myself it could be one of a hundred things on his mind and not to worry. If Fred had been playing at something before the break he may have wanted to stay at it and not go outside. Freddie is very single minded like that.

After the break all the kids went back in. Ed Galvin had stopped for a chat and he was filling me in on the saga of the returned chair, when Denise came out. Fred had a headache and wanted to go home. Without waiting I shot in and took him out. He seemed ok but headaches can be sign that something is on its way. Back home I gave him some painkillers and he was fine by the time Lisa came home with Ruby. Lisa mentioned that he seemed ok and did I think he was figuring out ways of getting off school. We don’t know but can’t take any risks though. While we wish he wasn’t and have to trust him, what normal little boy doesn’t like a reason to skip school from time to time? Certainly I wasn’t adverse to the odd ‘sore tummy’ in my school days...

On Friday Fred was home again. The school were on an outing to the Aquadome, the local swimming centre, but swimming is just too risky for him. Instead of Freddie being the only boy who goes home instead of getting on the bus, we decided to keep him away for the day. A bit of a disrupted week but that’s Fred’s life at the moment. They have a day out for Halloween which he will go on, all things being equal.

On Friday afternoon Fred was caught for homework again...Lisa had the books ready at the kitchen table.

“Why do I have to do homework every day?” he asked.

“Because it’s important,” I answered and headed for the stairs so as not to distract them.

“Nice going Mum,” I heard as the kitchen door was being closed.

Poor Mum, she gets all the grief.

 

 

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Posted by John Verling

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