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

7Apr/130

Lisa the Brave

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.

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Posted by John Verling

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