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

9Jun/130

The Good and The Not So Good

We’ve had a great week. The weather has been wonderful, sunshine, cool breezes, trips to the beach and as Ruby is on her holidays, no long drives each morning.  Freddie is still at school but he had both Monday and Tuesday off this week, the idea of him having days off school to enjoy as he wishes is a new one for us all. As he hasn’t had school for the last four years or at least very little, the concept of holidays is a new one for him. He knows  of weekdays and weekends, mainly due to Ruby being out in the normal world and he calls weekends ‘family days’ as these are the days we’re all together. Now, thankfully, he has the pleasure of enjoying weekends and holidays again as they are the days when he doesn’t have school. Not that he dislikes school, he loves it, but Fred is like any male, happiest in the security of his own environment.  This Friday as we got out bed he said to me...

“Today is Friday?”

“Yes” I answered, knowing where he was heading...

“And tomorrow is Saturday? A family day and there’s no school?”

I nodded.

“Oh, ok,” he walked ahead me, as if the reassurance was enough just to get him through the day.

For us, it is great how well he’s doing in school. Fred’s speech is improving and his home tutor Elaine is delighted with his progress. How they get time for work is another thing...As I passed the front room on Friday evening I heard Fred ask if there was more reading to do. “Yes,” Elaine answered, “just one more and then we’ll have the tickling.”  I also noticed that Fred has done away with the work table and has Elaine on the couch, cuddled up under a blanket.

Tough times indeed.

At school we drop him off every morning and Denise comes out to collect him. This week Fred has me on drop-off duty and Lisa picks him up at 11.00, enough though this has been stretching to 11.15 or even 11.30. Gradually he’s slipping into a normal school life. On Thursday he came home with a postcard that he’d been sent from his new friend Daniel, who’s on holidays in Turkey.  A normal enough event but a lovely thought and it seems he’s making a real impression.  As Wednesday was the first day back after the long weekend, Fred eventually had an opportunity to show off his war wounds to Denise. He got out of the car with his hand over the cuts and waited for Denise to ask what he was hiding. Then he dropped the arm and all was revealed, maximum impact on the unsuspecting teacher. The swelling and grazing had cleared considerably but there was still enough to get Denise’s sympathy. She took his hand and the two walked off, with Fred filling in the details.

We did trips to the beach and family drives as well. The good weather is dragging us out and the process of normalization has really given us courage. On Tuesday all four of us went to the beach, Fenit where there is a good place for collecting shells, and though we didn’t stay long as it was very warm, it was still lovely that we got a chance to do so. Fred, as normal, didn’t want to leave but Lisa’s and my nerves still aren’t up to long stays in the sunshine. As Fred is on a bit of a self-imposed diet we didn’t get ice creams afterwards, probably no harm for me either. They weren’t asked for, it’s amazing how Fred can just give up things without much of a grumble. If he wants something he won’t give up on it though and many the fight Fred and his mother have had over his figaries...usually he wins too...

“Verling men, they just don’t give up,” is usually what I hear from Lisa as she gives in, “you’re as bad as your father, there’s a pair of ye in it, and the two of you have me driven demented.”  This would be followed by an expletive or two, if there hadn’t already been a few thrown in for effect.

On Friday morning I had to go meet someone in Annascaul and took the opportunity to pick up Ruby’s friends; Fred’s favourite two women, Hannah and Tara. The excitement when I walked in the door with the two of them. Fred abandoned Elaine on the couch and ran to say hello. Poor Elaine was left wondering what she had done wrong. Freddie gave the two a hug but he returned to the couch when they reassured him they were sleeping over.

Later I took the girls to Fenit for a swim and after we all had dinner together at our new kitchen table, thank you Siobhan, the trio went late night shopping in Tralee. With the long, bright evening they didn’t get to spend much time inside and so Fred didn’t get to see that much of them. Now he’s more independent anyway, I think he was just happy to know they were there and he took all his toys out the front to do battles.

Saturday was a washout for him. He woke as normal but by the time we got downstairs it was obvious not all was well. His eyes were flickering and the involuntary twitches were back. The one good side of this is that at least we know something is on its way; it can’t sneak up on us like last week. Fred cuddled his mother, ate his breakfast and tried snoozing. Nothing happened but we knew it was a coming. After I came back from Ballyheigue, another beach trip drop for the ladies, he ran out to meet me.

“Daddy I got the confusion, the puking and feeling dizzy,” he said excitedly.

Even though nothing had happened he was going through the motions and dealing with it as he could. It must be very strange for a ten year old to know that something bad is on its way, that in time he’s going to be put through the ringer. I know he doesn’t witness it but the fear must be there and he deals with it so well. At one stage he said “I think the fainting is coming.” He didn’t actually have a seizure at that stage but his brain must have been on the verge of one. Our innocent little boy was facing what we hate to see and we were powerless to prevent it. It is something that he has to go through and we can only be there to help him though it. When I say we I mean Lisa, she’s the one who hauls him though these days, minding him, nursing him, all I do is provide backup support, cups of tea and cooking meals.

By three o’clock nothing had happened. I busied myself upstairs but when I came down at 3.40pm he was unconscious on the couch. Eventually a seizure had broken though, but Lisa was there minding him, making him safe. About an hour later he had another, a big loud one that always shakes me to the tips of my toes, leaving me cold and shocked. As usual he pulled though and cuddled himself even tighter into his mother.

For the rest of the evening he had a load of small ones with just the one more big one about 6.30pm. Of course we didn’t know that it was the last one, you never know with epilepsy. About 9.30pm Fred woke and scooted across the couch to cuddle up to me, the mother forgotten after all she had done. Soon afterwards the two went off to bed. The one thing he needs after a day of seizing is sleep. When I went up at midnight he was fast asleep, wrapped around his devoted mother, not leaving her move an inch.

This morning he woke as normal but still had a lot of jerking going on. He feels fine, or so he says, but it will probably be a day of rest for him again.

Lisa and I are expecting a goodbye seizure to hit but so far so good.

Fred is aware that he has to take it easy so he can recover and go back to school in the morning.

Back to school for basketball with the boyz, that and a trip to Inchicore, it is going to be a great week for the little man.

He deserves it too.

 

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Posted by John Verling

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