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

7Jul/130

16 Not Out

It’s a really beautiful Sunday evening in Tralee and the Verling/Shanahan household is at peace. Ruby is watching some video on YouTube, Fred is watching Jaws 2 on his DVD player and Lisa is under a blanket reading her Kindle. I’ve been relegated to the second couch while the three beautiful people in my life are all settled on the other. Ruby is tired after a weekend on the beach and shopping; she had Ali over for the weekend so there was no end to the giggling. The two together are so funny; I’m scared to leave the room first in case they start on me as soon as the door is closed. Lisa was in stitches at their impressions last night; I pity the boys who try put the chat on those two.

 

It’s been a stressful weekend though and ironically so in the circumstances. Friday was Fred’s fourteenth day seizure free.  Recently it’s been a cycle of 13 or 14 days and 6 or 7 days on the shorter turnaround. So as the week went on Lisa and I were dreading the end as it approached. Thursday evening and things were going exactly to plan. Freddie started getting the ‘confusion’ as he went to bed. Par for the course and once again I was marvelling at how epilepsy can be so predictable at times… As I got into bed, Fred cuddled up and fell asleep in my arms. A deep sleep and in that deep sleep he stayed till the morning time, so deep that he didn’t stir as I got up.

 

This week I’ve been on a training course, Friday was my last day, and when I came home at 1pm I was expecting the seizures to have hit. No, our Fred was sitting up having lunch as if everything was good in the world. No reason why it wouldn’t be but day fourteen is normally the one when he suffers. That afternoon he spent outside under a tree in the garden, playing with his dinosaurs and Godzillas…he called it his ‘shade’ and was very happy in there out of the sun.

 

Lisa and I were at our worst, worrying about him, wanting him to be careful when up walking and checking on him all the time. He had the jitters, not too badly but enough to have us worried that a seizure was on its way. It’s a bit of throwback to a few months ago when were continuously on edge, always expecting something to happen. Now were are better, not much but a bit and on days like Friday we are on constant alert. Now that he has the freedom to roam about and we have the confidence to let him do so, he wanders off as much as possible. The problem is on bad days he could keel over anywhere and bang his head or break a bone or two. This happened a few weeks back and he still has the scars on his feet from scraping them on the tarmac during a seizure.

 

All this stress about what may happen led to a lot of snapping and fighting with Fred when trying to restrict his movements…

 

“Get in Fred…if you’re going out stay sitting down…don’t run…don’t go too far’ was all he got from his parents on Friday.

 

Of course he is a stubborn young man and doesn’t like to be under any constrictions. Personally, I blame the mother for his stubborn streak while she is very quick to say, “What is it about the Verling men that they won’t do what they are told?”

 

If I did what I was told after Lisa and I first met…..suffice to say we wouldn’t have celebrated 18 years together this June…

 

The longer the day went on the more we got worried about him but in true Freddie style he came through it unscathed. As we went to bed that night I was thinking how hard it is for him, epilepsy always waiting to strike and his parents always fussing over him like I don’t know what.

 

Saturday morning I was expecting to woken by a seizure but nothing happened. All day he was jerky but he kept it under control. As the day wore on he became very tired and a bit lost at times. Again, he spent it outside under the shade of the tree with his parents watching his every move. When I left to drive Ruby and Ali to the beach I fully expected to come home to an unconscious little man, but no he was still awake and fighting with his mother. At this stage Lisa and I were almost willing a seizure to strike, to get the event over with and let us back to another couple of weeks of not worrying too much about things.

 

Odd thing for us to be contemplating but having an expectation of when a seizure may strike, for the first time in years, has us on the rack a bit. The two-week gaps we’ve been getting have been wonderful especially now that the summer is upon us and Fred can be outside or at the beach. The other reason we want it out of the way is that we’re due a trip to Dublin this week and we’d like Fred to be at full capacity for Cathy Madigan. He has been so good lately, Elaine is delighted with him and his progress has been obvious to all of us. If things go wrong over the next couple of days the trip may have to be cancelled and on the selfish side that would mean we’d miss a night with to Inchicore…

 

Now it is Sunday evening and all is well. Fred has moved over to sit at my feet and is watching Bob the Builder, a sure sign that his brain is slowing down. The jerks seem to have stopped but he’s not himself. Ruby is fast asleep, stretched out, head on her mother’s lap.

 

Anyone looking in the window would think we’re the perfect family…

 

I wonder what it will be like in 24 hours time…

 

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Posted by John Verling

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