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

24Feb/130

The Visitors

It’s Sunday morning and all is well.  During the last week we’ve had visitors, lots of them and it’s been great. At long last, it feels as if things have changed a bit, a cautious change, but at least we’re going through a period where we can relax somewhat, more than we have for a long time. No doubt it’s to do with our trips to Temple Street and the confidence we’ve gotten from the support of Dr Shahwan and his staff.

The actual trips in themselves too have built up our fragile confidence, something neither Lisa nor I mentioned, till my beautiful wife brought it up in conversation last night. Because we had to do the nearly four hour trip, we didn’t discuss our fears of something happening on the way up or down. In fact the four trips went really smoothly. After the first journey up to Dublin, which being in early January was in the dark, Freddie said to me: “Dad, I like driving in the dark.” He didn’t know that I was petrified doing the same drive in case he was scared of the dark outside and that something might happen when we were on the motorway. It’s great that Freddie isn’t aware of his parent’s mad fears. The two trips to Conor and Cathy’s were a milestone too; going to someone else’s house and relaxing isn’t something the Verling family do too often. In fact we were so relaxed that the three women were able to go off shopping...

My sister Ella and her husband Dan came to visit on Sunday. All went well, Freddie hasn’t seen much of them due to circumstances, but he was delighted. Soon he had Ella sitting down on the couch and watching a National Geographic Shark special. It’s one he’d seen before so he was able to tell Ella in great detail what was happening and what was coming up. Not exactly what she was expecting on a Sunday afternoon lunch trip. Unfortunately Fred had a temper tantrum just as they left, these tantrums are getting less and less, but it meant he was in his room and couldn’t say goodbye. Thankfully the tantrums are declining but are very upsetting when they happen. Fred was very repentant afterwards which is a good thing.  I’d take a tantrum over a seizure any day.

On Monday I spent the day in Dingle. After dropping Ruby at school I had a few jobs to do, banking etc, all the nice ones. It was great to walk around town and see people I hadn’t seen for a while and for once have positive news on Freddie. My main reason for staying on was to meet Mark Swain for lunch. An old friend, over from England for the Dingle Walking Festival, we hung out like teenagers for the afternoon. After lunch and too much coffee we wandered around town and found another place for more coffee. The chance to spend time with a friend, laughing, storytelling and just shooting the breeze was too good to miss. Again, it was a refreshing change from our lives of the last few years, and a great way to pass four or five hours. Mark, as always, filled me with positive thoughts but where he gets that unbridled energy from we’ll never know. Must be something to do with that portrait in the attic...

About 5.30pm I went off to collect Ruby from basketball. It has been a while since I collected her in the evening but she got in, said “Hi Dad,” put one her iPod, and home we went. Just like old times...

Tuesday morning and Fred slept solidly till about 9.30am. He hardly moved all night, head still on the same spot on the pillow as when he went to sleep. To me this is a sign that something is on its way. To Lisa I’m being over sensitive. She’s right too, as many times he does this without anything happening. It’s just one of those things that if it’s happened before it means that it will happen again. In reality seizures just happen, there aren’t any clues, except when Freddie gets ‘the confusion’.  With Lisa dismissing my fears we went about our day. At about 5pm Fred asked to go outside to get “some fresh air.” Out he went and I stared to make the dinner. I looked out and he was sitting down, digging in the dirt, over by where Muttley the dog, pees. So opened the door to tell him move and has he turned to me, he slipped into a seizure. A long one, but mild in its expression. In a flash I was with him, holding his head, calling for Lisa and reassuring him that all was ok. Thankfully he hadn’t been standing as he could have cracked his head off anything, if it is there to hit your head off, Freddie will find it. Lisa was with me in no time and the two of us struggled to carry him in to the couch.

There he slept for the next couple of hours, when a small frontal lobe of about 5 seconds broke through. It gave me fright; we’d all been so quiet doing our own thing. About a minute later a big, angry seizure broke through, only a minute or so in length but horrible in its intensity. Under the new regime we don’t give the diazepam, Dr Shawan believes it only adds slowness to Freddie’s brain and we should use it only in emergencies. We agree with him, of course, but yet it’s hard sitting through a night watching Fred, in case another one breaks through. After the seizure we gave Freddie his evening meds and about an hour later he woke, looking for dinner. Freddie really is a remarkable little fellow, the epilepsy keeps kicking at him but he gets up each time and walks away, shrugs it off and keeps going. About eleven o’clock or so, the two of us went off to bed, the evening was catching up with him and he needed to rest properly. We sat in bed reading ‘The Gruffalo’ and his other favourite books before he nodded off to sleep. Unfortunately he had two more frontal lobe, five second seizures, about an hour into his sleep but that was it. After I while I put down my book and turned off the light.

About five thirty he had another two little frontal lobes but it didn’t disturb him. He slept on, but about 6.50am, a big seizure broke through again. The usual, minute long, full action seizure and it never gets easy to watch, no matter how many he has. I settled him, he cuddled up to me afterwards and continued his sleep. Lisa came in with his meds and I had to get up and take Ruby to school. Life carries on in our house, it has to, epilepsy ain’t winning...

For the next hour he had a few more small five second frontal lobe seizures but nothing major broke through. By the time I got back from Dingle, about 9.30 am, he was sitting up downstairs, eating breakfast, as if nothing happened. A truly remarkable little man. During the day I asked him what had happened the evening before, had he not felt the confusion, the seizure coming on when he was inside? In fact he had, but Fred thought by going outside the fresh air might clear his head. If only it was that simple, but great of him to think that he could get rid of the confusion in his head that way...

“I’m sorry I fainted Dad,” he said, his eyes full of sorrow, his hands in the air in an act of hopelessness, his head hung low.

All I could do was hug him tightly and say it’s not his fault.

Feckin’ epilepsy.

The rest of the week went cleanly.

Yesterday was a big day. Auntie Claire, Auntie Rudi and cousin Boonie were coming to visit. Freddie was beside himself with excitement, so much so that of course I feared the worst. My fears were groundless, thankfully, as I really wanted our man to enjoy having his Aunts around to stay. Also it was great for Lisa to have her two sisters to come over and for everything to go smoothly. Rudi was over from the States, she just flew in yesterday morning and this was to be the only chance to get the three sisters together...

All day Freddie was looking out the window wondering where they were, why hadn’t they arrived? I had told him that Rudi was flying in to Cork in the morning and maybe they’d be down by lunchtime. As the day wore on and they hadn’t arrived I had to explain the concept of shopping and Aunty Claire...

“But why Dad?” he asked....if only I knew my son...

There wasn’t a happier man than me in the company of the three beautiful, wonderful Shanahan sisters. Freddie was in his element, as was Ruby. Such chatting, laughter and fun, the house was alive. It really was a great evening. Fred had drawn pictures for the visitors, as presents to welcome them to our new home. These were presented when they arrived. He sat down in the middle of them, doing his jokes, more drawings and the obligatory Austin Power’s impressions. From somewhere he’s inherited the ability to entertain a roomful of women, a powerful skill to have. To add to the excitement, Lisa’s cousin Jill came over later in the evening. Auntie Jill, as Fred calls her, is like a fourth sister, so the excitement went through the roof. Plus he kept the epilepsy at bay.

Phew.

We ate, drank and laughed the night away. Freddie managed to stay up till about 10.30pm, when the two of us slipped away to bed. Our job was done; we left the six females alone, for more laughing and chatter. The two of us were much happier up in bed reading ‘Tyrannosaurus Drip.’

Freddie was asleep in a flash.

Now he’s downstairs awaiting another visit from a female. This one is Elaine, his new home tutor. The Dept. Of Education, in their generosity, has given us four hours a week of a paid tutor. Elaine is keen to get started and she’s coming over today for lesson one.

Fred won’t be happy with homework on a family day.

It certainly won’t match the fun of having his Auntie’s round, but then nothing would.

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Posted by John Verling

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