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

4May/140

Half Four In The Morning

Fred drew a map yesterday. He’d been talking about if for a while and after dinner he went to find his ‘shopping list’. This is a notebook, the type you’d see a waiter with, single pages which tear out or flip over for more writing. We bought it on one of our trips to the stationery shop, as Fred wanted it to write his shopping list, thence the name.

Once we’d found it, his mother had cunningly hidden it with all his other writing gear, he set upon the cartography task. Not long later the new map was unveiled; two houses connected by a winding but not so long road. Fred brought it to my chair for first showing...

“Look Dad, I drew a map!” the little man exclaimed.

“Show me.”

Two named houses linked by a short road. When Fred was doing the drawing he asked Lisa how to spell TJ and now I understood his thinking. Beneath one house was written Jaden’s and under the other was TJ. Though the map was simple it solved a complex problem, how to reconcile Jaden with the idea of TJ becoming Freddie’s friend.

“This is Jaden’s house and that is the road and there is TJ’s house. He has a short name,” Fred explained, scrunching up his face in surprise at the shortness of TJ.

“Wow,” I wondered.

“First we’ll collect Jaden, then we’ll drive down the road and collect TJ,” Fred continued explaining the thinking behind the drawing.

It made perfect sense. Jaden wouldn’t have his nose out of joint as he’d be the first to be collected. The addition of TJ could be dealt with on the drive over and the two could get to know each other on the trip to Ballyard. Once settled in Ballyard the three would become firm friends Fred reckoned, all problems solved and all would live in perfect harmony.

John Kerry on his next Middle East peace mission would do well to take Fred.

The problem on our side was that none of us knew anything about TJ, he’d only been mentioned in dispatches from school and had never been seen. Where he lived, who his parents were or if he’d even want to come to Ballyard, nobody knew. The only thing we had to go on was Fred’s map. Even Fred was surprised at how his name was spelt and he wasn’t convinced by the shortness of it. In fact TJ became ‘TJ with the short name” for the rest of the evening.

All this was after one of Fred’s bad days on Thursday. As it was day nineteen of the current cycle we had inklings that something was on the cards. He was doing well at school, even this week Fred went up to 2pm, almost a full day. Next week we will push it to the full day, a 2.30pm finish, as the half hour jump wasn’t even noticed when introduced last Monday. The only sign as far as I could see was Fred was being a bit  lethargic, dragging his feet instead of the confident walk of recent weeks and his speech was off. Lisa and I were swiping to beat the band and encouraging Fred to pick up his walk and speech.

So when I got a punch in the face at 4.30am on Thursday it wasn’t too surprising, well the belt was but not that it came from Fred seizing. Epilepsy had caught up with our boy again and no doubt we had a day of it ahead of us. Lisa was called, Fred made comfortable and we settled in to looking after him for whatever was going to happen.

It was a strange day. Fred didn’t seize again until about 7.30am and even woke to talk with me for a few minutes. I took Ruby to Dingle and by the time I came back the two were downstairs, lying out on the couch. Throughout the morning, he’d wake and about every two hours he’d seize. By early afternoon he’d had only four seizures with a couple of small ones thrown in. By the time Ruby came home at 5pm we presumed the worst was behind us.

At around 8pm though Fred had another big one, number five for the day but he woke up soon afterwards. In a few minutes he had his DVD player out and was watching a movie. He wasn’t talking much but he was fairly with it, considering what he’d been through. Maybe this was down to the VNS, and Lisa had been swiping him all day. Five seizures and not any use of the Stesolid was a good day in the circumstances.

At about 10pm Fred and I went to bed. We read a few stories and Fred asked if he could go to his pillow as I closed the cover on the last book. He rolled over with a “love you Dad,” but about 11pm another seizure hit, just as he was slipping into a deep sleep. I swiped him after it finished and rolled him onto his back, on his pillow. For the next while I swiped him regularly but another seizure hit about 11.45pm and I gave Lisa a shout.

We made him comfortable but about forty minutes later another one struck. We were worried and also feeling left down that we would have to intervene with the Stesolid. For some reason I recalled that maybe too much swiping was preventing him falling into a deep sleep, thus triggering a seizure. For the next while the VNS wasn’t swiped and Fred fell into a deep sleep. Lisa sat with him all night and about 3.00am she left herself sleep. The epilepsy didn’t strike again and Fred slept the night through.

Friday saw Fred up and downstairs. He didn’t have an appetite but was in good form. The day before had taken it out of him but he was fighting back. Fred slept a lot and was delighted to see Hannah walk in with Ruby after school. Dozing and having Hannah about, a nice end to a tough couple of days for Fred.

Yesterday morning Lisa and Ruby went to Dingle, taking Hannah home. Fred and I were alone in the house. As Fred hadn’t eaten since Wednesday morning and it was the two boys home alone, I made a big breakfast. But what is the point of a big Saturday morning breakfast without a newspaper? Fred was settled in front of the TV and I asked him if he wanted to come out to the shop. No he said he was ok on his own and I could go. Well, I reckoned he is eleven and the shop was only five minutes away. So for the first time in Fred’s life he was on his own, I was out getting the paper and his mother was in Dingle. When I got back he was still sitting down and hardly acknowledged me when I walked in.

“You ok?” I asked.

“Yes my Dad, I’m a big boy now, I’m ok on my own,” was the reply.

When I put the breakfast in front of him Fred gave a big sigh of contentment. He looked at the plate of omelette, beans and fried potato and licked his lips.

“Don’t tell Mummy,” he said, using our code for keeping big breakfasts from Mummy, though this was special circumstances.

The two of us had a great morning, taking it easy, drinking coffee, reading the paper and watching TV.

The girls came back just after two and Fred let his mother cuddle him on the road to full recovery.

“Mum?” he said after a while, “I have to tell you something, Daddy gave me a big breakfast.”

So much for secrets and honour among thieves.

Today we’ve had another lazy day.

The map hasn’t been used but Fred is planning on having Jaden over tomorrow.

How will we find TJ?

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Posted by John Verling

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