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

6Jan/130

Dancing and Fireworks

It’s Sunday morning and I’m up in ‘Daddy’s office’, Ruby has just risen and the man of the house is asleep in his mother’s arms downstairs. Well he’s more dozing than anything else; as I left the room he lifted his head to ask where I was going. He okayed my response and snuggled up to his Mum again. The little man is sleepy after a good Sunday breakfast and his first tonic -clonic seizure in nearly 17 days.

The tonic-clonic is a seizure which catches him unawares, throws him to the ground and the body shakes and contorts. Thankfully this morning’s lasted only a minute or so, a horrible minute but one we’ve been living with for the last few years. Fred and I were in the kitchen making the breakfast. Lisa is always up to the high doh when Fred’s helping me, in case something happens when he’s around hot plates etc. The last few days have been so good that even though I was watching him and not allowing him near the cooker, at least he could be in the kitchen. We had just made coffee and put an extra spoon of beans on his plate, the ‘Don’t tell Mummy’ treat, when he slid to the floor. Lisa, hearing my shout, I always make a sort of involuntary yelp of ‘hey’, as if something has snuck up on us, ran in from the front room to take charge. In no more than a minute it was all over and we carried our man back to the couch. On advice from the neurologist we didn’t give him anything, just let him sleep.

After about an hour he woke up, “Where’s my breakfast?” he asked, the woolly head looking around him. Lisa tried getting him back to sleep but he was having none of it and I went off to finish what the two of us had started.

This has all happened at the end of a great week for us. Last Saturday morning, 29th December, he’d had a couple of small frontal lobe seizures but they were shrugged off and forgotten about. On Sunday Ruby was making plans for a trip to Dingle on New Year’s Eve and Freddie got wind of it. Lisa explained what NYE was all about, fireworks, parties and dancing, such a romantic...

The next time I came into the room Freddie called me over...

“You won’t believe it Daddy,” he said, beckoning me with his little hands, Fred is a great man for using the hands.

“What?” I asked.

“There’s going to be a party!” he exclaimed, arms up in the air, hands out, “with fireworks and music and you and Mummy are going to dance.”

Long time since Lisa had the pleasure of being seduced on the dance floor by my special moves, so long in fact I wonder if my twinkle toes still have it... Where Fred got the idea that we’d be dancing I’m not sure but it was a lovely one. Maybe he just wants his parents to have a happy time.

One real improvement since Fred went on the extra med has been in his everyday awareness. The things most of us take for granted like knowing what day it is or what a day means have been lost in the fog of his drugged state. The extra med seems to have given him more space between seizure attacks, allowing him to think and take stock of life. It’s obvious from the improved reading, memory retention and just Fred being the boy we know he can be. The one downside so far has been that he just cannot go to sleep at night; sometimes I can hear him sighing in bed beside me at 1.30am, waiting for the night train.

So it was on Sunday night, but with him talking about the fireworks. When he woke Monday morning he was still going on about the fireworks.

“I’m so excited Dad, about the fireworks...” I think was the first thing he said that morning.

Our problem was where we going to find a fireworks display. Ruby was going to the display in Dingle, but that was at 10pm, too late and too far for Fred. There was no sign of Tralee having anything. At about 4pm, Lisa took Ruby off to Dingle. Fred and I went to the door to wave them off. As they went a little piece of paper was blowing in the wind around the courtyard. It caught in the corner by our front door and I picked it up to throw it in the bin. For some reason I looked at it and what was it but a notice of a firework display...yes a firework display. Not only was it on that evening, at 7.20pm, perfect timing, but it was happening from the old railway platform, no more than a couple of hundred metres from the back of our house. Now I could tell Fred there would be a fireworks display and that we could see it.

His little face lit up...

“Can we go now?” he asked.

“Later,” I said, not believing our luck.

So the two of us had dinner and passed the couple of hours in peace. Fred watched Godzilla on the DVD player he got from Santa and I watched the classic “Kind Hearts and Coronets”. About 6.30pm I could hear the cars and people arriving outside, but said nothing...then at 7.15pm, with still no sign of Lisa, I said “do you want to see the fireworks?” He was up faster than lightning and the two of us shot upstairs.

We sat on the bed and I opened the two windows as wide as they could go. It was freezing so the two of us got under the duvet. Lisa arrived just in time.

The first firework went shooting up and exploded in a shower of glittering stars with a massive bang. We didn’t miss a second of it from where we were sitting. It was like our own private display. For the next fifteen minutes or so they exploded into the sky, all in full view. Freddie was beside himself with excitement, screeching and laughing with each one. I looked at his face, it was full of wonder, he was truly happy, loving every second of it. Lisa and I, though not fully relaxed, loved it too, loved seeing our man so happy, neither of us spoke, it wasn’t necessary.

When it was all over, Freddie thanked me. Me?

It really was a perfect end to our peaceful Christmas, the only thing missing was Ruby, but as a teenager she has better things to be doing than spending NYE with her parents. I was the same. When she came home the next day, Freddie filled her in on what she had missed, not gloating, just telling her. He always misses her when she’s away.

During the week I wrote to Dr Shahwan at Temple Street Children’s Hospital. We wanted to thank him for taking Freddie’s case and also just keep us in his mind. The next morning I got a call from his epilepsy nurse. She wanted to assure me that Fred was top of the list and that they hoped to get him on Sunday the 13th for tests. “For as long as it takes,” she said. By the time she was finished I was in tears, maybe something was happening at long last. The date hasn’t been confirmed yet but as she said: “don’t worry, once you have a foot in the door you’ll be taken care of and you have your foot in our door.”

Who said the written word was dead?

So from the horrible beginning to our Christmas, not knowing what it had in store for our Fred to today and the lovely time we’ve had, it’s been a great seventeen days. Plus we have something to look forward to in the New Year.

Tomorrow Ruby is back to school, back to 7am rises, back to driving to Dingle every morning but who cares? It what we’ve being doing for the last eighteen months and those beautiful Spring mornings are on their way.

Freddie is 10 on Tuesday.

Happy Birthday to our wonderful little man.

 

 

 

 

 

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Posted by John Verling

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