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

11Jan/150

The Very Last Post

How to begin the last one? For the last one hundred and eighty Sunday mornings, mainly Sundays as life has intervened at times, I’ve sat down and written of our week. What had begun as a short term plan to see if I could write, and write regularly, turned into Verlingsweek, at which I became very disciplined at producing. That Fred’s epilepsy took a turn for the worst when only two Sundays in was coincidental but Fred then became the dominant theme of each week’s post, so much so that the project evolved into a diary of his life. Over a couple of pints with friends recently they commented how they read Verlingsweek so they don’t have to ask me about Fred, which I now remember as being one of the reasons I initially included his epilepsy in the weekly posts. Now Fred is growing up he deserves his privacy and I can’t write of our week without his condition cropping up, his epilepsy is our week. This past Thursday Fred turned twelve and I’ve decided it is as good a time as any to stop writing Verlingsweek, to give him a private life again. Fred is becoming a young man and one needs to do that in private, not with your father cataloguing your every move...

All week Fred had been counting down to his birthday. For the last three Thursdays he’s been counting down to an event; Christmas, New Years and his birthday, they fall on consecutive weeks. Fred was planning a lot. One was for all his school friends to come over, one I think was a surprise party and another was for Ruby’s friend Sarah to come for tea. In the end we decided to keep it as low key as possible and to do some of Fred’s favourite things on the day.

In the morning Fred came down to breakfast with cards from his parents and Ruby on the kitchen table. We made a fuss over him; how great it was to be a grown up boy and how much we all loved him. Unfortunately for Fred he still had school, though he did claim that he couldn’t go as it was his birthday. Later when showered and dressed we set off and dropped Ruby first to her school. At Fred’s I left him at the gate; he now walks in on his own as any other kid would do and Denise waits in the classroom for him. It is lovely watching him head in, hands in the pockets and not even looking over his shoulder at me. If there isn’t anyone in earshot I’ll say ‘I love you,’ to which he’ll reply ‘Love you too.’

Before heading home I went and bought the ingredients for the chocolate birthday cake which he’d chosen. At home Lisa got baking while I went to my office. The postman arrived with a card from Granddad Jimmy which we brought with us when collecting Fred at lunch time. Unfortunately his Mecha Godzilla, which he’d also asked for, didn’t arrive though I knew it was on the way. Lisa and I drove over to collect him after school which is a special treat for him these days. Usually it’s just me.

At the school gate he came out all smiles...

“I did brilliant Dad!” he declared, to which Denise nodded in agreement.

In the car he opened his card but looked about...

“Hey where’s my Mecha Godzilla?” he asked.

“It didn’t arrive Fred,” I answered, “but as it’s your birthday we’ll go to the toy store and get you something until it does arrive.”

“The big toy store?”

“Yes the big one.” I answered.

“We’re going to the restaurant for a birthday lunch,” Lisa said to which Fred smiled in delight.

At The Grand, Fred and Mum got out while I went to park the car. When I arrived in the two were sitting at a high table towards the rear of the restaurant with the menus unopened. There wasn’t a need to look at them; Fred knew what he was getting. Soon the waitress came down and asked if we were ready to order...

“Ah excuse me,” said Fred, hand in the air as if in school, “I’ll have a white bread sandwich with ham and coleslaw, please.”

The lady nodded and took the rest of our order.

“Fred will have a hot chocolate too,” Lisa said.

“For his birthday,” I added.

The birthday lunch was eaten, the hot chocolate with marshmallows arrived and the waitress brought Fred a load of extra biscuits ‘for your birthday,’ she said. He was getting spoiled, no harm in that.

Afterwards we dropped Mummy home before Fred and I went to the ‘big toy store.’  Fred is like the proverbial kid in a sweet shop when in a toy store. He can’t make up his mind, keeps walking up and down the aisles, always looking for what in all likelihood isn’t there, or else, like his mother clothes shopping, he’ll go back to the first toy he looked at and decide it’s what he wanted as if he just found it. After a quarter of an hour of this I was losing my patience. On walking up one aisle Fred stopped one of the assistants...

“Ah excuse me,” he said, “I’m looking for a big blue dragon.”

“Ok,” she said and walked off, Fred following.

Down another aisle she found on a higher shelf a big blue dragon.

“How about a red one,” Fred asked.

She climbed up and looked at all on display but no red ones. Off the patient assistant went to check the stock of the computer but returned to say none were in stock. Fred sighed and said the blue one was fine. We bought it along with a batman DVD and headed for home. Back in the kitchen we opened the box and Fred went off to play with the blue dragon, the happiest man in Ireland.

That evening for dinner we had another requested meal. Fred wanted burgers and chips, “and the burger buns,” as he also insisted. The homemade oven chips, burgers and buns were eaten, nay demolished, by all of us and a fully stuffed Fred got up from the table.

“Wait for your cake,” Ruby ordered and Fred sat down again.

The lights were turned off, the candles lit and we all sang ‘Happy Birthday’. Fred was beaming; all was working out to plan. With cameras at the ready he blew out the candles and the most delicious of chocolate cake as baked by Lisa’s fair hand was eaten.

Fred cake

Squeezing in a slice on top of the dinner wasn’t easy but we managed it. Fred and I struggled inside to recover, Ruby went off babysitting and it really was the nicest of days.

The next afternoon I went to collect Fred from school. Ms O’Connor and Denise told me Fred was full of chat about his birthday, that he’d had a great day. We all had in truth. His Mecha Godzilla arrived Friday morning and on Saturday Ruby’s friends came over for the weekend, rounding off a great couple of days for the man. Now it is Sunday morning, Fred is watching Godzilla online while the ladies are breakfasting downstairs. Lisa has gone off for a run with Muttley and all is calm in Ballyard.

Verlingsweek is ending on a high note. Thankfully it was good one for Fred considering some of the weeks I’ve written about over the last few years. While his epilepsy has stabilised we’ve also learnt to live with it and to not let it dominate us. There is a long road ahead of us but at least we are on that road and many people are helping us. Fred is a wonderful, caring, funny, intelligent young man with a unique look on life. The next few years will be all about him fulfilling his potential, something I’m looking to watching Fred do in style.

For now I’d like to thank everyone for reading, for commenting and just for being a listening ear over that last one hundred and eighty Sundays.

Goodbye from us all.

 

 

 

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4Jan/150

The Night of Little Sleep

By 3am this morning Fred was on his way to his mother’s bed for the second time, pillow under his oxtor, out into the dark night attempting once more to find sleep. He’d gone up to our bed about 10pm with Lisa, to go to sleep but when I went up at 11.10pm Fred was looking at me awkwardly as Mum was fast asleep and he was wide awake. In I got, Lisa went off to her bed and Fred cuddled up. By midnight I was finished my book and Fred was still awake...

“Maybe I’ll go to my Mummy,” he said, setting off for the first time.

Shortly before 2am he was back, pillow tucked up tight...

“I think I’ve found my sleep,” he said, standing at the bedroom door like little boy lost.

In this time I hadn’t been to sleep as I had a feeling he would be back and being a light sleeper these ideas prey on your mind.

“Get in,” I said, “and go to sleep it’s too late for all this wandering around.”

“Yes my Dad.”

I didn’t find his love for me cute at that time of the morning, all I wanted and needed was sleep, for the two of us.

Forty-five minutes later Fred was still sighing, rubbing his legs around on the bed, obviously not asleep. I switched on the light and took up a book of Raymond Carver short stories I keep by the lamp for just such occasions. Fred was lying on his back, eyes scrunched closed, pretending to be asleep.

“Go back to your mother,” I said sternly, patience long gone.

“What?”

“Go back upstairs and don’t come down again tonight, you need to sleep.”

“Ok my Dad,” and off he went, trusty pillow stuffed up under the oxtor once more.

Raymond Carver wrote fast paced short stories and the subject matter is never the happiest. His sentences are short and his narration tends to fly along, probably not the best for helping one to sleep. Four stories later and I was still wide awake but at least no sign of Fred. At 5.35am I took one last look at the time on my phone and turned off the light, eventually drifting off to sleep.

Why Fred couldn’t sleep is anyone’s guess. He had a couple of seizures Friday afternoon which no doubt threw his system out of kilter. All this Christmas activity plays havoc with all of us and Fred has had a fairly lazy time of it. When he had the seizure on Christmas Day we feared it might be the change up to 400mg of Tegretol from the 200mg. Lisa went back to 200mg immediately after that and thanks to the kindness of a friend combined with the help of a pharmacy in Killarney we now have a supply to do us through to February, when Novartis say the 200mg will be back in general supply. The fact he now had another seizure a week later might point to the change not having had an effect, though we are not convinced, Fred is definitely better on the 200mg dose. Apparently ‘the holidays’ are the worst time for seizure control with bad sleep patterns combined with bad eating and little exercise leading to breakthrough events.

Who knows anymore, except that we do know Fred on 200mg and on regular routines tends to deal better with his epilepsy. Tomorrow sees the return to school, back to normal and, much as I’ve loved this break, it might be the best thing for us all.

Back to early morning rises, the school run and homework. Since the turn of the year I’ve been trying to get Fred around to the idea of the 2015 being the year of the big steps in improving himself, becoming the great young man he is capable of being. Fred will be twelve on Thursday and we’re using that as the milestone for him to aim at, doing what a twelve year old would do. It won’t be easy and there will be a full year of work ahead of us but Fred will respond well, he’ll work hard at school, do a few jobs around the house and the such, if only to keep his parents quiet.

Now it’s mid-morning. Fred and Ruby are watching TV, Lisa is pottering around doing Sunday morning jobs. The sun is shining and it is a beautiful winter’s day. The plan is to go out for a drive later; I had gone back to bed after breakfast but of course I couldn’t sleep so I’ll let the day wash over me and I’ll be exhausted by 9pm.

As for our Fred? I wouldn’t be surprised if he’s still wandering the house come 2am...

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