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

30Mar/140

Such a Simple Day

It’s a beautiful spring day in Ballyard. Freddie got the notion this morning of rearranging his / our bedroom, “just like Ruby,” he said, through his stretched voice.  When I got back from shopping Freddie had got his Mother out from under her blanket and had moved the bed around, to under the window. Not only that but he had set himself up for the day with his DVDS and player, spread out on top of the duvet, under which he was ensconced.

His stretched voice is from the VNS putting pressure on his voice box each time it kicks in but only for a few seconds and if he happens to be talking. Small price to pay if it works. Last Sunday, though a cluster day, seven in all, wasn’t as bad as previous ones. The seizures were spread nicely throughout the day and we didn’t have to intervene with the diazepam to stop the run. For us, and of course Freddie, not using the diazepam is a major improvement. The drug is so strong it lingers in his system for days making him sluggish and sleepy. Dr Amre says it slows the brain for days afterwards and this is very obvious with Fred. So he slept well Sunday night, stayed off school Monday but was coming back to normal by Monday evening.

On Tuesday as we got ready for school he looked very contrite, standing in front of me, school shirt on, open at the collar....

“What is it?” I asked.

“I’m sorry Dad, sorry for all the fainting,” he said, head down, shaking it slightly from side to side.

“It’s not your fault,” I said, holding him to me, squeezing him so tightly I could feel the VNS under his skin.

“”Oh?” Fred said a bit quizzically, “that’s ok.”

We finished getting dressed and rushed off to school, not wanting to be late for Denise. At the classroom door Fred was hesitant about going in. The noise of the other kids talking Fred finds very disconcerting. As he can’t keep up with conversations a classroom of kids chattering just comes across as loud babble. He was looking at me, shaking his head...

“I can’t go in there Dad, it’s too noisy,” he said.

Then couple of kids passing all said “Hi Freddie” and even Jaden passed, smile on his face that his friend was back at school.

“You can,” I said, “and look everyone is happy to see you.”

“But Dad,”

Then Denise came and took his hand, Fred walked in slowly, head down and with the worries of the world on his shoulder. When I came back a few minutes later with his bottle of water, he was well settled in his desk, books out and his day begun.

That afternoon he had Ms O’Se around, no escaping for our Fred but she was happy with his work, though she commented that he was a bit tired. Whether that was put on by the man or just a natural result of Sunday combined with being back at school we’ll never know; who does when it comes to Fred?

On Wednesday morning, just after Lisa and Ruby had gone off to Dingle, Fred said he had the confusion.

“Do you really have it?” I asked.

Fred nodded, so we went inside to lie down and I gave him a few swipes of the VNS magnet.  I sat in beside him and he cuddled up. It was 8.15am and I thought I’d give him a few minutes to recover. About 8.25am I got up, saying that I had jobs to do. Fred wasn’t in a sleep by then, normally in the circumstances he drifts off quite quickly.

“With all this confusion Fred, we won’t be able to go the Waterford at the weekend,” I said. Lisa and I were planning a trip if all was ok, just a day away to give us all a change of scenery. We hadn’t yet mentioned it but I decided it may be a good time to play the trump card.

Fred shot up from under his blanket, a big, beaming smile on his face...

“Tricked you!” he exclaimed, pointing a finger at me, laughing as he spoke.

“We you pretending with the confusion?” I asked, needlessly.

“Fooled you Daddy.”

I gave him a talking to about how we needed to trust him with the confusion.  In fact I wasn’t too annoyed, remembering my own pretend sore throats and pains in my tummy from wet school day mornings. If anything I was relieved that he was keeping the epilepsy at bay.

Fred nodded as I explained and promised that he wouldn’t do it again. We got to school just as the bell went and he went off with Ms O’Se and the other kids for the midweek socializing time. This time, with just one or two other kids, initiated by Ms O’Connor, is an attempt to get Fred interacting and talking more. Little did we know the trouble it would cause....

Fred came home upset, very upset. He stood in front of me say that there was a big problem at school. Jaden wasn’t talking to him anymore. At the social class Fred had made a new friend, TJ and Jaden was very put out. Fred, in an attempt to make TJ feel welcome had spent a lot of time with him, playing and laughing. He even invited him to come to Waterford. Jaden was devastated and blanked Fred for the day. Poor Freddie, he had been told to integrate more and now that he had he’d hurt his best friend. Little Jaden must have been very put out as he is so very caring of our Fred. I tried to explain that it would probably be ok, that Jaden would have forgotten all about by the next morning.

Thankfully he had and Fred came home in great form. They had made a Mother’s Day card at school which he had behind his back. He presented it to Lisa and they had a big hug in the kitchen, followed by some great lines...

“You are so beautiful my Mummy, I love you so much.”

“You are so pretty and so good at caring for me, I love you my Mummy.”

Fred knows how to use his words, how to break his mother’s heart. The hugging went on for ages, along with a lot of cracking, heart breaking one-liners.

Oh that boy.

All week the talk was of Waterford. Denise said it was all he talked about, as did Ms O’Se. Once Fred gets something in his head it can be very difficult to get him thinking of anything else. Denise was said to be very cross that he wasn’t concentrating on his reading, just thinking of Waterford...

Eventually Saturday morning arrived, the countdown was over.

All went so smoothly that it was difficult to remember that just a year ago we wouldn’t have dreamed of doing such a trip. Lisa and Fred had the back to themselves, Ruby and I the front. After a while Fred was driving his mother “distracted” with asking where we were, what town was next and are we almost at Waterford? A bit of a change from ‘are we there yet?’ For awhile he was asking who lived in each town named to which the answer ‘nobody we know’ was wearing a bit thin. A coffee stop in Midleton broke the tension.

At Uncle Bill’s we were welcomed with open arms, Fred going off with his cousin Lucy to watch movies and I could hear plenty of chat coming from the front room. Fred was making an effort and wasn’t calling on us for help. Even when I told him it was time to go he wasn’t happy and it was only that we were going to see Aunty Claire could I get him away from Lucy.

At Aunty Claire’s Fred ran in from the car and nearly knocked Claire off her feet. For a good five minutes they hugged, Freddie not letting her go. We stayed in the car watching, the plan was to go for lunch in Dungarven and Fred was only fetching Aunty Claire. In the car Fred was beside himself, sitting next to Claire in the back, beautiful Mummy forgotten. At the restaurant Fred had to sit in with Claire and they both had the same lunch. Poor Aunty Claire even had to accompany him to the bathroom, for all the pleasure that entailed. By the time it got to five o’clock it seemed such a shame to have to break up the party. But it was the end of a great day. A simple family day out but when these go so well for us it is a major achievement. Fred said his goodbyes to Aunty Claire we headed for the West.

In the car Fred cuddled up to his Mummy once more. He hadn’t forgotten her completely and he slept laying up against her, under his blanket, the sleep of a contented man.

Last night as the two of us were about to go to sleep I asked what was his favourite part of the day. Without hesitation Fred answered...

“The restaurant, it was delicious and Aunty Claire was there.”

With that he rolled over and into a deep sleep.

A perfect end to a perfect day.

 

 

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Posted by John Verling

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