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

20Oct/130

Jeremy Paxman and the Peanut Butter Combo

Monday was one of those days which we hadn’t had for, well, 23 days. After the tough day that he put down on Sunday, Fred was dazed and confused from the minute he rose.  Even though the seizures were spread out, he had nine of them all told, from early morning till about midnight. Lisa had given him the Diazepam after number 5 which stopped them for a while but he had another two until she gave him his medicines in the afternoon. Then all was quiet until he was asleep that night and the last two hit about 11pm and at midnight.  It’s testament to the man he is that he got up and had breakfast Monday morning, as if it was just another sleepy Monday morning, the type we all have at the beginning of any average week.

Fred dozed his way through Monday and asked to go to bed about 7.30pm, which meant he missed Jeremy Patchman. For some reason Fred got into watching University Challenge with me and picked up Jeremy Paxman as Jeremy Patchman. Fred will ask: who are the good guys? The up team or the down team? So most Monday nights the question will be is Jeremy Patchman on and are we watching? Not this Monday though. When I went to bed about 11pm Fred was awake and his mother was in a deep sleep, no doubt Lisa needed to catch up on her sleep too.

When Fred is in recovery, like he was on Monday, his movements are very slow, deliberate as if his brain is really fighting through the fog. His words are mixed up and he may take an age to form a sentence, so much so that Jeremy Patchman would have fined him 5 points every time he tried to open his mouth. This makes the fact he made it back to school Tuesday even more incredible.

Tuesday the two of us got to school just gone 8.55am. Denise was delighted to see him, Jayden was sitting at his desk smiling and the whole class said “Hi Freddie.” There was a pretty little girl sitting at his desk too who was waving. I think her name is Ali, as Fred was talking about her as the week went on, a new friend. He did well, got lots of homework and even a badge from Denise saying that he was the best ever.

The way he puts up with what happens to him, and bounces back, means Fred is the best ever.

On Tuesday, as we were having breakfast he said he couldn’t go to school as he’d had ‘lots of faints.’ In the end he decided ‘oh ok I’ll go,’ as if he was doing me a favour. In truth I think he likes school, likes the friends he’s making and just the general social scene that is school these days. At break time he’s been playing gentle games with Denise and Jayden, just throwing a ball to each other, taking it easy as he can’t run around. Denise asked Lisa if it was ok if she introduced another game, which of course it was and she came up with a form of shooting hoops. So as the week went on, weather permitting, Fred had a whole line of kids joining in the game, more interaction for him, which is great to see.

Fred was still very sleepy in the mornings and it takes an effort to get him out of bed. Down the stairs he’d come, eyes still half-closed and just about making it to the kitchen table. Jokingly I offered him a cup of coffee ‘cos he looked a bit how I feel before my morning dose. In a few minutes he’d be sitting up though, eating his new found favourite breakfast. A couple of weeks ago I bought a big jar of crunchy, no palm oil, no added nothing, peanut butter. It’s a craving I get from time to time and if I see a good jar when I’m in the mood, I’ll buy it. Fred asked me one day what was in the jar. I told him and he asked if he could try it. He loved it and ever since Fred’s breakfast has been a slice of Mummy’s homemade brown bread, spread with peanut butter and scrambled egg on top. Or omelette or boiled egg, whatever type of egg we’re having that morning. Wordlessly Fred will munch through it, wash it all down with a glass of water before getting ready for school. This weekend we had baked beans as a luxury extra and they went on top of the egg and peanut butter...

“Hmm, delicious,” were the only words uttered over breakfast.

Fred can at times obsess about the one thing, we call it one of his figaries or he’s having a figary about something. This week it was Halloween. Lisa and I are delighted that he’s now aware of Halloween, is getting the excitement of it from the other kids and from it being featured in school work. Unfortunately when he was in the haze of constant seizures and not mixing with people his own age, Fred wasn’t picking up on these calendar events. Now this last while he’s been asking how long is it to Halloween and when will it be Halloween. I tried explaining the amount of days and he grasped the idea of it but wasn’t happy to have to wait so long...

“Fifteen days!” he exclaimed as we drove to school one morning recently, “I can’t wait that long.”

After I explained why it was fifteen days came the real figary...he needed a costume. After much debate with his mother it had to be a skeleton costume. Every day he was asking for the skeleton costume, from morning to night it was the skeleton costume and how he had to have it. So on Thursday morning as he set off for school, Lisa was taking him I was doing the Ruby run, the promise was made that I’d collect him and we’d buy the costume. The excitement on his face when he saw me at the gate was just lovely to see and Denise said that all he could talk about all morning was Daddy collecting him. That single minded way of his will be a great problem solving tool in years to come.

Off we set. The only place I could think of that had easy parking and would have Halloween stuff was on the other side of town. When we came to the turn-off to our house Fred was silent and then he said...

“No, don’t go up there...”

“Where do you want to go?”

“That way,” he pointed, “to get my skeleton costume.”

At the store we found skeleton costumes but unfortunately the only size was aged 5 – 6. I searched all over, just in case one had fallen down the back, but no such luck. The last thing I wanted to do was leave the little man down so we bought it and lots of Halloween decorations. Fred carried them to the counter, I paid for them and off we set back home.

At home I explained to Lisa that it was easier to get the small costume than to have Fred go on and on about getting one for the next few days. With any luck a right sized one will turn up and we’d get it for the big night. Fred showed Mummy his decorations and told her how they’d have to put them up to make the house scary.

As there was a second-hand clothes drive at the school that day, a fund raiser, Lisa went to pack some black bags while Fred and I looked at our purchases.

Fred had to try on the skeleton costume.

Kate Moss in her prime wouldn’t have squeezed into this one but Fred was determined. The two of us were laughing uncontrollably as we rolled the latex up and pulled the Velcro tabs together. The little man was doubled up by the constricting force or the costume. It didn’t leave much to the imagination either. Funnily enough the mask fitted perfectly.

Up the stairs we went to show his Mum. She nearly collapsed from laughing and Fred got a bit self conscious at us laughing so much but we reassured him that he looked great. Back downstairs Fred was delighted walking around, mask on growling in the mirror. After a few minutes playing I went to get his lunch and a bit later Fred called me...

“Can you get this off?”

The costume was cutting in to his skin around his shoulders. Laughing the two of us slowly rolled it off him and Fred suddenly doubled back to normal size.

“Don’t worry,” I said, “we’ll get a bigger one before Halloween.”

In the afternoon Fred was going on that he needed a bag to carry all the loot from trick or treating. Before he could start on another figary Lisa bought him a Halloween bucket when she was out and Fred was delighted.

The set-up was complete.

That night I was going to bed about 11pm. The others had all gone before me and as I was tidying-up I took in how the house was fully decorated in Halloween gear. Rubber bats, bunting, scary things hanging in the window and even Halloween tinsel over the fire.

On the floor was the skeleton costume, laid out in full, the mask at the head and beside it was Fred’s trick or treat bucket.

Fred had gotten his way; subtly the house had been turned into a Halloween Cave.

That single minded way of his does solve all problems.

 

 

 

 

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Posted by John Verling

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