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

26May/130

Home Lunch

Another Sunday and another week has gone by. Today is day fourteen since Fred’s last cluster of seizures so we’re expecting something to happen any moment. It’s not something we’ve spoken of but both Lisa and I know it is coming and probably have been on alert since Wednesday. Fred likes to turn convention on its head and do things his way so you never know when he’ll succumb. The last couple of mornings I’ve woken thinking is this the day and tried to leave it at that, we have to live around the epilepsy not let it dominate us. Even when I was thinking on Friday of what beer I’d get in to keep me company when watching the Champions League Final Saturday evening , the thought struck me that a few months ago I wouldn’t even have planned a day ahead. There is a bit of confidence returning to our lives, just a little but enough to let us live a bit.

Fred’s return to school has contributed a lot to this. He’s getting on with life again, loving it and events that would have filled us with dread are losing a bit of their fear. This week he went up to the two hour mark in the mornings. This included the 10.30am break, what we used to call elevenses. This ten to fifteen minute break is also a time for the kids to have a snack, usually half a sandwich from what I can see. A good way to keep the kids sated till lunchtime and also to feed the kids who may have missed breakfast. So Monday was the first day of this break for Freddie, probably the first time he’d been in a school playground in four years. Lisa was on school duty and she was beside herself with worry. The small kids aren’t allowed run around much as the yard is small and there are a lot of kids, so at least the chance of Fred keeling over when playing tag was eliminated. Plus his SNA, Denise, the softest touch Fred could wish for, was to be with him at all times. These mornings she comes out to the car and walks him in and walks him out again at home time. So at 10.30 they all came out, Fred with his new friends Jayden, Joshua and Daniel along with the 100 or so other kids of Blennerville National School. Lisa was up to the high doh, trying not to be the mother hen but watching his every move from behind her Kindle. They played basketball and each time Denise’s head disappeared from view Lisa held her breath till it popped up again.

At home I was waiting, doing some work and trying to rationalise everything. When the two walked in a little before eleven I was at the door...Fred sauntered by, schoolbag on his back, laptop bag in his hand...

“Oh, Hi Dad,” he said in passing.

“How did you get on?”

“Oh, fine”

“Were you outside?

“Ya,” as if it was the most normal thing he’d ever done, which it should be, but hasn’t.

“Dad I was playing basketball!” he said, excited by the memory of it.

“With who?” I asked.

“Oh just Jayden, Daniel and Joshua.”

The first morning was over and it was such a relief that it went so normally, as if it was something he’s been doing for the last four years without thought. His poor mother followed from the car, not looking as carefree as Fred but glad too that another milestone has been passed. Fred was in the sitting room, taking off the uniform, that was over with for another day.

“Mum,” he shouted, “can I have my lunch?”

This was the beginning of another of Fred’s little phrases, another look at how Fred sees the world. As the week went on he’d go off with a sandwich and bottle of water each morning and then look for another lunch when he came home, as if the effort of school had him famished. Soon he came up with a term for it... “Home lunch”...as he said when I asked him Wednesday had he not eaten his lunch already he said “that was my school lunch now it’s time for my home lunch.” He’s some little man for his phrases.

On Tuesday it was my turn to take him to school. Denise came out and collected him and I tried reading my magazine while waiting for him. At 10.30 all the kids came out, Fred and Denise a bit after them, he must have been finishing his school lunch, and soon the boyz were playing basketball. So as not to be in the way of the others they play in a corner, just out of vision from the road. Now I could see how Lisa was so worried the day before, the man was playing basketball and you couldn’t keep a close eye on him. Come 10.40 the kids were still out so I thought they must be out till 10.45, but that time came and went. As did 10.50. 'What are they up to?' I thought, sitting in the car getting more and more nervous by the passing minute.10.55, 56, 57, 58, 59 came and went, I was getting worried now. Then at 11.01 the girl ringing the bell came round, as it was such a fine day the teachers gave the kids an extra 15 minutes outside. Despite my fears I was delighted with the idea. Now they all lined up to walk back into the classroom. I watched Fred; Denise had to walk him up and explain what they were doing...he wandered away once but she got him back. Conformity definitely isn’t in Fred’s make-up; the idea of standing in line isn't for him. Then when inline I saw the hand go into his pocket and he squeezed something out to show the kid I now know is Jayden. It was his collection of SpongeBob Squarepants cards; he’d had them in there all morning and waited his chance to show them. Jayden looked suitably impressed.

When we got back home a very tearful and worried looking mother met us at the door. As we were so late, it was nearly 11.30 she feared the worst had happened. Fred tried to breeze past but was caught up in a big relieved hug from Lisa. He wasn’t that interested, just wanted his ‘home lunch.’

On Thursday Fred managed to chip his glasses frames and went to school with then taped up, just a small bit but enough.  Lisa made an appointment with the eye doctor. In his early years Fred had gone through about five pairs due to circumstances but we’d managed on these ones for about three years. Off we went after lunch, back doing another normal activity. Not long ago the idea of going out, sitting in a waiting room would have filled us with dread.  Fred sat in the chair and chatted with the man, reeling off the letters when asked and only stumbled over the last lines. While Fred needs glasses his eyesight is still very good. Fred now had it in his head that he was getting new glasses and when we went to the opticians with the prescription he went straight up to the optician...”excuse me but I need new glasses, black ones.” His little eyes pleading that not even the hardest heart could say no.

Now we’re on day fourteen. Fred had a tiny frontal lobe last night as he fell asleep. So small that I hardly noticed it but we took it as a sign that the cycle was coming round. At 4.30am this morning Lisa came in with his meds in an attempt to at least ease him into the day of seizures we were expecting...

“I don’t want to go to school,” he said in his sleep as we roused him.

Poor little man, he now knows which day is what, which is excellent and he wasn’t about to be caught out.

He had four more tiny ones before we got up at 8am.

What will happen now? We don’t know, he’s twitchy and a bit dopey but his mother has him cuddled up next to her...

If and when something hits he couldn’t be in safer hands.

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Posted by John Verling

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