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

28Apr/130

What a Week

The usual Sunday morning in our house, Ruby watching her YouTube videos, all four of us under our blankets just taking it easy. Yesterday was a bad day, Fred’s first day of seizures in 15 days but, as is the way at the moment, they came hard and fast. The gap between seizures seems to be settling on a 14/15 day rotation, which we’re delighted with, but the episodes seem much stronger.  The great thing about there being a break between seizures is that we begin to relax and forget about epilepsy, we always know its there somewhere, waiting to hit, but as advised, we enjoy the free days, value them and not live them in fear of what may happen.

 

As has been the way recently he had the seizure in the morning. The little man had gone to his mum’s bed about 4am, leaving me on my own for a change. As I was getting ready for the day, about 8.30am, I heard that horrible sound, the one I could pick out in hurricane, the howling sound Fred makes when going into a seizure. When you haven’t heard it for a couple of weeks you hope that it’s not what you think it is, but it is, it always is. Upstairs Lisa was with him, holding him, keeping him safe. While deflated, you’re always hoping that he might go longer each time; we’re also trying to be positive, deal with the incident but not let it take over again. Our plan, now that he’s fine today, is to let him recover and go to school tomorrow. Make his life as normal as possible, treat the epilepsy as part of Fred’s life, not all of his life.

 

Easier said than done but with Lisa’s strength and determination we’ll get there.

 

Yesterday I was due to go to a meeting inCork. Once Fred started seizing I decided not to go but Lisa insisted that I did, she could cope, Ruby was with her and we couldn’t let the epilepsy dictate our days. Reluctantly I agreed, I wouldn’t be gone for long and Rubes is a great help when needed. We carried Fred downstairs, not easy when he’s knocked out after a seizure, but we did and made him comfortable on the couch. He settled himself and I got on with my Saturday morning duties.

 

By the time I was ready to go, Ruby was up and the house was stocked with all that was needed. Fred had had a couple of the small frontal lobe seizures but it was three hours since the big one that had announced epilepsy’s return.  It’s hard leaving in such circumstances but as Carthy Madigan advised, we can’t let the epilepsy dictate anymore; just get on with our lives as much as possible. On the way I called home a few times, all was ok, just a couple more frontal lobes. It was a beautiful spring day and the drive to the Real Capital was a sunny one with plenty of cherry blossom lining the route. However the beauty was lost on me, all I could think of was my little man and even though Lisa was telling me not to worry, I did.

 

On arriving I rang home, all was still sort of ok, Fred was sleeping, the two ladies having a lazy Saturday. The meeting went well but during the first break I rang home, he’d had a three big tonic-chlonics, the ones we hate, all a minute long but Lisa gave him a shot of Stesolid to try put a stop to them. Back in the meeting, I couldn’t concentrate and when it was polite to, I left, driving down the narrow lanes of the Northside, held up by traffic and I couldn’t wait to get on the open road.

 

By the time I got home he had another two, one was just finishing as I got in, it had been two hours since the last one, at least a gap was opening up. Ruby was fed and we tried to see if we could rouse the man with some ‘crispy chickens’ but no luck, he really was knocked out. A couple of times he woke, looked around but dropped back into unconsciousness very quickly. About 9.30, the two went off to bed, Lisa giving Fred a piggyback, me behind, standing guard. By the time of my bedtime the two were well settled, so much so that I was sent upstairs to sleep on my own. At 4am I got a text, bleary eyed I tried reading it, it was from Lisa, “Fred wants his Daddy.” He’d woken and noticed the wrong parent was with him. This after Lisa spending all day with him, minding him, caring for him, seeing him through all those seizures, doing all the nursing while I was off inCork, no, mother was dismissed and the father welcomed in her stead.

 

Oh, the lot of the unappreciated Irish mother…

 

 

On Monday afternoon Fred wanted to go to the beach with me, something I hadn’t had the courage to do in over two years, probably longer. He loves the beach, but has had a few seizures there in the past and the idea of a beach trip has filled me with dread ever since. But if Lisa was being strong enough I had to be too, we weren’t going to get anywhere with the normalization process if I didn’t practice what I preached. So without thinking about it, we gathered up our bits and the two men headed off to Fenit, where Lisa had previously found an easy to-get-to beach.

 

Funnily enough it was a great relief to be on the road again, the two of us off on an adventure, like old times, I loved it. Fred knew exactly where to go, he has a memory for directions. He also has his own way of giving them…

 

“You drive, drive drive…” – go straight on

“Go round, round, round…” – go around a bend in the road.

“Go down, down, down…” – go down a side road.

 

Combined with Freddie pointing out remembered landmarks on the way, we easily found the little beach. I drove down as far as I could and the two of us got out. Fred showed me a good spot, where we sat and gathered stones. He’d brought a paintbrush so we could brush the rocks and look for dinosaur fossils like inJurassicPark. After about ten minutes, it felt like hours, we packed up and headed home.

 

On the way we got an ice cream as a treat. This really was a big day, a trip to the beach and an ice cream, all I could think of was that I wished we hadn’t lost the last few years, how I loved being out and about with my man. The two Verling men and the open road, no stopping us. We spoke about his big day Tuesday, the first day back at school. Fred wanted to see his school and so we drove down to see it, the kids were just coming out and we slowed to have a look…

 

“I’m scared Dad,”

“Why?” I asked.

“Of the big boys, they won’t like me, those big kids,” Fred looked at me with those worried eyes, the brows arched in the cutest manner that just makes you want to kiss him.

“Of course they’ll love you, they’ll all want to play with the Fred when they get to know him,” I joked.

“Oh, all right, I’ll go,” he said the eyebrows arched even more, if it was possible.

 

So this really was to be a big week, Fred’s first trip to his new school, his first time sitting in a full classroom in over three years. Tuesday was the day. On Monday Lisa went and met all involved, the headmaster Terry, the teacher, the SNA, and Fred’s home tutor Elaine. The idea was to get everyone on the same page, so there would be continuity in his education.  Tuesday morning Ruby and I set off, leaving the two to get ready. By the time I got home all was over, Fred’s first day was behind him…

 

”I was brilliant Dad,” he told me, as I came in the door but in a nonchalant way, as if it was only to be expected.

 

Lisa, having spent the hour outside the school having twenty nervous breakdowns, was delighted the first day was over; delighted we’d made the first step.

 

It felt like normality was returning at last.

 

For the rest of the week all we wanted was for the first week to go without incident.

Each day Lisa sat outside the school, on my way back from Dingle I’d stop and offer to take over or to get a cup of tea. Lisa, a bundle of nerves, couldn’t relax, her eyes fixed on the door of the school, her phone gripped tightly in her hand. If she wasn’t watching the door, she was checking her phone, waiting for it to ring. There was no way I was taking over; in fact, I was hunted away. This meant that I was at home waiting for the man to come in, bag on his back and in his new uniform, looking the scholar, even with the tie askew.  As soon as he got in the door, the uniform was pulled off and his civvies put on, the best part of the day for Fred, I think.

 

We got to Friday, all was ok, the first week was down and we’d survived. Fred loved his time at school and it seemed the other kids loved him too.

 

On Friday evening the two of us were chatting before he went to sleep…

 

“Dad?” he asked.

“Yes…”

“Has the sun gone to bed?” was the question.

 

He still retains that beautiful innocence even though he’s been through so much.

 

Long may it last.

 

Share

Posted by John Verling

Filed under: News Leave a comment
Comments (0) Trackbacks (0)

No comments yet.


Leave a comment

No trackbacks yet.