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

30Jun/130

Six Months On

This has been a normal week for us. Yet so abnormal compared to the last few years that its one we never would have imagined happening. For the last five years, if not longer, Lisa and I have been consumed with fear, so much so that we’ve been scared to do anything. So many times did something happen after we’d done something that we lived in fear of consequences. Lisa would go out somewhere or dare go away for a night and Fred would have a seizure. Remarkably I don’t think the same happened to me but definitely when I went to the beach, on a walk or up the field behind our old house Fred had a seizure. All these episodes left us in fear of doing anything and many was the night that ended in tears or in anger. Tears, shared or shed in private, over our little boy and what was happening to him. Anger expressed in a good row or alone in a darkened room at epilepsy and anyone or anything connected to it.

Six months ago, to the night, Lisa, Freddie and I sat on our bed and watched the fireworks of New Year’s Eve explode over Tralee. It was such a magical night, the look of wonder on Fred’s face was priceless, and even now today it brings a tear to my eye. Even though it wasn’t said on the night I can bet that Lisa and I were both wishing the same thing for the year ahead. In fact I’d say that PaddyPower wouldn’t even have opened a book on that one, the odds would have been so bad for them.  Which all makes the week gone by so much more wonderful for the normality of it all...

Freddie spent a full week at school, again. Now we’re more worried about how he’s getting on in the classroom rather than if he’s having a seizure at his desk. The feedback from his teacher and Denise his SNA has been great. Fred has settled well, is learning, is popular with all the kids and has made some good friends.

As this was the last week we had to deal with the concept of school holidays, something Fred hasn’t had for a few years now...

“Dad,” he said on Monday, “Denise said something to me, something like this, ’on Friday we’re going on holidays.’” This he said with his arms up in the air and his palms out in excitement.

For the rest of the week Lisa and I were blue in the face from trying to explain his holidays were FROM school and not that were going anywhere...

“Are we going up the hills?” Fred would ask, up the hills being Fred’s phrase for going away. This comes from when living in Dingle we’d have to go through the hills to go anywhere.

It took a couple of days to put him straight on that one

“There’s no more school?” he asked me another evening. The idea of getting just a break from the class took a while to sink in.

Holidays just to do nothing; that really is something new to our little man in his new, normal life.

Two things are at play here: one is the fact that Fred just isn’t used to the idea of getting school holidays and the other is that because of his meds it does take him time to process new concepts. After a full week of explaining we think he finally has it but you never know with Fred, he may yet find another angle to question.

A couple of other normal things happened this week. For one I went away, to West Cork, just for the day to visit the Flood family on their annual trip. For once I wasn’t scared of something happening at home, of course I was aware that something could but I wasn’t consumed by it. Even though I was thinking of Fred at home, it didn’t take me over as it has done before, such much so that I haven’t gone away purely for my own reasons, for a while.  This was a trip to get a chance to see all the Floods and Cathy Berry in one place but it also had a special place in my own heart. By pure chance the holiday home they had rented was the very one my Dad had taken us three kids to back in 1974. The first holiday away after our mother had died. She had died in February, the holiday was in that June and I hadn’t been back since. So while it was another normal thing to do and another part of our doing every day things again it was also full of emotion for me in other ways. Life is so peculiar the way it throws up such connections and comparisons. My father had taken us away to try keep life as normal as possible and here was I back in the very same place almost exactly 39 years later trying to make my life as normal as possible too.  Of course I was conscious still of being away from Fred and as always dreading that call or making a call to find he was knocked out. Though I left at 5.30pm, I dearly would have loved to have stayed for dinner and maybe even over night. That would have been a bridge too far for me just yet, something in my head was stopping me and it’s something I’ll have to deal with in time. For now the day spent doing things like going for a stroll with Conor, lunch on the terrace or paddling in the waters of Red Strand with Ger and Conor was just wonderful. Leaving, I was anxious to get back to my own family but delighted I’d made the trip, for a load of different reasons.

Another everyday occurrence was Lisa and Ruby went away for a night. Of course Lisa was full of anxiety but she did it, someway relaxed that Fred is stable and she wasn’t going too far away.  For me being at home I was nervous too, I’m not as capable as Lisa in dealing with things but I’m getting better. It was great for Lisa to go spend time with her Aunts Marjorie and Helen,  cousin Thadie, Aunty Claire and the two Tynan sisters. For once she wasn’t asking me repeatedly if I would be ok, should she stay at home? It really is a good sign that it wasn’t the fact they were going away was the worry but only if her and Ruby would get beyond the first roundabout outside of town. They did and what’s more they had a wonderful time, chatting, laughing, walking and swapping stories like only those women can. Not once did we have an anxious call asking if everything was ok, asking if I was coping. No, we just chatted as we normally do and this allowed Lisa to get the break she so definitely deserved.

Back home Freddie and I enjoyed the peace of two men in paradise. When the girls left we went on a drive out to Fenit, stopping on the way for a bottle of lemonade, a treat for the day that was in it. On Fenit beach we collected shells for Mummy and walked in the sand. After a few minutes we got back in the car and drove out on the pier to watch the boats while drinking our lemonade. Fred was anxious to go back to the beach to get more shells for Mummy. Though she was away she wasn’t far from his thoughts. So after getting a good collection we went on another drive; Fred had a snooze on the journey home, tiring times for a little man.

That night we were sitting down for dinner but Fred didn’t like the look of what was on his plate. In fact he coughed up his first bite into a cloth. Because we’d been out gallivanting all afternoon the fridge was fairly bare and I sent him inside while I rummaged about. The dinner he ended up having broke all the rules but the look on his face when I brought him in a tray with a plate of crispy chicken pieces, fried garlic potatoes and baked beans made it all worth while...

“Jesus Christ Dad, thank you,” he said, the look of excitement at the fact we were being bold, coupled with the idea of the delicious dinner was just beautiful.

“Don’t tell Mummy or Ruby,” I said.

“I won’t.”

That was the last I heard from him for a while.

We slept well Thursday night and woke early for his morning meds. At school Denise came and collected him. Fred was laden down with Godzillas. As it was the last day they were allowed bring their favourite toys with them and so while I had been making his lunch Freddie was stuffing his school bag with the figures. What the other kids knew of Godzilla I don’t know but I’m sure after a morning with Fred they would have know a lot more than before.

Later Denise walked him back out. Denise gave me a bag of Fred’s stuff. Just homework stuff I presumed; the two said their goodbyes and we drove home.

Back home I went through the bag.

In it was a book of memories from Fred’s first few months at school. It caught me totally unawares and I broke down in tears. This beautifully and thoughtfully put together scrapbook of his time so far at Blennerville was just too much for me. There was a self-portrait, drawings of Godzilla, a painting of Fred and Mummy at the beach and to top it off pictures of Fred with Jayden posing for the camera and of Fred playing the tin whistle in class.

Just a normal end of year book but so not normal for us that it was just wonderful.

Fred came in and in a matter of fact way went through it page by page, explained what each bit was about.

A really wonderful way to finish what was just a normal week in our house.

Who would have guessed six months ago?

 

 

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Posted by John Verling

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