Sunday morning in Ballyard, what a line to write, one I’ve been waiting long to do so and so far it’s been worth the wait. Comfortable, cosy and a lovely family home, what more could a man my age ask for on Father’s Day? Thankfully my family don’t take such days seriously and anyway Sunday is always father’s day in our house, its my one day at home, the day I try make up for the other six. Nothing special but I get time to write, cook, drink my coffee, read, arse around, walk the Muttler, be with my beautiful wife and watch football. Freddie loves having me around, he calls Sundays ‘family day’…Ruby is happy to know I’m around for breakfasts, snacks and hot chocolates, the things a Daddy does for his darling teenage daughter. This weekend she has Hannah around so much time is being spent in her bedroom, chatting, laughing and no doubt discussing boys. It’s now gone noon and no sign of them but I am awaiting the text asking for brunch.
Even though it’s a new house there was nothing new in the week we just put down. Tuesday evening I was coming over theConnorPasswhen I missed a call from Lisa. Pulling into a gateway to call her back the usual feeling of dread was in my stomach and when Lisa answered, I could tell from the tone of her voice that not all was well.
“Sorry pet, just telling you we need milk”
Not fooling me and with me getting annoyed…
“What’s wrong, what’s happened?” I snapped
“Don’t you get cross with me!” I was told in a no-way uncertain of voice, the voice of someone worried and not in any mood for my short-temperedness.
Apparently, Fred was showing signs of seizure activity or should I say pre-seizure. For once, he was able to tell Lisa what was happening. He was feeling dizzy, disorientated; his eyes were sore and flicking. The uncontrolled jerks were very pronounced and all he wanted to do was cuddle up to his Mum. It was very upsetting for him, he knew his brain was about to misfire and there was nothing he could do about it, just sit and wait it out. He doesn’t want this, the weekly seizures and all that comes with fecking epilepsy. We hung up and I headed off down the pass, driving back to Tralee with that heavy, familiar feeling, at the same time trying to reassure myself all would be ok.
With the milk in my hand, I rushed in the door at home to see Freddie looking up at me from his bowl of rice. The TV was on and he was watching Cars, one of his favourite feel good movies. Even though the scene was peaceful, the news wasn’t. He’d had the seizure, the usual full body shaking one-minute type that has become the normal. Also normal in this new cycle is the thirty minute sleep after which he wakes up and is quickly back to being a fully functioning little man. You can tell from his eyes though, they look doped, glassy and a bit out of focus, the eyes of someone who has just been through the mill. Even though this epilepsy does its best to knock him my boy, my little man, my hero always fights back and comes out smiling. Fred could be thinking of epilepsy when quoting Muhammad Ali...”If you even dream of beating me you’d better wake up and apologize.”
After dinner, we put down the usual after-seizure evening. Ruby was off in Ballyferriter for the night so it was just the three of us, reading, relaxing, and watching the Euros, the usual evening of trying not to think of what's going on. We went off to bed about 11 o’clock and slept well till 6.32am exactly. The same time each week, another normal part of this new cycle. Between 6.30 and 6.35am the morning after an evening seizure, he’ll have another one. For once I was asleep and I hate been woken by the sound of a seizure. The involuntary moaning, the body shaking, all horrible to me. I held him in my arms and called Lisa. She was down in a flash and we both looked after him in the bed. The shot of diazepam was given as a precaution we took him downstairs to make him comfortable for the day. Again, he slept for a while and woke in time for breakfast, a plate of rashers and omelette was demolished in no time, appetite isn’t affected. About 9am I headed off to work, has to be done and after much kisses I headed out the door. At the door I looked back, Freddie cuddled up to his Mum under the blanket, he watching a movie, Lisa reading her kindle. Normal service had been resumed.
Yesterday Lisa rang about 1 O’clock. They’d been making banana bread in the kitchen when Freddie had had another seizure. Only four days after his last one and in the middle of the day. Not usual for one at such a time and four days is the shortest time-gap for a while now. However, he his coming off the Frisium, Lisa cut it again this week and we have been warned that it’s a very difficult medicine to be weaned from. So extra seizures aren’t out of the norm for the moment. These AEDs really get into the Central Nervous System and getting them out again ain’t easy.
Being stuck in Dingle when all this is going on back home in Tralee isn’t nice but I had to hang on for Hannah. She was coming with me and it wouldn’t be fair on Ruby if she couldn’t because epilepsy decided to upset the weekend. Besides that, I’m very fond of the same Hannah and love our little trips over the mountain back to Tralee. There was shopping to be done and I occupied myself stocking up for the weekend. The shop was closed, I wasn’t in the mood for dealing with people and it was quiet anyway in Dingle. Meat, cheese, soap, beer, bread were all got from different shops but I kept my veg shopping till last. If anyone is good for a chat, it’s Sean in Kingdom Fresh and we had great fun discussing the ways of the world before I had to make my excuses and rush off for Hannah.
As always pretty little Hannah lifted my spirits and we had great fun trying to put together the various bizarre plots of Desperate Housewives before we got on to ER. Like an old sage, I was able to tell who was who in her newfound favourite programme and the look of disbelief in her eyes when I told her Mark Greene died will stay with me forever. Before I knew it, we were home and that horrible feeling had been kept back for the forty minutes or so.
Freddie was sitting up, he’d had his snooze and was now having lunch. He was delighted to see Hannah as always and couldn’t wait to show her around his new home. After a while, the two girls went off to Ruby’s bedroom, which is where this piece began…
This morning Freddie didn’t have the morning seizure for some reason or other. He did however wake at six-thirty and ever since he’s been up and about. Hannah has been dragged into playing games, now he’s cuddled up to me, a bowl of spaghetti bolognaise has been finished off and he’s looking for more….
My Freddie, my hero…