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

28Jul/130

Best Birthday Present Ever

“Mum, is it almost Thursday?” Freddie asks for the umpteenth time today and its not even 2pm on Sunday.

 

Ever since we told Freddie that we’re going to Auntie Claire’s house next Thursday he’s been asking if it is “almost Thursday.” Almost is closer than nearly in Fred’s world. If we’re on our way anywhere almost is much better than nearly where his patience is concerned. Once we reach the outskirts of Tralee, the question comes from the back…

 

“Dad, when will we be in Dublin?”

 

“In about three hours, my boy.”

 

“Are we almost there?”

 

“No, Fred we’ve a bit to go yet.”

 

“But are we almost there?”

 

“Nearly,” I try to compromise.

 

But nearly is too long so usually I have to give in to almost and encourage him to sleep for a while. Usually once he hears the almost our man is happy.

 

Today he got told off for continually asking, and the threat of not going to Aunty Claire’s was issued if he asked again.  Fred just can’t wait to go though and he even packed his suitcase on Friday when he heard of the trip. Into the suitcase went his Godzillas and his pyjamas. Essential kit for travelling. Yesterday he was looking for a change of pyjamas but couldn’t find any as he’d packed them all away. This is all part of us trying to give Fred a concept of time. He doesn’t really have one but he’s learning this weekend about how long five nights takes and how almost may be better than nearly but it doesn’t bring next Thursday any closer. Maybe the ultimatum from his mother will help the brain figure it out…

 

Last Sunday Ruby had friends over, on their way to Waterford for a few days, and they came for lunch on Thursday on their return journey. Fred loves the girls, but was becoming a bit too demanding of their attention, so this week he just sat with them, happy to be in their company. Unfortunately, he’s discovering that teenage girls have little time for ten-year-old boys and being cute only goes a certain distance. I keep telling him he has to give the girls room, that they’ll come round eventually. A piece of advice he may not see the wisdom in for a few years yet.

 

Yesterday Fred had even more visitors. Aunty Ella and cousin Ben made the trip down from Cobh and spent a few hours with us. It is still such a relief for us that we can have visitors without having to worry about Fred keeling over. The normality of having visitors over is great and Fred is even getting used to it too. He got more presents, which he loves getting. No doubt soon they’ll be getting bashed by Godzilla but for now Spiderman is safe on his motorbike. Ben played walkie-talkies with Fred, one of the presents he got, and he spent a lot of time in the car playing. The visit went smoothly, Fred didn’t act up as he used to do in the early days of visitors and all in all it was a stress free day.

 

Fred was still a bit doped yesterday though. Tuesday night, the cluster we’d been waiting for since the weekend, broke through. It was sixteen days almost to the minute. The last time it was at 11.40pm, this week it was 11.05pm. He’d been fine all day but we were seeing a drop in his concentration and speech as the week progressed. He’d had a snooze earlier in the day and went to bed about 10pm with Lisa. I was downstairs locking up for the night when the first seizure hit. It’s a sound I’ll never not recognise or confuse with any other noise. That deep howling that follows a prolonged ‘aah’ must be unique to epilepsy, I doubt if it could be reproduced by anyone not in seizure.

 

As usual I rushed upstairs and of course Lisa was in control. The man came out of it after a minute or so and lay there unconscious while his body recovered. He shudders a lot afterwards, his breathing slows down to normal but can be quite stilted for a while, he may open his eyes but doesn’t react to anything. It looks like he’s in a deep trance. Lisa slid him onto his back and took over for the night. There is no point in me doing anything except making a cup of tea for Lisa. She has her way of looking after Freddie, of dealing with the cluster and I’m only a bit player. Fred will never know how his mother cared for him during these times but it is something truly wonderful what Lisa does for him. You’d think he’d appreciate it but Lisa is always the first to be given out to by the little man if things aren’t up to scratch during a normal day, but I think that’s the lot of a loving mother. In truth he adores his Mum and that’s all that matters.

 

Lisa stayed with him all night. I came down about 3am and he was sitting up looking dazed. He’d had five seizures at that stage and was fairly out of it. Lisa was waiting for one more to hit before giving him the Stesolid and no sooner than she’d spoken than it arrived. We made him comfortable and I went back up to bed.

 

I was back down at 6am. Lisa was heading off to Shannon to collect Rudi who was flying in for few weeks and driving her down to Waterford. I offered to do the trip, after all she had been up all night with Fred and it was lashing rain outside. Of course, as I already knew, Lisa wasn’t hearing anything of it. Off she went about 7am, looking like a million dollars and certainly nothing like a woman who’d been up all night nursing her boy. I took over beside Fred, he’d been seizure free since the Stesolid at 3am and he cuddled up with a smile on his face.

 

There we stayed all morning. Fred sleeping while I read, snoozed and browsed the internet. Its amazing how time goes when you’re caring for someone. About every hour, from ten-thirty on, he had a couple of frontal lobes. Tiny seizures that seem to finish before they even start. Each time he’d open his eyes, look at me and cuddle even closer to me. At 1pm I got up and made brunch with a pot of coffee. Eating it back in bed I thought the smell of food might rouse Fred, but he was in a deep sleep. After a bit more of Facebook, twitter and various news websites I drifted off too, only to be woken by a call from Lisa.

 

They had arrived safely at Aunty Claire’s but she was wrecked from the ordeal of it all. Not that she’d admit it but I could tell from her voice. After getting the reassurances that all was ok she left us alone. Fred was sleeping soundly and didn’t even wake when the phone rang.

 

Then about 3.40pm he had another big seizure, twelve hours since his last. This worried me. Was another cluster on its way or was this the ‘goodbye’ one we get most times. The frontal lobes had been getting smaller and less frequent as the day went on. This was out of the usual cycle, coming so late after the big cluster. He came through it ok and about ten minutes later I gave him his evening meds. It was a bit earlier than usual but Lisa had given him his morning ones a bit early too.

 

I struggled to get them in him, he was still very groggy. Eventually, after a change of top, he swallowed them and bizarrely he began to wake up. About 4.30pm he asked if we could get up. After a day in bed I was only too happy to give it a try and we inched our way downstairs. Fred dug out his DVD player and looked like nothing had happened.

 

“Do you want some food?” I asked.

 

“I’ll have my breakfast now,” was the reply, after all he’d just got out of bed I suppose.

 

So the two of us sat down to a big breakfast at 5pm. We demolished two plates of cheesy omelette, baked beans and fried new potato and Fred returned to his DVD player while I cleaned up. He was talking about having dinner later but in the end the big breakfast kept us going for the night.

 

About 9.30pm Fred was getting tired again so the two of us returned to the nest we’d left only five hours earlier. We sat up reading stories and Fred was fast asleep by ten o’clock. I thought I wouldn’t be able to sleep but I wasn’t long after him. It was still bright outside but I drifted off, happy that we’d gotten through the day ok.

 

At 6am, I woke Fred for his morning meds. He swallowed them and rolled over on his pillow. At 6.15am my phone went, a text from Lisa reminding me to give the meds and to wish me a ‘happy birthday.’

 

“Who was that?” Fred asked, obviously not that sleepy after the day before.

 

“Just Mummy,”

 

“What did she want?”

 

“To wish me a happy birthday.”

 

Fred sat up looking at me. A big smile broke across his little face. I looked at him and he broke into song…

 

“Happy Birthday to you, happy birthday to you,” he sang, cupping my face in his hands.

 

What a wonderful birthday present and totally unexpected.

The best birthday present ever.

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Posted by John Verling

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