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

22Jul/120

To Mummy

Now this is a completely different post than my usual ones. As I’ve been busy doing a few other things I’m only getting to sit down and write this at the much later time of 5.30pm. Freddie is under his blanket, lying out on his mother, waiting for a seizure to hit. Earlier this afternoon he’d begun to feel confused, the sign these days that something is on its way and he fell asleep, again in his mothers arms. After a while, I went upstairs to finish what I was doing, or at least continue it, leaving Lisa under the blanket caring for Freddie and reading her kindle. About an hour later, my phone rang. Freddie was awake, nothing had happened and wanted the special lunch I’d made him yesterday. The one we weren’t supposed to tell Mummy about…

Yesterday had been our first day alone in a long time. Indeed Lisa and Ruby had headed off to Waterford on Friday night leaving the men to fend for ourselves. This was Lisa’s first night away from Freddie, under normal circumstances, in at least two years, there have been nights where I’ve stayed in the hospital but as I said normal circumstances…and so, we waved them off about 7 O’clock Friday evening and settled down for a boy’s night in. After watching Mr Bean’s Holiday and some Maggie and the Ferocious Beast, it was time for sleeping. Freddie fell off into a deep sleep quickly enough and I watched an episode of Dexter. He too, was looking after his son on his own but I wasn’t plotting the death of a mass murderer, at least not on Friday night…

Fred slept a peaceful night and we woke about seven Saturday morning. Downstairs I got him his medicines while Freddie made a bed for us on the couch.  A nice cosy bed of blankets and cushions too, so cosy that within minutes I was dozing again. Freddie woke me about 9.30am saying he was hungry and wanted a big breakfast. Thus, our day went on. It was my aim to keep him seizure free till at least Lisa came home that evening, I didn’t want to make that call or see the disappointed look on her face if she came to find him unconscious on the couch. We watched TV, I read, we ate lunch. We snacked, we played games, we watched Godzilla battles on YouTube and at four, I gave him the rest of his medicines. By the time, Lisa came home at 6.30 I was preparing dinner and the little man was sitting up, all ok, waiting for her. When she drove up, he ran out to greet her, a scene I’d been wishing for all day.

For the first time in two years, Lisa had left to come back to a safe and sound Freddie.

Mission accomplished.

Saturday was day four since Freddie’s last seizure activity. On Monday I’d come home to find him laid out on the couch recovering from a second seizure. After all the hope of last week’s post he was now having two big seizures in the one day, something that hadn’t happened in a couple of months. Lisa had already given him the Diazepam after the first one at 5pm so we couldn’t give another one so soon afterwards. If this continued it would be hospital again, a place not visited since mid-May. But thankfully he slept through after that. Lisa and I sat with him all night, Ruby upstairs with Hannah and Ella was immune from it all, thankfully. At about midnight we went off to bed, Fred cuddled up to me as if nothing was wrong in the world and I read for a while. At about 5am he had a small frontal lobe seizure, lasting about five seconds and I woke immediately or maybe I was only dozing, on alert. A couple of minutes later another one hit and I called Lisa. She came up with the Diazepam, it had been over eight hours since his last dose, so he could have more. She gave him a dose and Freddie went on sleeping till about 8.30am. The three of us got up and went down   for breakfast. The poor man was starving, he’d missed dinner the night before, a very unusual event and so he devoured the plate of rasher, eggs and toast I put in front of him.

During the day I rang home to check on him. He’d slept on and off with no more side effects, it looked like the seizures were behind him for another while. We could start counting seizure free days again. Seizure free days are counted by us in twenty-four intervals from his last seizure. Today is day five, five full days since those small ones Tuesday morning. The first five day interval in a while and it means that we’re expecting action anytime soon. That’s why when Freddie felt confused this afternoon it came as little surprise to Lisa and me.

After I came down to make his special lunch, wraps with Quorn sausages and coleslaw, I went back up to finish my work. Quorn sausages by the way are known as ‘Daddy’s Sausages’ by Freddie, another one of his phrases. He settled into his lunch and seemingly over his confusion attack. So then when I came back at 5.30 to see he was feeling confused again it was a real disappointment, not a surprise, as epilepsy doesn’t leave him alone, just a let down.

However after forty minutes of dozing, waking once to go to the toilet, he put his head up to say he was fine ok…”it’s gone now,” he announced. So while I’ve been writing he’s put the confusion behind him and is now sitting up watching Mr Bean, again, as if nothing had happened and I suppose nothing did.

This wonderful boy of mine just takes life as it comes. He feels the confusion and lies down, waiting for it to attack or pass over. When it’s finished with him he carries on as if nothing had ever happened. His strength really amazes me.

He’s also full of love...

On Friday evening, after Lisa had left wondering how she could leave her little man, we had a little picnic in the front room. Just some cheese and crackers, nothing special. Freddie was drinking a smoothie and me just a plain glass of water.

He turned to me and held the smoothie up in a toast:

“To Mummy” he said…

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Posted by John Verling

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