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Looking Through the Glass

Have you ever wondered why the person walking down the street doesn't smile, or the person sat next to you looks like they've got two black eyes, or the person your working with is distant in their own world??

Have you ever thought about what's really going on in their life? What happens behind closed doors?? Why people look the way they do?? Do we take the time to find out people's stories or give them the chance to explain why they are the way they are today? No probably not. And the truth is we all do this.

Most days I head out the house having not brushed my hair and just scooped it up, walking around like a zombie not really knowing where or what I'm doing all with massive black bags under my eyes. Now most of the time I don't even notice other people but just sometimes I think what must people think. Do they think? Do they look at me and go what a state? Or is everyone else too wrapped up in their own stories to not notice or care what others actually look like or are doing? Most probably people don't notice but just for the ones who do, maybe give a thought to what's really going on in that persons life before you judge the way they look.

Now to most people I just look like a normal tired person when I haven't got Ethan with me. Someone who probably got up late so didn't have time to brush their hair or put on some slap. When I have Ethan people are much more accepting of that look! Although most don't know the full extent of it, most would probably expect the parent of a child with special needs to look worn out. Truth is I didn't get up late, infact quite the opposite. I got up very early because Ethan struggles to sleep. Every night is different with him. He can settle really well and sleep right through until half 4 - 5, he can settle really well then be up anywhere from 2, he can not settle well and go to bed between 9-11 and sleep through until 5-6 or he can not settle well and go to be late and still be up between 2-5! You never really know what your gonna get with Ethan. There is no pattern. Every night his routine is the same. We get ready in his bedroom with his two sets of star lights, he then has a story in bed with me, kisses and one set of star lights go off and his Mozart music goes on. This is the same every night but the outcomes are very different. This could be due to Ethan's brain activity. His brain is constantly working on overtime and he finds it hard to relax. Ethan has a seizure every 2-3 weeks usually. He had a massive build up of 1-2 weeks before this seizure. He struggles to sleep, he grinds his teeth, he struggles to bring up wind, he is grumpy and upset. He is better if his seizures are more regular. Ethan's just gone 7 and a half weeks without a big seizure. The first 5 weeks he was good. He was settled, he slept most nights, the odd no sleep night thrown in, he ate well he was happy and content. Then the last week and a half he's been hard work. He's hardly slept, his sleep patterns have been all over the place, he's been grumpy, all the signs of a seizure and there's nothing you can do but wait it out. This morning he had his seizure. 14 minutes this one was. He needed one dose of midazolam and then slept for a few hours after. A seizure usually resets Ethan so hopefully my happy boy is back and we can enjoy a couple of weeks of happiness before we go again!

Five years ago this week Ethan had his first seizure. That's where it all began. He used to have up to 15 small seizures a day. They lasted about 1-2 minutes each maybe less. As he grew a bit and his meds increased his seizures decreased but they got longer. He's got into a good pattern with them and it's easier now to know roughly when it's going to happen. They are night/sleep seizures so this disturbs his and my sleep. I'm on edge waiting for them at night. In between these big seizures Ethan had absence seizures where he stares and takes a few moments to come out of it. He also has crying seizures where he screams and his eyes flicker. The last other one is a gelastic seizure where Ethan with uncontrollably laugh with no reason as to why. These are part of Ethan and happen most days so we rarely notice how many he has. We do however still need to time these incase they go on for longer than five minutes and we need to intervene with meds.

The midazolam that Ethan has is a rescue med to bring him out of his seizures. It's a nasty drug and isn't very nice for Ethan to have but it's needed to stop the seizures from going on too long. It knocks him out after a seizure and he will sleep for a few hours. It makes him very grumpy and sometimes very sick. Ethan doesn't eat a lot after a seizure and will take a couple of days to get back to normal.

This unfortunately has become part of our everyday life and I'm very much used to his seizures. They are still horrible to watch but I'm used to it. I'm hardened to them and just take them in my stride. I can't remember every one but I can still recall all the nasty ones and the ones that have scared me or needed extra help from the paramedics or the hospital.

The effects on Ethan's body is horrible and they completely wipe him out. After he's had a seizure I'm also knackered and I know this sounds strange because I'm not the one who's gone through it, but I think it's from the emotional strain and the worry of it all. It shouldn't be me who feels like this but it's the way it is!! Unfortunately life doesn't stop for me so I have to get on with it.

So this may explain why I don't look my best all the time and why I don't have to time brush my hair or put my make up on. Maybe next time before you judge someone think about what they could be going through too. Maybe they have things going on that no one knows. Spare a thought for others stories because they might just be wanting to know yours.


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