It’s okay sweetie the wolf will go away.
You will be okay we just need to get through it and it will go away.
It’s okay darling the devil shark is scary and I understand why you are hiding in the tent, how about I sit down with you.
I know you can’t talk properly and your mouth feels weird.
I know that your legs feel weird and dragging is the only way you can get around, how about you come and sit up here.
I know the rushing feeling scares you, it will go away quickly.
Hey look at that it only went for 20 minutes Lizzy.
I know you’re scared to sleep but tomorrow is another day.
It’s okay, sweetie you will be okay.
Yeah Lizzy had a seizure last night but look she is at school so be gentle with her.
Yeah my night was okay Lizzy had a 1 hour seizure; okay what do we need to get onto at work?
Yeah she did just have an absence seizure it seems to always happen under extreme stress or pain but other than that it’s usually just the hallucination seizures.
Hey we are lucky they are just hallucination seizures.
It all becomes normal. I don’t know what the day or month was when it all became normal but with both her early complex partial status seizures and her more recent simple partial hallucination seizures prior to diet her seizures became a normal part of our life.
Outsiders would look at me with sympathy or shock or both when they asked how our night or week had been. There were times when it was easier to just say “yeah she’s okay”. Night after night and week after week it all just became normal.
Now the early seizures they were hard to get used to but I still reached a point where I would not freak out and I would go into auto pilot. Grab my bag, the hospital bag and put clothes on while calling the ambulance and trying to keep an eye on Lizzy. It became normal putting midaz up her nose. It became normal to go to hospital every week. It was normal to go to hospital nearly every Thursday night for six months.
Her later seizures became so normal especially her worst year where it was night after night after night.
Okay you’re having a seizure, you’re okay.
Come and cuddle with me.
What are you seeing tonight?
Where in your head can you see it?
Which way is it going away?
Okay you’re only having a small part of the hallucination now that’s good it’s starting to go away.
Oh you’re seeing it in your head and in front of your eyes.
Oh I look really small.
Oh I look fuzzy.
Oh your mouth is tingling.
Oh you’re scared I know you’re scared it’s going to be okay.
Luckily Lizzy does not have many memories of the hallucination seizures but it became normal for her too. We would do set things like grab cuddly bears as soon as it started or a blankie. She got used to grabbing them when it started or asking for them (grunting or mumbling). The seizures became normal for her.
For Mackenzie they became normal too, she would often be the one to go and grab Lizzy’s bears or blankie and it was normal or her to try and cuddle her or go to her room and just stay away so we could concentrate on Lizzy.
The abnormal became normal, the way we felt about seizures changed, a burst of activity in Lizzy’s brain that caused her body to do unthinkable things which was so abnormal and not what you wanted your child to have becomes normal. We would discuss when we were giving emergency meds.
How long before we give them?
Nah tonight I think she is going to come out of it quicker.
I wish we had of given the emergency meds to her sooner.
Next time we will set a 15 minutes cut off and then we will give emergency meds.
Did you see how she went loopy after that lot of meds wow where did that come from.
It became normal for her to have a seizure and then fall asleep on the lounge next to me and then just like Groundhog Day she would do it all over again the next night.
And then we would change medications or increase or decrease a medication and it would be the same normal conversations.
I wonder if she will have a 3 month honeymoon with this medication and then everything will go to poo.
I think we need to give this medication some time before we decide to pull it?
Am I really seeing her gasping for breath just walking down the hall? I knew Ospolot could do this but wow.
Hell yes we are getting off this medication our family is about to implode.
I wonder which of the three medications she is on is actually helping to calm her seizures a little?
Is it the medication or seizures that are causing this issue?
What other options are there?
In our “perfectly normal” lives all of these things are just part of life.
So what changed that we saw them as normal.
We had no other choice but to accept it. It wasn’t like we could just place a call to Lizzy’s brain and put it on hold. “Hello, how are you today? Just wondering if you could give my daughter a break for a couple of days?” “Sorry no can do it’s crazy up here the wires are crossed and nothing’s going to stop it”. “Okay then thank you, curse you later”.
Was the difference in our new normal because we were all becoming more resilient to seizures? Little bit like a kid on a trampoline we would just keep on bouncing back up and keep on jumping. My memories of trampolines as a kid would not be as helpful an analogy and could explain when I lost the plot. Jumping on a trampoline and landing on the concrete yep that’s more like it.
Was it just simply that our brains had seen so many traumas that when we continued to deal with this level of stress daily our brains just accept this as our new reality? Fairly high chance, brains are an amazing thing and a cursed one as well.
Normal is subjective and there is no black and white definition. Our new messy, scattered, stressful, brain bending and numbing, frustrating and saddening normal is our life. We are lucky to have it.
Normal is an illusion. What is normal for the spider is chaos for the fly. Morticia Addams
Hoping to be the spider a bit more but prepared to be the fly at a moment’s notice.