Why Here?

I strongly felt two messages today and in looking at them again, I feel they might be directly connected to this blog.


The first I saw early on this morning and it was from "The Captain":


Later I attended this wonderful online meeting in support of my sister in law and heard this message (along with some other great ones) emphasized:

"You never know who your story is going to connect to.

You never know who needs to hear exactly what you're saying to recognize something in their own story that helps them heal"


I felt both of these statements and kept coming back to why am I here? Why am I doing this?


I think the final push to post and start this blog was my friend AR. She's a "met in real life once, then continued the friendship through social media" relationship for me and I've enjoyed her almost daily morning posts sipping her caffeine and talking about her day. (I love social media for this type of stuff - checking in, catching up, and following along even if life's too hectic to do it in real life or one on one)


Anyway, we'd be chatting around then about her gimpy duck and my walking on one leg chicken when one morning I got a series of social media messages from her:

Can I have your cell number

Can you text me

My son is having a seizure. We're on our way to the hospital


And then since I wasn't responding (it was an account I don't have notifications on for), she sent me her number.


I sent her a text as soon as I saw her messages - maybe 15 minutes later - but I know those minutes can feel like hours. We chatted on and off for the next 24 hours or so as they were trying to figure out what was going on. I was just trying to reassure her, listen and say what was sort of normal post-seizure. 


This isn't the first person who has reached out in a handful of months (unfortunately) and so I wanted to start this ... 


A blog that serves as some comfort to others going through their first or 100th seizure. I know when I've tried to seek out comfort in support groups that people often feel relief reading about me and where I am at in life being that I have the SCN1A gene mutation. This blog can be a place to hold our story without me having to post or explain our circumstances over and over again.


I'm also thinking this can serve somewhat as a record for my kids to maybe one day utilize if need be.


I'm hoping this is an outlet and some sort of positive product from all we've had to experience as a family too because it can be really overwhelming at times and you can't help but wonder "Why?"


Honestly, I'm not sure if this blog is more therapeutic for me or if it will be more of a way to raise awareness for the cause of genetic epilepsy/ what those with it are personally going through (though I'm fully aware our experiences are all very individual and unique as well). I guess I am hoping this blog ends up being a bit of both...


In any case, thanks for being here.

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