It is rare disease awareness day. 

And I could tell you about TN. There are two versions of this story. The one where we overcame. Or the one where we just survive in the now. Can you guess which one I would pick? Some days it is one and others it is the other, and then there are days where it is both. 

TN never left. I don’t blog about it everyday because it has become a part of our everyday normal. What once sent fear into my heart now I find comfort in. The face jerks they don’t whittle away my nerves like they once did. I also have gotten very good at recognizing the intensity. 

But every night as I rub my guys head to sleep I remember. I run my fingers over his scar. Every morning when I look at our medicine cabinet I am reminded. The pill bottles take up so much space. Or the fact that he has no short term memory. Or the fear of making any long term decisions because there always is that what if out there. 

So is it better…yes. But what is actually better is my coping with it. I remember last year at lunch trying to talk about it with co-workers and not being able to get through the conversation. And truthfully he makes it better. He proceeds as normally as he can. Maybe he sleeps a little longer, or he forgets a few things on the honey do list. But most of the time he proceeds normally. 

It is only the twitch of his face that reminds me. That twitch has the ability to punch me right in the gut. And I take the punch and move on. TN will never win. Ever. Love will always win in the E household. 


Insert something witty.

Remember when I used to do just write? I do. Some of that writing was my best because I just let the words come. Seldom do they come anymore. Not because they aren’t there but instead I suppress. Why say them outloud? Who really hears them?

Sometimes it just feels like all we do is talk and talk, but never really listen. Listening is the hard part I think. It requires thoughtful purposeful intention. That is hard. It is mostly definitely a weakness for me. I have a profession that requires me to do the talking. I am constantly formulating that next lesson, working on that next check for understanding, but the listening gets lost in the midst of the busyness of my own mind and formulations. And what happens at the end of the day is the opposite of what I want to do in this world. 

To give a voice to the voiceless and be the ear they so desperately need. But I get lost in my own self, my own agenda. I wish  was better, but alas I am not. So I sit here and I think about it and what I can change for next time. How I can make it better or how I could have played it differently. 

I don’t have the answers. I am still figuring them out.