In The Thick Of It

I wrote the following words during our son's epilepsy medication change.  I was in the thick of it all and couldn't imagine a day when this wouldn't be our normal.  Two months later, I'm happy to say that we aren't there anymore.  We're still seeking the right medication, but it's not as heavy on our hearts as it used to be. 

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I'm going to share something that feels pretty vulnerable. I want to share the incredibly hard parts because I don't want you to think hope is always pretty. If you don't have something to bounce that hope off of then it's worthless. 

Hope without pain is nothing. 

I'm struggling pretty hard today. I'm having a particularly rough day processing all of the stuff with Asher and having to watch him endure all of these side effects from the medications and the seizures. I can't even tell what stems from what anymore. 

I'm feeling so very guilty even when my mind says "you have to try this; you have to make SOME decision. Any decision would be hard." Then my heart asks, "but at what cost? You're making all the wrong decisions. You're ruining his life and you will regret what you're doing. He will never be the same Asher that you've lost."  

That was my biggest fear. 

That I'd lose the Asher that I had; 

it has partially come true. 

And I'm devastated. 

Everything in me hurts and is scared and my heart is ripped to shreds. Yesterday I felt strong even as I watched him deal with hard things. This morning I woke up feeling completely broken-hearted and I can feel it all heavy in my chest. I ache for him. I mourn his loss of normalcy. And my own. 

I hate epilepsy and what it's doing to him. I hate hearing him stop mid-sentence to grasp for a word and then repeat the first part of the sentence and then grasp for that one elusive word over and over and over. I hate that internally we get frustrated. I hate that I crumble inside as he jokes about it and quotes Dory, "I suffer from short term memory loss." It's his only way to cope. I smirk at him or wink but it stops me cold each time. Like a wound to my heart. 

I hate watching people that love him watch him deteriorate and I hate seeing the questions written all over their faces and the sadness in their eyes. I hate when I see other people SEE it. And even though I don't have to be, I hate when I fake optimism and even lie about how this is the worst of it and it's all uphill from here so they'll feel better. 

I'm hoping it'll make me feel better 

but it doesn't. 

I don't know what else to do. 

It's all a big show for my own self because the people that love us don't need platitudes. Maybe his mama does. 

Everything I imagined for him feels like it's slipping away. When they tell me his epilepsy is not likely to go away I can't believe it because I feel like I can't do this for ONE MORE MINUTE let alone a lifetime. 

I will, but I can't imagine it. 

So I won't. Imagine. Dream. 

It's much too hard right now, so I'll save dreaming for later. For now we're going to focus on getting through this one day. One hour. One minute. 

Daily bread.