Deception

I fell victim to it again. JA is a sneaky bastard that way. It lets you think you’ve gotten a handle on it, that you’ve controlled it with all of those caustic medications and nice warm baths and then WHAM! it knocks you on your ass again. This past week has been nothing but a reminder that Ryker has this disease and no matter how hard we try, it’s not going away. Most days I can pummel through and stare it down. I can put on my brave face because he needs me to fight it with him; but not today. Today I am pissed. Today I am consumed by these feelings of complete helplessness. Today I play the blame game and the guilt trip — something I did caused this, I should be doing more to help him feel better, I shouldn’t have let him play soccer, I need to take him to therapy, and on and on and on. When you’re a mom you worry about your kids, when you’re a mom of a kid with a chronic illness the worry consumes you. It dictates every action and decision. It’s exhausting. And yet he has it worse than I do. He is being betrayed by his young little 4 year old body every day. WHY?? Why does this sweet boy who prays to Jesus, adores his brother, and belts out country songs have to deal with something so life-altering. Most days I can trust God’s greater plan. Most days I can pummel through and stare it down; but not today.

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