“You’ve done this before,” I snapped at him. My husband was being helpful, he was telling me everything I needed to hear, and yet, I didn’t want to hear any of it. “This is my first time on this ride. I don’t know how to do any of this. I don’t know what we’re supposed to do. I don’t know how I’m supposed to react. I feel like I’m not allowed to be affected by his behavior. It’s hard. It hurts.”
Tears were cascading down my face as my husband and I stood in our kitchen, facing off but not really. We’d finished a Good Day. While my husband had taken our daughter to a lacrosse game, my son and I had gone for lunch, done some clothes shopping, and picked up some books. It had been a Good Day. So, when we came home, and our son proceeded to completely rage, I was at a loss. What the hell had just happened?
My husband was waxing poetic on how long it had taken his family to figure out how to handle his brother who has both physical and mental disabilities. We’d learn to find the triggers, he said, but all I heard was that until we did our life was going to look like this, to feel like this, and I just couldn’t stomach that. I didn’t want to hear that it was going to take another five years.That every day would be a struggle until then. Really though, all I wanted one day. Just one fucking day where things were okay. Where I didn’t have to listen to my son scream at me, and laugh maniacally as he destroyed his room, piece by piece. I wanted a day where I wasn’t questioning the medication, and making plans for how to handle the next problem. One fucking day.
We almost had that day, and then it just vanished.
I’m still grieving the loss of the Magical Diagnosis that my husband and I had conjured. I have no idea why I thought having our son diagnosed would suddenly make all this chaos stop. I have no idea why we hung all of our hopes and expectations there, and yet we did. Almost two months later, I feel like I’m still reeling, like I’m barely surviving. “It’s not about you,” I keep whispering to myself in those moments where I feel like someone is holding me under water. “Just keep pushing forward, it’s for him.” And so we do.
Inside, the riot had subsided, for the moment, so I took a moment outside to take a breath, to let myself sob quietly. I heard the door slide open, and my husband stood beside me, sighing.
“We’re in this together, you know that right?” he asked toward the night sky.
“I know. You just have more experience than me. You know more than me. You don’t take this as personally as I do, and I know its not him, I know it’s not him, but how can I not fall apart when he screams that he hates me and has never loved me?”
“It is hard. It’s not fair in so many ways, but this is what we’ve been dealt. We got this.”
I laughed, still crying, and responded, “Yes.”
We’ll get our Good Day one day.