It just feels like all of sudden it's happening. The Duchenne isn't some day in the future but right now, right this very second. It's like I'm screaming but it's silent, and no one can hear, or no one wants to hear. He's going to be 10 we are running out of "normal" years. I'm not ready. I don't know how the hell to do this. How do you slowly and methodically lose your son a little at a time until your grateful he doesn't suffer anymore?
It hit me earlier this week just watching T.V. "Are we going to have to lose his smile too?" I mean smiles use face muscles. It's too much. There's no way to bright side my way out of that thought. It f%&*ing sucks.
We talk all the time about how weird it is to walk around grieving what you still have. Sure we can find things to be grateful for and we do but that fear of what's inevitable, it's always there. Every smile and laugh, every picture, every memory, every moment of happiness, it almost hurts. Like that happiness is a band-aid that's going to be ripped off.
I was trying to avoid this but I am really frustrated. We don't have a doctor for Robbie that we really trust. We took Robbie to the ER Wednesday night and I feel like we were kind of pushed out of there w/o really making sure he was okay. I want to call my pediatrician and ask him what to do but I don't trust him to actually care. I know I sound crazy but it's making me feel so alone. I feel like I am failing Robbie. I mean do I need to be more hysterical? Do I seem so calm that people aren't taking us seriously? I won't go into details but it's frustrating to say he has Duchenne Muscular Dystrophy and the response be any serious medical history we need to know about? Nope, just the one terminal illness.
It's been a frustrating 2 days and I am tired and scared. I feel a little beat down and I'm struggling.
