Memory is a weird thing. When Robbie was first diagnosed I relived diagnosis in my head over and over again. I could explain it in great detail. I can't exactly do that anymore.
I don't remember the doctor's exact words. I remember my hand was in Shelby's hand and we were both gripping each other's hands so hard. I don't think I sobbed maybe silent crying. I was trying to listen and keep together. I was in no way accomplishing that. I remember the doctor's hand on my knee. I remember telling them he just started riding his training wheel bike hoping that meant they were wrong. I remember the nurse leaving the room to give us a minute and collapsing on Shelby's lap. I know said "Not my baby." I don't remember what he said. I remember wanting to get to my mom in the waiting room. I remember calling everyone and when my aunt Debbie called I couldn't talk and my mom took the phone. I remember my brother was at Target when I called him. I remember the office staff and doctor leaving for their Christmas party. I remember the stupid decision to get Santa pictures that day. I still can't look at them.
It's weird that a day that changed the entire course of my life is remembered almost like snapshots. I didn't think I would ever be able to move on from that moment. I really thought it was the end of times. I didn't know how one continued on from a moment like that. In truth, I can't explain how we did.
The grief has never left. I doubt it ever does. I've lost people I love in my life but this? My baby. There is no therapy, no chocolate, no inspirational qoute, nothing that makes it not hurt. The knowledge I can't stop it, I can't make it better no mom or dad should ever feel this. No child should ever have to live this.
I haven't really allowed myself to blog in a couple of years. Here and there but mostly I was afraid to share what I was feeling. When you first get news like DMD no expects you to be okay but eventually. You are supposed to be positive. You are supposed to strong or well I guess the fictionalized version of strength. So I faked it. I fake it all the damn time. Not for my kids or my husband, not for me, but for everyone else. I don't know why it happens and I suspect I'm not the only person in a hopeless situation putting on masks.
Things are rough for us currently. Life just isn't giving us a minute to breathe and I feel like we are on an island. The dark spot in otherwise happy groups of people. I'm angry and I am so tired. Living my life and the life I feel like I have to constantly project, it's draining. Duchenne is expensive in ways that most people don't understand. Half the damn world is not accessible. Every dream Shelby and I had is just gone. there won't be a craftsman with a giant front porch. There will be no RV, there may be no retirement. No college degree for me. No dream job for either of us. The life we planned went up in smoke that day in 2011.
I'm okay with losing the dreams or at least I try to be. They were never reality, so it is what is. Robbie though, he deserved better. He deserved to be healthy and whole. He deserved to be able to go to 6th-grade camp. He doesn't deserve to face his mortality in his childhood. He doesn't deserve to have asked me if pre-existing conditions are still covered.
Our life isn't a disaster zone. It's just hard and real. We love and are loved in return but I can't keep pretending things are fine when they are anything but fine. I can't stop yelling about taking care of the most vulnerable in the world and if that causes people to turn away from me well then I hope life treats them well and kindly.
