I spend a lot of time trying to explain complex feelings. I don't even know why I feel a need to do that, just that sometimes putting it in writing or saying it out loud helps. When Robbie was diagnosed there was so much advice and there still is but most of that just hurts. I know no one means it to hurt but all I tend to hear is that I am somehow doing this wrong. Then I get mad because I don't know the best way through this, so I'm just doing my best. I'm convinced there isn't a right way. Duchenne is tragic, it asks a lot of a family, and then it asks for more. I don't have answers and I'm not compelled to write about my feelings so I get an answer. I just know that for me being honest with my feelings is the only way I can deal with them. I'm convinced that I am not alone in needing to be upfront with my grief. I don't want to hide it, in fact, I refuse to hide it. Some times it's ugly and angry, sometimes it's sad, but mostly it's just true.
I don't believe I can be strong enough for Robbie if I'm not strong enough to be honest when I feel like I am drowning in feelings. I used to think feeling angry was wrong. Like if I was angry I wouldn't be able to feel the good stuff in my life. The thing I discovered for me is that I am strongest when I let myself feel the weakest. That my way of getting myself, my son, and my family through the hardest things life throws at us is to just embrace the feelings. There is no shame in being sad or angry, just as there is no shame in laughing or just feeling joy.
When we came home after our 2 weeks with our families after Robbie's diagnosis, I was terrified of feeling good. Like it wasn't allowed. That if I made love to my husband, or enjoyed a book, or cooked a meal I liked to cook, I would be selfish. That if Robbie was going to deal with this for the rest of his life I had an obligation to stop enjoying mine. It sounds crazy now, but back then I was so lost nothing made sense to me anymore. All my life I had been able to find a trite saying, a silver lining, something I could point to and know that's why this thing had happened, but duchenne, that I couldn't give a positive spin. That felt like a failure on top of all the other reasons I felt like I had failed.
Eventually, the newness of grief wears off. For some reason, it has become almost expected that as soon as the grief becomes manageable you just push it down and move on. We try to shield ourselves from the things that hurt, to convince ourselves that feeling a bad feeling somehow makes us weak but what makes us weak is not letting those things out. Letting it consume us until we seem fine on the outside but we are a mess internally. I knew when we got a diagnosis that the entire trajectory of my family's life was going to be different than the one I had envisioned. I knew that my kids were going to spend their childhoods dealing with things I couldn't have imagined as a child. I knew that being strong for them made meant giving them a safe place to feel bad, or angry, or sad, or happy. That I had to be honest with my feelings so they could be honest with their own feelings.
I am sad almost every day, some days it's more anger then sadness but its a grief that is a part of who I am because it just is that way. I'm happy too, a lot more then I am sad or angry, I know to appreciate the good things because I know just how fragile they are. My kids get annoyed that I make them celebrate little things that seem insignificant but I tell them they won't ever look back and regret the times they celebrated, No one regrets that but I also want them to know they won't regret the times they let themselves feel bad. That the bad feelings are just as legitimate as the good ones. That a well-placed F word can be satisfying. That standing up for the things you think are right or wrong will always always be worth it.
I refuse to help anyone else be in denial about what is happening to my son. It's not my job to make any of this okay for anyone, even him. It's my job to fight for him, to give him a safe place, to teach him how to handle his emotions. I'm not perfect at it, I do sometimes take the easy way out, and that is okay too. Mostly, when I look back at this time of my life I want to know that I was the most honest, when it hurt the most and when it felt the best.
