I've spent months trying to sanitize what I want to say here. To make digestible and to not hurt anyone. Which being honest was extremely difficult because I have been working through a pretty hefty amount of pain and felt too vulnerable to share it.
Duchenne is a war. For some people, it's something that sort of touches you. In my house, we are in the trenches doing battle every day. Sometimes because we are human it makes us hard. We get bitter and we get so angry. An anger I don't think can be explained if you haven't feared for your child's life. We get jealous. We wonder what life is like outside of this war. Sometimes we get a taste of it but it's always ripped away as we head into the next battle.
It's hard to be different especially when you didn't make the choice to be different. It's hard to feel like you are fighting every day just to keep your head above water and then someone tells you to find a silver lining or to pretend that you feel positive, or that it isn't the time to be sad. First, this is sad. There won't be a point where this is not sad. Our life is not only sad, but sad has a pretty big seat at our table. Second, being positive is great and sometimes you have to pretend to make it but sometimes when you put that pressure on us you take away our ability, to be honest, and get our feelings out there.
People tell us all the time how well we are handling all this. Okay, they used to before the election now people pretty much avoid the topic. The thing is I don't have a choice in how I handle this. I'm just a soldier in a war I didn't ask for. My marching orders are clear: Make Robbie's life as good and as full as possible no matter the costs.
That is a very tall order. It's not an easy thing to do and it's honestly a very lonely thing to do. Like eventually the shock of the diagnosis is supposed to wear off. At least that's what the world wants. That eventually you just get strong and you don't to fall to the ground sobbing anymore. To be fair it happens less over time but that feeling that makes us drop to the ground, the hopelessness and fear, it's never gone. We learn to function under it but it's never gone. The world wants it gone because it doesn't make people feel good but it is never gone. We might push it aside and go on but it always there ready to bubble up to the surface.
I don't say these things to be dramatic. I'm not asking the world to change. I don't want attention. I just want to be understood. I want to be heard. Mostly, I want people to see the pressure we put on families dealing with the unimaginable. We want inspiration so we expect those most desperate to give it to us. We want to feel that saying you're in my thoughts is really comforting to someone that is fighting a war.
Sometimes I want to know what it's like to be included again. I can't even remember the last time Shelby and I shared a meal or a glass of wine with someone in our age group. I don't know why but I'm just not a person people like and that makes this all the more isolating. This isn't a new revelation, it's practically a joke in my family. Sometimes though I wish it was different. That I was different. That people didn't just see a shy angry person. Sometimes I'm angry that I'm stuck in that category as if I asked to be this way. As if I don't want to laugh and drink wine, and talk frankly once in a while.
Maybe this whole thing sounds like a self-serving bitch fest. I really can't tell anymore. And if I'm being honest I really tired of trying to make my feelings palatable. I'm fighting battles every damn day and sometimes I'm not in a good mood. Sometimes I'm a jerk and sometimes I cry a lot.
I think those of us struggling through things like this have a really hard time separating emotion from well just about anything. While everyone else can think about health care legaslation in the abstract I look at Robbie and it colors every view I hold. I won't apologize for that, it's a battle I have to and will fight. Robbie's diagnosis changed my perspectives on nearly everything. It turned my life from ordinary to a war zone.
Duchenne families do a lot of our battling alone. It's a consequence of a rare disease, there just isn't a lot of people that understand. That makes it all the more isolating. Add to that being naturally shy and sensitive and you have a recipe for lonely. I hope that someone finds this that needs to hear that it's actually okay to feel bad and it gives them a measure of comfort just to know they aren't alone. It's okay to feel bad and good and bitter and hopeful and sometimes all at the same time. This is a war and we are fighting battles, just keep going.
