Emotions are rarely one size fits all and sometimes they are complicated. Sometimes I can feel immeasurably happy and sad at the exact same time. I can fully appreciate the freedom Robbie's power chair gives him. I can let his giggle and smile fill me with joy and still feel so freaking angry and sad that my son has to face duchenne. That we are as of right now powerless to change the natural course of his condition. I can feel happy with his newfound freedom and sad about what it means in the future.
People always think I am too angry or that I am a hero for still smiling, laughing, and living. It's frustrating because first, I am angry. I am angry that there is no cure and that science is unable to work faster. I'm angry that I have to beg my government not to take the 10 essential health benefits away. I'm angry that Robbie's life is harder than his sisters. I'm angry that so much is demanded of my girls. I'm angry that someday my girls will get pregnant and they will be terrified and there is nothing I can do or say to make that not happen. I'm angry that a cell divided badly in my body and my son has to pay the price. That doesn't mean that I am always angry or that I am ruled by my anger.
Second, I am happy every day. I'm deeply totally in love with my husband. We have the kind of love that they can never quite capture in books or movies. Imperfectly perfect. I have 3 of the most amazing kids ever to walk this earth. Empathetic, smart, beautiful children, that will change the world for the better. I have the means to feed and clothe my family. I am happy, I'm just angry too.
I see all the good things in my life. It doesn't take away from them when I'm angry or sad. In fact, it makes the good things so much more amazing. When we first got his diagnosis I thought being strong for him meant being happy and cheerful. I was so mad at myself because I wasn't like that. Eventually, the shock of diagnosis wore off and we had to decide as a family how we were going to face this. We decided honesty even when it is ugly is the only thing that would work in our house.
I don't want to feel like I have to pretend to be happy and I don't want my kids to feel they have to pretend. This is a hard hand they were dealt and pretending it's not will not help them. I feel like I am saying we are depressed all the time and it's really not what I mean. I just mean if one of us is upset and needs t cry, if one of us is angry and needs to express it, or if we need to watch an inappropriate movie and laugh out loud about stupid crap we are going to do that. Honesty doesn't mean we are always sad it just means we aren't always positive.
I hate the relentless pressure to look on the bright side or to think positively. I'm not a negative person, I feel I'm mostly optimistic and I try to see beauty in darkness. I'm just not a super sunshiney person. If you are that is great but please understand that Robbie's diagnosis didn't come with some massive personality changing pill for me. I've always been serious and shy, I've always liked reading and writing more than sports and stuff. I always preferred small intimate get-togethers to big loud parties. I'm still that person. I still struggle to ask for help. In fact, most of the time I won't. Learning to advocate for Robbie has been a process for me. It didn't just come naturally. I work at it all the time because he needs me to do that so it doesn't matter that its hard it just matters that it happens. I hate pretending I'm fine when I am not fine and I will not make my kids do that.
I think strength is different for every person. For me, I think my strength lies in being able to fully feel my emotions. I grieve when I need to grieve and I can get through it because I can let myself face the hard stuff. Sometimes I take an hour or so and just cry it out. then I can focus and figure out the next step. It's how I'm wired and embracing that makes me strong. Other people use positive thinking to get through stuff and they are also strong. My husband breaks things down into small pieces and goes to work one at a time. It's how he is wired and it makes him strong. If two people survive cancer and one was feeling like crap and angry and one was super positive and sunny wouldn't we still feel they were both strong? Would the positive person deserve to survive but the angry one not? Of course not, because at the end of the day no one deserves the bad things or the good things. They are just life and how we get through it is specific to each person.
I don't mean this as some kind of takedown against people that look on the bright side quicker and easier then I do. I'm honestly a little jealous that my mind doesn't work that way. I just want society to appreciate that we all face things we aren't expecting, we all have down moments and that it is okay to feel sad or angry. That when I am sad, I don't need anyone to make that go away. I mean there isn't a word that word makes it go away, I just need you to hear what I am feeling and let me feel it.
I don't want to feel like I have to pretend to be happy and I don't want my kids to feel they have to pretend. This is a hard hand they were dealt and pretending it's not will not help them. I feel like I am saying we are depressed all the time and it's really not what I mean. I just mean if one of us is upset and needs t cry, if one of us is angry and needs to express it, or if we need to watch an inappropriate movie and laugh out loud about stupid crap we are going to do that. Honesty doesn't mean we are always sad it just means we aren't always positive.
I hate the relentless pressure to look on the bright side or to think positively. I'm not a negative person, I feel I'm mostly optimistic and I try to see beauty in darkness. I'm just not a super sunshiney person. If you are that is great but please understand that Robbie's diagnosis didn't come with some massive personality changing pill for me. I've always been serious and shy, I've always liked reading and writing more than sports and stuff. I always preferred small intimate get-togethers to big loud parties. I'm still that person. I still struggle to ask for help. In fact, most of the time I won't. Learning to advocate for Robbie has been a process for me. It didn't just come naturally. I work at it all the time because he needs me to do that so it doesn't matter that its hard it just matters that it happens. I hate pretending I'm fine when I am not fine and I will not make my kids do that.
I think strength is different for every person. For me, I think my strength lies in being able to fully feel my emotions. I grieve when I need to grieve and I can get through it because I can let myself face the hard stuff. Sometimes I take an hour or so and just cry it out. then I can focus and figure out the next step. It's how I'm wired and embracing that makes me strong. Other people use positive thinking to get through stuff and they are also strong. My husband breaks things down into small pieces and goes to work one at a time. It's how he is wired and it makes him strong. If two people survive cancer and one was feeling like crap and angry and one was super positive and sunny wouldn't we still feel they were both strong? Would the positive person deserve to survive but the angry one not? Of course not, because at the end of the day no one deserves the bad things or the good things. They are just life and how we get through it is specific to each person.
I don't mean this as some kind of takedown against people that look on the bright side quicker and easier then I do. I'm honestly a little jealous that my mind doesn't work that way. I just want society to appreciate that we all face things we aren't expecting, we all have down moments and that it is okay to feel sad or angry. That when I am sad, I don't need anyone to make that go away. I mean there isn't a word that word makes it go away, I just need you to hear what I am feeling and let me feel it.
