When I went to Nashville for retreat a week and change ago, I went because I wanted to get my purpose, my mission, my goal inline. As a lifelong Catholic, I’d thought my mission would be one of two things: marriage, or consecrated life ( as in; get thee to a nunnery), but I thought I’d get married and have kids and that was where my life would go.
I was wrong.
Almost got married. No consecrated life. I am a lay Dominican, but as I said d to Sr. John Thomas, to echo a mermaid, “I want more.” I didn’t feel like I was being stretched or challenged or filling what I was supposed to be doing.
Reding sore blog posts today on Patheos made me realize my mission: to tell stories, in particularly, mine.
For awhile I’ve wanted to write a memoir. I’ve got a 75% finished book proposal, ad some drft pages. But now I feel that it has to be one, written and sent out into the world.
I don’t think I’m a hero or a saint, though I’ve been called both. ( each time I want to go, really, people? Are unsure youre talking to the right person?) People somehow equate survival with heroics…I don’t know about that.
But I do know that more and more people like me aren’t being born. People with genetic diseases try to prevent their children from having the same disease, which makes me go, “why?” Don’t give me, oh, I don’t want her to suffer like I did.
I’ve always sort of thought suffering is a choice–pain isn’t. Things hurt. Suffering, as in, your mental state, is a choice. It’s a verb–it’s an action word. It’s not something that can be avoided. Everyone suffers differently. So if my kid didn’t have CF, they’d have something else. It could be less. It could be more. Are you saying that you wish your parents had aborted you? Or decided “not to implant” your particular embryo? I certainly hope not.
Benedict XVI once said, “Each of us is willed, each of us is loved, each of us is necessary.” We are all necessary.
Why can I do this? Because a lot of other CF folks don’t–they get their transplant, and they die. Or they don’t get their transplant, and they die. Or they’re OK with their lives, and they don’t really think about the greater world and how it perceives us (and by “us”, I mean all those who aren’t quite genetically or physically or whatever-ly normal. [As Br. H would say: “Normal? What does anyone in this family know about normal? The only normal one here is Jack-Jack, and he’s not even toilet-trained!”])
I have to write my story. I have loved all of it. In less than a month, I’ll be 31–something I hadn’t imagined as a kid. It seemed so old. My life isn’t perfect, and I’m not a saint, or a hero. I have not gotten everything I’ve wanted in life, like all of us. (Name me one person whose life is completely fulfilled.) I’m a person who has tried her best to have “life, and have it more abundantly.” The fact that so many people see my birth as a mistake or a choice to be avoided, as something terribly wrong, is what I have to correct.
God made me this way. He wanted me this way. And in the book, and in this blog, I want to tell you why this life is just so darn worth living. Why you shouldn’t be afraid if your kid has a disease or a defect or a whatever. Yes, life can be hard. Pain happens to everyone. But that isn’t a reason to not live life.
I look normal. I don’t have an oxygen tank, I don’t have scars in visible places, unless you count the right arm burn/skin graft. I work and I pay rent and I grocery shop and I do all those other things people do. Maybe if people can see that–they’ll think again. Or they’ll at least know that it is possible. A lot of the stories out there have been told by parents. I think we need to hear from us.
So now, I have to finish that draft. I have to write it, finish the book proposal, get some kind soul to read both and comment (or at least the book proposal) and then send it off.