Monday, October 13, 2008

My Least Favorite Jump

I'm good at hiding things. Not physical things, there never seem to be enough places for them, but ideas and realities. I'm very good at putting them in a box at the back of my mind and saying, "That's not important, you don't have to deal with that, just move on."

Funny thing is, most things so labeled and religated to the back of my mind actually are quite important. They are the frightening, unpleasant, or otherwise unsavory realities of life. (You have no idea how many times I've gotten up and walked away while writing this). But more and more lately I've felt compelled to the idea that the worst of these tucked away realities may someday be of use to someone.

(I've been trying to come up with a clever way to lead into this, but there doesn't seem to be one so I'm just going to dive in, please forgive the lack of segue).

I was born with a cardiac disorder known as pulmonary atresia with tricuspid stenosis and a hypoplastic right ventricle. The doctors say that means my tricuspid valve does not function properly and my right ventricle is too small. There is no rhyme or reason for these things, they just are the way they are.

But I'll tell you what it really means. It means by the time I was seven I had an abdomen full of scars and had spent more time in the hospital than most of my friends put together. It means my brother and sisters have a whole litany of stories that begin with "Do you remember that time we were at Grandpa and Grandma's and...oh, you weren't there." (I don't begrudge them this, I just think it's funny.) It means from grade school into about college I wore shirts with turtle or crew necks to hide my scars. It means even though I'm trying to live as a good God-fearing Catholic, I have been advised not to use Natural Family Planning. It means I will always have to go to a pediatric cardiologist. It means more things than I can write here.

When I was younger I pretended this wasn't real. I didn't think about it, I didn't talk about it, I didn't even like it when other people talked about it while I wasn't around. But the older I get the more I realize that a) For my own health and safety I need to understand what happened and what has been done, b) I realize I am not alone in fighting congential cardiac defects and c) because I am not alone, there may be people and parents out there who don't know what they have gotten into and need a little sympathy and to know that this kind of thing can be lived with.
So to all of you, if you ever read my blog, I want you to know when I was born, the doctors told my parents I wouldn't make it to two and a half months, and next month I will be 24 and a half. I haven't had serious, open heart surgery since I was seven. I've had many good doctors, most of whom understand the trials of being an adult with a "child's condition." While I was in college I spent four months living by myself in London (it was fabulous). I have a career, I'm happily married to one of the greatest, most understanding men of all time. While I shouldn't have kids of my own I do look forward to being a mom through adoption.

Don't despair, it is possible to live a full and happy life with most congenital heart defects.

P.S. You have no idea how hard it was for me to post this. I've gotten up and walked away more times than I can count, put up my hair and put in my contacts, called both my parents, and put it "Much Ado About Nothing" so I could take comfort from one of my favorite voices :)


  1. We are very proud of you Margaret! We know how hard that must have been for you to do. You are an inspiration to others, without even knowing it!

  2. How brave, my friend. I think it's great that you're sharing this. When I miscarried I went to the web to find people who knew what it felt like and it was so comforting. By sharing your story you may very easily comfort someone else who right now feels very scared.