My health is the part of me that people don't see or pay attention to or discuss with me when they look at our life. I don't see how it can be missed. I am a short, very round woman. To me, my health (or lack thereof) screams itself known as soon as I walk in the room. I've aged at least 10 years in appearance over the last three years. (I was looking at pictures of TRex's 1st birthday this morning. I looked soooooo much younger.) I don't want this for myself, but we are still in survival mode. We are working day to day, just trying to stay over the water. That doesn't leave time or energy for more.
Yet, one of the most common things that I am told by people is "I couldn't do it." People frequently tell me this after asking about the Dancing Queen or learning we've been in the hospital again or just hearing what is on my plate (even other heart moms who know I work full time or know I am an attorney). I guess they don't link my flabby exterior to everything else I have on my plate.
I have two regular responses to this statement: (1) "Yes, you could. It's what any good parent would do." (2) "I have no choice." In my head though, I'm yelling: "Give me a break! You mean 'thank goodness I don't have to do what you do.'" Perhaps that is pessimistic of me, but I don't believe my family is all that different from any other family, except we won the lottery of bad luck.
There is no known cause for the Dancing Queen's chromosomal abnormality and while it is likely that her heart defects are caused by the chromosomal abnormality, nobody knows for sure. I did everything I was supposed to do. I stopped drinking and caffeine before I started to try getting pregnant. I was on pre-natal vitamins before. I didn't eat soft cheeses, lunch meat, tuna, canned foods, etc. I didn't smoke and I would leave the room if someone else was smoking. I did a ton more, but can't remember now (probably cause I am sick). But the point is, it happened and we are stuck with it and we do what we must because there is no other choice and there never has been. This is my family and I will make it work because it has to.
Since I have a hard time not being accurate when I write, there is one caveat to the penultimate sentence of this post. Technically, we were given the choice of all choices when we learned of the Dancing Queen's conditions in utero. However, to us, there was never a choice to not protect our baby, but that is a post for a different time.