It seems that I only come back to this blog these days when life is too hard, too messy, too much. I think that is okay. I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage. I wasn't allowed to worry. I wasn't allowed to question "what if". I wasn't allowed to worry about other children dieing. All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die. I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective. But, the thing is none of those same friends and family have any true idea of what I go through. And when I tried to open up, I was shot down and told "don't worry." Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?
And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class. She isn't strong enough to lift herself off the side of the pool to slide into the water. She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle. She can't keep up, no matter how hard she tries. So, yes, she looks good, but you don't know what you're looking at!
For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year. The cardiologists found a significant problem. They told us they could fix it. Then they said they can't. Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery. Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine. It's not you who has to look for minute differences. You're not responsible for keeping her alive!
You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't. You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in. But, she looks so good.
And you've never had to explain to a 4 year old that it wasn't likely to get better. You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold. Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.
I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5. Instead of getting stronger, she is weakening. Instead of being able to walk farther, she is traveling less. Don't let the smile fool you and don't discount my genuine worry. You have no idea because you won't look past the surface.