A portrait of my daughter every day in 2014

I’m feeling overwhelmed today. For no good reason what so ever, and for every reason on the planet. People think I’m nuts sometimes. I see it in their eyes, hear it in their voices. People have flat out said I overreact, am overprotective, and just don’t get it. The obsessive use of hand sanitizer. Wiping down every surface I touch at work. I’ve turned in to a total germaphobe since having this child. And no one, NO ONE out there understands except for other mamas to kids like her. They say they do, but they just don’t get it.

No, it’s not good for her to have a high fever to fight off infection. No, it won’t help build her immune system to get sick now, and even if it does it’s not worth it. No, holistic medicine WILL NOT FREAKING CURE HER. And if you know me, you know I try to be as natural and hippy as possible (hello people I make my own deodorant). No, I’m not overreacting; I’m not just being a “spaz”.

I’ve been thinking about it a lot lately. I don’t think you understand what it is to be the mother of a heart baby unless you are one.

My child doesn’t seem “sick”. Last week I admitted out loud that she’s not normal. That her heart is really fucked up. And then I felt guilty the second I said it. I guess I get nervous as she gets older, and I realize one day she actually will have surgery. Someday they are going to crack open this beautiful creatures chest, and fuck with her heart. Most days I’m pretty good at ignoring it, forgetting about it, and just plain repressing it. Some days, not so much.

I realize from talking to other moms of kids with Ebstein’s that some of the top surgeons would say she should have surgery now. Her finger nails turn a deep shade of purple some times. Her hands were blue after a walk the other night when it was cool out. Her breathing becomes quite rapid at times. Her body produces excess hemoglobin because her oxygen saturations are always so low. Her blood pressure is high. She’s not even 2 and she has high blood pressure. It’s a subtle reminder of what’s happening inside.

I see these brave kids, far braver then I could ever be, traveling worlds away to fix their special hearts. I see the photos of their scars, their chest tubes, and their recovery. It seems overwhelming that someday that will be my child.

I try really hard every day to forget about it, because the future with her is big and scary and overwhelming. I don’t want her to ever feel that, so I push it down and out of my mind. There are times however, when I can’t seem to ignore it. When I feel that I carry the burden of who she is all on my own. I normalize it so for everyone else around me, not for them, but for her. And that’s when I panic. Or when we run out of sanitizing wipes at work. Maybe I am a little paranoid.

I heard this song today, and it reminded me of how lucky I am. Of other mamas, who weren’t so lucky. It reminded me to take pause, and look at this girl and remember how much she went through to be here. How much she still has to go.

Bad things happen. In this big awful terrible world, bad things happen, to people, to families, to children. Sometimes I forget how close we came to losing her, how bleak it seemed in the beginning. But this girl, oh this special girl. She is a warrior. She has fought battles larger than any I have faced. She is stronger than anyone else I know. And she’s not even 2 yet.

But here we are, every day, every single minute, lucky. Lucky for every moment we have with her. Every day watching her grow and change and discover her likes and dislikes (she’s become quite good at vocalizing those lately). Her personality is strong. She is tough. She is a fighter. And I am terribly lucky to have been given such a magical child.