We learned about Emma Kate's heart on April 22, 2008. Of course, I never thought I would ever miss that anniversary. I also never imagined anything would be wrong with any of my babies. So it came as a complete shock to us when we were told that the left side of Emma Kate's heart hadn't fully developed. My memories of that day and the days following are very dark. There was so much uncertainty in our baby's future and it was very scary.
Have you ever been in a darkroom? I don't mean a room that doesn't have any lights on. I mean a photography darkroom. If you haven't, it's kind of creepy when you first walk in. Your eyes are used to seeing everything that is around you, and then when you go behind the door or the curtain into the darkroom, you can't see anything at all for several seconds. You have to be really careful because you aren't sure of your surroundings. You're not sure where to go or what to do. Slowly, you can see a faint glow and you feel a little better. Your eyes adjust gradually and you can make your way quite easily around the room, even though it isn't your comfortable norm. This is how I kind of relate my experience with learning about the "heart world."
We were taken to a very dark place that day. It didn't feel normal or right at first, and it was really frightening. There were so many unknowns. But slowly, we adjusted to our "new normal." We adapted to things. We learned our way around a little bit, we read and learned lots of information about this new place we knew nothing of before that day. Now, I feel that I can navigate this world a bit more easily. There are still a few unknowns and uncertainties, and having half of a heart isn't something I would ever choose for my child. But it has become our new normal. We know what to expect of our daughter. We know what is normal for her, and most of the time, we know when something isn't quite right.
Quite honestly, I think the reason I forgot our "when-we-learned-about-HLHS" anniversary is because we don't ever think about it. On a day-to-day basis, we don't treat Emma Kate like she has a broken heart. She loves to run and dance and play. She loves to make silly faces and laugh. She's a very loving, sweet girl. She is learning so many new words, and she's talking up a storm! It is Emma Kate that convinces us that we have a normal child. HLHS does not define her, as I had feared it would two years ago. And I am so thankful for that.
Obviously, we are not finished with this journey in the Heart World. We never will be; it is lifelong. Emma Kate still has to undergo the Fontan (which the doctors are predicting will be when she is around three years old). Some days I have a hard time convincing myself that she will need another open-heart surgery. I think that is because she just seems completely fine. In some ways, I dread those days ahead, but I also have such a peace about them. It's unexplainable. But I know the One who has granted me with such peace. I know my daughter's life is completely in His hands.
And I am so very glad that it is, because I sure do love this little girl.
