... but I almost did. Two years ago, we were shaken. It's so normal to us now; how could we ever not know about this world of heart defects?
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.
What a beautiful post Bethany! Your darkroom comparison is perfect. You had me in tears. :) I'm so happy to hear that life is so normal for your family. Our one year "day-we-found-out" is coming up too and I've been thinking about it a lot. It takes my breath away to think about how scared we were and then to see how well everything has turned out so far.. nothing short of a miracle. :)
ReplyDeleteThat was beautiful, Bethany, and it IS hard to imagine that our precious little Emma Kate only has half a heart ... hers is bigger and fuller than so many others who have a "whole" one. She makes it easy to forget about HLHS.
ReplyDeleteWe love you so much and are so thankful that EK is doing so well.
Love, Aunt Teri
What a wonderful post. Thanks for sharing this...we all have had those similar feelings and thoughts (still do) and i'm so thankful for heart mom friends like you to share them!!! We're not alone and yes, we're so blessed with our little girls :)
ReplyDeleteWhat a great post! I too was in tears. The comparison to the darkroom is great, I think that many people can agree that they felt the same. I know I can, I never knew so many babies where born with broken hearts.
ReplyDeletep.s. EK & AB are sooo cute
Beautiful, Bethany. I love you all.
ReplyDeleteBeautiful post! I don't think CHD parents ever forget the day their life got turned upside down, but as time goes by it's easy to have it slip your mind and in a way that's a good thing. Reliving it over and over it a bad thing. Some CHD parents had time to think about the diagnosis like you did and others like my mom got thrown into a live and death situation instantly as I was 11wks old and code blued on the xray table at the ER my mom took me to because I was breathing too heavy. Either way, the day is forever in your mind as well as the emotions. My mom can still cry when she talks about that day and I bet you can too. I'm so glad your daughter is doing well and that her CHD doesn't define her! The gift of living to the fullest and as "normal" as possible for her is the best gift in the world! I continue to pray for Emma Kate and the rest of the family.
ReplyDeleteBtw, thank you for you nice message on my blog. I pray that I can carry a child one day too, but in the end my health is the most important thing. Always think of the positives that Emma Kate can do and not the negative or else you'll go nuts!
Sending LOTS of **Heart Hugs** your way!
Take Care,
Lauren (22yr. old w/Tricuspid Atresia, HRHS)
Blog: www.laurensheart.blogspot.com