Feb 20
emilyanne620 , Posted on SUPPORT NETWORK Blog

The Girl With Half A Heart

Story image

Lately, I've been thinking a lot about the word "normal" and how it means absolutely nothing in my world. I'm not normal. I don't live a normal life. Nothing about my life has been normal since the day I was born. Literally, nothing.

When my mom was in labor with me, they didn't like my heart rate. Not normal. (But not really abnormal.) So, they took me by an emergency C-section. Not normal. (But also not too abnormal.) I came out a lovely shade of blue and they figured it was because I had the cord wrapped around my neck. Again, not normal. (But not really too abnormal.) Here's where it gets good. Any possibly for 'normal' is about to be totally thrown out the window. When they unwrapped the cord from around my neck and I start to cry, I began to turn a lovely shade of purple. Definitely NOT normal. Not normal at all. And the doctors and nurses knew it. In fact, my parents have told me on multiple occasions that they could see the worry and panic in their faces. That these medical professionals; who were doing everything they could to make an abnormal situation turn into a normal one; knew that this was very abnormal and they were scared. That's not really normal either. The abnormal was just beginning...

They doctors surmised that something was wrong with my heart. Not really normal. I rode in my first ambulance at 18 hours old to a different hospital where they were equipped to "deal with" whatever was wrong with me. Not normal. At one day old, I had been gotten myself a cardiologist, (not normal) my parents were told I had Tricuspid Atresia and an Atrial Septal Defect (not normal) and instead of planning to take their new born baby home, my parents were making a plan with the doctor on how to attempt to "fix" or "correct" their new born baby's heart defect. (Really, really, not normal.)

My permanent shade of blue, which tended to turn a deep shade of purple when I was upset or cried, (Which my mom would probably want you to know was abnormally often.) stayed that way until my first surgery at two months old. The abnormal continued on with another surgery and eventually open heart surgery at 4 years old. At this point, the world normal was practically a foreign language.

Ah normalcy, I can truly say I never knew you. Every surgery, every procedure, every doctor visit was an attempt to bring me closer to normal, to try and provide whatever semblance of normalcy possible. But no matter what, normal never happened.

It's not normal to be winded walking up a flight of stairs. It's not normal to be unable to jog or run for 2 minutes without getting extreme shortness of breath. It's not normal to have to take medication every single day for the rest of my life, and to feel weak if I forget to take it. It's not normal to have giant scars on my back, down my chest, and 5 or 6 small ones across my body. It's not normal for humidity to make me lethargic, make my breathing heavy, and my irritability soar. No, none of that is really normal.

Over the years of being abnormal is so many endless ways, I've come to learn that abnormal is my normal. That in the ways I'm not like other people, I'm very much myself. What's normal to the rest of the world is out of reach for me, so I have to create my own normal. The life that Tricuspid Atresia and Atrial Septal Defect has given me is the only thing I've ever known. That's my normal. It's been a long process of understanding and accepting that my normal has a very different definition from other people. My family has lived a different normal than most. My parents haven't had a normal day of parenting in their lives. Only recently have I learned to be okay with that. Only recently have I been able to thank God for the normal He gave me because of the tremendous lessons I've learned through all the abnormalities. (I'll save those stories for another post.)

  1. I was first born, and the doctors were scared, and my parents were worried and nothing seemed be to going as planned...or normal; my parents prayed that whatever happened God would give them the grace to handle it, knowing that He would be there, He would be sovereign, He would be provide mercy, and comfort, and peace; no matter what the outcome was. I pray that prayer a lot. I will continue to pray it often. And I believe that He still answers it, just like He did for my parents then, and just like He has done every day of my abnormal life. He is the creator of my heart, the author of my abnormal life. To Him, I'm fearfully, perfectly, wonderfully made. To Him, there is no 'defect' or 'condition'. To Him, I am normal. Just knowing that makes facing every abnormal day worth it in every abnormal way.

Hope your day is as normal as they come!

1 Comment
  • marysirianni

    THIS is beautiful and just made me cry!!! AMEN! 

dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active