Congenital Heart Disease doesn't give anyone a choice. It didn't give me a choice, it didn't give my parents a choice, and it certainly didn't give my sister a choice. She was just born into the midst of my chaos. We are 13 months apart and while we normal parents would be trying to figure out life with 2 kids under 2...my parent were trying to figure out life with 2 kids under 2 while one is making trips back and forth to the cardiologist and spending days at a time in the hospital. It was not an ideal situation for anyone.
If you know my sister, you know she is tough. "Tough as nails" would be a great way to describe her. Some people might categorized her as mean but, I prefer to use words like, stubborn, feisty, determined, unwavering...just to name a few. She is most certainly someone who you want on your side in this life. (I'm darn glad she is on mine!) See, she has had to fight for and work for everything she ever gotten. When your older sister's sickness is the center of the world you are born into, you have to fight. But the best part about my sister, is that if she loves you, she will fight for you and she will fight to the death. Not once, in my entire life has she ever made me feel guilty for having a heart condition that put so much attention to me during our childhood.
I have vivid memories of my sister biking the both of us in our bicycle (it had a seat in the back for passengers) up hill because she knew I could never do it. I remember having races around our house and she would always give me a head start "because of your heart". She would still win every time, but she would never rush me catch my breath before we started another one. I remember her telling neighbors, cousins, friends...whoever we were playing with at the time, that "My sister needs a break. She has a heart condition." No one knew what that meant, not at 5 or 6 years old, but they knew not to question her. She never judged me when I needed to nap, made sure I had extra blankets when the flu got the best of me, sat next to me and waited when I needed to take a break while walking up the stairs, tried over and over again to taste my medicine (it was lemon-lime flavored), and when I had my open heart surgery, she was the only one that could bring a smile to my face. My sister, as I always tell her, is the other half of heart. She is my missing chambers. She makes me whole. Her and Jesus of course.
My sister doesn't get all the credit just because she's an understanding sister. One year, during my yearly cardiologist trip, my sister also went to see the doctor as well. Because there is a history of heart disease in my family and because of my heart condition, the doctors thought it best that my siblings and my cousins get screened for heart defects. So my sister, much to her excitement, got to have an EKG and an Echo-cardiogram done right along with me. I don't remember the exact series of events that followed, but I do remember my mom on the phone, having a long conversation with the doctor, and then calling my dad. At first I thought something was wrong with me, but I heard "Danielle" being said over and over during my eavesdropping and I knew that something was wrong.
It turns out that my sister had an Atrial Septal Defect, which is a hole in her heart. A small one but, one that needed to be fixed. Everyone is born with a hole in their heart, just like everyone is born with soft spots on their head. Just like the soft spots harden as the baby grows, the hole in your heart closes...except hers never did. It's actually a very common and very fixable type of CHD. My dad told us recently that a few weeks prior to this news, he had been driving home from work and thinking about all that my family had gone though with my surgeries, thanking God for bringing us through it, and thinking about how he didn't think that we would be able to go through it again. Well Dad, I guess God wanted to show you what we were made of because by the end of the summer, a few days after her 8th birthday, we were back in the same hospital where I had my first two surgeries. Only this time, my sister was the patient.
I remember going with her to visit the pediatric floor of the hospital, the exact floor that I had stayed on. I remember visiting the "play room" (a closet with toys) at the hospital and we got to put our hand prints on the wall with the year of our surgeries. I felt special being the person with the oldest surgery date and I loved sharing that moment with my sister. Despite the fear I felt for my sister, and the pain I knew she would face, I felt excitement that she and I would share something that very few people get to share. The night before her surgery, we went with her to hospital to get checked in. My grandparents took my brother and I back to their house while my parents stayed with her. I remember looking back as we walked out of the room, seeing my sister sitting cross legged and cross armed on her hospital bed declaring that "This is my throne!" and pretending to be a queen. I don't know that I've ever been that anxious in my life. Even though I was only 8 years, I remember thinking that being the one to worry and wait this time, was not the position I enjoyed at all.
The day of her surgery, our whole family gathered at the hospital. It brought me incredible comfort to know that my grandparents, aunts, and uncles and taken off of work, my cousins had taken off of school and we were all just together and waiting. We went to the chapel, we went for walks, we ate in the cafeteria, and we waited...together. Just like I know they waited when it had been me in the operating room. Finally, after what felt like decades, they let us know that my sister was out of surgery and that she was heading to ICU. I had in my mind that I would be able to see her, and so when they said only my parents were allowed, I freaked out. I mean, threw my Pochontas coloring book and markers across the waiting room, screamed, cried and threw my self on the floor freaked out. I wanted to see her. I needed to see her. I was the only one who knew what she was really going through and they were denying me the right to be with her. She now had a matching scar down her chest and I needed to be the one to hold her hand and tell her that incredible tightness and pain in her chest would go away. I needed to tell her not to pull on her IVs and to try not cough. I needed to tell her to be nice to nurses, because they are only doing their job. I needed to let her know that I was going to fight for her just like she always fought for me.
Well kids, tantrums never work. And I had thrown my very best one and it got me no where but in trouble when my parents came back from visiting the ICU. The next day, I finally got to see her. She looked pained, and uncomfortable, but she was fine. Her surgery had gone well, but she had a long road ahead of her. While my brother and I got to bounce around to various relatives she made a quick and smooth recovery. When she left the hospital, she still had some healing to do and it took a little time. She had to steer clear of anything that could cause an infection and when I got bronchitis, that meant me. ("Stop coughing near your sister! Go in the other room if you need to cough!" were the exact words my mother used.) As her scar healed, much nicer than mine did by the way, she had to be careful how she exerted herself and what she lifted. When school started a few weeks later, I carried her backpack to her classroom for her in the morning and her teacher sent someone to carry it for her when school was over. In some small way, I was finally able to be there for her just as she had always, without hesitation, been there for me.
Thankfully, with my sister's surgery, her CHD was completely corrected. She has had no set backs, takes no medication, has no limitations, doesn't even seen a cardiologists anymore. Only a scar provides evidence that she ever even had a problem. At times, I have been jealous of my sister, that one surgery fixed it all, and I will never have that. Yet my sister has had a deep understanding for me like no other. She has never rubbed it in my face, not once. She is still fighting for me, knowing when I need to rest, when I need a break, when I can push myself a little further, and when I'm milking it. In fact, I know that when she does things I will never be able to do, she does it for both of us. It's an unspoken bond that we have as sisters; sisters who share much more than just clothes. As if growing up sharing our lives wasn't enough, we share a CHD too. How many sisters can say they share that? I'll be it's not very many at all...
If you grew up watching Barney and Friends like my sister and I did, then you know about the sisters Lucy and Tina. They were such wonderful sisters...but even the best of sisters don't always get along. Lucy and Tina had this little song they would always sing after they'd gotten into an argument and Barney and their friends had encouraged them to make up. My sister and I used to sing it to each other, and still do from time to time. So, right now, this goes out to my sister:
Sometimes we're real close friends, we stay up late and talk at night.
Other times we don't get along, there are even times we fight.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister.
I've given her a great big hug when she was feeling bad.
But then again I've said some things, that have really made her mad.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister.
But I know she's always there, and I know she'll always care.
She's my sister, I love my sister. With all the medical madness my family has been through, my sister has always had a fascination with it. In May of 2016, she achieved her life long dream of becoming a doctor and I could not be prouder of her. Not only is she my sister but she is my best friend. She is the best part of me, and I carry her heart inside the half of mine. She is my other half, in every way. I don't know what I would be without the other half of my heart. God knew exactly what He was doing when He made me, and when He made my sister, and when He made us for each other.
I love you Yellie. Always.
Love,
Emmy
