Friday was a wonderful evening with my amazing daughter. We attended a dinner for the school winners of the Write Out Loud competition. Leila was recognized Sunday for winning "Most Inspirational Piece" at Mark Twain - in fact, she was the only student from Mark Twain recognized on Sunday!! She wrote about her experience going on the Rockin' Roller Coaster at Disney World, how nervous and excited she was when standing in line, what an amazing thrill it was to ride upside down. I took some time this week to reflect on how Leila inspires me. She an excellent student, I am so pleased with how well she has transitioned from being home schooled to being a student in the public school: she excels in her class, she gets along with everyone, and her perfectionism has lots of room to exercise with quizzes and tests that she didn't get at home. I knew that no matter what, Leila would always rise to any challenge to which she set her mind. In fact, this was apparent from her earliest moments as a solo human. After Leila was born, it was immediately clear that there was something different about her: in this case, her heart was different. She was very sleepy and unable to nurse as her body worked very hard to make sure she had oxygenated blood. On her second day of life, we took her to Children's Hospital in Seattle. So worried were we that we settled on a name for her in the car ride over, giving her a name so we hoped she would know to stay with us, that Earth was where she was meant to be at this time. In the emergency room at Children's we met with a cardiologist who told us she had partial or total anomalous pulmonary connection, a condition where the blood leaving the heart through the aorta is instead routed back into the heart, not traveling into the rest of the body. It was a Saturday and we were looking at open heart surgery by Wednesday. So many people were praying for this baby, sending her energy and strength. It was very clear she was a fighter. Her little self, just less than 9 lbs when she was born, filled up the isolette in the NICU - she didn't really look like a sick baby, she looked so big and healthy. I spent hours holding her and telling her how strong she was, and how she was going to get through this and we would go home and she would be strong and healthy. Monday morning came, and time for her to go into the cardiac catheterization lab, where she was supposed to have some angiograms (pictures of the inside of her heart) to plan for the surgery. By luck or miracle, the cardiologist found that she didn't have an anomalous pulmonary connection as he had thought, but an arteriovenous malformation - essentially doing the same thing, but much more fixable. In fact, he fixed it while she was in the cath lab. My little fighter went home at 5 days old, without open heart surgery after all, with a repaired heart. From that point on, time and time again, this girl has shown her strength and vigor in every thing she does. While sometimes it is hard to live with a child who burns so brightly, it is also amazing to see that baby with a fighter's spirit growing into a wise young woman full of tenacity, empathy, and drive. I am grateful to be her mother, not only for these reasons, but also because my Leila is like a mirror. She shows me what I am, and I see myself reflected in her. I see where I need to improve myself, and I can see where I need to help her. For many years I thought of myself as her teacher, which indeed I am, but I also see her as my teacher - even when I didn't know I needed the lesson, and sometimes it's painful to learn, but I am also thankful to have been given this child who pushes me in the ways I need to be pushed.
And here is her narrative:
The Rocking Rollercoaster
Trying something new can be exciting. When I first went on a rollercoaster that went upsidedown, I was excited and nervous.
First, I was waiting in line, I was both excited and nervous. My heart was beating. I hopped up and down over and over again. I was grinning ear to ear.
Next, I got on the rollercoaster. I was so nervous. I knew I couldn't go back. I was smiling at the people I was riding with. I was so excited!
Last, the rollercoaster ended. I was glad I went on the rollercoaster. I was laughing and smiling. I felt really happy. I wanted to go again!
Although I was nervous before, I'm glad I went on the rollercoaster.
And here are a couple of pictures of my little fighter:
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