Wednesday, February 3, 2016

For 28 Days of Hearts...CHD awareness month

It is better to be beautiful on the inside than it is on the outside. That was the theme of a fable my 11 year old chose to write for a recent school assignment. Oh, how I love her heart. Her beautiful, gorgeous heart.

Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.

By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.


Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.

Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.

My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.








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