It's February 2021 and February, in my world, is known for something very special -- Congenital Heart Defect Awareness Month. It started as a day -- February 14th. We petitioned government officials to announce that that one day was to be forever known as Congenital Heart Defect Awareness Day. It gave us an opportunity to meet with government officials, to do radio shows, talk to reporters, and become advocates for a hidden birth defect.


Over time it became Congenital Heart Defect Awareness Week because there were too many activities to fit into one measly day. Then it expanded until it was Congenital Heart Defect Awareness Month. An entire month for a birth defect hardly anyone seems to have heard of? Yes! Why? Because it's not as rare as you might think.


Congenital heart defects are the #1 birth defect around the world. They don't discriminate by color, sex, nationality, socio-economic status, or any other seemingly important demographic. They affect people all over the world, they affect people in my home. My youngest son was born with multiple heart defects. He has a special heart and thanks to his heart, I have come to know people all over the world and I've become a voice for the invisible people who have often felt alone.


What can you do during Congenital Heart Defect Awareness Month?

• If you're a member of the congenital heart defect community, you can share your story on a podcast, to a newspaper reporter, on a radio show, or to your local government official.

• For introverts, you can passively spread awareness by Sharing, Liking, and Commenting on posts that spread awareness or you can even do something simple like adding a frame to your social media photo/banner.

• You can celebrate the lives of those Heart Warriors who are doing well, remember the many professionals who work to save children's lives by bringing cards or thoughtful food to a local hospital, say a prayer or light a candle for a family whose child was taken far too soon. By remembering the many people who are touched by congenital heart defects, you are promoting an understanding of this condition.

Have a heart and spread awareness of the #1 birth defect in whatever way your heart guides you and remember my friends, you are not alone!



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Updated: Feb 2, 2021



Amy M. Le was born in Vietnam and immigrated to the United States in 1980. The fall of Saigon propelled her family to embark on a treacherous journey to America. She lived in Seattle most of her life and worked for large corporations like Microsoft and T-Mobile. In 2017 when Amy’s mother passed, Amy quit her corporate career to write her mother’s story. “Snow in Vietnam” was her debut novel published in 2019. Amy is a Vietnam War survivor and a Congenital Heart Defect (CHD) warrior. Today Amy is a full-time author. She resides in Oklahoma with her husband and son. When she is not writing, Amy volunteers for a child advocacy center and serves as president of the Oklahoma City Writers Inc.


Visit Amy's website to learn more - https://www.amy-m-le.com/



1. ATRIAL SEPTAL DEFECT (AUGUST 1980)

Her face, both lionhearted and bitter, represents the willful baby I fought to keep alive and the hardened woman she may one day become. My daughter rests on the hospital bed with her small fingers squeezing the bedrails. Her eyes cast shurikens at the medical staff as if they are samurais coming for her. Ready for battle, Dolly accepts her fate and acknowledges that her chest will be cut open to fix the defect in her heart.

The fear inside me is parasitic. One would think the origin of the infestation came when Sài Gòn fell and communism blanketed Việt Nam. Perhaps it derived from abandonment and betrayal by my husband who left us in 1975. Or maybe the fear stemmed from the difficulties of escaping my country and facing uncertainties with forty-two other boat refugees on trawler 93752. I am certain my fears began the day I became a mother. That fear has evolved and today, it has a name: atrial septal defect.

“Snow, please step aside and let them do their job.” Sky Herrington laces his calloused fingers through mine and leads me to the black upholstered chair with the yellow and red tribal designs. On the wall are pictures of Chief Seattle and David Swinson “Doc” Maynard. Their black eyes drill holes into my heart. They understand about uncertainties.

I watch helplessly as the nurses at Seattle Children’s Hospital wheel my six-year-old, my little dolly, into surgery. She gives me a brave smile and waves. My nephew, Tree, stands by the window. His stare is vacant. A tear belies his strength. I ache to comfort him and erase his worries as I did when he was a child. A hug and the promise of some banana and coconut pudding was all it took back then to bring a smile to his face. He is seventeen years old now. My touch repels him and his recoil daggers my spirit. I have only Sky to comfort me.

Sergeant Skyler Herrington, my old friend who was in the US Army, who did everything he could to deliver my freedom but also nothing to save the love of my life. At only thirty-six years old, his vibrant youth has been replaced by careworn senescence. The last time I saw him was eight years ago, in my hometown of Vĩnh Bình, where he stood shell-shocked over Sam’s lifeless body. Sam, the soldier I was going to marry…the man who still haunts me when I close my eyes. The Việt Nam War took its toll on all of us, but perhaps in some ways, it robbed Sky of more than his peace of mind; it siphoned the essence of him, the embodiment of everything Skyler.

Still, a part of me resents him for not doing more. More of what, I cannot say. Just more. Can I forgive him for Sam’s death?

“Aunt Eight,” Tree says, “Thủy-Tiên is not going to make it.” My nephew does not turn around to address me. He stares at a photo of the Space Needle and Seattle skyline.

“We did not come all this way for her to die.” I want to shove my nephew up against the wall and slap some sense into him. How dare he inflict his doubt on me? Of course, my daughter will make it through open-heart surgery. She’s stubborn and resilient. I know Tree is still angry with me for bringing him here to America. I want to punch something.

“I have never seen her skin so blue. And her fingernails…They were black.” Tree looks directly at me and challenges me to acknowledge the possible truth that my daughter may die. What if I never hear her laugh again? Never feel her soft, sticky hands holding my own? Never soak up her kisses or melt into her arms?

Sky looks at me questioningly. He does not understand Vietnamese. I give him an unnerving smile. He stands up and mutters, “I’ll get us coffee,” and strides off quickly. I want to shake him, too, but I remain calm.

How did I get here, to this space where I hate the world and resent those closest to me?

 

Book trailer for Snow in Vietnam and Snow in Seattle:








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For the mama whose heart has ached on the closed-out side of an operating room door, I'm sorry how you know. The kiss of that precious little cheek - soft and blue that tells you it's time to break a heart wide open. I'm sorry how you know. When your strength is down to one last thread and you cling to any fiber of hope waiting for hours with stirred-up guts and clenched-up fists, I'm sorry how you know.

But did you also know on the other side of that operating door was a healer whose love is bigger than heaven and earth? Did you realize when you opened the hands that held onto the thread - fingernail printed skin - that He had you all the while?

I'm sorry how you know, but I'm thankful He knows you.

Thank you, God, that you will never let us go. You are the maker of heaven and earth. You know every fiber - every hair on our head, and you call us by name. Thank you, Lord, that you love us like no other. Thank you that there is no mountain you cannot move and no waves you cannot calm. You control the seas. Thank you for healing our broken hearts, for mending them up, and making them whole. I pray we always remember that with your life laid down, you conquered the grave. Let us always remember your love. Let us always remember you know us like no other. I pray in Jesus' name, Amen


For more from this writer visit: Jennymuscatell.com




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