With that being said I stopped writing and blogging a few months ago. I decided to take a cibaticle from writing and advocating as a parent. I decided to take a step back and see life as my daughter sees it.
Over the past few months, walking in my daughters shoes, I have discovered more about not just my daughter, but what life is like for her as a CHD tween. I thought my heart ached for her before......my mind was blown by my discoveries.
It amazed me how uneducated children are when encountered with diversity, and discover one of their peers has special needs. The disconnect from The Lord and the word of God! The boldness children have speaking freely in front of others, oh yes including me....Cora's Mom!
Hearing children speak less than pleasing words to my daughter has been a huge pill for me to swallow. Momma bear has wanted to come out when I have been a witness to these conversations. But I literally bit my tongue and waited for Cora's reaction and responses.
It is appalling to have been a witness physically and emotionally to these children who speak inconsiderately and disobiently. The one that has stuck with me the most and makes my stomach turn and my body cringe is : " You will never be normal. You are damaged goods Cora. No one will ever want you."
I can't believe young children speak that way to others and have no moral issues with the cruelty seeping from their mouths, or the verbal beating they are giving to another. That day my heart broke. I wanted, as a grown woman, to grab that child and smack their mouth, and pray scripture over them. I looked at my dear daughter, my miracle God gave me, and saw her glassy eyes as she let these children speak.
I stepped forward not able to allow this to go on anymore, but Cora looked up at me and with her beautiful blues eyes pleaded me to stop. With that I watched my daughter respond to those awful, awful words.
She stepped closer to this child and proceeded to respond with more grace than I have ever seen a 12 year old have. I could see she was upset, and broken by these children. But I also saw God's grace working through her. Watching per center herself and gain a little control her quivering voice spoke magic to my ears. Cora didn't put down those children, or call them names. Instead she informed them that she was God's miracle and her scars are not just proof of that, but they are also God's love. It was so beautiful. The unfortunate result was that those children didn't really listen to her, or care what she said. At that moment the gears in my head shifted.
Maybe I need to change my coarse of educating? Maybe I need to be educating all these children instead of the adults? What if all the advocating I have been doing was really for nothing, because those parents I have spoken to deeply advocating for CHD didn't seem to take the time to teach their child.
With CHD's killing more children than all childhood cancers combined. We need to educate and spread the word about Congenital Heart Defects, and get some funding to research this defect in more depth. So I will continue my advocating for the hope that I can touch just one parent, or just one child. That maybe I can plant a seed within them to carry and later to share their new knowledge with others. Spreading Congenital Heart Defect Awareness!!! Maybe then....just maybe, the experiences my 12 year old has faced thus far in her life with her peers, will cease to exist!!!!!
Blessings until next time!
Drena
