It is a fact that Stella was born with a congenital heart defect and having CHD is a huge part of our lives but Stella is not defined by her CHD.
If we were going to label Stella with her medical conditions the list would be long - TAPVR, pulmonary vein stenosis, Cerebral Palsy, oral aversion/food intolerance, Gtube fed, right-sided weakness, flexible scoliosis, developmentally delayed. In fact, almost half of all children and adults with complex congenital heart disease have neurological and developmental disabilities on top of their CHD. However, I think it is extremely important that Stella is raised understanding that these "disabilities" are a part of her but they are NOT a part of WHO she is. Seeing so many doctors and other medical professionals it makes it hard for people with developmental disabilities to distinguish what they are being labeled with and what defines their character.
The things that define Stella include that she is a child of God, a strong,stubborn miracle who was fearfully and wonderfully made.
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful, I know that full well. (Psalm 139: 13-14)
When God created Stella he made her exactly the way that He planned and this makes her perfect even through her imperfections. As Stella grows up I hope and pray that she uses this verse as the core of how she chooses to define herself. If Stella were defined by her medical imperfections she would be limited in her abilities and activities. I have already seen Stella overcome so many obstacles and "impossibilities" that I know she will not be held back by limitations. Stella is a strong, stubborn miracle who can accomplish anything she sets her mind to!
She's already come so far from the little baby in the NICU
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