“Nuelie is our firstborn and only son. When asked what he loves most in the world, he says, “Family, and drawing.” Every day he says he will be a different thing when he grows up, but it is always with enthusiasm and creative details. Some days he wants to be a flower picker, other days he wants to be a lawyer, and most days he talks about going to “super university” where I guess he learns to be super. In just this post, he poses as Superman, Captain America, and a soldier.
As parents we hope for and have joy in all the possibilities and future of our child. While he was still in-utero, we as first time parents were told that he had Edwards Syndrome. Most babies with Edwards do not survive pregnancy, and have many organ abnormalities and malformations. We were told Nuelie’s organs were growing outside of his abdomen, and that our best option was to terminate our pregnancy.
When people hear this story, they look at Nuelie and say, “He doesn’t have Edwards, so was he healed? Were the doctors wrong?” This is what we know. Edwards is not a disease. You do not get better from it. You have an extra 18th chromosome and that is part of every cell of your body. Nuelie’s organs went back into his abdomen with no surgery or treatment. The fluid pockets in his spinal column went away.
Life is mysterious. We plan for long lives filled with happy moments, achievements, family and friends. We forget that we don’t know what will happen this afternoon. When we look at Nuelie (short for Immanuel) we remember that God is with us, and we are thankful.”
