This year, I have a Christmas baby. David was born in July, but he is the size of a newborn yet. His cheeks are sweet and pink, but the first thing you will probably notice about our boy would be his cleft lip and palate and his nearly sightless eyes, one smaller than the other.
When I was pregnant, all we knew was that he had a facial deformity – not the ordinary kind of cleft palate, fixable with a quick surgery, but something else. We were told that he would most likely be stillborn. When he managed to give the lie to that prognosis, we were told that he would probably die within a few days.
It’s easy to see the image of the Holy Child we sentimentalize at Christmas in the face of a healthy, normal newborn. Jesus, we think, must have been a perfect child, in form and function. This Christmas, it’s the stark difference between my son and the images of the Christ Child we see in the manger that is peeling something back. Jesus was born at a time of cultural upheaval to a disgraced mother in the back of a barn; my baby was born to the flurry and rush of the NICU. While Mary might have cried in relief that her labor had ended, I sobbed in agony and great pain seeing the face of my son, whose unique set of birth defects points to a short and complex life.
"There are not yet universal standards for genetic testing, but a narrow consensus has emerged around specific conditions. The first prenatal...