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.
He has what’s called a midline facial cleft. It’s not a genetic abnormality. Almost all babies with his type of cleft have brains that don’t separate into distinct hemispheres; the condition is called holoprosencephaly and has a life expectancy around two years, although many die at birth or just after. While David does have some brain abnormalities, revealed by the MRI just after he was born, his brain hemispheres are separate and accounted for, though his corpus callosum is malformed. Our state-of-the-art NICU had never encountered a baby like David.
He can’t nurse, but he drinks from a bottle, which is rare for a baby with a condition like his. And he is, astonishingly and stubbornly, alive. The doctors cautiously permitted us to take him home, cautioning us that his sodium levels were so low that he would likely die from a seizure quickly. He has kept living. And more: He’s meeting his motor milestones on target. He wriggles and coos; he laughs and I laugh back at him; he grabs my finger and he holds on. We were told he would be totally blind; it is almost certain that he can see our faces. He will, I think, have a Christmas. He may have more than one.
There is no roadmap for David – none that we know of. There is no prognosis that he has not defied. He is a child who is one in a million.
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.
The Holy Spirit is teaching me to see the incarnation anew this Christmas. While I have always stood in awe of our great king Jesus becoming like us to minister to us, I’m looking forward more than ever this Advent season, in certain hope, to Christ’s return. Not only is creation groaning for our Lord to reappear in glory, but my son desperately needs the renewal and reordering that Christ the King, triumphant on his throne, will provide. The little, broken body of my son points to both the Christ Child and Christ the King in ways my healthy children never have. As the song says, when Mary looked upon her little baby, she saw the face of God. I, too, see the face of God in my son. God’s reflection and fingerprints are all over my boy, from his eyes to his cleft, reminding me of the “deeper magic” hidden by Christ within his frail flesh.
When I stepped into the ultrasound room with my husband at seventeen weeks, before our doctor took a second look at the abnormalities in our son’s face, I heard for the first time in my life the audible voice of the Holy Spirit. I felt with my whole body the weight of the phrase, “This is a special baby,” and I knew that God was behind me and before me. Like Moses, I had stepped onto holy ground.
As God tells Moses, in Exodus 4:11, “Who makes a person’s mouth? Who decides whether people speak or do not speak, hear or do not hear, see or do not see? Is it not I, the Lord?” It is not simply that God uses bad things for good purposes; God ordains things beyond our ability to understand, things that look bad to us but are in fact his good will for his glory. We must change our perspective. If his eye is on the sparrow, his eye and hand have certainly ordained the disability of my son for his purposes.
God has provided this glorious tension for us, expressed in Hannah’s song in 1 Samuel 2:
The bows of the mighty are broken,
but the feeble bind on strength.
Those who were full have hired themselves out for bread,
but those who were hungry have ceased to hunger.
The barren has borne seven,
but she who has many children is forlorn.
The Lord kills and brings to life;
he brings down to Sheol and raises up.
The Lord makes poor and makes rich;
he brings low and he exalts.
He raises up the poor from the dust;
he lifts the needy from the ash heap
to make them sit with princes
and inherit a seat of honor.
For the pillars of the earth are the Lord’s,
and on them he has set the world.
As we groan with creation waiting for the return of our king, we can accept and welcome this tension that the Lord has ordained. Could it be that God has broken so that he can mend, that he has brought low so that he can raise high, that he has killed so he can bring to life? Praise the name of the Lord! Our little son is named David Samuel, lest we forget that he is “God’s beloved” and that “God has heard us.”
It’s helpful for me to find an allegory to illustrate such profound mysteries – but my allegories are not always profound. A favorite Christmas film of mine is the exceedingly old-school Rudolph the Red Nosed Reindeer. My favorite part of the film is when Rudolph’s adventures take him to the Island of Misfit Toys. The king of the island is a winged lion, who searches the world every night to find broken toys. Rudolph asks the king to let him and his companions stay on the island. While the king refuses to let Rudolph stay, he gives Rudolph a mission to help the toys. Once he returns to the North Pole, Rudolph must remind Santa that the broken toys exist and try to help them find homes with children who will welcome them.
One take on this scene might be to see my son as a misfit toy – one whom some could discard after a prenatal screening and try again for a healthy baby. I wince when I hear parents say, “As long as he’s healthy,” as they look forward to the birth of their child. We don’t welcome children on the condition of their health as newborns, any more than we keep them on the condition of their good behavior as they age. We welcome children of all shapes and sizes, both formed perfectly or deformed by our standards, because all have been crafted by a God who makes both broken and beautiful things, somehow. It is God’s world and we say with Eli in response to Samuel, “He is the Lord, let him do what is good in his eyes” (1 Sam. 3:18).
As the song says, when Mary looked upon her little baby, she saw the face of God. I, too, see the face of God in my son.
While my face doesn’t bear the scars of an imperfect world the way my son’s does, spiritually we are all broken toys, misfits in need of a great king to search us out and gather us into his land and his people. We desperately need the touch of the great Toy-Mender to restore us tenderly, not just in body but in soul as well. My spirit bears marks of sin that can only be fixed by the one who made me and who can turn me into a new creation so that I can sing his song for his glory. I’m not sure that David Samuel will ever speak or, if he speaks, what he will be able to say, but I know even now that his life and breath is a song of praise to the maker of the stars and the sun. My prayer is that like his namesake King David, our boy is dancing with laughter in the sight of his Father.
This Christmas, I’m looking with new eyes at the weak and the sick, and at all those whom God has humbled. Our Savior became one of them – one of us. This is the call Christ extends to us, that we die with him and be raised again in glory with him as new creations, to sing the song of praise he puts on our lips. In Christ’s strength, I am a mended toy who has found a new home, a testimony to God’s grace. Because I know that I have been loved first by the great king, who sought me out when I was broken, the most misfit of toys, I can now say with hope, “He is the Lord, let him do what is good in his eyes,” not just with the life of my little son but with my life as well. Someday, David Samuel and I will see the face of our king as we are welcomed into the house of the Lord forever. But for now, as we wait, we can sing.