The surgeon lines up his drill, a motor whirs and the twirling blade creeps forward, throws up a little spurt of bone chips. A few hours later, the sleeping child is wheeled back to her room, six gray bolts now radiating from her head, six gray nuts locking them to a thick metal band that encircles her brow. It is a wicked-looking contraption – something from a bad mechanic or a scary movie. Ironically, they call it a halo.
The angel who wears it has been here before. It is her second halo; the first came three years ago, before she was two years old. When the bolts stopped hurting, the doctor dropped a line to the halo and hoisted the angel off the ground by her own skull. This is what kindness looked like, under the circumstances, because the angel has a dangerously curved spine. Still, the pictures made me gasp – the ugly hardware screwed into this soft child; her lonely, helpless suspension above the floor.
And then, the video began to play. The angel writhes – no, she is swinging her legs. Higher and harder, she twists at the waist, her feet thrown out in a wide circle. Then, by some trick of physics she has discovered, her whole body begins to spin, blurred like an ice dancer and, laughing, she shouts, “Momma!”. This is what joy looks like, under the circumstances.
Meet Alsae, who has never had a normal day. From the moment of her birth, her digestive tract has been too small. Her limbs are different than yours, and her spine is crooked. It all arises from a rare syndrome called Microgastria and Limb Reduction. So many things wrong and yet, watching her laugh and spin, you wonder if you have ever seen someone more perfect.
Fast forward to 2019. Again, she is a reluctant princess, screwed into another halo. Again, her father has transformed the ugly band into a beautiful crown, filling the grim space between the long bolts with jewels and bright colors. Her mother’s voice is with her always, cheering and proud, as constant and fixed as her crown.
But the day has come for the operation they have long been trying to escape. Their love, her courage, their brilliant doctors’ skill, the painful back braces and long hours spent hanging by her crown – it was not enough to smooth her spine, and now it must be forced. More ugly hardware will invade this soft child, but this is what love looks like, under the circumstances.
The surgery takes place in Salt Lake City, twelve hundred miles from Alsae’s home, and that’s how Wings of Mercy comes into the picture. A metal rod will be placed in her back, overruling the twist in her spine, bending her in a way her body does not want to go. To force her spine without breaking it – this is one problem. If they succeed in that, she will grow but the rod will not, and that is another problem. The only thing worse than doing this surgery is not doing it, and so it is done.
Afterward, Alsae wakes in great pain. The rod has been installed. So far as anyone can tell, the surgery was successful. She has lost flexibility but she has kept her life. It is for Alsae, now five years old, just one more hard blow in a lifetime of hard blows, but that has never stopped her yet, not even stopped the beautiful smile that appears in so many of her photos.
We write this so you will see the radiance of this child, the fierce love of her parents and her grandparents, the great beauty of a life lived bravely through deep troubles. Please pray with us that Alsae will be given rest and healing, and that soon she will inspire us again.