It is a family photo, much like any other. Sabrina, a cute six-year-old, looks back from the center of the image, held securely in the arms of her smiling parents. Big brother, standing slightly aloof, wears a serious expression befitting the dignity of late adolescence. The brilliant afternoon sun gleams in their hair and divides the scene into sparkling highlight and dark shadow.
It is a typical family photo, except the family is standing in front of an airplane, preparing for a long ride home. The smiles, on second glance, appear a bit worn. And Sabrina is curiously limp; her arm hangs straight down and her father’s hand cradles her chin, his fingers gently directing her face toward the camera. It is not that she will not look there, but that she cannot.
Sabrina is losing control. It began three years ago with a steadily increasing clumsiness. Three-year-olds are not noted for grace, so it was easy to hope that this would pass in time. A year later, she began to stutter. Not long after, her arms began to move in strange, repetitive patterns and Sabrina could not make them stop. There were many doctor visits but no solution and, over the next few months, Sabrina gradually lost the ability to walk and, now, the ability to talk.
The answer came about four weeks ago; Sabrina has Tay Sachs, a rare disease that slowly and relentlessly disables the nervous system, isolating body from soul. Sabrina is alert and passionate, but her body is a car without a steering wheel; it goes where it will and she is along for the ride.
This week, the family has been at a research hospital in Minneapolis conferring with doctors who study the disease. They offer little hope; current treatments are painful and ineffective. Dan and Ensenia decide to spare Sabrina that trauma; to surround her with love, to do for her what she can no longer do for herself, to pray that her little body is not coasting to a stop.
We load up and depart the small airport at St. Paul, swaying in our seats on this warm and gusty afternoon. When we have settled into a climb over southern Minnesota I ask Dan a few questions. As he answers, I unwrap the chocolate bar I had just secured from the FBO’s vending machine. It has been a busy day and, nutritious or not, it looks good. I break off a piece and offer the rest to Dan. He declines, telling me that he loves sweets but does not eat them anymore. When Sabrina became ill he vowed to abstain until she got better. He does not say this for effect, does not say it to reduce my enjoyment, but the candy bar goes back into the wrapper. I savor, quietly, the bite I had already taken, savor the knowledge that my three beautiful daughters are well, settle into the awareness that Dan gracefully shoulders a load of loss and worry and sorrow that might crush me.
I remember the moment of looking for them as I walked into the FBO. They were not hard to spot; it was a small lobby with but one family inside. A tired family far from home and far from well, but Ensenia’s smile turned on like a beacon turns on, registering recognition and filling the room with its light. There is much darkness pressing in around this family, but there seems to be something stronger pressing out, a light that overwhelms the darkness.
As we drone along, I look back occasionally. Ensenia holds Sabrina close, nestled as any young child would into her mother’s lap, and smiles to indicate that they are ok. In the back, young Adam reads. He wants to be a physician, Dan says. Even now, Adam plays an active role in Sabrina’s care and in consultations with the doctors. He reads their reports and understands much of their discussions and helps Mom and Dad process their recommendations.
I am struck by the irony here: the disease attacks Sabrina’s connection to the world around her, but inadvertently strengthens it. This family is not just managing the disability of one member; it is reconfiguring itself to remain complete. Sabrina cannot protect herself, so Dan works and prioritizes and sacrifices to somehow provide the shelter she needs. Sabrina cannot understand her illness, so Adam lays aside some of his youth and applies his strong young mind to learn how medicine can help. Sabrina cannot care for her own body, but Ensenia can see in her eyes and hear in her voice enough to understand and meet the need. Disease has silenced Sabrina’s speech and has stilled her hands and her feet, and so her family has become her voice and hands and feet. The attack tries to make Sabrina a prisoner, but her family’s love makes her a queen. What disease has stolen, love has replaced.
True, to replace is not the same as to restore, and help is provided at great expense. Sabrina remains disabled and, often, frustrated. Dan, Ensenia and Adam are not free to do what they might otherwise have done, unencumbered with Sabrina’s care. But I don’t think they see it in those terms. Dan speaks of God’s plan for them, even now, as if love’s counter-attack can succeed, as if Sabrina’s story is not, in the final telling, a tragedy after all. As if, in their serving and sacrifice, the members of Sabrina’s family are not diminished, but rather clarified and made complete and Sabrina, though separated from her own body, is set free from our common fear of being left alone.
Sabrina’s life is sharply divided between the dark shadow of her terrible disease and the brightness of her family’s love and faith. She cannot tell me how she feels, but I look back to see her nestled in her mothers’ arms, at peace.
In him was life, and that life was the light of men.
The light shines in the darkness, but the darkness has not understood it.
The light shines in the darkness, but the darkness has not understood it.
John 1:5