Sam, before she turned one, with a proud and very grateful mother.
(Note: “Flora” and “Sue” are aliases.)
“Flora” is lying in a dark room, the blinds drawn much like her pale face. Two tired eyes wander in the direction of the voice at the door before coming to rest on the visitor: a chaplain, here because the nursing staff has asked her to pay Flora a visit.
The staff is concerned that Flora is not eating. They’re afraid Flora, having lived on this sad, old earth 90 years now, is finally giving up on life. They’re afraid that Flora, at 90, might be dying.
(And maybe they in their fear of death are not unlike a whole lot of us, whether or not we believe in some future resurrection.)
And this same Flora has a daughter, “Sue,” who lives in the same facility now because she is unable to care for herself. For all these years, Flora has steadfastly, and at times maybe indignantly, cared for her daughter, who has spent most of her life in a wheelchair- until this last year, when the inevitable decay of old age has finally obliged Flora to entrust herself and her daughter into the care of others.
And so the chaplain now finds herself here in this quiet, dark room with a tiny lady, shrouded in sheets, her weary, prune-like face barely poking its way out from beneath the rumpled covers of a hospital bed.
The chaplain finds herself here knowing full well that she is probably here more because of the fears of Flora’s well-meaning caregivers than by Flora’s own request.
But, the chaplain is here, anyway. Because this is her job, of course. And, because these sorts of “end-of-life” conversations that most people prefer to avoid are ones she can by now approach with a kind of distanced, clinical “professionalism” of sorts.
It has only partially occurred to this chaplain that she might be here because of the mysterious providence of a God who can use even our fears to lead us to the very center of this crucifix-shaped world and break us open so that love spills out.
And so, dutifully then, having settled herself into a chair at Flora’s bedside, after indulging in a bit of small talk, the chaplain asks the question she has learned to ask in various ways in these sorts of conversations: “Flora, I’ve heard you’re not eating these days. Have you stopped eating because you want to die?”
And then, without answering the question, Flora instead begins to talk about her life. She begins to tell this chaplain about her daughter, the one in the wheelchair with the sweet smile who, whenever I visit, nods gently and demurely when I touch her hand and shows me with childlike happiness the colorful bracelets dangling on her wrists, the ones she has been making since she was a small girl.
“Ah, how Sue loved to make those bracelets,” her mother is saying to me now, her mind returning, I imagine, to her mental pictures of the little girl she loved and cried over and worried about and poured her life into so sacrificially all these years- the daughter she still loves and cries over and worries about even now in a nursing facility.
And as she tells me about her daughter, this woman in the twilight of her life speaks matter-of-factly. There is no hint of quaint sentimentality- only the honest, descriptive realism of a mother who has watched her daughter grow up in a hard world.
“Sue was diagnosed with quadripelegiac cerebral palsy shortly after her birth,” she says.
And at the sound of “cerebral palsy” the professional chaplain in her chair begins to crumple internally just a bit.
Flora goes on. “The doctors said it was something she developed after she was born. She had to wear a full body brace for a time, and after that leg braces.”
And now the chaplain is remembering the little plastic ankle braces with the pastel-colored flowers- the ones her daughter wore when learning how to walk over the course of frequent sessions with a physical therapist.
“How she had a hard time of it, and how I felt so much for my dear daughter and all she had to go through,” Flora is saying.
The “professional pastor” in the room is feeling something well up within her. A tear, then tears. “Holy sadness,” as the nineteen-century theologian, Friedrich Schleiermacher, is the closest name I can give for it.
Meanwhile, This isn’t professional of me, she is thinking. I can’t cry. I’m the minister here. Boundaries, people, please!
But the recollections of the beloved, blonde-headed, little girl with the bob who says, “Cheese,” when she means, “Please,” who at three still takes her time going up stairs with the slow deliberation of a novice painter etching her first still life, who lights up every room with a smile, are too hard to repress now. And, she is remembering the moment when a doctor, marveling in wonder and with great delight at the rhythmic, wave-like patterns on a sonogram, exclaimed that the child she was carrying in her last month of pregnancy was the happiest child he had ever seen. “It’s like your daughter is dancing!” he had exclaimed joyfully.
Later, she had known something was different when Samantha (“Samantha” which in Aramaic means “God listener”) hadn’t begun to walk at almost two years of age. That is when the visits to the physical therapist began. Then the speech therapist. A round of medical and DNA tests, none of which could really detect the source of the problem. Until one day in a neurologist’s office, this mother had heard the terrifying words, “cerebral palsy.” A mild case, but cerebral palsy all the same. A simple scar on my daughter’s head which could have been caused by almost anything really, and which, with therapy, could be treated and remedied if not cured.
Why? I had wondered. To bring God glory?, not without some hint of bitterness. But, how?
And now Florence is telling me about her quadripilegiac daughter whose life-long calling has been to make colorful bracelets and smile sweetly back at the world and let others care for her, and in so doing make the world a more beautiful place.
And between the tears running down my cheeks now, “My daughter has cerebral palsy, too,” I manage to stammer. “It’s a mild case,” I say. “But I can begin to imagine what you and your daughter must have endured together.”
For the first time Flora is looking into me now: “You understand then,” she says. The connection lights up her face, if only momentarily.
And now I’m holding her hand and the tears are silently streaming down my face as I try to wipe them away- as if somehow Flora might not somehow notice.
The professional chaplain is crying like a baby, I’m thinking. Get yourself together, I’m telling myself.
“Christ’s body broken for you,” I hear it sometimes said when I receive the bread and the wine. But here it is again, only embodied differently this time.
An aperture of light in a dark room.
An exchange of shared broken things.
Feeding one another.
And at the center, in the space between us, a cross with God on it.