For Xavier

Many moments passed before anyone spoke. Gazing across the table at the medical team responsible for her son's life, Xavier's mother wore the expression of a matador listening for the first warning of hooves. “Your son's body is in a state of crisis,” said the neurologist, “We are doing everything we can, but I need to tell you Xavier has had a major setback.” Above the hiss of the air conditioner she delivers the unflinching question: “Is he going to die?” The answer emerges in the sound of papers being rearranged, stymied breath, and the anxious clicks of a ballpoint pen. When the neurologist finally speaks, his words seem to echo in the same way as words spoken in a Byzantine arena; the group of us suddenly spectators around a circle of dust in which a mother, in all of her tireless artistry and athleticism, rises for the final act of the bullfight: “It does not look good. We are prepared to keep fighting, but it doesn't look good.” With these words I could nearly see the matador's cape unfurl, a rich, aching red, to meet the bull portended 12 years ago when Xavier was diagnosed with mitochondrial disease. Time and the inevitable would now rush forward in ways she would never understand.

Earlier that morning, the palliative care team had entered Xavier's room to find him, feeble arms extended to either side with upright palms, eyelashes viscous with tears, concentrating on something on the ceiling that nobody else could see. When Dr. Vesel had asked him if he was in pain, Xavier had shaken his head, and beneath the tangle of tubes and monitors and the careless residue of medical tape, his body remained perfectly still. Grinning tigers sprawled across his hospital gown with the words “happy little tiger” winding sardonically around their tails. “Are you scared, Xavier?” asked Dr. Vesel. Nearly imperceptibly, his pupils widened, and a film of tears spread across the eyes, doe-like in shape and color, which would never again move their focus from the ceiling.

Flanked by her two brothers, Xavier's mother now met the neurologist's prognosis with buoyant questions about further procedures; in response he provided explanations without hope: “spontaneous mutation,” “lactic acidosis,” and “respiratory trauma,” words that seemed to kick up as dust clouds before settling ominously on her skin. Two hours of explaining concluded with talk about mitochondria and their responsibility for producing the energy supply essential for Xavier's heart and lung function. For all of the anatomic detail, spoken judiciously by the neurologist, these explanations now hung lifelessly from his lips, and silence engulfed the room. I thought of what Dr. Vesel had mentioned earlier that morning as we watched the morphine make its raw descent through the boy's drip. “People who have worked in palliative care long enough commonly see that their patients are only able to die once their family has given them permission to let go,” she had murmured, “Xavier's family is still fighting.”

The eldest uncle, reclined in his seat with arms crossed firmly around his chest, now spoke: “Make a Wish promised to give Xavier a new electric wheelchair as soon as he was discharged.” A sad smile played across his face. “Xavier was so excited. When I told him that we didn't have room for it in our car, he had laughed. “Don't worry. I can take myself and just meet you back at the house,” he said.” In a whisper, he repeated his nephew's words, “I'll just meet you back at the house.”

Palliative care lends itself to fantasy, a continual search for an alternative sequence of events, explanations in the sky. I wondered if everyone around the table was seeing Xavier as I did in that moment, not as he was that morning, eyelashes matted together with tears, every cell in his body failed, but as a 13-year-old boy cut free from the drips and tubes rooted deep within the body, overjoyed to be unsupervised for a part of an afternoon, crumpled legs allowed to languidly hang weightless and waiting at the red lights, surrounded by pedestrians, relishing the hustle, the din of the city, constantly guiding his wheelchair through downtown Boston and back to his home in Jamaica Plain. For the first time in his life, Xavier taking himself home!

From across the table Dr. Vesel looked at me and smiled. In a strange way we knew it to be true. This little boy who loved the Celtics, who ever so softly moved pawns across the chess board with his finger tips, would again meet his family at home.