Seized by Beauty

“The beautiful stops the viewer in his tracks and then plants within him a desire to speak to others of what he has seen.”

~ Hans Urs von Balthasar

Her infant child’s head appears larger than the rest of her body, her torso and extremities overshadowed by her abnormally fluid-filled brain. She suffers from hydrocephalus, a disease in which excess fluid builds up in the brain, eventually leading to long-term brain damage or death if left untreated. She fights for air as her weakened windpipe collapses with every breath, a result of a condition known as tracheomalacia. The medical terms and physiologic mechanisms of her illness run through our minds as we move back and forth to examine her, write orders, and coordinate her care. Passers-by look at her child with curiosity and confusion as they go on with their lives. Around the patient is a flood of commotion, movement in all directions. Meanwhile her mother, fixed on her precious daughter, never leaves her child’s bedside. Her child’s physical affliction is palpable in her mother’s emotional suffering and all-encompassing sacrifice. Her first-time mother is young, her age and limited life experience made almost unrecognizable by the immense love and compassion for her dying child. Her child lies in a clean, carefully-selected pink dress. Her skin shines clear without any wounds or uncleaned grime. Her plump cheeks and chubby arms and thighs reflect her more-than-adequate nutrition. Her outstretched arms and pleading cry which can only be soothed with her mother’s embrace are a testament to their secure, intimate bond.

***

She sits patiently in her wheelchair by her dying mother’s bedside. Wheelchair-bound her entire life, she suffers from a form of muscular dystrophy, a disease in which the muscles break down and become nonfunctional over time. She recounts the many years her mother cared for her in her disability- feeding, bathing, dressing, listening. Her mother’s sacrifice in caring for her daughter is reflected in her daughter’s current unwavering devotion to her mother. Her mother has suffered a severe stroke and lies in our hospital in a semi-comatose state known as unresponsive wakefulness syndrome. She receives physical nourishment in the form of essential food and water through a feeding tube. Though her daughter is unable to feed, bathe, or dress her mother, she gifts her mother her untiring presence, emotional sustenance for a difficult journey. Her friends and family from her neighborhood respond with fervent prayer, remembering her as their spiritual matriarch. All of them recount how she instructed them in faith and taught them how to pray. Her memory and presence is carried from house to house for an entire month as the neighborhood gathers to pray the Rosary and provide her and her family the spiritual nourishment they need to get through this difficult time.

***

A couple of months have passed since the baby with untreated hydrocephalus was discharged from the hospital. I learn she recently passed away. We lament her death, especially from a disease that is often manageable in more developed nations with survival into adulthood. And as I think back to that special encounter, I am transformed by her mother’s witness. Though her child suffered from a severe, life-limiting disability, she was one of the most treasured and cared-for children I have had the privilege to meet during my time here in Santa Clotilde. This mother reminded everyone who crossed her path of her child’s inherent dignity, defined by who she was and not what she was able to do.

***

Three months have gone by and her mother remains in an unresponsive wakefulness state. None of us expected her to live this long, partly due to the severity of her illness and partly due to the lack of resources available to us at our hospital. She, too, is surrounded by unceasing movement day after day- nurses and physicians come in and out of her room for examinations and treatments, custodial staff maintain a clean, safe living environment, patients admitted and then discharged walk by her room not knowing who lies behind those doors. One thing, however, remains constant. Her daughter spends all of her days accompanying her mother, only taking breaks to bathe, eat lunch, visit the Virgin Mary outside the hospital, and attend Sunday Mass. Her devotion to her mother and her Creator once again causes me to pause amidst the daily motion. Despite her own suffering and self-limiting physical disability she finds the joy and strength to be present to her mother in her affliction. She, too, reminds everyone of her mother’s inherent dignity, defined by who she is and not what she is able to do.

With the beautiful witness of these courageous, compassionate, faithful, and selfless women we are compelled to see the Truth. And seized by its beauty, we are propelled forward to share this gift with a world so often stifled from its presence in our daily lives.

“Having been seized by the beauty of revelation, our only proper response is a change of life and a commitment to become a missionary on behalf of what we have seen.”

~ Bishop Robert Barron

Flower Photo: The flower “Queen of the Night” only blooms once per year and only for one evening; I had the rare opportunity to see it!; Top 3: Marian devotion every day during the month of May where each household receives the Virgin Mary and prays the Rosary; the last day we received the neighborhood in our home; Middle Left: Annual youth retreat in Santa Clotilde; Middle Right: Peru (national), Loreto (department), and Napo (district) flags are raised in the central plaza on Peru’s Independence Day, July 28th; Bottom: Traditional stilted houses that withstand the cyclical rise and fall of water here in the Amazon jungle.