~ Anonymous
***
It is six in the evening. The predictable darkness of the night has just descended over our small riverside community of Santa Clotilde. Meanwhile, electricity’s arrival is announced by the eagerly anticipated ignition of the pueblo’s untiring generator. In an instant darkness is overcome by flocks of fluorescent light bulbs peppering the nocturnal landscape and shepherding people among the town’s precarious streets and walkways. The heat of the day is replaced with a cool, though sometimes muggy, cloak of relief. And the silence of the jungle is drowned out by the sounds of an invisible but perceivable electrical current made known in the lively, monotonous cumbia beat blasting from speakers near and far. As I take in my predictable and familiar surroundings, my evening stroll is soon interrupted by an unpredictable sound. Walking by the hospital, a mother’s cry dawns on my ears.
I enter the hospital and one quick glance from the nurse confirms the direction in which the grieving mother stoops over the still body of her child. My initial response is one of fear and doubt. Do I go to her? Will I quickly share my condolences with her and then leave her to grieve? Or do I mourn alongside her? I won’t know the right words to say…the right gestures to make. What if I make things worse for her? How can I possibly help at a time like this? Distracted by these thoughts flowing in and out of my mind, one look at the mother is sufficient to momentarily wipe away all my fear and doubt- my resolute feet begin to slowly move my hesitant mind and body forward.
Her daughter was ten months old. She suffered from the rare genetic disorder, Trisomy 18, more commonly known as Edward’s Syndrome. In their natural course, about 30% of these pregnancies will result in live birth and only 5-10% of children will survive beyond one year of age. Most children will have multiple bodily defects and health issues ranging from a small face and jaw, failure to grow, and debilitating heart problems. Taking these stark statistics and difficult realities into consideration, upwards of 75% of the lives of unborn children affected by Trisomy 18 worldwide will be electively terminated during pregnancy.
As her healthcare providers, we are aware of these statistics and these heartbreaking realities. Whenever the mother entered the hospital with her daughter in her arms, this child’s grim prognosis was always on the forefront of our minds. Our habitual response was a well-meaning act of concern, often centered on a carefully calculated reality that we ourselves could not fully understand. Her response was different- that of a mother to her beloved child- centered on the selfless love and sacrifice innate to their mother-daughter bond, a reality that only she knew and understood. That night of her child’s death, she shared with me a glimpse into that reality. It was only through sitting with her and placing my hand on her back that I could feel her pain. It was only through listening to her cries of sorrow that I could hear her suffering. It was only through watching her clothe her child one last time in the most beautiful dress and mismatched socks she found in her bag that I could see her love. It was only through prayer that our hope in this child’s new beginning could be truly known.
I am reminded of all of the people with whom this mother and daughter crossed paths during their short but impactful nineteen-month earthly journey together. A journey that started with a physically inseparable bond only visible to the outside world in the form of a mother’s growing stomach. A journey that took them from Santa Clotilde to Lima for a life-saving plastic surgery so the child could eat normally. A journey that brought them back home to Santa Clotilde where I was blessed to walk alongside them as the child’s earthly pilgrimage came to an end. A journey so unique and so difficult that I will never fully understand its depth and breadth of joy, pain, and sacrifice.
In the end, I am compelled to accept this mother’s witness to truth which was never void of love and her witness to love which was never void of truth: that this child’s life was worth living, and that this mother’s will made her child’s living possible. In her carefully-tended garden of acceptance, the fruits of truth and love bloomed unhindered. And as I walk back home from the hospital, a great and natural luminescence more powerful than any fluorescent light bulb invented by man makes its presence known. The moon in all its splendor slowly rises upward, casting its reflection on the vastness of the Napo River. I am reminded that no amount of darkness can put out the light.
“Do not accept anything as the truth if it lacks love. And do not accept anything as love which lacks truth. One without the other becomes a destructive lie.”
I enter the hospital and one quick glance from the nurse confirms the direction in which the grieving mother stoops over the still body of her child. My initial response is one of fear and doubt. Do I go to her? Will I quickly share my condolences with her and then leave her to grieve? Or do I mourn alongside her? I won’t know the right words to say…the right gestures to make. What if I make things worse for her? How can I possibly help at a time like this? Distracted by these thoughts flowing in and out of my mind, one look at the mother is sufficient to momentarily wipe away all my fear and doubt- my resolute feet begin to slowly move my hesitant mind and body forward.
Her daughter was ten months old. She suffered from the rare genetic disorder, Trisomy 18, more commonly known as Edward’s Syndrome. In their natural course, about 30% of these pregnancies will result in live birth and only 5-10% of children will survive beyond one year of age. Most children will have multiple bodily defects and health issues ranging from a small face and jaw, failure to grow, and debilitating heart problems. Taking these stark statistics and difficult realities into consideration, upwards of 75% of the lives of unborn children affected by Trisomy 18 worldwide will be electively terminated during pregnancy.
As her healthcare providers, we are aware of these statistics and these heartbreaking realities. Whenever the mother entered the hospital with her daughter in her arms, this child’s grim prognosis was always on the forefront of our minds. Our habitual response was a well-meaning act of concern, often centered on a carefully calculated reality that we ourselves could not fully understand. Her response was different- that of a mother to her beloved child- centered on the selfless love and sacrifice innate to their mother-daughter bond, a reality that only she knew and understood. That night of her child’s death, she shared with me a glimpse into that reality. It was only through sitting with her and placing my hand on her back that I could feel her pain. It was only through listening to her cries of sorrow that I could hear her suffering. It was only through watching her clothe her child one last time in the most beautiful dress and mismatched socks she found in her bag that I could see her love. It was only through prayer that our hope in this child’s new beginning could be truly known.
I am reminded of all of the people with whom this mother and daughter crossed paths during their short but impactful nineteen-month earthly journey together. A journey that started with a physically inseparable bond only visible to the outside world in the form of a mother’s growing stomach. A journey that took them from Santa Clotilde to Lima for a life-saving plastic surgery so the child could eat normally. A journey that brought them back home to Santa Clotilde where I was blessed to walk alongside them as the child’s earthly pilgrimage came to an end. A journey so unique and so difficult that I will never fully understand its depth and breadth of joy, pain, and sacrifice.
In the end, I am compelled to accept this mother’s witness to truth which was never void of love and her witness to love which was never void of truth: that this child’s life was worth living, and that this mother’s will made her child’s living possible. In her carefully-tended garden of acceptance, the fruits of truth and love bloomed unhindered. And as I walk back home from the hospital, a great and natural luminescence more powerful than any fluorescent light bulb invented by man makes its presence known. The moon in all its splendor slowly rises upward, casting its reflection on the vastness of the Napo River. I am reminded that no amount of darkness can put out the light.
“Do not accept anything as the truth if it lacks love. And do not accept anything as love which lacks truth. One without the other becomes a destructive lie.”
~ St. Teresa Benedicta of the Cross (Edith Stein)
Hardly a week goes by without seeing his smiling face. Some weeks I see him getting his blood pressure measured as he awaits his monthly office visit. Other weeks I see him walking around town running errands at the local shops and outdoor market. Every once in a while I find him playing ball with the kids or quietly strolling down the street enjoying his own company. Most Sundays I see him at Mass joyfully singing and playing the tambourine in the church choir. Occasionally he can be seen dressed in his altar server robe as he helps bring the real presence of the Word of God to his community in the form of unleavened bread. And in all of these occasions he is seen with a never-fading smile. Only once recently did I witness the absence of a smile on his face when he was hospitalized for treatment of viral pericarditis, acute inflammation around his heart. But not even an acute hospital stay could extinguish the fire that is his joy.
Just as his genetics are visibly different, so too are his joy and love of life even more noticeably distinct. Though his human body lacks certain faculties, his being is whole. In his physicality, he experiences human pain and suffering as he sits in his hospital bed with the terrible cough that has kept him up all night. In his psychological expression, he shares his love in the gentle embrace of a hug whenever we cross paths and brings joy to others with his almost-permanent and infectious smile. In his social reach he relies on others for many functions of daily living, but others also depend on him. In his spirituality, he bears witness to the simplicity and universality of reasoned faith and the potentially dangerous complexity and egocentrism of a faithless pursuit of knowledge. And in his whole person one sees more clearly the soul within his body, a body less tainted by false or superficial appearances and less bound by fleeting worldly attachments.
His name in Spanish means “anointed.” Though some may merely see a man with Down Syndrome, I have come to see a person chosen and set apart for a specific purpose. And as I recall him sitting next to me at Mass this past Sunday, looking at me with his joyful smile, and singing at the top of his lungs uttering words I could not fully comprehend, I am grateful for the fearless love that brought him into this world. Witnessing the fruits of this man’s words and actions in me and in others, I am compelled to accept the truth: God has a purpose for his life.
Though life can be busy here in the jungle, I am very grateful for the opportunities outside of hospital work in which I have been invited to participate.
Just as his genetics are visibly different, so too are his joy and love of life even more noticeably distinct. Though his human body lacks certain faculties, his being is whole. In his physicality, he experiences human pain and suffering as he sits in his hospital bed with the terrible cough that has kept him up all night. In his psychological expression, he shares his love in the gentle embrace of a hug whenever we cross paths and brings joy to others with his almost-permanent and infectious smile. In his social reach he relies on others for many functions of daily living, but others also depend on him. In his spirituality, he bears witness to the simplicity and universality of reasoned faith and the potentially dangerous complexity and egocentrism of a faithless pursuit of knowledge. And in his whole person one sees more clearly the soul within his body, a body less tainted by false or superficial appearances and less bound by fleeting worldly attachments.
His name in Spanish means “anointed.” Though some may merely see a man with Down Syndrome, I have come to see a person chosen and set apart for a specific purpose. And as I recall him sitting next to me at Mass this past Sunday, looking at me with his joyful smile, and singing at the top of his lungs uttering words I could not fully comprehend, I am grateful for the fearless love that brought him into this world. Witnessing the fruits of this man’s words and actions in me and in others, I am compelled to accept the truth: God has a purpose for his life.
“There is no fear in love, but perfect love drives out fear…”
~ 1 John 4:18
***
Always enjoy reading your blog. Thanks so much for sharing!
ReplyDeleteDear Zach,
ReplyDeleteAs a fellow mission doctor albeit only for a one month mission, I loved reading your reflection. Unlike most physicians your writing is so poetic and moving. I pray for your health and happiness in Peru.
Much admiration,
Greg Shay. Gfshay@comcast.net
Thank you for speaking to the truth of God’s love for those you serve. This is a reminder that “all things work for good to those who love the Lord and are called according to His purpose “. Roman’s 8:28
ReplyDeleteGreat pictures! Neat to see all the ways God is using you!
ReplyDeleteLovely words Zach! You are a blessing .
ReplyDelete