It is our natural inclination, when facing life’s toughest questions, to feel the need for answers. The inability to understand “the why” can lead to discouragement, despondency and anger. Spending a night in your local emergency department brings one face to face with life’s unanswerable trials. Patient after patient, story upon story, tragedy piled on tragedy can chip away at your very soul. Vicarious trauma, burnout and moral distress define the symptoms experienced by those of us called to help people in need. The definitions are easy; the cure is elusive. My personal remedy, though, is faith, hope and love.
My first “patient” ever became my greatest teacher on these subjects. Sherita was born to a 13 year-old girl — Premature, apneic, an atrioventricular septal defect and Trisomy 21 (Down Syndrome) listed among her most serious diagnoses. Abandonment by her family sealed her fate as a “hopeless case”. Sherita represented the perfect “Why God?” scenario.
Nevertheless, Sherita was not caught up by this question — she was busy answering others. Can’t breathe? – give me a trach! Leaky heart? – patch me up! Can’t eat? – a G-tube is just fine! This little nugget was tenacious and, despite the odds, the only answer for her was life. Yes, she struggled and there were setbacks along the way but a larger than life personality emerged from around the tubes. Her silent laughter soon became the most infectious thing in the PICU. The hospital staff became her family and she became their child.
Sherita loved the attention she received but, I believe her primary hope was to know the love of a real family. She spent most days watching the world around her staring through the metal bars of her crib. Three long years watching patients and their families come and go without an end point for her. Medically, she was cleared for discharge; she just needed a mom and dad.
One day a hospital volunteer was introduced to Sherita – their bond became unbreakable. That volunteer, my mother, made a decision that day that forever changed my life – the decision to adopt her. Three months later Sherita joined our family. She was given the name Rudee Louise – a combination of the three people most important in saving her life. I was 15 years old and I trained with my parents on how to provide her complex care. I adored her and loved taking care of her. From suctioning her trach to feeding her through her g-tube, I found I had a knack for doing it. I also discovered that the least amount of love I directed towards Sherita resulted in a tenfold return. She thrived in our home! Her influence and love led me to pursue a career in healthcare. I missed her terribly when I headed off to nursing school but the welcome I got coming home was the best. She would flip out, sometimes collapsing to the ground, overcome with excitement. She never showed anger or held my leaving against me. She just picked up where we left off – unconditionally loving me!
My world was shattered and my faith was rocked in my junior year of college. My phone rang as I was walking out the door to class. I answered to hear my distraught father tell me Sherita had died in her sleep; she was eight years old. Initially devastated, I spiraled down into despair and then anger. Initially I demanded, “Why God?”, but eventually bitterness settled in when the answer didn’t come. I still believed in God but in a lukewarm, give me answers now, Sunday-only Christianity kind of way. Despite this, God filled my life with blessing including a wonderful wife, four beautiful children and great success at work.
Father’s Day 2004 (and nearly 14 years following Sherita’s death) the answer to my question started forming. Our pastor recognized all the fathers by having them stand. He then invited adoptive dads to stay standing. My oldest daughter was adopted so there I stood with a great sense of pride. He spoke of the blessing of orphan adoption and its parallel to spiritual adoption as children of God. My pride turned to conviction as the service continued. The testimony of my sister was foremost in my mind. My hardened heart cracked as I reflected on the love God allowed me to experience through Sherita. I suddenly understood how His love is manifested through others – even a simple, multiply handicapped, non-verbal gem like my sister. My anger towards God tarnished her value and I felt terrible for allowing this to continue for so many years.
A week later I asked my wife what she thought of adopting a child with Down Syndrome. Her reply, “I don’t think about adopting a child with Down Syndrome” but, my question planted a seed. She came to me the following week with a handful of pictures of children – all with Down Syndrome, all without families. One year later, we found ourselves halfway around the world bringing home our son Ivan, a seven year old boy with Down Syndrome. Ivan’s adoption led us back to his country to adopt Blair, a three year old boy with Down Syndrome. Albertine, a 10 year-old girl with cognitive disability and hearing impairment, followed from West Africa. Luke and Irina, four year olds with Down Syndrome, came home from Eastern Europe two years later. Sam, a five year old with Spina Bifida, followed 18 months later from the same orphanage. Maddie, a seven year old girl with Down Syndrome came home from another Eastern Europe orphanage 3 years later. Yul, an 11 year old boy with Down Syndrome from the Far East, joined our family two years ago; he is our 12th child. My sister’s legacy, is the physical salvation of my adopted special needs children – all who were throwaway “inmates”, “imbeciles” and “invalids” in their home countries yet transformed into beloved children in God’s economy.
…but back to the beginning and what this story’s relevance is to moral distress, vicarious trauma and burnout. First, keep the faith in what is unseen. We only view a portion of the whole story in any given circumstance — it is typically the worst part. Beauty does come from ashes, think of Oscar Schindler, Martin Luther King Jr. and Ryan White. Second, keep hope alive. Our minds naturally skew towards the negative. Pressing on, despite circumstances, builds the resiliency we need to do our important work. Third, love does conquer all. Love must be extended to the patients and families for whom we care. We can be the first spark that starts the process of healing. Also, we must extend love to each other. Basketball champion coach Phil Jackson sums it this way, “Love is the force that ignites the spirit and binds teams together.”