I met a young family who gave flesh to the most profound love. It was a brief encounter, but one that left a lasting impression. The father was an assistant store manager, the mother a student at a nearby university and their only child the most beautiful young girl of eleven. She had alabaster skin, a lovely head of long dark hair, and a slender frame of average height. But, extraordinarily, she’s never uttered a word.
Moreover, she’s never given a hint of recognition to her parents, having suffered dozens of seizures daily since she was two weeks old. The house is full of pictures—indoor settings, outdoor settings, and some from a recent vacation provided by Make-a-Wish. In each, she looks like any attractive child—though granted her expression is serious, for she cannot smile, or control any of her muscles; they remain entirely flaccid when not agitated by the recurring spasms.
And yet the affection she has received from her parents—daily, hourly—has been constant and deeply personal. She is a cherished daughter who is loved simply for being the very blessed fruit of their union. While there have been anguished tears and frantic cries over the years, as the reality set in concerning their daughter’s prognosis, it is evident that so did the grace of selflessness. The only distress now is not for themselves, who will never receive a warm hug or heartfelt thank you or hear a childlike giggle, but for their daughter’s future should they ever be unable to care for her.
For the foreseeable future, this lovely innocent will remain under their watchful eye, being fed regularly through a feeding port, having her arms and legs massaged attentively, hearing streams of loving conversation poured over her throughout the day and during her restless moments at night. Their initial bewilderment in the face of an extremely rare diagnosis has given way to firm advocacy and a medical plan that provides the best care possible. They love her—and that encompasses an oblation that few are called to live.
As the months turned to years and the family made peace with the unique gift entrusted to them, the mother shared that she eventually recognized that within their story lay a remarkable lesson. In those moments when loving words surround the child, and a gentle touch attends to her needs, and boundless affection encircles the one so unaware of it all, it became clear to her that so many of us are every bit as inattentive to our own Creator. Despite his providence and his infinite devotion for each treasured soul, how few turn to him in acknowledgement or gratitude. We are so unaware of his abiding love.
It was a single evening but a lasting brush with a sublime truth. Our priorities are often so far from where they should be and our yardstick for accomplishments usually too mundane. As we proceed in our pilgrimage toward God, we would do well to consider how our society ranks such love, such selflessness, and especially persons such as this child.
It would seem that we’re creeping perilously close to rationing care by inhuman standards, using those inadequate yardsticks instead of the constant demands of real charity. This child has transformed her parents, the family has provided an invaluable witness to their community and those who have the eyes to see stand witness to God’s ability to transform bewilderment and anguish into steadfast love and a window of understanding about ourselves. Ultimately, it reminds us to tread gently with creation, for God takes his abode in every child.
Copyright 2011 Genevieve Kineke