Every trip to a children’s hospital is an inspiring, and often, life-changing event, regardless of the reason for the visit. Whether you are a child going for treatment, touring the facilities on a school trip, a parent accompanying your sick child for treatment, or, as in my case, a professional making a referral visit to meet a young person in need of a foster home placement, it is impossible to leave this type of environment without an enhanced perspective of the world and your place in it.
I have made more of these visits than I can count. In my work, I get called upon frequently to assist in finding placement for kids who are in state custody and difficult to place. Beyond the stark supply-and-demand issues of overloaded social service systems with more kids needing homes than families willing and/or able to provide appropriate homes, the kids I get called about generally possess one of two significant characteristics that pose additional barriers to placement. They are either medically fragile, requiring a significant level of care and support to address medical or health-related issues, or they have substantial behavioral challenges and have promptly worn out their welcomes at a variety of placement types, including foster homes, residential facilities, psychiatric hospitals, and sometimes even juvenile correctional facilities.
I have learned more from these kids than I have ever read in any book or absorbed in any lecture, about them, about me, about life, and about humanity. One of the most important lessons I have learned is that all human beings are capable, worthy, positive creatures. Every last one. Regardless of the intensity and quantity of the challenges and difficulties a person experiences, every person has value and contributes to the collective fabric of us all. The young man I met on my most recent trip to the local children’s hospital illustrates this well.
For the sake of anonymity, let’s call him Henry.
Henry was a two-year-old little boy who had encountered a mountain of obstacles since his first day in this world. He was born at 24-weeks premature, a feat that, according to the Quint Boenker Preemie Survival Foundation, gave him just a 39% chance of survival. His lungs were underdeveloped, he experienced significant heart problems, and he endured a life-threatening brain bleed. Henry spent almost the entire first year of his life at the children’s hospital fighting for his life but eventually stabilized enough to be discharged to his mother’s care. Unfortunately, that was not the victory you and I might have hoped it would be for him.
I can only speculate that the overwhelming needs of Henry’s care, a drastic lack of support, information, and resources, combined with the debilitating consequences of drug addiction influenced his mother’s decision to take him home, place him in his bed, and do little-to-nothing with Henry for the next year of his life. Henry relied on a ventilator to compensate for his ineffective, still developing lungs and a continuous feeding pump to ensure he received proper nutrition to continue to strengthen and develop. Unfortunately, Henry’s feeding pump was not filled regularly while in the care of his mother, and he did not receive enough nutrients to sustain the hard-won progress he made in the first year of life, much less continue growth and development.
It is unclear how state officials were finally alerted to the neglect that Henry was experiencing or, more importantly, why it took almost a year for anyone to notice. By the time I met him, he had been readmitted to the children’s hospital weighing the same amount he had weighted at his discharge almost a year before and been taken into state custody. Henry was no stronger in any of the areas expected and had lost a significant amount of muscle tone in his malnourished little body. He is actually a pretty overwhelming sight to see. His tiny little body looks as if it belongs to an infant, not a two-year-old, but his head is robust and oddly shaped.
Henry’s head is substantially oversized. The nurse introducing me to him explained that his body was so invested in self-preservation that the sparse calories he obtained during his year of neglect were utilized for brain development while the rest of his body was unnourished and left to remain stagnate, even deteriorate in some ways. Additionally, the back of Henry’s oversized head was completely flat due to the excessive amount of time he spent lying on his back during such a crucial period in his physical development.
As I stood looking at Henry for the first time, two things struck me. The first, and least significant for our purposes here, was that, with his fair skin, freckles, and orange-red curls, Henry brought to my mind the idea of Tim Wise as a baby. I’m sure there is a significant opportunity to explore the irony of Wise’s powerful message of the debilitating influences of privilege on our society and Henry’s circumstances despite the privileges he possessed or because of the ones he lacked. However, that is analysis for another time.
The remarkable occurrence for me as I stood there watching this child connected to a multitude of life-sustaining machines, playing with the nursing aid working with him, was the undeniable life and vigor that radiated from him. He chased after brightly colored toys that the aid held over his head and smiled with a wide, sparsely toothed smile that made me smile right along with him. There was an undeniable drive present in Henry that made it unnecessary to ask the most reasonable question, “How in the world has he endured all of this?” Standing next to his hospital crib, it was clear that it was never a consideration for him to not endure. Henry met each obstacle with an admirable determination. He did not know any other way.
I listened as the nurse explained that Henry quickly learned that the machines connected to him to keep him alive were equipped with alarms that gave audible alerts when they were not functioning properly. So, when he was alone in his room and wanted some company, he would pop the hose off of his ventilator and patiently wait for a frantic nurse to come respond to the alarming system.
I watched as Henry’s respiratory therapist attempted to conduct his scheduled treatment. He would allow the therapist to position him in a certain position and then jerk and flail his little body around causing her to have to reposition him again. As the therapist fussed about this, he laughed a deep and hardy chuckle, very entertained by the interaction. Her affection for him was evident. His teasing and enjoyment of the teasing gave her significant joy as well.
While interacting with Henry, I noticed that he would often grab at his face, and I inquired with the nurse about this behavior. She explained that in addition to all the other aspects of Henry’s body that did not function properly, he was born with a condition that precluded his eyelids from operating as designed. As a result, his eyes closed when he moved around, and he was unable to open them on his own. To compensate, Henry figured out that he could grab the skin on his cheek and pull down to manually open his eyes and allow himself to see. As he gets older, the nurse informed, there is a corrective procedure that can be done to remedy this condition, but until he is old enough, Henry has reserved himself to enthusiastically improvising.
What a compact, larger-than-life testament to human drive, fortitude, and potential.
Henry’s story is one that can illuminate the difficulties of life that, to some degree, we all must face, but his story is also one that provides ample support for the idea that each person is valuable and has the potential for valuable contributions to our greater society. And he is not alone. Every day stories of children paint a picture of our possibilities. Each story provides an example of children who have either learned and implemented the best lessons from those around them or, maybe more likely the case, have relied on their innate abilities and instincts to be able to overcome the poor instructions and care provided by society to simply figure out the “right” way on their own.
No one taught Henry how to operate his eyes or to make the hospital staff smile. Similarly, there weren’t specific instructions provided to Jeremiah Anthony, an Iowa City West High student who set up and operates an anti-bullying Twitter account that provides compliments to students and promotes positivity at his school. The adults in Zach Sobiech’s life were likely ill equipped to instill in him in his short 18 years the wisdom and courage it took him to face a losing battle with cancer and create an uplifting musical YouTube contribution that will undoubtedly inspire and encourage every person who takes the time to watch it for the rest of time. And the members of the Phi Alpha Tau fraternity at Emerson College in Boston, Massachusetts who raised over $16,500 to cover the cost of top surgery for their transgendered fraternity brother were almost certainly not armed with ideas and information from society that lead to their valiant decision and action.
These kids and many others like them provide significant evidence that innate human potential is strong and good. Of course there are ample illustrations of the harm and destruction human beings are capable of, but, for the following two reasons, those are not the focus here: 1) we all have access to the nightly news for review of those examples, and 2) in each situation where people do harm, unlike the examples listed above, we can almost always trace back to influencing factors in the person’s environment including, but not limited to, abuse, neglect, trauma, indoctrination, and more.
Our focus, rather, needs to be on recognizing the raw potential that exists in each of us, most importantly, our children and in figuring out how to provide space to nurture, sustain, and develop this potential. Unfortunately, there is not a definitive answer to this, but there are important factors that experience in the social service system yields.
Individuals must be given the ability to develop who they are and not be forced to become who they are expected to be. Societal expectations regarding gender identity, race, religion, socioeconomic status, educational attainment, age, sexual orientation, ability, etc. all serve to stunt and often kill human potential. Additionally, educational and service systems must be structured to focus on person-centered services. Statistical analysis of thousands of data points from a standardized test question or a social services survey will not provide us with the insight we need to nurture and develop the true potential of the individuals we encounter. Only nurturing relationships will provide the knowledge and insight necessary to support people to the greatest magnitude of who they can potentially become. Our quantitative systems must figure out how to provide qualitative supports. We must ensure that basic needs are met and understand that basic needs are different for different individuals.
Henry and so many others like him force us to consider that the answers we need to the problems we’ve created are already here among us. We just have to figure out how to grow, develop, and avoid harming our most valuable resource: human potential.