A lifetime ago, I used to volunteer at a medical facility for profoundly physically and mentally disabled children. It was a kind of half-way house between a hospital and a home. Every resident child had extreme medical needs and could not live at home for one reason or another. Some had been abandoned to the state. At the time I was seeking to go on a mission to work with disabled children overseas.
Most of the kids at this facility had what was then termed as “profound” mental disabilities, but all of them had severe to profound physical disabilities. Disabilities that are so incredibly hard to imagine. Medical anomalies that we tend to think happen somewhere else in the world, but here they were all in one place, under one roof. I cannot imagine anyone walking away after a visit there without a shredded heart.
Every resident had to live in a medical facility like this just to stay alive and receive medical care they needed either constantly, or at the drop of a hat. It was a sacred bubble of physical therapy and medicine around the clock. Volunteers like us came in and helped work with the kids, especially for physical therapy, but also for social interaction.
For some, no social interaction was possible. I remember one girl who had been unconscious and on a respirator since near birth. All the patients needed their muscles worked with and we helped with this, even for the unconscious patients. When I saw her birthday, it was like someone walked over my grave. She was my age and we had been born within weeks of each other. I couldn’t help but spend time talking to her as I worked with her hands and feet. About life, about school, about things I didn’t know if she could hear, but knew she had never seen. How did her lot end up so different than mine? She was unconscious all her life. And I was studying theology and music in college. The experiences of this place challenged a lot of my reality, even some of my spiritual beliefs. Awakenings I’ll never forget.
There was this small special group of kids though, with amazing physical limitations, who had no intellectual handicaps at all. A tiny bubble of 4 kids in a world they could not mentally or psychologically fit into, only physically relate to.
There was Sergio (who preferred to be called Sarge) who was paralyzed from the neck down and could eat with a fork just using his tongue. There was the preteen girl who loved Michael Jackson and the Backstreet Boys. She was also partially paralyzed and had a chronic condition that put her organs at risk. There was a Brian whose condition I never really knew, but it caused him to need a feeding tube and permanent IV.
One of the boys I worked with at this facility had a rare genetic disorder that caused his body to literally attack his own skin and bones. Though he was born with 10 fingers and toes, by the time I met 13 yr old Brandon, he only had part of one digit left. Which he used to master Nintendo quite handily. Drawing too. Amazing. Brandon was a genius trapped in a body that would not likely live to adulthood. To slow down the process, the medical staff had to keep his skin oiled and medicated. Unfortunately, his mother had also abandoned him to the State. What he had was not contagious, still so many people were afraid to be around him. His flesh was in a constant state of agitation and peeling. It was heart-breaking and scary. And he was a cute kid with a great sense of humor. I was one of the few who would not only touch him, hold what was left of his hand, but hug him.
One of the days I came, something was wrong and Brandon was in a lot of pain. The staff were rushing around to treat. I didn’t understand what was wrong, but he was crying, in distress and so scared. As staff barked orders at each other, they let me stay by his side and my ride stood at the bedroom door by Brandon’s roommate. Looking back, I don’t know why, but whatever happened, because I still don’t really know what, I guess my presence wasn’t a problem. The poor kid screamed and cried. I held his hand and stroked his head, talking to him softly, calling his focus to me. He was still scared and crying, but he calmed and let the nurses work. I think it was around an hour that I held that intense space. Brandon was falling asleep when I left. I was exhausted too. It was in the parking lot that my ride then told me, “You are the most powerful person I have ever met. That was amazing.” And I burst into tears.
It was that day that I realized I could not do the kind of work those nurses did as a career, to feed myself and my family, to make ends meet. They were like stone with Brandon that day and I think they had to be. They had to do their job and they didn’t have time to cry and have a breakdown. And whatever was going on, they had to work fast. And Brandon didn’t really have a mom, so I was able to be there and hold his hand instead. They were a small group of staff with an entire facility of children to care for. They couldn’t afford to become too attached. Every “bedroom” door in that facility had a symbol on the door letting everyone know how far they were allowed to go to save the life of the children inside. Green light: do everything you can. Yellow light was a moderate level. Red light – do not save them, let them go. It was a reality for every volunteer that a child you worked with today might not be there next week. It was an everyday, all day reality for the staff. Thank God for the people who can be and do all of that. I realized that as a volunteer was the place I needed to stay. I could remain soft-hearted that way, without the jeopardy I would surely cause as a professional crying every day. And I could fill in the gap when needed. I never wanted to lose my squishy little heart or my ability to cry for another.
Remembering these things. Another lifetime ago. It’s good to remember. Lessons whispering from the past as new ones form today.
I didn’t end up going over seas for that mission. It was probably a good thing, as much as it was a disappointment, as by the end of my college career, I ended up facing my own battle for health. Eighteen years later, I don’t know where the kids I worked with are, or how they fare. But their stories gave me a whole new insight into what can be in this world, even in the face of extremes. Those lessons learned and smiles shared will never be forgotten.