Restore Rhythm: Know Your Identity
As I was growing up, I was blessed to have the privilege of frequently being in proximity to people with special needs. My family served as volunteers for a local organization called Bethany Christian Services, and part of how that looked was we took care of a girl named Rocky. Rocky would come to stay at our house at various times throughout the years when I was a little girl, and we referred to her as our “foster sister”. Rocky had a family, but sometimes they needed a break from her care, and that was when my family stepped into the process.
Rocky had a special diet and drank a special formula, and she had reduced mental capacities. Rocky was three years older than me, but I understood a lot more about what was going on around me than Rocky did. Rocky was afflicted with a disease called Maple syrup urine disease (MSUD), which is a condition you inherit and are born with that prevents your body from breaking down the amino acids leucine, isoleucine and valine. Growing up, I didn’t know that label and had no clue about the science going on in her body, and I certainly didn’t know why she was the way that she was, but it didn’t matter, and I didn’t hesitate to let Rocky into my heart. She was precious, sweet, funny, and endearing: my best friend. She always made me happy, and she had a gift of making a quiet and shy little girl laugh. When I was ten, Rocky passed away unexpectedly as she developed the flu and couldn’t keep her special formula down. When she died that year and was suddenly no longer a part of my life, I had a really difficult time understanding why God took her to Heaven. Even now, every time I hear church bells, I am back in the church balcony on a Sunday morning when the organist shifted to bells on the settings, and Rocky stood up and yelled loudly, much to all of our embarrassment and amusement, “Where are them bells coming from!?” I still get the giggles every time I tell someone that story, even now, nearly forty years later.
I also grew up with an aunt who was named Marilyn; she was my dad’s younger sister. She had mental retardation and little to no speech. Her body was also physically affected, making getting around very difficult for her. She lived in a group home, and I vividly remember going there to visit her frequently with my family. The residents there were uninhibited; we still laugh about when my dad walked in and one of the males in his thirties said in a loud voice, “It’s a man, a real man!”
Every so often, my brother and I tell the story of crabby little elderly Anna sitting in the corner with her tightly crossed thin legs, the top one bouncing on the bottom, and her perpetually angry face as she skeptically watched ever-happy resident Jeffrey. Jeffrey was a big guy, and to a young girl like me, he looked like an adult. But the way he acted and talked sounded more like an excited four year old.
“Ho, ho, ho!” Jeffrey would burst out with enthusiasm and boundless joy every few minutes during one of our Christmas visits, growing louder on each “Ho”. You could see Anna’s agitation growing with each repeat of this refrain. Finally Anna had endured enough. “Face it,” she growled, “Santa isn’t coming!”
My brother, sister, and I watched this interaction, our heads darting back and forth from Jeffrey to Anna. At her cruel words, his face crumpled, and he broke into loud sobbing, and he ran loudly away to go to his bedroom and process this bad news, shared with him so unkindly by this sour resident.
This was the stuff of my childhood: we were literally immersed in situations with people who have labels. We didn’t know what the exact labels were - as Rebekah Lyons writes in her book, “Once you know someone, you no longer label them” (111). These bigger-than-life experiences of my childhood enable me to be comfortable talking to people with mental handicaps that I encounter at libraries or at the zoo who are out on a group outing, and I am thankful to my parents for teaching us by experience early on that people are people. We love them all and accept them for who God created them to be.
Do you let labels define people? Once you find out someone struggles with a diagnosis of any sort, do you look at them through a different lens? The chapter that Lyons wrote about this topic resonated with me and also pricked my conscience a little bit too. As a teacher, I know that I struggled with whether to read what previous teachers had written about my incoming students or to allow them to show me for themselves what their struggles and strengths were as I got to know them. Sometimes when we know someone has certain letters attached to their name, we forget that everyone’s essential identity rests in the fact that each one of us is a child of God. Hallelujah that we aren’t labeled by God with negative associations! Let us imitate Him in embracing one another and accepting that we are all flawed humans redeemed and loved by their Creator!