Home » Health & Wellness » Sarcoidosis » The Joy of Play: Children Living with Sarcoidosis

The Joy of Play: Children Living with Sarcoidosis

© Lou Robinson

I had not thought much about children with sarcoidosis until last year, when I worked briefly with a little girl in an outpatient clinic of a hospital. I am always taken aback when I see the diagnosis of sarcoidosis. I immediately turn to my own experience and wonder how closely theirs is to mine. There is always a response of sadness for anyone who has experienced the pain and the pathological fatigue that leaves one limp.

When I first saw her, I immediately thought about JRA (juvenile rheumatoid arthritis). She had the chubby cheeks that accompany steroid treatment, and the knock-kneed walk of one with joint limitations. Her arms swung almost imperceptibly at her side, bending slightly outward at the elbows. I thought, how fragile she must be. This brave trooper was about nine years old and looked six. She had already endured multiple surgeries on her elbows and knees.

When she got closer, I saw that her dark eyes shone as her chubby cheeks gave way to a broad smile that pulled up the corners of her lips. Her fingers were tiny, and obviously misaligned at the large knuckles from the disease process.

Once the introductions were past, she went immediately to work on her tasks, as instructed. Her enthusiasm surprised me. I was still thinking about how sad this was. She was, on the other hand, doing what all children do, delighting in the joy of play. Her "play" session had been structured into a series of enjoyable games and challenges that would maximize her abilities to function in her daily life tasks, and help minimize pain and deformity of her joints that resulted from the disease process. While parts of her body were fragile, her spirit was robust.

Play is the work of children. While we adults are alternately bewildered and bemused by their curiosity, mischief, and relentless determination, close observation informs us that what they do is indeed work. One need only observe the smile that accompanies the repeated efforts put forth to hoist little wobbly hips onto wobbly hands and knees, just for the joy of crawling. Or, remember how many times the diaper-clad bottom met the floor before unsteady foot movements turned into walking. That innate desire to explore and master the environment is what drives children to work so hard. That drive is as strong in children living with sarcoidosis or any other medical condition or disability.

The copyright of the article The Joy of Play: Children Living with Sarcoidosis in Sarcoidosis is owned by Lou Robinson. Permission to republish The Joy of Play: Children Living with Sarcoidosis in print or online must be granted by the author in writing.