I recall a child who came in with intractable dystonia. Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction can be one muscle or so severe as in this child’s case and affect her whole body to twist into an abnormal posture. Once, I was passing by and I saw the child’s mom sitting alone by her daughter’s bedside. She had such sadness in her eyes. I went up to her and asked her if she needed anything? She shook her head. I just gave her a Kleenex and kneeled down beside her. She started to cry. After a few minutes, she began to tell me about her beautiful daughter. Stories came and I could feel such love she had for her little one. She showed me pictures of her daughter when she had no dystonic twisting….just simply a happy girl, living a carefree life. I stared at these pictures and I stared at her lying twisted in her bed and I could feel the tears well up in my eyes. I think mom took notice and began to comfort me rather than me comforting her.
I couldn’t help but wonder if the little girl was in pain. I would imagine it would be very uncomfortable with muscles seizing constantly causing her to lie in these contorted configurations. I wished I could provide a cocktail of medications that would work on her. Medication after medication…it wasn’t working. I felt so sad for the mother who had to watch in helplessness. Many weeks later, I saw the mother again. This time, she was coming to the ICU for a visit because her daughter had recovered enough to be upstairs on the ward. I was both astonished and happy for her and the little girl. She let me know that her daughter was able to move again!! I said to her, “I didn’t want to tell you this at the time, but I really don’t know how you did it….being alone at the bedside week after week.” She replied with gentle eyes and a smile, “Faith kept me company.”