Chyanne

I learned a lot about “real” from Adam through the stories shared by friends. But while looking through photos last week, I was reminded of an earlier lesson in that regard, from a girl named Chyanne.

In 2008, I spent six days at NYU Langone Medical Center with my daughter, Mindy, waiting for a seizure. Months earlier, she had experienced her first, followed by more over the coming months. She had complicated brain abnormalities, and it was a stressful time as we tried to get to the bottom of it. Her neurosurgeon eventually decided on surgery to alleviate the underlying issues, but before a final decision, he had to determine without question that her episodes were, in fact, seizures. Two weeks before her scheduled surgery she was admitted into the hospital, wired up to monitor brain activity, taken off her seizure medication, and we began a stressful waiting game.

Mindy had a roommate, though when we arrived the separation curtains were drawn, so I only caught glimpses of a girl, often moaning, and all alone. That night when the lights went out, the moaning became crying, often screaming, and lasted throughout the night. I pushed the nurse button a few times, but after a couple of visits which stopped the screaming only for the few moments the nurse was present, I stopped pushing. “What a nightmare.” I thought, but only for myself and Mindy (who actually slept peacefully through most of it). And, “Where are the heartless parents?” I wondered with judgment. The next morning, I complained and requested a room change. The nurse told me she’d work on it, and sadly, that was the norm.

The mother showed up that night. I said hello and introduced myself politely, but with some hesitation. In our limited small talk, I discovered that she was a single mom struggling to balance work with the attention and care for her daughter, who’d spent months in this hospital room with very serious, complex and seemingly unsolvable issues. I had already said hello to the girl earlier that day; and I had learned her name, Chyanne, from the tag on her bed, after realizing she couldn’t speak due to severe physical and cognitive disabilities. The interaction with her mom softened me somewhat, shifting judgment to sympathy.

When I turned off the lights that second night, the crying started again. This time, instead of pushing the button, I peeked through the curtain and calmly asked Chyanne what was the matter. She stopped on the spot, but started right back up again as soon as I turned back to my sleeping chair. Ugh! Was she scared of the dark, or of being alone? Missing her mom and lonely?

Knowing the nurses did not have the solution, and that I couldn’t stand another sleepless night, I opened the curtain and repositioned my chair between the two beds. Mindy was asleep already so I leaned over closer to Cheyenne and put my hand on her bed, pulling hers over next to mine so they touched and she could feel my presence near her. Amazing! The crying stopped, and we all slept. 

The next morning I left the curtains open. I told Mindy to show Chyanne the video game that she had been playing on the TV console over her bed. Mindy went over and hopped in bed next to Chyanne and turned on hers, laughing out loud at Chyanne’s squeals of excitement as she watched Mindy play. They watched shows together, with Mindy providing explanations and context, we all sang out loud, and they became fast friends. When the nurse came in on the third day to report that our new single room was ready, I told her she could give it to someone else. 

The seizure finally came several days later on the Saturday before Mothers Day. I had fallen asleep in the bed next to Mindy when she started shaking at around 2pm. It lasted 22 minutes. Chyanne’s mom was there, and comforted me as I was pushed out of the way by the crisis team, helpless and terrified as I looked on. But, while intense and draining, the timing enabled us to leave the hospital and be home with Doug and all the kids for Mother’s Day. I was exhausted, still traumatized, but very grateful, and fully empathetic, remembering that Kim and Chyanne would be passing the day together in the hospital.

In hindsight, I feel a bit yucky wondering how I ever could have been so inhumane as to not immediately connect and feel a loving energy towards this child in the next bed. I guess I was wrapped up in my own “noise” of worry, details I was juggling, the stress of being stuck in a hospital, etc. … But, thankfully, the abstract annoying noise from behind a curtain did become REAL, someone’s precious daughter, a sweet radiant girl, a sparkling friend, our joyful blessing, providing sunny distraction as we passed long hours – six days – waiting for a seizure.

Thank you Chyanne, wherever you are. 💜