The summer of 2002 descended on Boston, warm and delicate, the heat feeling tentative and playful, quite unlike its oppressive August cousin. June is often my favorite month of the year, but this year still had much in the way of fear and doubt hanging up over it.
I was sitting next to Emma’s bed, holding her newly active six-month old body as she explored with hands and feet, tangled in tubes and perpetually setting off alarms. I was adept at deciphering their tones by now, knowing to reach up blindly with my right hand and finger the “silence” button, using instead my eyes and ears and slowly acquired experience as the father of a kid with tubes to know if she was actually in distress, or if she was simply manipulating wires into thinking thusly.
A nurse approached the bed.
“You should go outside,” she said.
“Are you kicking me out?” I joked, but I was a bit confused.
“Nope.” She pointed her finger around my little family. “YOU should go outside.”
Emma had never been outside walls of a hospital before. I panicked at the thought, giddy and terrified.
“Ok,” I squeaked.
Thus began a hunt for all of the many things needed to show this little kid a different view of the world. Portable crib. Oxygen tank. Portable suction macine. IV bags. Feeding pump, formula bags. Spare G-Tube. Cool mist. Trach collars. Spare trachs. Pulse oximeter. Emergency pager. A nurse with enough free time to accompany us. A doctor to sign us out. Blankets, and tissues, and gloves, and handwash. And diapers and all of the other things a baby needs.
It was a lot, and the first glimpse I had of what moving around in the real would with this baby would be like.
About two hours later, after Emma had a nap, we were ready to go. Wheeling that baby through the hospital, but not going to surgery, or tests, or something that would end up in more news one way or the other felt different. It felt so normal that it felt strange.
Outside the second floor of one of the buildings in Boston Children’s Hospital is a lovely courtyard garden. Walled in red brick, it’s a hidden oasis of green and trees and benches and short paths. Only about fifty feet on each side, it felt expansive and wondrous, and warm.
I looked at my child, ready to find the wonder and excitement of the outside on her face. Instead, I found her foot in her mouth.
To an infant, everything is going outside for the first time.
Instead, I wheeled over to a bench where I could sit next to the crib, and put my hand on her tiny head. I sat there for fifteen minutes or so, breathing in the warm, and the green, and telling Emma that the world had so many more colors in it, and so many more temperatures, and so many more things, and that it was her job to simply get better, and to go and see all of them.
Shortly, the nurse needed to get back to her other patients. We gathered the equipment, waved goodbye to the trees, and moved upward on currents of summer wind to her home.