I knew how to be my disabled son's nurse, but I had to learn how to be his mum

Photo: Shutterstock
Photo: Shutterstock 

No one tells you how gummy the electrodes are on a heart monitor. It's the kind of detail that gets lost when you consider why the monitor is needed in the first place. But they are sticky and strong as leeches, and while they are meant for good, they do not give up easily. I watched my son squirm, a 10-week-old kid who'd never been outside his hospital room, and tried to be both swift and gentle when removing them.

I had volunteered for the job. The nurse could have done it. The respiratory therapist who had coached me on how to care for his fresh tracheotomy could have done it. Any of the supervising doctors could have untangled the wires and peeled back the probes. But I wanted this act to be mine. This would be the moment that he would cease to belong to the intensive care unit and come home to me.

Charlie didn't know he was a medically complicated infant. He didn't know that most babies go home with their parents when they are born and do not have to sleep in an incubator or wear nappies the size of a Kleenex or get a trach that looks like a cartoon bow tie. He was just happy to be there. But I wanted to be the one to show him that there was a whole world outside his sliding glass doors.

But I panicked as I swabbed the probes with alcohol to loosen their grip. I had waited all this time to start mothering him, but now that we were here, I felt wholly unprepared. I had all the tricks the team of specialists had shown me. I had learned to power up the suction machine that would whisk the goop out of his trach and into a canister that looked exactly like a milk jug full of snot. I knew how to replace the gauze around the hole in his neck and assess his color for lack of oxygen. I knew where to place the stethoscope against his back to listen for the telltale signs of "crackling" that signify pneumonia.

I knew how to be his nurse. I did not yet know how to be his mum. I liked the safety net the heart monitor provided. I liked that it could tell me in no uncertain terms how Charlie was doing. But that was all physical. Nothing could give me an emotional readout, and I was terrified I would miss the markers for his sadness or his fear or his love.

When the first of the three probes came free, one of the nurses clapped. It startled Charlie enough that he wailed. It was soundless, because that's the downside of a trach. It lets air whiz up and down the windpipe but not through the vocal cords. Because everyone else was watching the monitors, no one saw this but me. I finished prying the last two probes from his chest as quickly as I could and got him into my arms.

Once he was free, I didn't know what to do. Wires were still draped over my shoulder like a scarf. Everyone, including the doctors and nurses and my husband, stopped and waited for something to happen. I think we were expecting a crisis. That's how it goes in the NICU. I left the wires to dangle, a bundle of empty leashes. Then I took him to the long window opposite his crib and held him up to peek outside. We watched the wind blow a plastic bag across the parking lot until it caught in a tree. He'd never seen a tree before. It felt significant. Everything did.

Graham Greene once wrote that "a story has no beginning or end: arbitrarily one chooses the moment of experience from which to look back or from which to look ahead," but I would have to disagree. I think sometimes the moment chooses you. When I unhooked Charlie from the monitors, my life pivoted of its own accord. We were off the grid now, and my job was to keep him safe, but also to let him feel the ordinary magic of being a kid.

Jamie Sumner is the author of the memoir Unbound and the forthcoming middle-grade novel, Roll With It. She tweets at @jamiesumner_ 

The Washington Post