Someone Like Me

Nyana learned something wonderful today: the only thing better than having a hose for a nose, is having a friend who has a hose for a nose too.

Hoses for noses. All the cool kids are doing it.

Ella just celebrated her first birthday last week, and she and Nyana shared a wall in the NICU for the better part of four months. Both Nyana and Ella shared a very similar path through the nursery, too—both with chronic BPD and both with feeding tubes and extended hospital stays—so similar, in fact, that each had a different medical team following them to avoid any confusion; I learned today that Ella’s mum, Faye, has no clue who Dr. Awesome is.

I gave Don a much needed day to himself at home today and carted Nyana across town to have a playdate with Ella. I’m always apprehensive about taking Ny out on transit, though not for the obvious reasons you might think. We pack our hand sanitizer and we don’t let strangers touch us and we’re in the middle of a low-germ season, so I’m not paranoid about keeping her in a sterile bubble the way one might expect I should be. I get apprehensive about transit with Nyana because it’s a lot of people in not a lot of space, and let’s be honest, the people are often of a lower class who are often apt to stare, or speak without thinking. Taking Nyana anywhere on transit always elicits sideways glances and redundant—often ridiculous—questioning.

So I answered a handful of questions while we waited for the bus, and I smiled politely and made small talk with the woman across the aisle who gave an Awwww as she pouted and made sad eyes towards Nyana. We rolled through Chinatown and a dozen little old ladies eyed Nyana, looked over to me with wonder on their faces, and then back to Nyana, unsure of what to think and afraid to ask. On such an adventure, we bring all of the Misters with us, and our Cadillac of a stroller takes the space of three seats on the bus. It’s difficult to be nondescript when you’re rolling with Nyana. But this is us. This is our life. This is our not-normal normal.

We try really hard to do normal things as often as we can, though. We go on playdates with kids from my mom group, and we go on playdates with other kids from the NICU. We get Nyana out for walks around the neighbourhood and around the seawall, and just last weekend we were able to get her into the swimming pool for the first time, too. We do a really good job of trying to normalize our days, all things considering. But for all our efforts, we know that it’s just that: normalizing a situation that is anything but.

It was so refreshing, then, to arrive at Faye & Ella’s place today. Ella was lounging in a diaper, oxygen prongs in her nose and saturation monitor taped to her foot, her own Mr. Foodpump humming along quietly beside her. I got Mr. BiPAP plugged in and got Nyana settled; it wasn’t long before Ny and Ella were a tangle of wires and cords on the floor. While the girls explored each other’s tackle, Faye and I caught up and commiserated over everything we’d each been through in the past year. We talked without using layman’s terms, comparing notes and sharing anecdotes many mothers couldn’t dream of. We dished on home nurses and changed food lines and silenced alarms and none of it felt not-normal. For the first time since we’ve been discharged from the hospital, I was able to have an empathetic conversation with someone other than Don; a yeah, I totally understand that from someone who truly does totally understand. It was nice to be reminded that our not-normal normal is someone else’s normal, too.

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In other news, please allow me to extend HUGE congrats to Nurse Awesome and Hubby Awesome, who are expecting their first baby in February. I’m so happy and beyond excited for them.