My First Father’s Day: June 17, 2018

contributed by Jon Krasnoff, dad to Thomas (8, living with PWS)

I don’t have any photos from my first Father’s Day.

My wife, Lisa, doesn’t either. I’m not sure why. Maybe we forgot. Maybe we were too tired. Maybe taking a photo would have required us to stop and acknowledge that we were home — but for how long? Our first trip home from the hospital hadn’t gone well. We were back in the NICU less than a week after being discharged.

A few days before Father’s Day, I was standing at Thomas’s NICU room when he raised his arm and grabbed my finger. His grip — for a baby who had spent weeks barely moving — was harder than I expected. I wanted that squeeze to mean something. I wanted it to be dad, I’m going to be okay. But he was a baby. And I knew enough by then to know it wasn’t a sign. It was just a hand around a finger. It was just Thomas, being Thomas.

When Father’s Day came, we were home. I say that like it’s simple, but it wasn’t. “Home” meant Lisa and I were sleeping on the pull-out couch. We had rearranged everything to make space for Thomas, for his equipment, for the rhythms of feeding and monitoring that had replaced whatever our old life looked like. The Ronald McDonald House had been our address for weeks — a kind, exhausted in-between place where families like ours lived while our children lived in a hospital. Now we were out. We were home.

That was the feeling of my first Father’s Day: relief. Not joy, exactly. Not the warm, full, Instagram-caption version of fatherhood. Just relief. Thomas’ room was too far down the hall from our beds so Lisa and I decided to sleep on the pull-out couch to tend to him if the dreaded pulseox went off. And that was enough. That was everything.

We didn’t have the PWS diagnosis yet — that would be about eight weeks later over the Fourth of July weekend. We were first-time parents with a medically complex child, just starting to hear the words Prader-Willi syndrome spoken in the same sentence as Thomas’s name. Our doctors had already told us they didn’t think that’s what he had. Lisa, being the astute mother she is, had asked them directly: Does my son have Prader-Willi syndrome?

“No,” the doctor said. “I don’t believe he does.”

The doctor was wrong. I don’t hold it against him for saying that, but we received the final diagnosis eight weeks later. 

Nobody tells you that early fatherhood with a medically complex child looks like this. The books don’t cover it. The cards at the drugstore don’t mention it. There’s no Hallmark version of your first Father’s Day where you didn’t take any photos because you were just trying to get through the day.

But I think about that finger squeeze a lot. Not as a sign I misread, but as the truest thing I knew about Thomas then: that he was here, that he was fighting, and that he had no idea yet what any of it meant. Neither did I. We were figuring it out together.

That’s still what being his dad feels like. We’re still figuring it out together.

And I wouldn’t trade it for anything — pull-out couch and all.