In the Homestretch

Last month, I went with our oldest son to CHOP for one of several pre-op visits for his upcoming surgery--what will likely be the third-from-final in a laundry list of operations for the condition he was born with. 

 This will be one of the biggest--as Hayden's skull has grown, the bottom half of his face has not kept up and he is slowly losing his airway. As his surgeon was explaining the procedure--using interior metal bars to move everything forward and anchor his neck muscles to jaw/chin, his assistant was scrolling through sixteen-and-a-half years of clinical photos of our boy.

We all turned to the screen, momentarily mesmerized by the representation of time passing in the face of a bald, intubated baby, to a chubby-cheeked toddler, to a little boy with wild, blonde curls, a crooked, jack o'lantern of missing teeth, a shaved head, a mohawk, a scowl, pre-teen bravado, a smidge of sideburns and facial hair, to a grinning version of the handsome big kid beside me. Even the ever-serious Dr. Bartlett stopped talking and watched with a tiny smile.

These clinical photos against a uniform black background are for measuring symmetry and airway, for monitoring growth and the possibility of other complications developing, but somehow, they represent so much more. They reflect resilience and the tenacity of a baby who was once not supposed to make it to the end of the week, to a young man considering following in the footsteps of the doctors who have treated him. Here we are, spitting distance from the finish line, a handful of hurdles between us and graduating from the CHOP craniofacial program.

The thing that feels different this time? The journey on this is Hayden's. Before, his surgeries felt like ordeals for us, the parents, to endure. See us try to distract a baby writhing in pain with his beloved Lovey Tiger, to stop a toddler wigged from anesthesia from pulling out his IV, holding a little boy down for a catheter while he screams WHY ARE YOU LETTING THEM DO THIS TO ME?, sitting through the fifteenth viewing of Beethoven while a pulmonogist pounds his tiny back, standing with him in a crime-scene of a shower as we eke out two feet of bloody packing from his nose and sinuses. Now, as one of Hayden's more recent surgeons put it, J and I are relegated to the role of sherpas. It is our job to schlep his gear and cheer him on as he climbs the mountain of recovery, solo.

This time around, what can I do? I can sew symbols of strength and river stones into a weighted blanket for his recovery. I can brainstorm a month's worth of liquid recipes and make lists of distracting John Hughes/Quentin Tarantino movies to round out his pop culture education. We can coordinate, as we did today on another ride to the hospital for pre-op, about when he wants me and J with him afterwards, and when he wants his girlfriend and friends to come visit, and how he will communicate this.

Today, after his pre-op appointment, they called us in to look at computer renderings of the procedure, including a 3D model of what he will look like afterwards. I held it together until we were walking to another wing for bloodwork.

"Why are you teary?" he wanted to know. "I'm the one who has to go through this!"

"Honey, I wish I could do it for you."

"But why are you crying? I'm going to be fine."

"I know you are. It's just, that last face on the screen looked a little like someone else. And I love you."

I put my arm around him and squeeze. He's running a fever today, and a little achy so he shrugs me off.

"You looked all grown up. You looked like a... man."

"I'm ready, Mom. I've been ready for months."

I don't know if he means the surgery, or growing up.

Probably both.

Then he adds, smiling my favorite crooked smile and squeezing me back, "And I love you too, Mom."

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