HuCAR T: 18 month follow-up- Living Jude’s Best Life.

Jude watches out the window as the plane gains speed for take-off.

“Beau! Beau!” he grabs his arm, “We are about to lift off!”

“I know, Jude, I have done this before,” Beau says tenderly, but he turns and smiles at me. I told Beau last night that Jude was going to be excited, and I encouraged him to roll with it. “He isn’t used to it like we are, bubba.”

“Mom, isn’t flying just the BEST?” Jude says as a statement, leaning back in his seat as soon as we are wheels up. I look over him and smile. I have grown to feeling nothing but put-out by the flight to Philly- being with Jude feels like a chance to experience it a new way.

“It IS the absolute best, Jude.” and I hand him the coveted Trolli gummies that he asked for in the airport terminal.

We get off the plane at gate E18.  We are a well-oiled machine. Bathroom break next to Chickie & Pete’s, out the terminal double-doors, request an Uber right after the vending machines, down the escalators, turn left for baggage claim, head right for the ride-share pick-up area. Wait under the lamp post labeled, Area 7.

Jude keeps-up with anticipation, the pace of our movement calling him to not dick around. He gets to be included, a seat at the adult table. He behaves flawlessly.

The Uber is playing Jazz music and Jude declares it his new favorite genre, “This is the BEST song I have ever heard!”

Wells Fargo Stadium, Citizens Park, Lincoln Financial Field, “Oh and that’s where the Eagles play.”

We like the Phillies, but not the Eagles. Yes, we are from Denver, but the Broncos aren’t really our team… It’s the same Uber conversation we have had 10 different times.

“I love the Eagles, they are the BEST team!” Jude says out of nowhere, never having liked the Eagles prior to this exact moment. Beaudin rolls his eyes. The Uber driver is thrilled.

My body aches as we pull off the freeway. 

Not here. Please, not again.

To the right, Penn’s landing. The restaurant where Selah and Jude chased each other down the ramp, visiting in the spring on 2021, and I wondered if they would ever be able to smile like that again if this didn’t work out. The bridge where Beau and Selah secured a lock, among a sea of others, and I burned into my memory their smiles, pleading, “God, let us come back here, alive. Don’t let this be the building of an altar to our son.”

Spring 20210- CAR T

But then we drive past the mural of the colorful flowers pouring out of the female silhouette on that one underpass and I feel sentimental. To the left, our favorite (and only?) inner city putt putt course. A entirely run-down course where I have distracted myself a dozen times while blood results returned, our future slowly crawling in to my email, while Beau putts, over and over and over, for a hole-in-one on the hole that is a replica of the Rocky steps. I see the cherry trees, weeks off from bloom, and recall their scent in April 2021, reminding me that life comes out of the dark depth of a cold winter and tries again.

The lady at the hotel check-in desk is more kind than any customer service person I’ve ever experience in Philly and it feels like a beautiful start.  The boys play chess while I get us checked-in.

We arrive to our hotel room and Jude runs to the bed, throwing himself on it, spread eagle. He turns over and stares at the decor in awe, “This is the BEST hotel I have ever been to in my entire life!”  And he is right. The rooms at the Hotel Monaco are decorated with vibrant prints and bright colors. The entertainment center a candy apple red, beast of a piece that feels straight out of Alice in Wonderland.

We decide to go to dinner at the neighborhood taqueria, Lucha Cartel. The boys order mandarin Jarritos and we decide on guacamole instead of queso. Jude orders fish tacos and Beau chooses the Al Pastor.

Jude’s eyes grow wide as he takes the first bite of his tacos.

 “How is it possible that today I’m having the BEST fish tacos of my life?” he inquires of the waiter, who isn’t sure if the question is rhetorical.

Jude gushes about the tacos after every single bite in a way that makes me laugh. Beau goes to the bathroom and returns making a  joke about his poop, “Welp, that tore through me.”  I immediately start the run down of questions about his bowel movement. Was it formed? Does his stomach hurt? Is he ok? 

“No, mom, I was making a joke!” He laughs.

“Oh, right, of course,” I exhale reminding myself that these days he is more ‘preteen boy’ than ‘cancer kid’ when it comes to potty talk.

We devour chocolate-filled churros and Jude says he is leaving $5 of his own money for a tip. I tell him I have enough to cover the tip. “No, I have to put my own money in to this, It’s the BEST meal I have ever had.”  I pay with a card and he hands the waiter his five-dollar bill anyway.

We decide we would walk home instead of taking an Uber. Philly isn’t generally a place I’d walk with the boys after dark, but it is only a handful of well-lit blocks and we are feeling alive and free. We walk past the Museum of the Revolution and then peer down an alley, searching for the source of lively Mardi Gras music. We talk about Fat Tuesday and what it means to give things up for Lent.

A construction crewman stops his jackhammer to let us pass without discomfort and I wonder if the people here have shifted towards kindness.

We arrive back to the hotel after 10pm and the Philly time warp begins. Leftover airport candy and hotel cable lulling us to sleep close to midnight. It’s not sustainable here, I am reminded. Jude is delighted by what feels like getting away with something, but Beau explains, “Nah, Jude, there just isn’t a bedtime in this city.”

Jude’s jaw falls open.

“Best life ever, huh Jude?” I laugh, his grin illuminated from the glow of the hotel tv.

“I’m never leaving Philly, like ever!” he replies and he is smiling so hard my heart aches.

Never miss a post, subscribe!

Read more posts on Jude:

Our Christmas Baby

Jude was born on December 25th and it seems we are forever trying to make-up for the short end of that stick. Of all the kids, why did our middle, who already has the greatest chip on his birth order…

Keep reading

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s