CAR T Day +10: Meemaw visit and swap home.

Before this Philly circus started Joshua said he thought I would need to tap out at two weeks but could probably eek out three. I found this offensive because obviously I could do ABSOLUTELY anything I needed to forever because I am strong, and capable, and I LOVE MY CHILD, damn it!

Well, sure as sunshine 2 weeks in, I found myself being slowly crushed the weight of it all. Joshua, was right.

Luckily, my realization that I could not in fact hold the cosmos of “relapsed cancer medical trial half way across the country” on top my own shoulders coincided with my mom coming to visit. And by coincided I mean to say that on day 15 she said she would love to come out and I said, “The time is now. Like ASAP. Sorry for the short notice and the exorbitant flight prices.” And she replied, because this is what moms do, “I’ll be there is two days, my flight arrives at 3:40pm.”

What a welcome break it was to have a new face at our apartment! We showed her all the sights and that means we took her for donuts at our favorite joint, Beiler’s, and watched 9 episodes of Beaudin’s new favorite, “Guy’s Grocery Games.”

We also found a Dick’s Sporting Goods across the river in New Jersey and ventured there for batting gloves. We picked up a wiffle ball set and enjoyed an afternoon game of baseball at a neighborhood park. It felt good to be in the sunshine. Beau ran the bases barefoot and changed the rules ad hoc to ensure someone was always cheering for him and he was always winning. When the nurse called later that afternoon and updated that his ANC was still only 320, I worried about the whole ‘barefoot in a park’ risk. But I resigned that the risk was worth the reward as later that afternoon Beau, who has not wanted to be off the couch in a week, begged to go play more at the green space outside out apartment. He enjoyed himself so much that he held my legs when I told him it was time to go home and begged, “Nooooooooo!”

Even with my mom there, I’ve felt in a funk about this whole thing. I feel like the idea of being away from home, divided up as a family for 6-weeks, is one thing to consider, but a whole other thing to actually live out. I found myself moving through the days with a sinking feeling in my stomach unable to think of anything but, “I just want to go home.” Not in a “my preference would be….” or “gosh, I’d prefer otherwise” way, but it a dark, gloomy cloud that covers the whole bright blue sky.

One day, under aforementioned gloom, playing putt putt at a city park, I saw this bloom. I took it’s picture. And for a split second it distracted me from the ominous cloud that is relapsed cancer. I felt thankful for it’s pretty blooms and for the bright blue sky that had brought them forth.

Yesterday Joshua and I swapped places, overlapping in the Philadelphia airport for less than two hours. Just enough time to drink coffee and enjoy avocado toast together. There is more to say about how a marriage does when you are allotted one airport date a month, but I’ll save that for another post. I was glad to see him, if only for 90 minutes in Terminal A❤️.

I arrived home yesterday and Selah hugged me tight and kept saying the sweetest, “Mama….” and hugging me again and again. It was delicious. She then wouldn’t nap, crying “I am glad you came back and I miss my daddy!” We FaceTimed daddy and Beau and when she had to say goodbye, she cried that she missed her daddy. FaceTime is weirdly confronting for her little self. She had a very hard time falling asleep that evening because of the big weepy tears that I would leave her again. Sweet girl, all the feels.

Jude is glad I am back and also rounded out the night by proclaiming, “I thought you’d be nicer than dad!” while slamming the door after asking if he could have dessert and being declined. That night in bed, with me, because one cannot have a break, he said casually, “three weeks isn’t even that long.” and then grabbed my arm to snuggle close. When I looked to release his grip and get into an actual position for sleep he said, “No mom, I want to feel you so close the whole night.” He fell asleep and I shimmied out of his arms onto the other side of the bed. At 5am, I woke to his arms around my neck and his face on mine, cheek to cheek. I wouldn’t be able to sleep like this, so I laid in bed for 30 minutes and breathed in how good it felt to be smothered by him.

So, yeah, being home is a welcome change of scenery, but I’d hesitate to call it a “break”. I sat outside in the early hours this morning and listened to the birds chirp their early morning cacophony. I am glad to be home, but it’s hard to feel at peace. Like we are midway through the war, there isn’t a true way to rest. And really, when does any of this end? That’s a question that looms based on some conversations I had with the doctors in Philly. It’s a post for another time, but let’s just say that the finish line here is very, very vague indeed.

However, like the blooms in Philly and the bird songs in my back yard, my eyes are open for reminders that behind this dark cloud, there is a bright shining sky.

This is the heavy wait of pediatric cancer.

3 thoughts on “CAR T Day +10: Meemaw visit and swap home.”

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