Sunday, October 5, 2025

A Diabolical Twist of Love

 

"Is he okay," I hear someone in the crowd ask.

The crowd is thick, spilling from Grayson Stadium, seeking Banana players for autographs and pictures, or mulling around enjoying a beautiful night.

Sarah and Che are part of the crowd while I wait beside a flagpole.

The problem is I started off standing, but I've slid down into a sitting position, appearing sick, passed out or dead to some in the crowd.  

"There he is," I hear Sarah say, and I see her smiling face and bright glistening eyes coming quickly towards me.

Che's right behind her, loaded with an autographed baseball, gifts and pictures.  She's telling me I'm not going to believe who she saw!

They lift me up and guide me to the car, laughing about the night, and if sliding down the flagpole means anything to them, they don't mention it.

Two days later, it happens again.

Che's excited to attend the Fall Festival at the YMCA, so Sarah and I muster the energy to take her.

It's really a cool event for the kids, many dressed for Halloween, with face painting, food trucks, pumpkins, playgrounds and art.

Standing in line for Food Truck corn dogs, I feel my legs turn to rubber, and Sarah immediately puts her hand on my arm for support.

"Are you okay?" she asks.

"I need to sit," I mumble.  

"Can you make it to the car?

I nod, she gives me the keys, and I stumble the short way before collapsing in the passenger seat, frustrated as Hell this is happening twice now.

"Take a bite!" Sarah says, getting in the car, handing me a corn dog that I do not want.  

Back home I eat leftovers and we settle in for a nice quiet family afternoon.

Around 8 or so, I can't hold my head up anymore, am ready for bed, but I need to lotion Sarah's feet before collapsing into desperately needed sleep.

Rubbing Sarah's feet is the only tangibly way I can tell my wife I love her anymore, though I sometimes fall asleep in the midst of it. 

Getting out of bed a couple of hours after I got in, I count the four times I had to stumble to the bathroom. 

After making coffee, lighting a candle, finding a fireplace on a Beach on TV, and picking the right tunes, I sit on the sofa with Lainey and start to scroll.

I see "Electric scooter" and realize Sarah's shopping for me.  

I told her recently that I don't know how I can go Trick-and-Treating this year. Che loves Halloween and we've really done it up right the past few years, so Sarah's trying to figure out a way to make it happen one more time.

Strolling outside to wake and bake, there's a soft gentle rain washing everything clean and I stare for a long time into the darkness.

Back inside, I pour coffee and take my place beside Lainey on the sofa.

It's midnight.  

Sarah just went to sleep a bit ago.

The main reason I think I'm still here at all,  is because somehow, in a diabolical twist of love, both my wife and daughter are my full time caregivers.

There's no surviving without them, as day in and day out they watch me decline, and absorb it as normal in our lives so I don't feel bad.

We roll merrily along.

Except we're all running out.  

Sarah exhaustively plans for her and Che's future, while full time holding the present together, against impossible odds.  

I feel me holding them down, preventing them from so many things they'd rather be doing but can't, because they take care of me, without ceasing.

Sarah cheerfully picks up the long and growing list of things I can't do anymore, as I reflect on my diminishment.

I promised myself when I was first diagnosed that we'd never be surprised by death, and we haven't yet, in the most astonishing ways!

Now, I desperately want them to lay their burdens down, mostly me, and enjoy life, like the ways they make me absolutely enjoy life!

I hold my burden and look at it, reflecting on what's going to happen next.  

"It won't be long now," the Beatles joyfully sing through my earbuds, and I erupt in laughter, trying desperately to not wake the girls.  
                         *******

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

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