My legacy of Tee shirts

 

"Dad said I can have all of his tee shirts when he dies," Che reminds Sarah and me "but Cassidy steals one every time she visits and that's not right!!"

"No," we both answer at the same time, but don't say anything else.  

"She's already got a bunch and she can't have anymore," Che emphatically concludes!

Shaking our heads, Sarah and I lock eyes, stifle a laugh and the two leave to take Lainey for a walk.  

Collapsing on the sofa, I wonder how long my tee shirts will last with the girls? It delights me to imagine them still wearing them years from now, and I smile. 

The time's come when I'm very aware it's all coming to an end, and am still determined to squeeze every ounce of living out of my dying, in real time.  

Most seem to do it the other way, focusing on dying at the expense of living in the moment. 

Sarah tells me she thought I only died twice last night. In both instances, I stopped breathing so she sleepily yet worried like Hell, sits up to watch me, and after prolonged pauses, I inhale again. 

"Only two?" I ask. 

And Sarah laughs enticing me to join her.  

"It's a great day to not die!" we conclude.  

While they're still walking Lainey, I reflect on the only legacy I'll leave when I die. 

A windowed single Mom and an 8 year old daughter. 

There comes a time when you feel like you're holding them back, and it's better to move on, so that they can move on.

I feel these things deeply.  

Our world has become tiny, consumed entirely with caregiving from Sarah and Che.  Things like work, a social life, eating (together, or at all), hosting playdates are now big challenges.  

Sarah and I remain focused on Che maintaining a happy little girl's normalcy, as we truly delight in each other, spending our days locked inside our bubble. 

When visitors come, it normally wrecks us, throwing off the sacred routines that've gotten us this far, I usually end up sick afterwards and the girls time and energy that we don't have.  

Besides, it's frustratingly hard to squeeze a year, not to mention all of the emotions,  into an hour visit, that sometimes leads to depressing thoughts, so we're very guarded. We're also anticipating what's next.  

If I ever go back to the Hospital, I'm Door Dashing the whole stay!

Hospital  food is the most expensive ever, and you'd think it would be good for how much we pay for it but, of all the times I've been served, either breakfast right before lunch or dinner at 4 pm, I don't remember a single damn meal. I'm never doing that again. 

Mostly, we live in the moment, as best we can. 

I celebrate what I've got as I've got it because that's all I really have now.  

Every day I wake up, I recognize it as the gift it is! 

And every single gift is different. 

They'll never be another like it. 

We're so thankful, we have another today.  

                            *******

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

Our Divine Conedy

 

It only took 5 1/2 years of pancreatic cancer, then prostrate cancer, to get me ordained as a Bishop. 

It makes no sense whatsoever! 

Another part of our Divine Comedy.  

Since my diagnosis in 2020, we reacted to the cancer with surgeries, chemotherapy and other treatments, until we stopped 16 months ago.  

Half a decade later, we remain inside of the bubble we've built, that's obviously working, because I'm still not dead yet.  

When I say "we", what I really mean is Sarah. 

She built it, altering everything about the way she thinks, plans, works, plays and rest, so that I'm taking care of, and still able to find joy, even fun, in every single day.  

Che's changed too, an ordinary happy-go-lucky girl, who morphemes into a caregiver, just like her Mother, when things go wrong for me. 

The look on her face when I trip, stumble, fall, or face plant.  She rushes over, picks me up, takes me to Sarah, just breaks my heart. Dark flashes of fear in Che's eyes remind me that she knows it can all end at any moment. 

It's hard to maintain anything for 5 1/2 years, especially 2 stage 4 cancers, yet here we are! Exhausted, weary, mentally fatigued, and still holding on for dear life.  

At least, for a little longer. 

We talk, and joke, openly about my dying as we keep things real, but after so long, it's become harder for us, each in different ways. 

It's hard to find motivation to change our norms, and we struggle with that.  

The rare visitor inside our bubble often leaves me in bed for days, overwhelmed by emotions, leaving Sarah and Che to caretake more, and that's not fair to them.  

I've been very public on social media, and it gives false senses of our realities. 

For me to go anywhere, Sarah's forced to do a great deal of extra work, and must hit the window of me feeling well enough to try. It makes planning hard.  

Finding motivation to let Lainey drag me for a walk, referred to as exercise in our house, is becoming extremely challenging. 

The same's true with my writing.  

It's becoming so hard.  The inspiration's still there but the energy, focus, and determination are waining.  

We try to hold onto the present as we do our best to prepare for a very different future. 

So when a package arrives, the official certification anointing me Bishop, a sponteanous gift from out of the blue, we laugh in delight and joy. 

It's a preposterous gift! 

Especially now!

I am honored at the accolade, because it seems like a blessing on 5 1/2 years of sickness, toil and danger. 

Perhaps it will bless us some future for us too. 

                            *******

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

Stupid Doctor's Visit

 

"You're here for your annual wellness visit?" the Nurse asks. 

Sarah and I laugh, and say no. 

"Well, why are you here?" 

"Because Medicare requires it," I answer.

"I need a prescription refilled, and I don't know, maybe there will be Christmas bonus out of it."

She smiles, remains silent and leaves us waiting for what seems like half-an-hour before the Nurse arrives. 

She sits behind the computer and stares at my file. 

"You're here for your annual physical?" she begins. 

"No, we just need to get this prescription refilled and we're required to come in for this to happen," Sarah explains, giving every detail of my medical history. 

"Are you Sarah?" she asks, staring at my wife. 

"Yes," and we wonder what's in the notes about her?

"Don't you want a physical?" she asks, perplexed and uncertain.  

Sarah and I look at one another and say, "NO!" at the same time. 

What do we want to know from a physical at this point? 

Stage 4 pancreatic and stage 4 prostrate cancers left us knowing everything we need.  

We don't want to know what else might be going on inside. 

Against all odds, what we're doing right now seems to be working, so we'll just keep doing what we're doing. 

"Can I at least check your breathing?" she asks, almost pleading.  

"Sure," I shrug. 

She does, asking me to lay down and begins feeling my stomach, pushing the scars from my Whipple surgery. 

It hurts. 

"That's enough," I say. 

Sarah resumes control of the visit, clarifies the prescriptions been refilled, concludes the visit, and we leave. 

So, we feel as good as we can about how things are going medically, and will continue to do what we've been doing because, I ain't dead yet. 

                           ********

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

Thinking about Tomorrow

 

Sarah holds me on one side and Che has my other, guiding me along the boundaries of Chippewa Square into the Savannah Theatre for the performance of "Annie".

Pausing, Sarah snaps our pic as we make our way. 

It's another miracle in my life, as mobilizing the energy and focus to do things like this is rare anymore. 

Sarah's just as challenged, after 5 1/2 years of constant caregiving, on top of the millions of other things she somehow manages every day. 

Truth be told, Sarah got the tickets to break us out of the safe confines of the tiny bubble we've built, to keep us in tact as a family for a little while longer. 

She made another magic memory, as Che belted "Hard Knock Life" and "Tomorrow", we held hands together, ate popcorn and managed the throngs fighting their ways into the "historic" restrooms. 

During the curtain call, Che stands in my lap to see, cheer and clap, while I sit there holding her steady, crying that I get to be Daddy like this one more time.  

Sarah quickly leads us out and they repeat the support on either side as I make my way.  

Home now, we're too exhausted to consider eating dinner.

But we're happy exhausted, because we pulled off another miracle today.  

Who knows about tomorrow?

                           *******

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

What Comes Next?

 

"Don't you believe that Hitler is in Hell" my son-in-law asks. 

We're in an after dinner conversation, after he's been tasked to babysit me while Sarah and Maddie take Che to a Kidzbop concert. 

Henry's taken me to a quaint, and lovely, local Pizza place where our conversation began, covering an array of topics.  

Now we're back in his and Maddie's home, sipping fine bourbon, taking about what happens after you die. 

The bourbon is strong, yet smooth, loosening our tongues, but not rushing our words. 

We've already touched on Heaven and, after I said that I think pretty much everyone gets in, he pivots to Hitler in Hell. 

I shrug my shoulders.  

"Who knows?" I smile, dropping one cube of ice in my bourbon. 

Henry stays neat.  

"I used to think those things," I continue, "passionately! But I don't think about such things anymore.  How would I know if Hitler's in Hell? I've never been."

Henry toast me with his glass, as if to say, "Touché." 

I don't think about most of the things I was taught growing up. 

Not when it comes to dying anyway.

Henry's enjoying this conversation as he's thinking such things these days.

We go back and forth for over an hour, slowly sipping the bourbon, invigorated by the dialogue.

What's next?

I don't know. 

I do know that regardless of if I'm dead and that's it, or something happens, either way, I can't be disappointed. 

So that's a pretty good place to start. 

I do think about my grandparents, Ira and Edith Carver, who taught me to believe all those years ago. 

And I do.  

In spite of how much religion, politics and the media (doesn't matter which kind) keep trying to kill it, I still believe in love.

"God is love," my grandparents taught me, so yeah, I hold on to this, even today.  

In terms of what's next, I don't know. 

Love has gotten me this far, and as messy as it sometimes was, it's all still Heavenly. 

So, I'm counting on love, for whatever comes next. 

So far, so good. 

The door burst open and Che, Sarah and Maddie excitedly rush in, talking about the concert.  

Henry and I do one last toast, draining our glasses.

Who cares about what's next?!

For now, there is only now.  

                       🌻🌷🌸🌹

My Celebration of Life delightfully continues to linger but, after I'm gone, I ask you to make sure Sarah and Che are doing okay for me.  

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

Thank you. 

My Tiny After Party Lingers

 



Sarah gets dressed up and is so stunningly beautiful, she literally takes my breath away.  She smiles at me, eyes glistening and radiating. 

Che also dresses, sporting new "trendy" clothes, but wants to make certain the place serves French fries, which makes me laugh because I can remember when I was like that. 

We're excited to try a new spot, "The Laundry Diner", which opened to rave reviews, the latest of a seeming endless selection of new restaurants.  

It's a beautiful place, as we join the crowd waiting to be seated.

Sarah stands beside me dripping beauty.  Che's holding my hand, happily dancing, approving the French Fries the Laundry Dinner serves. 

I am delighting in these moments until, suddenly, I am not.

My head grows light, sweat pours from my body, and I have to sit.

Che pulls me outside and I plop on a stair, holding my head, trying to will myself back together. 

Che runs back inside to report to Mom. 

I manage to willpower myself back inside.  

A man gives up his seat for me and almost as soon as I sit, a second wave hits. 

Sarah sees I can't do it, grabs my arm, Che's hand, directs us back to the car and then back home, zipping through McDonald's on the way home because they're starving.

Freezing, I crawl under multiple blankets on an hot summer day and sleep.

The next day, my left hip erupts in discomfort every time I stand or walk. I can do both, but it hurts like Hell! I painfully stumble. 

But it's the first week of school and Che's delightfully excited beyond belief. 

We walk her to school each morning, and I somehow make it each time.  

Sarah and I wonder if this is merely the latest "symptom" of all of my cancers, which is the logical and expected thing. 

I fight to get back to where I was, which takes lots of effort, but yields few results. 

Sarah breaks the melancholy by taking me on a date to see "Superman", the first movie we've seen in forever. 

We throughly enjoy breaking our routine, diverting us from grave concerns, helping us greatly to celebrate still being here doing this. 

I slowly improve. 

Sarah has to work and I'm good enough to watch Che after school, even taking her to McDonald's for a Happy Meal. 

Returning home, I struggle to walk from the car to the house, unable to  keep up with Che, who's excitedly trying to open the front door without the key. 

When I finally shuffle up, I see her, looking at me, worried and scared. 

"Go on," I smile. 

"I just want to protect you Daddy", she says hugging me, forgetting about her fries.

Days later, I've mostly rebounded, though we've learned that each time I get sick, I never quite make it all the way back to where I was before, and phantom pains when I stand and walk remind me that it can happen again at any time.

"Hey Dad," Che calls, after Sarah's home and we're happy about it, "do you want to go swimming?"

Hell no I don't want to go swimming!

It's been raining. 

It's cool outside.  

If I go swimming now I'll be freezing under multiple blankets the rest of the night. 

"Da?" She calls again. 

"Well Hell!" I tell myself, "this could be my very last chance to ever swim with Che. I'm not going to miss it, regardless of how bad I feel."

So we swam and it was magic.  

And I froze all night under multiple blankets, and it was awful.

Such is life. 

Now, I am better. 

Not 100% because I'll never be that again. 

And not back to where I was before, but close enough to feel it. 

But most importantly, I'm still not dead yet, and our tiny little after party continues, until it doesn't. 

                            ******

My Celebration of Life is over while Sarah and Che have a whole new life together, coming soon and I want to make it special. 

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

It's an exquisite dance

 

"Dad, you're dying this year, right?"

Che's snuggled beside me, staring into her phone and the question comes out of nowhere. 

Sarah's eyes lock with mine and we're both questioning without words. 

"Yeah, probably so," I finally say, as casually as I can.

"Well," she grins, "I already have my dress picked out for the party."

Sarah eyes explode into laughter with mine. 

"There's not going to be a party," I laugh. "We've already had it.  Well, we're still enjoying it now, but there's no party later."

"OK," she happily says, resuming her focus on whatever she's doing on her phone.  

It's quite the transition going on in our house, more a sense of expectation of things that are coming, but we talk about it in real time, though we're easily distracted from delving deeper. 

One of my current claims to fame is, I'm often publicly recognized as William H. Macy, specifically the way he looked as Frank Gallagher in SHAMELESS.

I freely admit that William H. Massey is one handsome fella, and I LOVE Frank Gallagher, and enjoy these mistaken identities whenever they happen, which is a lot!

Chelsea, Sam, Lily and McKenzie are visiting and we meet at Auspicious Bakery Bread and Butter for brunch. 

"Did anyone ever tell you that you look like Frank Gallagher?" our waitress asks, pouring me water. 

Chelsea erupts in laughter.  

Sarah suggests we watch SHAMELESS again because we enjoyed it so much! 

(Frank's farewell in the series finale is my all time favorite ending of all time!).

That evening, after I've fallen asleep, Che asks about Frank, so Sarah pulls up the series finale and show's it to her. 

Frank's lying in a hospital bed with oxygen on. 

"That looks like my Dad when he was in the hospital!" 

"TURN IT OFF!" she exclaims, "TURN IT OFF!"

Che's not there yet.  

She sees it coming but she's not ready yet.  

There's certainly a sense of getting ready though.  

Maddie sends Sarah pictures of places to live in Florida, and we have discussions of what could be and it's hard to not think about all of the possibilities. 

It's nice to dream but hard not to think about the realities of life after I am gone. 

Che will need the stability of her friends and Sarah has a job that provides her with the flexibility needed with an 8 year old at home when she becomes a single parent.

It is an exquisite dance, dying and living in dreams and reality.

"I guess that's it," Frank happily says, drinking a beer, floating towards Heaven, "Not much left to say, really, except, time's precious. Don't waste it. Have a good time. I sure as hell did."

                                  ________

My Celebration of Life is done while Sarah and Che have a whole new life together, coming soon and I want to make it special. 

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