I once fell into your lap at the end of the row when I was pregnant with Jesse and wobbling toward the bathroom during a screening of Matewan but now I am genuflecting to you for your eloquent and for the ages speech that took it right to where it was most needed. Thank you, Boss. (Chris said I did it on purpose but I really lost my balance. Really.). And that baby, Jesse, chanted your name, one of the only ones he said clearly when we screamed Born to Run, this boy who never took a step in his short life. But he was lifted by you.  And now we all are.

Today, March 25th, is World Cerebral Palsy Day.

Hey Donald (I won’t dignify you with the title you have desecrated forever):

I hear you’re looking for people who might not be Americans who have tattoos so you can ship them away. Well, I’m a first-generation daughter of Italian immigrants and my mother was born here to immigrants who may or may not have been “documented” at the time, way back in the late teens a century ago. 

Here’s my tattoo:

It’s a memory tattoo of my late son’s name. He had cerebral palsy, like your nephew Fred’s son. Remember him? You told your nephew: “maybe you should just let him die.”

And now you’re making that sadistic dream come true for untold numbers of American citizens with disabilities.

Wanna ship me someplace now? Because I won’t be silent about my son. 

We fought for two years for his inclusion in the public school even here in Massachusetts. He was on the honor roll and studied Latin. He was a poet. He brought joy to many people besides us, his parents who adored him. 

One of his works had 

I AM SOMETIMES INVISIBLE

right in the middle of the poem. He insisted on that.

Today is March 25^th, the day we honor the millions of people in the world who have cerebral palsy.

I will make sure my son is never invisible. 

And that your name is forever crowned in infamy.

Sincerely,

Marianne Leone

My husband and I lying in bed last night:

Me: I feel battered by everything: February, the coup. The coup. February. We should get massages.

Him: Yes! We have those gift cards from when we were in lockdown, still, right?

Me (excited): Yes! I’ll book tomorrow. (after a moment). Shit!

Him: What?

Me: Tomorrow’s Valentine’s Day. It’ll be booked solid.

Him: Shit.

Me: Fking Valentine’s Day.

Him: Fking Valentine’s Day.

Me: Happy Valentine’s Day.

Him: Happy Valentine’s Day.

We both fall off the bed laughing.

(insanely happily married forty-one and a half years)

A few years ago when we were under lockdown, I spoke via zoom to Courtney Ruffner’s class at Florida State College, where Courtney is the Department Chair of the Language and Literature Department. Courtney assigned my memoir, MA SPEAKS UP to her class and one of her students, the very talented Lucy Hsiung, adapted a chapter from my memoir as a graphic novel in the style of Persepolis. See below:

“I just want to live in the time travel delight that is the Bowery Hotel in lower Manhattan,” I told Chris. Real keys not made of plastic. Windows that open. Books in a bookcase in the lounge. Dead tree newspapers hanging outside your hotel door in the morning. Great views. An Italian restaurant that serves the best cacio e pepe pasta outside of Trastevere. I just know there is a portal here somewhere. Chris and I discuss. He feels it’s hidden in a phrase, a la Beetlejuice. We never found the phrase or the portal. But I’m never leaving. Staying here, a gothic crone Eloise. You’ll find me in the restaurant scarfing down pasta, reading a book from the lounge.

We sit, stupefied by the cold outside, in front of the giant television, gratified by the nearby burrowing rescues, awaiting the weather decree. It’s almost single digits outside and my doomy self pities the foxes and turkeys, the only neighbors I love with abandon. Then an ad for Midnight Run flashes by, a movie from the nineties, and I realize that I have played girlfriend to both Joe Pantoliano and Robert DeNiro and that fact just makes me laugh and the song from Follies bangs into my head and I’m still here. Somehow. 

In 1975 I saw Goddess in Human Form Maggie Smith in Private Lives on Broadway. She brought the audience to their feet within the first MINUTE she was onstage. Without a word. She torqued her body into three disparate pieces as she tried to see the adjoining terrace without herself being seen. A stage moment never to be forgotten.

She worked with Chris in My House in Umbria in 2003. She was awe-inspiring to work beside as an actress, but she also gave us a hangover remedy in Siena after too much prosecco the night before.

And I am left with her heartfelt letter to us about Jesse….

A terrible loss but Maggie Smith leaves us with legendary performances and the memories of a great lady.

Along with the many people mourning our seventeen-year old son’s untimely death at the First Parish Unitarian service, there would have been one person slow clapping in the back, celebrating not Jesse’s life, but his passing. That would have been our former president, the one who refused to cover the medical costs of his nephew’s son with the same condition: cerebral palsy. The one who told the child’s father their child would be better off dead. From my forthcoming memoir, Five Dog Epiphany at Gracie Belle/Akashic Publishing:

“If I riff through the catalog of horrendous things uncomfortable people have said to me regarding the death of my son, I could dredge up some real gaspers…People offering sympathy to bereaved parents are at a huge disadvantage. I feel a certain sympathy for them because anything they say is terrible and wrong. The situation is the definition of awkward and no-win. The woman interviewing us to adopt a rescue dog… can picture how we once made the leap to loving this child. And this is better than the people who say, who actually verbalize the words, “Oh, he was disabled? Then it’s for the best,” as if they are the directors of eugenics at Hitler’s Operation T4, and their job is now a little easier with the removal of one more “useless eater.” On the terrible day of Jesse’s death, my elderly ninety-something neighbor across the street was the first one on the scene that frosty January morning, after the fire trucks and paramedics arrived. As my husband and I scrambled to the police car, she stood at the top of our driveway, an angel of death swaddled in mufti.

“Jesse’s dead,” I said, stunned at saying it aloud. “Then it’s for the best,” she said, the progenitor of many Grim Reapers, all echoing the same unbelievable sentence. “

Jesse brought joy to us, his parents, every single day he was on this earth, though we had a two-year struggle for his inclusion in public school, where he thrived and made the honor roll every semester. My husband and I work in a business that can infantilize you and make you think you are the center of the universe. Our son was our true north, our best teacher, the one who pointed us to unconditional love and the joy that touch of the divine can bring.

The rest of the country wants to return to the kind of joy and laughter we experienced with our disabled son. The former president’s quote to his nephew Fred Trump about his disabled son was that his parents should “let him die”…savvy advice, as it turns out, for what we need to do to Trump’s dark-visioned campaign. It’s suffering from an incurable necrosis of the soul and is infecting our country with hatred, and it should just…die.

Instructions for living a life:
Pay attention.
Be astonished.
Tell about it.

–Mary Oliver, “Sometimes”… 

(re-upping my post from 2014, because it’s still TRUE)

Reason Number Pi why I love you and don’t deserve you:

…because when I’m leaving the dentist’s today after having a small helicopter crammed into my mouth (that is necessary now for a digitalized x-ray )

and I’m saying my goodbyes, trying to get my jaw to work again and reclaim my fresh mouth, 

the dentist tells me she saw you at the health club. 

Her seven year old was checking all the vending machines for stray quarters, a game she always plays after her mother takes her swimming,  

and you sneaked a quarter in a tray when she wasn’t looking

 and you told her to make sure she checked the trays again and then you left. 

Because you’re a man who practices random acts of kindness and then doesn’t even feel the need to tell me when you do

(when I would’ve created a .gif of myself doing the same thing and posted it on my blog and twitter and instagram and my facebook page) 

…because you like to scare me with your random Ronald Reagan face peeking out at parties.

…because your Gary Cooper makes me giggle like I’m six.

…because you bought a macramé bracelet from the little girl next door when she sat alone at the top of the driveway with a little table displaying her wares on our not-busy street

…because you told me that your excised scene from Spike’s her, the one about a man in love with a 747 is really about me

…because there’s Jesse in there, somewhere and you raised him up somehow

An incantation that is kindness, that is the pi of love