Trigger warning: Heart defects, surgery
This newsletter is a bit different from what you usually receive from Ladies Get Paid. It took a lot to write and I know you’ll receive it with kindness.
Marissa was the first to hear the murmur. She was a traveling nurse from Boston who’d fallen in love with the LA sunshine and never left.
The doctor was summoned. He also heard it.
He ordered an echo but told us not to worry. Every baby is born with a hole in their heart that closes within the first few days of life. In his 20-year career, he’d only seen surgery once.
I’d given birth barely 24 hours earlier. A scheduled c-section after an uncomplicated full-term pregnancy, Raphael was 6.1 pounds; Antonia was 5.7. They were perfect.
Or so we thought.
I was the one who got the call. The news was bad, really bad. I let out a wail so primal, from so deep inside me, it carried with it the wails of all grieving mothers, everywhere.
How could this have happened?!
Every week for many weeks, I’d had an ultrasound and every week I was told nothing was wrong. But they were wrong.
Fuck. Fuck. Fuck.
Raphael had multiple extremely rare congenital heart defects including an interrupted aortic arch (that occurs in only 0.002% of all newborns) and a ventricular septal defect (that happens in about one-third of 1% of all newborns.)
I felt sucker punched by the universe.
The next 48 hours were a race against time. Or perhaps more accurately, a race against death.
The hole was closing but because the rest of his heart hadn’t formed properly, when it was completed it would be, in the doctor’s words: “the worst-case scenario.”
The worst-case scenario.
Raphael was whisked from my arms to the pediatric ICU to be put on medication that would keep the hole open until the surgeon – who was on vacation – could determine the next course of action.
When they allowed us to visit him, I leaned over his bassinet, trying not to get too close, afraid my torrent of tears would shortcircuit the many wires covering his tiny body.
It would be two days before the surgeon returned and an action plan in place. Two agonizing days of not knowing his prognosis and what kind of life Raphael might have…if he were to live at all.
Raphael was scheduled to have open-heart surgery on his one-week birthday. The surgeon couldn’t guarantee that he would be able to fix everything in one surgery and that he would make the decision the day-of, when he saw the heart in person.
Raphael’s heart was the size of a walnut.
Ashley, my wife, felt reassured by the surgeon but my mind kept looping, like a static record, on the mortality rate: 10 percent.
10 fucking percent.
I couldn’t comprehend something that I had no vocabulary for. It was as if before this moment, I was play-acting at life. Now this shit was REAL LIFE. No acting. No anchor. Just me, desperately grasping for anything to ground me.
Then I found it. Or rather, her.
“It is me. I am the buoy.”
I repeated this to myself. Over and over and over. I flooded my body with feelings of love: the love I felt from our family and friends. My love for Ashley. My love for the doctors and nurses; for modern medicine. For Raphael.
Love, love, love.
I knew love might not be enough to save him, but it carried me through the next terrifying ten hours as they opened his body and laid his heart bare.
His heart, the size of a walnut.
On the day of the surgery, Ashley and I wrapped his baby blankets around our necks. It was a blaringly bright sunny day and we sat on wooden benches in the courtyard of the hospital, clutching each other and cups of coffee. I experienced chest pains at the exact moment they began the procedure.
Finally, we got a text from the nurse. Surgery was a success and we would see him shortly.
Except we didn’t.
It would be another five excruciating hours until we heard anything.
Yes, the surgery had been a success.
But there had also been complications.
When Raphael was being taken off bypass, the material they grafted to his heart blew off. All of their work, undone in an instant.
The surgeon was faced with the decision of trying again (in his words, “finding another way in”) or doing at least two more surgeries with nine months of hospital time.
He found another way in.
Raphael’s heart was repaired but his body wrecked. He had to be put on an artificial heart machine for an indeterminate period and we were warned his recovery would take much longer than previously estimated.
He was in the hospital for a total of 44 days. 80% of his life.
It is during this time that I liberated mine.
I had been living in abject fear that the other shoe would drop. I mean, it already had. And it continued to: there were many setbacks in Raphael’s recovery. His withdrawal from fentanyl was too aggressive. His intestines started to decay. He was released from the hospital only to return a week later.
The other shoe drops, drops, drops. And I drop with it.
Until one day, I said ENOUGH. I am faced with a choice: I can continue to live in abject fear or absolute fearlessness.
Okay, how? First, I needed to define fear.
- Fear is the narration in my head.
I realized that up until this point, I experienced life, not as it unfolded, but as I narrated it to myself. Narration through self-judgment and the pressure to achieve. Narration through expectations of if/then (ex: if I carry the twins full-term, they will be healthy, if I work hard, I will be rewarded.)
- Fear is avoiding important conversations with myself.
- Fear is doom scrolling.
- Fear is marketing-driven emails instead of heart-driven emails.
Then I defined fearlessness.
- Fearlessness is fully experiencing the drop in my stomach when the doctor calls.
- Fearlessness is allowing others in.
- Fearlessness is allowing my feelings out.
- Fearlessness is the realization that everything carries a lesson. Fearlessness is, my mother says, to be a flower in the rain, soaking up every drop in order to grow.
- Fearlessness is not the absence of fear so much as it is the absence of narration, of any kind of expectation.
To be clear: it’s completely terrifying to let go of the narration. It’s like there are no guardrails and you’re just floating out there in a bunch of nothing.
Then you realize, there isn’t nothing. There’s you.
You are the anchor, you are the buoy.
When I finally stopped narrating how I wished things would’ve gone and truly accepted and absorbed the moment I was in, I felt the immense humanity and humility of all the doctors and nurses.
In caring for the critically ill, they had to deeply trust themselves. Trust their team. Trust that whatever the outcome, they would continue to show up again and again. And again.
Then it hit me that I’d gotten it wrong. It wasn’t a choice between fear and fearlessness. It was a practice. A commitment of action.
Which is why I shared this story with you.
I want to practice fearlessness with you.
So every week for the rest of this year, I commit to sharing a story from my life, the things I learned, and steps for us to take together to generate more trust in ourselves.
I’m also going to find more ways for us to deeply connect with ourselves and each other in this journey of inner and outer wealth.
But first: thank you.
Thank you for being part of the Ladies Get Paid family as Ashley and I expand ours.
Thank you for your patience as we evolve as human beings and as a business. We’re more committed than ever to your success.
I’m excited for this next chapter and I can’t wait to write it together.
THIS WEEK’S ACTION STEPS
➡️ Define a fearless life. What does it look like? Feel like?
➡️ What is one small step you can take towards it?
➡️ Think of someone you love. Tell them.
➡️ Be the buoy.
PS. Here’s Raphael (R) reunited with his sister, Antonia (L) ❤️🩹 ❤️🩹
