Letting go of Survival Mode

I have been planning my daughter’s funeral for ten years. She almost died at seventeen from metabolic distress but after a nine day stay at the Stanford’s Children’s Hospital, she stabilized. However, her prognosis wasn’t good.

“She probably won’t reach twenty. You should prepare yourself,” her doctor said.

Three years. Three more birthdays. Three more Christmases. Three more summers… if we’re lucky.

But despite all predictions, there have been ten more birthdays, Christmases and summer vacations.

And at every celebration I wonder if it will be her last.

This way of thinking puts you in permanent survival mode. It becomes impossible to make plans for the future or believe in your dreams. You remain hyper-vigilant, aware of every breath your child takes in her sleep. You put everything other than her needs on hold because you believe that one of these days, tomorrow or next week or next year, she will die.

You forget how to live.

My daughter has not forgotten. She lives every day like a Bodhisattva, fully embracing the present moment and enjoying her life. She loves unconditionally, is kind to everyone, stands up for herself when crossed but then quickly forgives. When she is happy she sings off-key with a loud voice, arms wide open, not caring if anyone stares or laughs. People usually smile.

My daughter doesn’t live in survival mode, even though her life is at risk.

On the Winter Solstice, a few close friends and I stood around a large candle set on a table in my garden. One by one we burned a piece of paper on which we’d written something we wanted to let go off. It was the thing, person, worry or fear we wanted to leave in the darkness of the longest night to allow room for sweetness and light in our lives going forward.

I wrote “survival mode.” Then I touched the paper to the flame of the candle, held it for a moment as it began to burn, and dropped it into the hot wax. As the paper curled and turned to black ash, I thought, “No more survival mode. I want to live.”

I want to feel my own body again rather than pushing away hunger, fatigue and pain. When I push those sensations away I also push away the ability to feel happiness, softness and pleasure.

I want to honor my own artistic abilities and make space for them to grow. Survival mode steals energy from creativity. If I open to my own muses, what can I create?

I want to build the life I dream of, one filled with art, joy and love. I don’t have to wait until someday, I can start today. I live in a large, funky house with amazing views; what better place to begin?

I want to learn to live in the present moment without always watching for the next battle. My survival skills are excellent and have served me well; I am resilient and sturdy under any crisis. That’s good, but I don’t have to live like there’s a crisis every day.

I want to throw my arms wide and sing loudly when I’m happy, just like my daughter does.

On New Years Day, 2024, I make the same request as I did on the Winter Solstice. Let me release survival mode so I can embrace life. Let me honor the skills I gained while battling for my child’s life by learning to let those skills go when they’re not needed. Let me feel all of the sensations of my body, including pain, so that I can fully love and feel happiness. It won’t be easy because survival mode is safe. Stepping into the light fully human and vulnerable is terrifying. But I imagine the joy I might find, take a deep breath, and start to sing.

My daughter knows the song.