I wrote this before my friend Emily Rapp’s son passed away from Tay Sachs.

I am writing this high above the clouds. I am sitting in a small plane with nothing much to do except reflect on the place I am leaving. That place is Santa Fe, New Mexico. I went for a quick visit because one of my closest friends, the writer Emily Rapp, has a precious baby boy named Ronan who is dying of the very fatal Tay Sachs Disease. I am sitting in this tiny plane reflecting on our visit to The Chimayo Sancturio, to Taos, to the cute cafes we visited and the car rides we took. I have put my book away and simply turned to the clouds with a willingness to remember what I need to remember.

As I left this morning, before we headed off to the miniature airport in Santa Fe, Emily asked me if I wanted to say goodbye to Ronan. I went into his room where he slept on his side with a stuffed tiger between his legs, his eyes half-open and drool coming out of his mouth. I said, “Goodbye, buddy, goodbye. I love you.” I kissed him a hundred times. Maybe a million. I left the room and then went back in again to say bye one more time. I did that twice.

I do not know if I will ever see Ronan again. Probably not.

So, as I sit here staring at these nimbus clouds so white they look painted onto the sky, I decide to compile a list of what I learned from Ronan.

1. How to Be Present

Ronan just is. He sits there in his stroller or propped up on his pillows and simply soaks up the energy of the room—a big baby sponge who sometimes has choking fits and seizures. He doesn’t ask for much. He knows when his mom is near. He knows when love is present. He knows when he needs to be fed. You feel silly when you find yourself worrying about the “what ifs” of life when you are in his presence, like he is some baby Buddha who has all the answers. He understands what it means to be still and also to have no expectations.

He is present for his life in a way that is at once disarming and beautiful.

2. How to Love

The love you feel for this child is impossible. Can’t you feel it, even having never met him?

What if we let ourselves love in this way more often? Without any expectations, without regret, with only the here and the now and the open-hearted abandon that comes with knowing how fast the clock is ticking…how each kiss on his soft little face could be the last?

3. How to Go with the Flow

Ronan is such an easy traveler! He came with us everywhere; his little head propped up with stuffed bears and tigers. He was happy to be there in the backseat. He was happy to be eating cheesecake from a spoon fed to him by his mother. He was happy to just be. I wish I could take that lesson and store it in the pocket of my being, so if I started to feel nervous or antsy about how life was going, I could reach into that pocket and take out a piece of Ronan’s sweet acceptance. I am sure he would want that. I am sure he would want us adults to take away the best parts of him and carry them, a small torch throughout the world with his name on it.

4. How to Be Patient

I don’t know if he knows what is happening to him. How can we really know these things? I don’t think he does. But, what he does do is teach us what it means to have no expectations. How many times do we set ourselves up in life to be disappointed or, else, by pretending we know what’s going to happen? Ronan just sits in his chair, being fed his prunes and bananas, and waits. He isn’t truly waiting, not in the sense of I am waiting for something to happen with my life, but rather a waiting for the next breath and the next moment. A more simple waiting. A more primal waiting. He is patient with whatever knowledge he has. Whatever knowledge of love or bananas or mothers and fathers or stuffed tigers. He is patient and will wait for us to catch up with him. He will wait until we have learned all the lessons he is here to teach us, even if it takes a lifetime.

We will remember one day as we hurry through a day in our lives.

As we complain about a pair of jeans or a broken promise or a date, we will stop and sit down, right there on the floor, and we will remember Ronan’s grace and all his patience and love with a deep knowing that no lesson was lost.


Jennifer Pastiloff was recently featured on Good Morning America. She is a yoga teacher, writer, and advocate for children with special needs based in L.A. She is also the creator of Manifestation Yoga® and leads retreats and workshops all over the world. Jennifer is currently writing a book and has a popular daily blog called Manifestation Station. Find her on Facebook and Twitter and take one of her yoga classes online at Yogis Anonymous.

Jen will be leading Manifestation Writing/Yoga retreat at Kripalu Center in Massachusetts in February 2014 as well as retreats in both Costa Rica and Tuscany in 2014. She travels around the country leading her signature Manifestation Workshops. She is also leading a New Years Retreat in Ojai, California.

*Image courtesy of Anne Staveley.