An essay by my friend Jennifer, who is my good friend and just blew up my Facebook page.

The Manifest-Station

Today we took a road trip.

Me, Emily and Ronan. Ronan, packed in the back, his small floppy head propped up with stuffed animals and socks, his face reflected in a crooked little mirror, so Emily, his mom, could look into it every so often as she drove in case he had a seizure or stopped breathing.

Tay Sachs has its hold on this little boy. This perfect little boy making cooing noises in the back seat as we marvel at trees and patterns of light and talk about what it means to be happy and how even when you are happy you are still a little bit sad.

Or at least I am.

Our first stop after we left Santa Fe: The Chimayo Sanctuario. It was hot when we stepped out of the car, hotter than it has been back in Santa Fe. Gusts of warm wind blowing my…

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8 responses to “

  1. breathing, breathing, breathing for and with you. thank you for offering this holy dirt to ground us all. breathing, breathing, breathing.

  2. I don’t have words. The short video of you and Ronan just made my day, week, my year. So much love and warmth and everything that is beautiful in this world. Sending warm thoughts and all the good angels I know your way.

  3. Jennifer’s most touching essay describing your day at Chimayo put into words the way I felt there when you shared with us the sanctuary, that courtyard, and especially the chapel and the dirt room. Ronan and you in the video is preciously heartbreaking–I felt the hot sun in his red cheeks and your beautiful face loving him. I am looking forward to the book. And referring to Janet’s comment above –your journey grounds us touches our deepest fears, love, and humanity. Hugs to you and Roan.

  4. What I loved best about this was the photo of you, Emily, with your face so near Ronan’s. What beautiful, precious face he has. I know you do not know me, but after reading your Dragon Mom piece I follow you on Twitter and check in here regularly. Thank you for sharing your story and your son with us. There aren’t any words, really, to explain everything this blog has made me think and feel. As a mother of a toddler son I can only say that at the very least you have made me gratefully aware of every single moment I have with my child.

  5. Thank you all for reading and for loving these guys as I do. Love jen xoxo

  6. hi emily – i have watched your video over and over with tears streaming down my face. i know that i am a stranger, but i check in here regularly. thank you for sharing your story and your beautiful, sweet ronan with us. i have no words that re enough to explain the way that i feel – except that my heart is broken for you. your bravery amazes and inspires me.

  7. I just read your interview on CNN. I am so sorry Ronan died. Having my son die at 19 was heartbreaking. He had a severe reaction to Dpt shot at 10 weeks and numerous medical issues due to pertussis part of the vaccine. Even though he was 19 when he died, he was like caring for a 65lb 4-month-old. He had a j-tube, Kangaroo Pump, suction machine, oxygen and a wheelchair. I had to laugh when you mentioned the suction machine! He could make sounds, but never said a word. In the end he died in his sleep. Though I was able to protect him from many things, I couldn’t protect him from death. I too, also felt relieved when he died. I knew he wouldn’t have to suffer anymore, but I still felt awful for feeling that way. I’m still at a loss when someone asks me how many children I have. Losing a child was not the club I ever wanted to join. I know the
    intense journey you’re going through and want to thank you for being honest and for writing the book

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