This is an older piece I wrote almost 3 years ago. Ronan passed away peacefully on Thursday, Feb. 15th at about 3:30 am in Santa Fe. He was surrounded by friends and family.
October 6, 2011. Which Brings Me To You.
That which brings me to you. Here I am in Santa Fe, sitting on a love seat. Next to me, a sweet baby is propped up on pillows as I write, drool sliding down his chin, eyelids heavy and soft, purring like a cat every so often. A sweet dying baby.
Which brings me to you. It caught my eye, that book on the shelf in the office converted into bedroom, equipped with an air mattress for me on the floor.
Tay Sachs is that which brings me to you. A dying baby is that which brings me to you, Santa Fe.
It is cold here. Colder than I expected. There is an energetic shift in my bones that I recall from many autumns in New Jersey and New York. As if the person within the person of me comes out and takes over during this time. The person wears my clothes and looks like me. She is a more somber and introspective, melancholy. The light patterns change, the air demands attention and the sky meets you at the front door as you open it for a moment of season. They get season here, whereas L.A. lacks that. I appreciate the season as it demarcates the eras of my life. Without them, my life becomes one long weekend. Such is life in L.A.
The season here, however, is the same it has been since Ronan’s diagnosis. I can tell the weather in their little adobe house has been winter dark for the last 9 months. December dark. Losing light at 4:30 pm and dead trees kind of dark.
Ronan is peaceful. He doesn’t know what is happening to him. It is hard for me to conceptualize that soon, could be months, could be a year or more, he won’t be anymore.
Right now he sits next to me in a plaid shirt, sitting in what looks like a lotus position, and just is.
I sound like such a yoga teacher when I say that. He just is. He doesn’t fuss except when he is very tired or his head flops over to one side, which it does quite often. His presence is comforting, the knowing he is sitting there next to me, like a fat baby Buddha making little hiccuppy noises every few minutes. He’s here now. In time, a short time, he won’t be. The mathematics of this equation refuses to register in my head. He’s here now and everything feels good on this brown couch. The rise and fall of his chest is a reminder of what is constant in the world, of kisses and baby things and deep full breaths of mountain air after you’ve been trapped in a dirty city way too long. He is so peaceful it is hard to imagine that with his death will come such an uprising, such pain, such a loss, that the word peace will have long left the English vocabulary.
The word ‘peace’ will be come extinct along with ‘fairness’.
It is colder than I imagined here. We went out to breakfast today with Ronan to Mavens. Emily, with her one leg, was one of the most dedicated yogis (and spin class addicts) I had ever met, and right away I knew I would be her friend. It was fast like that. Love at first sight, if you will.
At Mavens, I had a traditional Mexican breakfast of sorts and while Emily went to the restroom I snapped 15 pictures of Ronan with my iPhone. I pretend that if I take a lot of pictures and write about him enough that he won’t ever stop existing. A friend of mine emailed me yesterday and told me to “steal away a little of their pain.”
I wish I could.
Ronan gets startled easily. I crack my knuckles, a nasty non-yogic habit. A dirty disgusting habit I acquired at eight years old when my dad died, in an effort to be like him. I crack my knuckles and Ronan startles. He may be dying but his intuition is still spot on. He cries when he is tired or hungry or annoyed or I crack my knuckles. I should stop doing it in honor of him.
His face is stunningly beautiful. So much so, that yesterday at a coffee shop in Santa Fe with Emily, I told her that maybe he was an angel. Corny, I know. The face of an angel stares back at you when you look at this baby. No judgement, no fear, no lines of pain and a life lived, just beauty and quiet contentment.
We went into town while he was napping and looked at the chile shops and turquoise. I bought chile fudge and a watermelon juice and some dragon leggings. They have literal dragons breathing fire on them. It felt apropos.
Nothing makes sense so why shouldn’t I buy dragon tights and a watermelon juice on a freezing day?
I used to think perfect didn’t exist. Not the word, not even the idea of something so without faults that there was no room for growth or improvement. It does exist. He is sitting next to me. Whining just a little, so I know he is here. He won’t improve or grow. This moment is who he will be forever in my mind. He is perfect.
I felt embarrassed after my meltdown at the airport when they wouldn’t let me on my flight. I had thrown a fit. I went into a rage. Now as I sit here on this cold Santa Fe day, as Emily is teaching her university freshman writing class, I realize that I was right to fly into a rage. I get to have this moment on this couch, in this room, all by myself with a perfect purring baby. I was robbed many moments when I was rerouted to Dallas. I want those moments back.
Emily and Rick’s whole life is going to be filled with wanting those moments back. With wishing to never have gotten rerouted. I know I threw into that rage for them. I was indeed trying to take just a little of their pain away.
I sit here with Ronan as he snores lightly. It is a calming sound, one I could listen to forever, knowing Ronan was right here.
Rick comes and takes him to feed him his lunch. Ronan smiles slightly, but it’s there. A smile. He is still here. He can purr and cry and smile every so often. The science fiction like reality of what is happening to him is still far enough way, locked outside in the October New Mexico sky, pummeled to smithereens by his ability to still smile at his daddy.
That which brings me to you is death, yes.
But that which brings me to you is also your life, sweet Ronan. It is your presence in the world, which right now, at this moment, is as spectacular as a million meteor showers as you lie on your back outside and watch the night explode into light.
Ronan passed away peacefully on Thursday, Feb. 15th at about 3:30 am in Santa Fe. He was surrounded by friends and family. In March of 2014, Emily and soon-to-be husband Kent Black welcomed Charlotte Mabel Eliot Black into the world.
This blog is beyond amazing, the love you have for your friend’s child will keep his spirit going, so sorry that his loved ones or any child should have to suffer with this awful fate. Not only as a gifted yoga teacher, but as a writer, your words provide much healing.
Were there words to utter that could make matters of the changing patterns as clear as crystal. Love now the blessings you have, and enjoy every precious moment. Thank you for sharing your experience so eloquently.
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Reblogged this on The Manifest-Station.
My son fought for ten years with Hirschsprung’s disease he lost his battle six years ago. My heart still hurts at his loss but reals in his life and I feel blessed to be chosen to be his mom thank u for sharing this story and all the stories u do
Kim Armentrout Robinstein proud mom to
I woke up and read this first thing as I was supposed to. I lie next to my son now and gaze at him as I have everyday since he was born…. all night long the night he was born because he had received a low APKAR score from the physician since his breathing was labored. There is no love like that for a child so my prayers to to this family and to Ronan. Thank You for sharing as I will hug and kiss my son a little harder this morning. God Bless!