May 27, 2012

A Dying Baby Teaches Me about Living.

That which brings me to you, Santa Fe.

Here I am in Santa Fe, sitting on a love seat, and 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, a deadly disease, is that which brings me to you.

A dying baby is that which brings me to you, Santa Fe.

Ronan, who has Tay Sachs Disease, with his mom’s book Poster Child across his chest. There is no treatment for Tay-Sachs disease itself, only ways to make the patient more comfortable.


It is cold here. Colder than I expected. There is an energetic shift within 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, but she thinks and feels a little differently. She is a little more somber and introspective, melancholy even.

The light patterns change, the air demands attention and the sky often meets you at the front door as you open it for a moment of season. They get season here in Santa Fe, 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 nine months. December dark—losing light at 4:30 p.m. 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, 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 refuse 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—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 not only be inspired by her, but would be her friend. It was fast like that. Love at first sight, if you will. Plus, she is an incredible writer and I am in awe of her mind.

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, if you ask me, a dirty disgusting habit which I have done since my dad died when I was 8 in an effort to be like him. I crack my knuckles and he startles. He may be dying, but his intuition is still spot on. He cries when he is tired, 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. The face of an angel is what stares back at you when you look at this baby.

No judgment, no fear, no lines of pain and a life lived, just beauty and quiet and 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 àpropos.

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 threw 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, and Rick, her husband, is asleep, 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.

Rick and Emily’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, that is as spectacular as a million meteor showers as you lie on your back outside and watch the night explode into light.

I urge you to follow Emily Rapp’s blog, “Little Seal,” and fall madly in love with her, her writing, and of course, baby Ronan. Emily’s book about Ronan, a love letter to her son essentially, will be out in 2013.

If you are interested in donating to Tay Sachs research please visit The National Tay-Sachs And Allied Diseases Organization.  In March, Ronan celebrated his second birthday. My hope is to be with him again one more time before he passes.


Tay-Sachs disease is a deadly disease of the nervous system passed down through families.

Tay-Sachs disease occurs when the body lacks hexosaminidase A, a protein that helps break down a chemical found in nerve tissue called gangliosides. Without this protein, gangliosides, particularly ganglioside GM2, build up in cells, especially nerve cells in the brain.

Tay-Sachs disease is caused by a defective gene on chromosome 15. When both parents carry the defective Tay-Sachs gene, a child has a 25 percent chance of developing the disease. The child must receive two copies of the defective gene—one from each parent—in order to become sick. If only one parent passes the defective gene to the child, the child is called a carrier. He or she won’t be sick, but will have the potential to pass the disease to his or her own children.

Anyone can be a carrier of Tay-Sachs, but the disease is most common among the Ashkenazi Jewish population. About one in every 27 members of the Ashkenazi Jewish population carries the Tay-Sachs gene.

Tay-Sachs has been classified into infantile, juvenile, and adult forms, depending on the symptoms and when they first appear. Most people with Tay-Sachs have the infantile form. In this form, the nerve damage usually begins while the baby is still in the womb. Symptoms usually appear when the child is three to six months old. The disease tends to get worse very quickly, and the child usually dies by age four or five.


Editor: Brianna Bemel

Read 13 Comments and Reply

Read 13 comments and reply

Top Contributors Latest

Jennifer Pastiloff  |  Contribution: 2,040