A Dying Baby Teaches Me about Living.

Via on May 27, 2012

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

About Jennifer Pastiloff

"Thank you Jennifer, for shining your light on mine." ~ Christy Turlington. / Jennifer Pastiloff, as featured on Good Morning America, is a lover of life, laughter, poetry, yoga, Modern Family (and a really good glass of wine.) She is the creator of Manifestation Yoga®, which is all about causing serious breakthroughs in your life without being too serious. Her rule of “If you fall you must laugh ” is strictly enforced in her yoga classes. / Jennifer teaches this inspirational style of yoga all over but her home base is in Los Angeles. She travels the world teaching workshops and leading retreats. When Jen's nephew Blaise was diagnosed with a rare genetic disorder called Prader Wille Syndrome (PWS), it prompted her to start GAME Yoga. Gifts And Miracles Everyday: Free Yoga for Kids w/ Special Needs. / Jen is in the process of writing a book about how to manifest your life, one laugh at a time. She is partially deaf and wears hearing aids. / Jennifer spent 13 years working in the same restaurant and believes that everyone should have a job in the service industry at least once in their life. (It’s good for the soul, she says.) / Learn more about her at jenniferpastiloff.com. Her blog is Manifestation Yoga. Follow her on Facebook and on Twitter.

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13 Responses to “A Dying Baby Teaches Me about Living.”

  1. MamasteNJ says:

    Jennifer Pastiloff, my sister friend.
    This is the most amazing tribute to Ronan, a life too short, but one that touches so many. Your eloquence is a gift to his family. You do know that Steve and your Dad are orchestrating your words.
    God bless this little angel and thank you for introducing him to me.
    You have that gift , of knowing exactly who to connect, exactly when to connect.
    I heart you Jennifer.
    Many many blessings.
    xoxo
    ~Mamaste

  2. ManifestYogaJen says:

    Thank you so much. Your words means so much to me.

  3. the life of a child is always precious and perfect….each one a light a lesson a joy. I can't imagine knowing that your child could be taken from you at any moment – but honestly any of them can at any time for any reason without warning or with a long drawn out agony — what is right is that you have those moments, those memories and that his "disease" makes each moment that much more important and poignant. Perhaps if we all lived as if we were dying…Oh wait we are dying — each day each of us, when we start living with that preciousness in mind it's a whole different experience. Each of my children seemed like angels to me – what if we experienced that with every child no matter if they are "healthy" or "sick"? what if each child knew this kind of love and worship?
    My heart aches for this beautiful soul but more so for the pain of his parents — my love, my hope, my prayers are with them, thank you so much for your beautiful post, indeed dying can truly be our best teacher of how to live. Much love to all you…and many thanks to Ronan for the lessons.

  4. ManifestYogaJen says:

    this made me cry. Thank you. am passing on to his mom, Emily.

  5. jamesvincentknowles says:

    Confounding & humbling to read such a thing and feel so much empathy and compassion that is so real it does indeed take pain away. That seems to be what love does, doesn't it? It removes pain and allows goodness to flow.

  6. ManifestYogaJen says:

    That's exactly what love does, James.

  7. Helen W. Mallon says:

    I'm so glad I stumbled across this. Life is so precious and because it's precious it's fragile. I hope Ronan will always remain strong in his parents' hearts.

  8. Lauren says:

    I’m floored by her unflinching honesty and strength. I’m sure she’s had a few meltdowns in the process of watching her son become blind, and then paralyzed, and now minimally responsive. I’m sure there have been days where she feels like giving up. Instead, she’s faced not only this monumental hardship, but also the feelings that come with it. She’s said (and I can agree and sympathise with her), that had she known beforehand she would have had an abortion. Would have spared Ronan the suffering he now faces at such a young age.

    I think, in a similar situation, I might have similar thoughts, but I’d probably keep them to myself. I’d hide them in the deepest recesses of my mind and try to ignore it. Instead, Rapp hauls them out into the light, and her honesty and frankness is both startling and awe-inspiring. Many people would condemn her for that statement – that she wishes she had aborted her son – but I see it as coming from a place of love and compassion.

    I don’t know how I’d survive it if I had to watch my son Mattie suffer as Emily has had to watch Ronan suffer. I don’t know that I’d manage to go through it, much less write about it so eloquently. I don’t know that I’d be so honest with myself, much less with other people.

    When I first read her writing about Ronan on the New York Times and Salon, I was floored. With a heavy heart and thoughts of a dying little boy and his dragon-mama, I couldn’t ignore the compulsion to go upstairs and give my son one more kiss. To rub his golden curls and whisper “I love you.” I am grateful, with every fibre of my being, that barring any ‘normal’ catastrophic development (car accident, cancer, etc) my son will outlive me, and that I will have a long time to love and enjoy him prior to my own death. Even if he were to die tomorrow, I’d be thankful for the time I’ve had. He’s shown me a love like none other. He’s taught me the meaning of dedication, of selflessness, of devotion. He’s reminded me of what it is to have a childlike fascination in the small things of life, and shown me that some times it’s okay to laugh for no reason whatsoever. In his fifteen months on earth, he’s brought nothing but light and joy, and I’m endlessly grateful that we get to keep him for a while longer.

    Emily's choice to come forward with her story – to live it publicly, in so many ways – can't have been easy. I think her, though, because it's given me a more clear perspective of my own life. When my son is being annoying or whiny, I find myself filling with joy and relief instead of the annoyance I once felt. When I kiss him goodnight, I take a moment to revel in the very fact of his existence, and soak it in with the knowledge that it could all be taken away without a moment's notice. From Emily we can learn to love fully. Wildly. Without reservation or expectation.

    Her views on it are so, so poignant. One paragraph has particularly stuck with me –
    "But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."

    I'm so grateful to Emily for opening herself to the world, and to you Jennifer for writing so touchingly about the ways in which Ronan simply *is*. May we all have a bit of the steady, loving determination Ms. Rapp displays.

  9. ManifestYogaJen says:

    wow Lauren, thank you so much for your beautiful comment. What a writer you are!!!!

  10. [...] is a word that people fear. It is also a fact of life that many people deny. It is ok, denial is a coping [...]

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