Browsing Tag

Little Seal

Binders, Grief, Guest Posts, healing, Little Seal, loss

Cartography for Mourners.

March 2, 2015


By Emily Rapp. 

The power of grief to derange the mind has in fact been exhaustively noted.

– Joan Didion, The Year of Magical Thinking


Maps to Anywhere (Numerous)

I hate maps. I can’t read them, understand them, interpret them, or follow them. I have a whole drawer full of maps and pop-up, fold out street guides for various cities, and although I take them with me when I visit these places, I never consult them. Instead I tote them around in my shoulder bag, my purse, my backpack, and ask people on the street for directions.


Map to a Funeral (Hidden)

It is mid-winter in downtown Chicago, and my parents, sitting in the two front seats of a rented mini-van, are huddled over a paper map. Exhaust billows in gray and black streaks past the windows. Commuters look shrouded and miserable, hurrying over frigid sidewalks in the rapidly fading light. I’m in the back seat with my ten-month-old daughter Charlotte, who is strapped in her car seat, babbling and cooing. She doesn’t know this is a terrible blizzard in rush hour, or that someone – my father’s mother, my grandmother – has died. We are driving from Chicago to Pontiac in a storm that feels as thick and relentless as the sound of the word blizzard on the radio, which is turned up high. People are frenzied, worried and watchful, the way people love to be about extreme weather conditions.

My grandmother has died at 93 after refusing food or fluids for two weeks, which is some kind of record. My son, at three years old, lasted only a few days with the same restrictions. Ninety years difference – a literal lifetime – between their ages at death. I struggle to understand what this means or how to absorb it, but generate no cogent thoughts.

Beyond the city limits the interstate is a blur of red and blue emergency lights, car blinkers switching on and off in irregular patterns that compete with the holiday hangers on who leave their Christmas decorations up after the new year. The drivers in the cars stopped on either side of us are reading newspapers spread out over the steering wheels or tapping into their phones, having given up changing lanes. One woman is slumped over, face in her hands, weeping.

My daughter poops her diaper, and I unstrap her from her safety restraints and change her in the unmoving car. My parents are bickering. My brother is waiting at the airport. We’d gone to Soldier’s Field to see the Aquarium, but ended up looking at twenty-year old exhibits of stuffed animals: antelope and bears in permanent yawn, taxidermy tails stalled mid-air. I crammed us all into a photo booth in our last fifteen minutes, because I had an enormous glass of wine for lunch and because we need to laugh.

“We should never have gone.”
“Who could have known we’d get stuck in a blizzard.”

This conversation continues on endless repeat, my parents trading lines between them until I threaten to throw the diaper into the front seat if they don’t change the subject. “Don’t think I won’t!” I shout, and feel like a teenager on vacation with her parents: petulant and trapped, self-righteous and unhappy.

We make it to O’Hare and pick up my brother and my nephew. My dad argues with the security guard, telling her that the airport is designed to be confusing. I tell him this is certainly not true. Through the open van door I toss Charlotte’s diaper into a curbside trashcan.

An hour from O’Hare, far from any lights, wind, snow-thick, swirls white and erratic over the roads mainly clear of cars but still treacherous. My dad drifts between lanes, floats across medians. “You’re fucking scaring me!” I shout when he crosses a road without looking in both directions. My brother glares at me for cursing in front of his ten-year-old son.

We stop at a town outside Chicago, at a sports bar, where six men wearing orange vests sitting at a table turn to stare at us when we walk through the door. We have been in the car for nearly ten hours. When I tell my friend Gina, a native of Chicago, where we ended up for dinner, she tells me she’s lived in Chicago her entire life and I’ve never even heard of that fucking place.

A waitress accidentally spills a beer on my father’s lap.

“This day is shitballs,” I tell him, and hand him a stack of napkins.

“Yep,” he agrees, but he’s laughing. He leaves the apologetic waitress a generous tip.


Map to a Church (Unnecessary)

The route to my grandmother’s funeral service is a straight line from the hotel to the church down a road lined with two-story houses, all fenced yards and large wooden porches, the sidewalks stacked on both sides with fresh snow that blows away in sporadic blasts of arctic wind to reveal weeks-old snow covered in soot, stamped with boot and paw prints and pieces of dog shit. The church is near the town lake, where a group of geese huddle together looking stunned and miserable on ice the same color as the wall of cold sky that seems almost low enough to touch the frozen water. I think they’re geese. I know they’re not ducks. I’m not a poet. I don’t know my birds. I don’t know an elm from a poplar. I’m a little bit better with flowers. I know a blue spruce because there was one in my yard in Santa Fe, and it was the one pop of color on the gray winter day two years ago when my son died.

“Don’t they migrate somewhere warmer?” I ask. “Those geese or birds or whatever?” Nobody answers me. At the church, my brother and his son leap out of the car and sprint across the parking lot. The frozen lake reminds me of another frozen lake in Minnesota where I spent one weekend listening to Joni Mitchell records and writing bad poetry (I didn’t know my birds then, either) with a group of college girlfriends; another frozen lake in Wisconsin where I watched five continuous hours of CNN on the first anniversary of 9/11. Both events seem whole lifetimes ago, memories connected to my current life by delicate filaments that show their strength in the strangest moments.

I pick my way across the parking lot with a bundled Charlotte in my arms. Inside people are milling about in front of a funeral board: pictures of my grandmother as a young girl on the farm, on a horse, in the early 1940s with my father in a cute suit, standing in front of a flat white house, with her parents, who are expressionless and shaped like barrels.

My grandmother was cruel to me, and I am not sad that she is dead. I feel like 93 is a pretty good run. She was rarely sick. She had friends and was comfortable.

My dad speaks first, and he tells the congregation that his mother once told him that he could have searched the whole world over and he never could have found a better wife. This is for my mother, to whom my grandmother was also cruel.

The minister gives a dorky eulogy about salvation that doesn’t happen “in the big city,” but instead in “a little church in the prairie.” His language feels vaguely pornographic to me, all this talk of being “chosen” and “choosing,” and my grandmother saying yes to God, again and again she said yes. I can’t stop thinking, sitting in the back pew nursing my child where nobody might happen to see my breast, that there’s no way this guy voted for Obama.

The only time I feel moved is when my second cousin’s husband sings a solo, halting and occasionally off-key version of Beautiful Savior at the lectern. He struggles through all of the verses without looking up. In front of him, on a table decorated with flowers, my grandmother’s ashes are in a simple black box.

After the funeral we eat fried chicken in the church fellowship hall. My grandmother’s sister introduces me to a man who is clearly suffering from dementia.

“This is Emily,” my great-aunt says. “She wrote a book about her baby who died.”

“Who are you?” he asks. “Did somebody die?” He looks around the room. Someone is slowly releasing a Jell-O mold onto a plate in the kitchen. A woman in an apron dumps more chicken into a bowl on the buffet table.

“My grandmother died,” I say. “Lois died.”

My great aunt is frustrated. “Listen,” she says, tapping the table in front of the man.

He looks at her, then at her hands. “Yes? Who are you?”

“I’m Emily,” I say.

“She’s a writer,” my aunt continues, “and her first book is all about…well,” she says, and flaps her hand in the air. “You tell him how you was made wrong.”

Continue Reading…

Little Seal, loss, love


January 10, 2013

I am sharing this again because it is so dear to me. Please read this. Please send Ronan love and prayers that he is not scared when he passes. He is a the end of his little life. Love you guys. Thanks for reading this one. Please share it.

The Land Of Enchantment.

A couple days ago, we took a road trip.

Emily, Ronan, and me. Two-year-old 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 marveled at trees and patterns of light and talked 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 was the The Chimayo Sanctuario.

It was hot when we stepped out of the car, hotter than it has been in Santa Fe. Gusts of warm wind blowing my dress around in a way that would normally make me laugh and feel sexy and silly, but this day, I immediately felt tired and wanted to lie down in the little outdoor church area. Growing up as a Jew, at least until I was eight, I didn’t really know what to call that little area, but I knew I wanted to lay my head down on it and rest as people walked by and snapped pictures or prayed. Some smoked cigarettes, which felt somehow unholy given the heat.

Emily had told me as we walked that Chimayo was the meth capital of the world. I watched the smokers in front of us and wondered what meth felt like. I didn’t really want to know, but we were in the capital and the heat made me tired and curious.

Emily had said that she loved Chimayo and that it had holy dirt.

She had me at holy dirt.

My hearing had been especially horrendous during this trip. As if there are things here that mustn’t be heard. Things of loss and heat and dirt and dying babies. Most of the things she told me during this visit I only half-heard, so maybe when she said holy dirt, she didn’t say that at all.

But there is holy dirt here indeed!

We entered the church and sat in the back. The art on the walls somehow reminded me of my mother, so I kept whispering to Emily how my mom would love it here. It was vibrant and colorful, its beauty simple and poor-looking. I knew my mom would love the folk art like Emily did. We traced our fingers over the woodcarvings and the blue of the pregnant bellies.

There were a few old women up front praying, their mouths repeating the same shapes over and over. Although I did not know what they were saying, I knew that they were deep in reverie, deep in connection, somehow sitting on the bench and yet also floating somewhere with a dead relative or baby or Jesus himself. Who knows? They were in a trance but also somehow aware of us as we walked by, enough that they smiled with their eyes and part of their lips without stopping the flow of prayer. It was like a magic trick. I felt weird to stare yet I did.

I mean, I suppose I went in there to pray in some way, although I didn’t know it until we walked through the door.

I didn’t even know what Chimayo was until we got there. But these women were praying with every ounce of their bodies, like they were born to do this and had waited in a long line of life events that included births and deaths to get here. I was just hoping Ronan wouldn’t suffer and that Emily would be okay. I didn’t even have a real prayer. I just quietly looked over at them and then to the front of the jaw-dropping gorgeous New Mexican church and sent a wish out to the Jesus statue in whatever language I could muster.

I think I put my hands together in prayer, like I do when I teach yoga, and asked him in sign language “Please let Ronan feel nothing. Please let Emily feel something.” 

We went to the room where the holy dirt was, and it clearly said No Pictures, but, naturally, being me, I took a few. I am like a thief when it comes to inspiration. Whether words or images, if I see it and it touches that place where things are born, I must capture it.

I took some photos and then Emily went in and scooped up some holy dirt and put it on Ronan’s sweaty head and his little feet where she had painted his toenails a gold, glittery color. I went in and did the same. I also took a little baggy of it for my sister or anyone else who needed holy dirt. Who knows, maybe I needed it?

We went into the Vigil Shop where they sold popsicles and chile and souvenirs. (They even ship chile! The sign out front boasted.)

We agreed, as we stood under a tree for a moment of relief from the sun, that the land felt different here.

I felt much like I do in Ojai, California, where I lead many of my yoga retreats. More connected to the land, more inspired and awake, like there was a current running through me that had been asleep but, upon stepping in holy dirt, was reignited. Like I became a person again after a long time of forgetting how to be.

Chimayo felt sacred in the way that The Père Lachaise Cemetery in Paris did in July, when I went to see where Jim Morrison was buried, not because I wanted to, but because I was dragged. I went with my childhood babysitter, with whom I had been reunited after her only son, age nineteen, was killed in a drunk driving accident last August. It was her greatest wish to see Jim Morrison’s grave. I was annoyed at having to go, especially because it was half-raining, I was sick, and we got lost, but once we got there, it was like nothing else. All the tombs like little houses, each different from the next in the most beautiful ways. I wanted to lie down on them and see what it felt like—not in morbid way, but rather to be connected to such beauty. Rarely have I seen such beauty associated with death.

I felt like that in Chimayo—far from Paris, Jim Morrison’s grave, and Ojai but with the vast knowledge that the holy dirt was the same. If I tasted it in Paris or California, or if I knelt down in that little room in Chimayo, it would all taste the same. I would be healed or I wouldn’t, but it would be the same. I wasn’t really far from beauty wherever I was in the world at any given moment.

We carried on to Taos, and I remembered the first time I had been there.

I drove across the country with my mother, sister, and best friend at the time. I remember eating tuna fish from a can in the back seat and alternating drivers. I remember the colors in New Mexico being so different from what I knew growing up in New Jersey and California. In Taos, I had a flood of memories, which is good because I am writing a book, but I had to shake them off to be present for Ronan. What if this is the last time I see him? 

Emily says maybe it will be, or maybe not. No expectations is what she is working on. No expectations of what his death will be like, whether or not she should travel to Germany for a week in October (because it could as easily happen while she is teaching or at the store). No expectations of what life will be like after.

As we sat in the chapel, Emily told me of the pilgrimage people make to come to Chimayo, the last mile or two on their hands and knees so they arrive bloody to the church for their penance. I was in disbelief that people still did this sort of thing but also in awe at the sheer will and belief in what is possible, in miracles and magic and holy dirt.

There were children’s shoes and booties everywhere, left as offerings, which made me feel sad as I sat there with Ronan because he would never wear shoes to walk or run or to look cool for a girl on a first date.

He would never walk or crawl on his hands and knees to make a pilgrimage.

That’s when I decided that I would make one for him. That actually that is what we were doing out there in the hot New Mexican sun as we walked on bridges and stood in churches and sat in cars.

Here we were, eating holy dirt and driving through The Rio Grande Gorge as we listened to bad music. We sang out loud, and it was all for him. It was all so we could keep giving him these particular pieces of ourselves, these grains of holy dirt, to take with him wherever it was he was going.


Please order Emily Rapp’s book. It will be out in March. I just finished it and WOW. Click here.


Guest Posts, Little Seal

Closing the Exit Door. Guest Post by Emily Rapp.

November 20, 2011
The following guest post is by my favorite writer and dear friend, Emily Rapp. Many of you know her already because I talk about her endlessly. Some of you may even follow her own blog Little Seal.  Emily is a great source of inspiration and love for me. I urge you to take the time and read her words. Also, my Manifestation t-shirts are an effort to raise money for Tay Sachs, as well as Prader Willi Research. It is my greatest honor to introduce you, Dear Manifesters, to the brilliant and gorgeous Emily Rapp.

Closing the Exit Door by Emily Rapp

When I first learned that my son, Ronan, would die before he turned four years old of a rare, progressive neurological disease called Tay-Sachs, I felt too sad to live. I thought I cannot stay awake.

I thought I want to die.

All of the self-destructive coping mechanisms I had relied on in the past – binge drinking, starving, extreme exercise, overworking, impulse shopping – were no longer any use to me. There was no place to go where I did not feel pain. There was no method of transformation available to me, which is another way of saying that there was no exit door. For several months grief became my life, and for the rest of my life grief will be a major player in it.

How do people survive a world when every step forward feels like dropping through a trap door? Some people don’t.

In 1944 my grandfather, a man from whom I inherited my red hair and many other traits (I’m told), shot himself with a rifle in a hot barn. Nobody knows the full story; nobody knows why. Was it depression, addiction, or a combination of these? Did the same fate await me, the recipient of at least some of his genetics? He was a unique man in a unique position in a unique period of time: an Irish Catholic father of two who, if he had asked for help for his depression or addiction or other problem, would have had limited resources. Depending on what he needed he may have been judged harshly by his conservative rural community, maybe even been outcast. The fact that my grandfather took his life makes me much more likely (if you believe in statistics) to do the same. I understood this in the first thunderous days after Ronan’s diagnosis, and I was afraid.

I understood the deepest shadow side of myself.

But when I looked at my fear straight on, a strategy I learned, in part, from yoga, I found something I hadn’t expected – not an exit, but an entrance.

When I looked into the fire of my grief and despair, and then sat down in it, then got familiar with it (tasting, touching, breathing, smelling, eating it) I found a new coping mechanism – my vocation as a writer – to be the only one that offered any assistance, any help at all. I couldn’t have been more surprised. Up to that point, most of my life as a writer consisted of procrastination, spurts of inspiration, cross country trips to residencies where I spent the bulk of my time “getting settled in my new environment,” racing to meet deadlines, and hours and hours logged at coffee shops in Austin, Texas and Provincetown, Massachusetts, and then West L.A., staring at a painfully white screen and longing to write while simultaneously wishing I’d already written whatever it is I was attempting to write. Not anymore. Writing became (and perhaps it always was) a compulsion, a necessary ritual fueled by a desire as strong as wanting that next drink, that next award, that next expensive sweater, that next (and even lower) number on the bathroom scale, only instead of tearing my world down to its most destructive components, it made my world huge, massive, much bigger than I ever thought it could be. I wrote a book about my son to keep me in the world, and I’m still doing it. Writing closed that particular exit door. It kept me in the room of my life.

I try to imagine myself, years from now, without my son, and I try to envision what I want that life to look like: chaotic, filled with dogs and children and books and good food and cheap wine and brilliant friends and travel and hours of contemplative thinking time. Space. Room. Joy. Light. A life of the mind; a state of the heart.

Some may believe this is heartless or cruel, to fast-forward to my life without Ronan, to try and manifest a vision of this happiness, but without this future-directed act of manifestation, an activity I’ve learned much about from Jen’s yoga classes and from her presence in my life, I couldn’t imagine and I couldn’t write, and if I couldn’t write I couldn’t live. Without the hint of this promise, we look to our lives and see only ways out, doors to the outside, an overabundance of possible exits.

Yoga teaches us that we are both limited and enhanced by our desires, and the energy behind them can serve you – through breath, meditation, mindfulness. Sitting in a room with other people, moving and making shapes with the body is a kind of magic, but it’s also a kind of meditation, manifestation, a kind of necessary work that can last throughout your life and also help you live it.


I hope you will all consider buying a t-shirt or spreading the word about them in an effort to raise money for research and to help with any costs Ronan many need.

Order one here.

Manifesting Your Life,

One Laugh at a Time,

Jen (JenPastiloff on Twitter)

Daily Manifestation Challenge

RUN-DMC. Today’s DMC.

November 17, 2011

DMC= Daily Manifestation Challenge

I had to do it.

Get it? The DMC as in Daily Manifestation Challenge?

Do you ever feel like running? As in: running away from it all? As in: not being present? As in: escaping your life? As in: feeling like if you moved away life would be somehow better? 

Today’s Daily Challenge is about the idea of running away rather than looking within or at what is.

For a long time, it was not just a a metaphor for me. I literally ran and ran and ran. I was an exercise-aholic. Instead of facing anything in my life, I simply ran.

When I was 18 and I got a call that my step-father Carl had died in his sleep, I simply hung up the phone, laced up my sneaks and ran for two hours around Cooper River in New Jersey. It was an old habit of mine, this not wanting to feel anything.

I am sure it was the same impetus that drove me to get skinnier and skinnier. The less I weighed the less I felt. Bla bla. You have heard all of these things before if you have ever known someone with an eating disorder.

I eventually got tired of running.


Run-DMC (They love my DMCs!)

I discovered yoga. I discovered that if I sat quietly with myself I could begin to heal old wounds and, more importantly perhaps, I could begin to be present in my life.

I spent many years being very much not present.

In fact, I can barely remember my 20’s.

I know sometimes life sucks. There, I said it.

I have a friend that you all know by now, Emily Rapp, whose baby is dying from Tay Sachs. I am sure in her fantasies she wishes she could just run away from her life.

Ain’t gonna happen.

She writes a daily blog about what she is going through called Little Seal, she exercises (a lot), she teaches her writing classes at the University, she is publishing a book, she calls her friends for support (me) and she sits with her sweet baby and husband and tries to be present as best she can be.

She does what she needs to do even when the impulse is to RUN!

Today’s DMC: Where can you stop running in your life? Where can you look at what “is” and accept it. (Remember the mantra from an earlier DMC: “And so it is“?)  Have there been instances in your life where you have run away? Please share any and all comments about this idea of Running. I am really looking forward to hearing your thoughts, Brave Ones.

Keep Manifesting Your Life,

One Laugh at a Time,


PS, if you want to support Emily and baby Ronan who has Tay Sachs buy a Manifestation T-shirt. All money goes to charity. Click here. And if you are not getting a shirt but still want to pay it forward, please share link. It also goes toward Prader Willi Research, which my nephew Blaise has.

And Dear Manifesters, please stop running. Walk instead. In fact, walk this way…..




And speaking of Run-DMC, follow RevRunWisdom on Twitter. How do you like that? Used to be in Run-DMC and now is a motivational leader. So inspiring!


Daily Manifestation Challenge

The DMC: Daily Manifestation Challenge. FAITH.

October 13, 2011

Ah, Faith.

You gotta have it.




I cheated on my fears, broke up with my doubts, got engaged to my faith and now I’m marrying my dreams.

Today’s Daily Manifestation Challenge is about Faith. I actually asked a friend who is going through a hard time what my challenge should be today. In particular, her baby boy is dying from Tay-Sachs Disease.

She gave me a list.

I will slowly work through the list. Day by day. As she does.

So she is struggling with Faith.

I get it. I struggle with it a lot too.

Wikipedia says:

Faith is trust, hope and belief in the goodness, trustworthiness or reliability of a person, concept or entity. It can also refer to beliefs that are not based on proof (e.g. faith that a child will grow up to be a good person) . Religious faith is a belief in a transcendent reality, a religious teacher, a set of teachings or a Supreme Being. Generally speaking, it is offered as a means by which the truth of the proposition, “things will turn out well in the end,” can be enjoyed in the present and secured in the future. The concept of faith is a broad one: at its most general ‘faith’ means much the same as ‘trust’.

I get it: how can she trust in the Universe when her baby is being taken away from her? How could one ever have faith in anything again after that?

It’s a tough one. But the alternative is grim. If you lose faith or hope or trust or whatever word most aptly describes ‘faith’ to you, it becomes a slippery slope.

A slippery slope until you become simply a shadow of who you once were.

Take a look at your life and where faith plays a part. When do you experience faith or a lack thereof? For me, I feel faith in myself when I can clearly see that something I have said or done has helped someone have a breakthrough in their life in some small way or when one of the kids I teach yoga to with special needs learns how to Om. I feel faith in myself when I realize that I have found my bliss and the world is conspiring in my favor. I have faith in my nephew Blaise who struggles with Prader Willi Syndrome when I see how many strides he is making daily. The list goes on.

I used to think God hated me.

I decided that at a young age because a few things happened in my life that I could not comprehend. I did not understand what having faith meant for a long time. I had faith at a young age it and what good did it do? My dad still died at age 38.

I realize now that faith is renewable. At any given moment I can restore it.

I have found things that allow me to experience faith and I revel in what that feels like. I trust in things again. I allow myself to believe. Not just in myself but in human nature and kindness and love and all things that I once had lost faith in.

It is not always easy.


         To one who has faith, no explanation is necessary. To one without faith, no explanation is possible.
         St Thomas Aquinas quotes 

Faith and trust , in my universe, are much the same. At the moment, I am out of words to offer my dear friend Emily who is losing her baby. I do, however, have faith in her talent and humor and kindness and beauty and courage. I have faith that her book will sell and help many others who are experiencing similar grief.

Today’s Daily Challenge: You Gotta Have Faith!

In the Comment Section Below write where you have faith in your life or where you are lacking it. Where you may be struggling with faith. Or simply what Faith means to you. Can you renew your sense of faith in yourself? In love? In your career? In the Universe? In wherever it may be that you are lacking it? Can you offer someone else some glimpses into faith, someone who may be struggling? It’s not always easy, these daily Manifestation challenges. But they will get you to take a look at your life, and, if it’s applicable, make a shift or two.

Are you ready?

Be faithful in small things because it is in them that your strength lies.
Mother Teresa 


Little Seal, There Are No Words To Describe This

That Which Brings Me To You. By Jen Pastiloff.

October 6, 2011

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.

Ronan with his mom’s book Poster Child across his chest

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.


There Are No Words To Describe This

Little Seal.

October 4, 2011

The following is a copy of my dear friend Emily Rapp’s blog post. I felt compelled to share it on my blog because I want each and every one of you to read it. Read it and share it. And share it again. I am flying to Santa Fe in an hour to be with them. Stay tuned for my own words on my trip, although they may just be empty and filled with air. 

Look at Ronan's sweet little hands


The Weight of Things  (originally published in The Nervous Breakdown)

Or I guess it is the handkerchief of the Lord,

A scented gift and remembrancer designedly dropped,

Bearing the owner’s name someway in the corners, that we

may see and remark, and say Whose? – Walt Whitman, from “A child asks, what is the grass?”


I am kneeling in the garage, sorting through a black garbage bag stuffed with Ronan’s outgrown baby clothes. I have promised to give them away to a friend of a friend who knows a friend who is raising a little boy on her own. I want to do this good deed; it makes me feel good to think about trotting off to the post office with a taped up box full of clothes for this woman I’ll never meet, a boy I’ll never know. But as I sort through the onesies printed with dogs and dinosaurs and stars, a green onesie with “Organic Baby” printed over the outline of a leaf; a cream-colored onesie with “I Am a Magical Child” printed in cursive over a picture of a unicorn and a dragon; a shirt that reads “Mr. Happy” and that I remember Ronan wearing on a day when he screamed for 24 hours straight; tie-dyed onesies with matching hats and missing socks and hand-me-down onesies and bear and lion and jungle animals onesies; blue and yellow t-shirts covered in stripes and stars and balloons; a fox sleeper in the orange, white and black colors of my junior high cheerleading outfit (foxes are an underused animal on little boy baby clothes); tiny striped shorts and long pants with more puppies and pandas; jean jackets and Osh Kosh overalls and corduroy jeans and cargo pants (what does a baby do with pockets?); the Pooh t-shirt with matching Pooh pants (yes, there was a poop joke); shirts that say “Doggone Fun” and “Surfer Baby” and “Handsome Like Daddy” and “There’s a Nap in my Future” and button-up shirts and polo shirts in different shades and textures and patterns and prints; a pale yellow cotton one-piece with a collar and a fire engine stitched on with a door that actually opens and closes, real snaps at the neck, even a little fabric flap for the firehouse dog who is wearing a red hat (this last outfit belonged to my brother), I shut the plastic bag and weep. I feel as though I have just peered into the deep pit of a grave. I can picture Ronan in every little outgrown outfit: the skinny-legged, newly born red-faced alien Ronan; the round bowling ball face five- and then six-month Ronan; the one-year-old Ronan with the light already fading, just a bit, from his eyes. The floppy toddler Ronan who is now double the size of these clothes and dying fast from Tay-Sachs, this ridiculous disease with no treatment and no cure. I could not give them away. Not yet. I’m not ready to let those clothes loose to live another life on another baby’s body. I’m not ready to even let them out of the bag, as if they are dangerous and if released might wing away and wound someone. I want them for myself. I want to get in the bag and eat the clothes like some starving animal, some desperate creature. I scold myself: these are just things, nothing more. Just objects, and, even more importantly, items other people need. I still can’t do it.

This is a sentimental moment, I guess. On a sympathy card there might be a bunny, a lovely, red-and-gold painted sunset, the dark silhouette of a bird flying over a beach, a shiny horse running free, a dreamcatcher and a hawk doing something symbolic. I don’t like this moment with the clothes any more than I like sympathy cards or funerals, which so easily and lustily dip into sentimentality. I feel dangerous, churning. This sentimentality masks a deep and terrible rage. Bunnies=Rage. The murderous kind, the bite-your-lip-until-it-bleeds kind, the kind of anger that makes you exhausted and yet howling for more, like a belly that can never be filled. The only appropriate card for this moment, on my knees in the garage, is an empty one, maybe one that screams when you open it – one great, long keen. Some deep-noted dirge; some furious, melancholic song full of discord and drums. The responses I found most satisfying – like a bell ringing out the hour — after Ronan’s diagnosis were these: I am so angry; I am thinking of you with grief and rage; I don’t even know what to say I am so angry; it is so unfair; I am sick to my stomach with sadness and anger; BLOODY UNFAIR!; I LOVE YOU and also, WHAT THE FUCK? RAGE! Sympathy cards are about as useless as candy cigarettes – just give me the real thing. I’d so much rather have an email that says something brutal and terrible and true than a sympathy card made of special-grade parchment and that’s soft to the touch, even the edges gently serrated and decorated with loathsome, uniform birds (there is a standard sympathy card bird; it’s like clip art) flying peacefully into the distance and a super shitty rhyming poem inside. (I do not even dare type them here for fear of expanding their odious reach.) I’d rather have this poem, “Matins,” by Louise Gluck, which is the one that comes to mind while I’m bawling into a plastic bag full of Ronan’s old clothes. I look it up later:

You want to know how I spend my time?

I walk the front lawn, pretending

to be weeding. You ought to know

I’m never weeding, on my knees, pulling

clumps of clover from the flower beds: in fact

I’m looking for courage, for some evidence

my life will change, though

it takes forever, checking

each clump for the symbolic

leaf, and soon the summer is ending, already

the leaves are turning, always the sick trees

going first, the dying turning

brilliant yellow, while a few dark birds perform

their curfew of music. You want to see my hands?

As empty now as at the first note.

Or was the point always

to continue without a sign?

Why can’t that poem, that little missile of grief, come printed in a card? I’d happily weep over it or frame it or burn it up in some meaningful ritual fire. When I open the pastel envelopes and see the birds and the sunsets and the birds scrolling into the gentle sunset, I chuck them straight away. I don’t even wait to see who sent them and I don’t care if this is cruel.

Who knows if I would feel so unaccountably devastated about giving away outgrown baby clothes if Ronan were not dying. I know plenty of moms who’ve blubbered as they’ve sorted through baby clothes; even if their child is a teenager, sulking grumpily in his man cave and playing video games and trying to watch porn or smoke pot when his parents aren’t looking. In any case, the baby stage is lost, gone for good.

And yes, they are just clothes, but just as the body carries physical and psychic weight, so do things: a favorite shirt of the beloved, obvious objects like wedding rings, but also random things given and received: a map my best friend made for me ten years ago that shows me the way from the train station to her house; the lyrics of a song written on a napkin that I sang at her wedding outside London, the paper growing damp and gooey in my sweaty palm; my DUKE sweatshirt that I stole from someone’s brother in high school and wore superstitiously for four years during finals week; a creamy flowered blouse that reminds me of France and a steamy night spent necking in a Strasbourg car park with that blouse in a pretty ball on the floor. Mouse-sized menorahs and engraved cigarette holders found in the corners of tenements and on display now under glass at the Tenement Museum in New York City, precious items that were tucked into underwear or satchels or shoes and that crossed continents and made it through the gauntlet line of checkers at Ellis Island (early, less technologically advanced versions of today’s snarky TSA agents) to be found, decades later, abandoned, in a corner. And things mattered more then, too, because people had fewer of them. Things are charged, they act as gateways, and we want to believe they give us access to the person who once inhabited them. We want to believe that they are doors to other worlds, portals to unknown stories that we intuit even if we don’t know them for certain or for sure. I have a cheap dress – blue polyester with red and white piping on the bottom and the sleeves – that puts me chain smoking in my office in Geneva on a blazing hot spring morning, the view across the garden thick with pink blossoms. My Doc Marten boots were my Ireland boots, trekking boots; I literally wore them out, the back soles were finished. When my mom was given her mother’s old cameo necklace from her cousin when we visited her farmhouse in Kansas on one of our summer cross country trips, she said “Oh,” almost mutely, amazed, her eyes filling as she turned the necklace over in her hands like a piece of delicate lace. I saw her seeing it on her mother’s throat, her mother who had been dead for 40 years and had been given this piece of jewelry, now falling apart, by an old boyfriend that was not my mother’s father, who was also dead. I restrung the necklace and wore it at my wedding to Rick. Things matter, things endure when people and relationships do not. Things: simply lasting, then/failing to last: water, a blue heron’s/eye, and the light passing/between them: into light all things/must fall, glad at last to have fallen. (from “Things,” by Jane Kenyon).

In Sum: Forty Tales from the Afterlives, David Eagleman’s stunning, playful, and at times devastating book, he imagines all sorts of after-death scenarios: comical, heart-wrenching, unfair, unbelievable, wonderful. Here’s a snippet from Graveyard of the Gods, one of my favorites:

You begin to realize that the gift of immortality applies to things we created, as well. The afterlife is full of cell phones, mugs, porcelain knickknacks, business cards, candlesticks, dartboards. Things that were destroyed – cannibalized naval ships, retired computers, demolished cabinetry – all return in full form to enjoy and furnish the hereafter. Contrary to the admonition that we cannot take it with us, anything we create becomes part of our afterlife. If it was created, it survives.

Just after I turned fourteen, when we were moving from Wyoming to Nebraska, before my parents found a house to buy we stayed in rented rooms at the top of an old museum attached to Bethphage Mission, a residential home for mentally retarded adults, although I believe they were in the process of changingretarded to delayed. The museum had clearly not been visited in years, maybe decades, because although it was of historical interest, I can’t imagine anyone pulling first off the interstate and then off the dirt road to learn about the history of nursing care when this facility had been a straight-up mental asylum and not an assisted living home. And if they did, they’d be out of luck, because the museum was apparently open for exactly one hour each week, when the door was simply propped open with an old book. There was no entrance fee and anyone could have taken off with what was inside: mannequins with 1960s beehives modeling nurse’s outfits from the 1940s that glittered with dust when the hazy fall light fell through the dirty windows; cobwebs stretched across pointy chests as if they were part of the fabric pattern or bras worn on the outside of blouses. Old shoes – once-white clodhopper nursing shoes, one pair of fancy lace-up boots, a pair of square-toed, ratty heels – were piled in a corner. Carefully I roamed through those empty rooms, walking slowly through the bones of those other stories, scaling some falling-apart ladder of time. I felt I should hush my footsteps although I was alone, as if I were disturbing the things, which might have a life of their own. The rooms felt populated. A few windows were open and the air was typical of autumn in the Midwest – crisp and expectant, things turning and falling and changing – but no season was going to penetrate these unvisited and neglected rooms. You had to stick your nose out the window like a dog riding in a car to get a whiff. My breath practically echoed. I walked in the museum to scare myself, as a distraction from other concerns. “What are you DOING?” I’d hear my mom call from the top of the stairs leading up to our “residence.” I was fourteen; I ignored her. “We’re having beef stroganoff for dinner,” she called into the silence. “You’ve got ten minutes,” she said, and I heard the door click shut.

There were books and made-up beds, and a “model” of a room where “treatments” had been administered. An old wooden cabinet marked with a sign that read “surgical tools,” had apparently been plundered. The creepiness of the museum almost made it impossible for me to sleep above it; I was certain that all those things down there were alive. Those mannequins moved I told my dad. At night they walk around and do stuff! The feet of one of them moved an entire inch! I measured! The other story was that someone was outside in the prairie, a stolen scalpel in one hand, preparing to run up the stairs and plunge it into our unsuspecting hearts, one by one. Who would ever find us in the middle of nowhere Nebraska at the top of a museum that was NEVER OPEN? We never saw a single resident, as the museum faced the street and the “campus” was on the other side of the building. This was the end; I just knew it. We were toast. My middle-of-the night histrionics were draining my parents’ energy and robbing them of sleep. “You’re not a child!” my dad said, exasperated, all other logic having failed to convince me that we weren’t about to meet some inevitable and gruesome end. “Don’t let your imagination run away with you!” But run off it did, and I went with it. The need to find a house gained greater urgency.

I also got my period for the first time in the cold, institutional-feeling bathroom attached to our “rooms” (two twin beds in three plain, identical-looking rooms); and so I’d walk around, fingering the outfits on the mannequins, smelling the cold dust, slowly eating peanut M and Ms from a one pound bag, feeling the inside of my body buck and kick in a way that was painful but not wholly unfamiliar. I was a woman now, apparently, for whatever that was worth. In one dim corner of the museum, on a slightly raised stage stood an old-school crib with rockers on the bottom and a faded, ruffled top. Displayed on nearby tables were yellowed baptismal gowns, tissue-paper-thin, with matching hats, puffy like the tops of muffins, that were worn by some baby long ago, a baby who had lived and died probably hundreds of years before I walked by munching chocolate and bleeding. I sat in the empty, claw-footed bathtub and wrote mournful letters to my friends in Wyoming and yelled at my parents through the door. Then I got mono and slept in the car while my parents shuffled in and out of potential houses. Much to everyone’s relief, I no longer wanted to move or haunt what I was sure were those haunted rooms full of haunted things. Things with life, things with stories, things that breathed in their own lifeless yet very real way.

Things, things, things. I am a collector of things. I have a storage room full of books, a box full of artificial legs, old cotton cloth Esprit bags full of scattered photos from junior high, me sitting in clumps of girls at pizza parties and sleepovers, sticking out my chest in an effort to look busty and gregarious. (I was flat-chested and miserable). At least ten jewelry boxes stuffed with cheap and ruined jewelry, rhinestones and crystals and rusty charms shaped like tigers and elephants. Boxes of letters and three boxes of all the cards I got as a kid when I was in the hospital. A box of prom dresses and bridesmaids dresses, more boxes full of journals and math workbooks and yearbooks and notes that I passed and that were passed to me in junior high and high school. Someday, when my parents move out of their house and clean out their basement for good, I’ll have to reckon with my pack-rattish self. But not yet.

Since Ronan’s diagnosis six months ago I have begun adorning myself: a ring for every finger, an engagement ring that was my husband’s grandmother’s; a wedding ring from the same year – 1932 – that Rick and I found in a pawn shop in Los Angeles and that fit me perfectly – “a princess fit!” the saleslady cried gleefully, and the Cinderella sound of that pleased me; the claddagh ring I bought the day I arrived in Dublin in 1994 for five Irish pounds, pre-Euro; the ring my mother gave me for college graduation, interlocking loops of Celtic knots; a ring that says joy love hope recently purchased at an airport shop in Phoenix, hoping the words would rub off the silver and into my skin; a ring that’s a long sheath of silver with slits where the skin shows through; a dragon ring for my thumb. Around my neck a locket with Ronan’s hair and a picture of his face tucked inside, his birth date 3/24/10 engraved on the back below his cursive name, a gift from my mother for Mother’s Day. A silk chord swinging with my box of holy dirt, my Buddha, my Santa Nino charm from Chimayo, New Mexico, my power animal gorilla charm that a friend retrieved with a bobby pin when it fell off its chain and down a drain in Palm Springs. I want to close things around my wrists, shackle my hands. I need to feel weighted, close to earth, anchored. I don’t want to want to leave it.

Things matter, things count. I took the last/dusty piece of china/out of the barrel./It was your gravy boat/with a hard, brown/drop of gravy still/on the porcelain lip./I grieved for you then/as I never had before. “What Came to Me,” Jane Kenyon

In Spain, at a two-week writing residency in June, my leg develops an annoying squeak. I take off the piece that covers the knee, clean it of dust and dirt, put it back again, it still squeaks. I leave it off although it rips up the covering hose and any long pants I might wear. It looks like a cat has been at me, perhaps the two that fight horribly every night outside my window after dinner, their battle meows like human screams. I let the hose and pants rip; I’m tired of making noise when I walk through the silent farmhouse rooms with their black and white checkered floors that smell of lemons and foreign bleach. When I look down at my knees there’s a big sticker on the end of the metal knee that warns DO NOT TAMPER WITH. The knee cover seems to weigh ¼ of an empty coffee mug if my hands are accurate scales. Franz Kafka, skinny insomniac, on August 31, 1920, a Tuesday, went to a doctor in Prague and wrote “neither he nor the scales find me improved.” We weigh and tweak and size up. Decision-making language.

The Swiss sweep the homes of their citizens each year and count bullets to be sure the weapons haven’t been fired by any members of the peaceful, civilian army; the neutral moderators of the neutral army take out the neutral bullets and hold the neutral bits of steel in their hands. In 1994 a piece of a Viking ship was found near my apartment building in Dublin, which meant one less crane would be obscuring the skyline as the archeologists arrived with their books and enthusiasm, their special shovels and precision tools. There’s a pool of dark and tepid water in a wet well in Dublin castle that has been sitting there since A.D. was in the single digits. In one legendary story, Mary Shelley was given Byron’s dehydrated heart – by then a handful of powdery dust – in an envelope. In Victorian times you didn’t send a letter to your beloved through the post, you sent a lock of your snipped hair, like a pressed flower or a leaf plucked from a tree. The world of things seems to make people accessible; it’s what hierophany is all about, stones and other natural objects as portals to another world, another life. For a full year after my divorce I drove around with my engagement ring freed from my finger and rattling around in the glove compartment of my car before I felt ready to pawn it with a friend at my side at a seedy, sprawling shop in South Austin that I’d driven by three times in the previous six months. Once I actually managed to enter the parking lot and park for a minute before driving away. The ring was small and light and made me enough money to get my first small tattoo, a tiny, colorful flower carved in a place I hoped my mother would never see it.

Things. We adorn, we bedeck, we festoon. We search and select gifts for our beloved. I saw this and thought of you. A ring from Paris, a scarf from Wisconsin, a hand-knit sweater with your name on a tag stitched inside, a tattoo sleeve stretching from shoulder to wrist. A clutch of coins from countries you’ve visited, currency that’s useless in your own country that you can chuck into a big plastic bin for charity in airports in Madrid, London, Berlin. Marks, shekels, pounds, euros, francs, pence, lire, Canadian dollars.

When I see a mother walking on the arroyo path near my home in Santa Fe with her baby in the front pack I think she’s what, maybe eleven pounds? The premature nine-month-old twin girl in Ronan’s swimming class weighs seven pounds. The woman who sat next to me during a turbulent plane ride in the 90s, back when flying absolutely terrified me, said, “It’s virtually impossible for these planes to fall out of the sky. They weigh too much to fall.” (Too big to fail!) An artificial leg weighs between ten and fifteen pounds; an artificial foot weights about four or five; the “model” legs (like model homes) that are lined up along the walls of a prosthetist’s office are often lighter, the ones that hang from straps and pulleys in the back rooms, the ones for real people, are the weight they should be and of course these weights range – they are as individual as the people who wear them. When I was 18 I weighed 95 pounds; when I was breastfeeding Ronan I weighed 110 pounds; in Geneva I weighed 132 pounds; when I was married the first time (and the second time) I weighed 118 pounds. Now I weigh 120 pounds. Ronan weighed 6.5 pounds when he was born, and doubled his weight within the first three weeks of life. Now he weighs almost 24 pounds. An earthquake kit has water bottles, a transistor radio, a bright orange vest, energy bars, and weighs about 6 or 7 pounds. A baby tooth is practically weightless. When bald 6.5 pound Ronan was weighed next to a 12 (!) pound baby with a full head of hair at Cedars-Sinai in his first 24 hours of life he looked miniscule, a little terrified worm unearthed from the ground. When my St. Bernard hit 85 pounds the vet put him on a diet. A bag of outgrown baby clothes weighs 5.4 pounds. Grief weighs nothing but you still have to drag it around.


Emily and I last May

EMILY RAPP is the author of Poster Child: A Memoir. A former Fulbright scholar, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. She has received awards and recognition for her work from the Atlantic Monthly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, and the Valparaiso Foundation. She was the Philip Roth Writer-in-Residence at Bucknell University and has received a Rona Jaffe Writers’ Award. Her work has appeared or is forthcoming in the Los Angeles Times, Salon, The Sun, The Bark, The Texas Observer, Body & Soul, Good Housekeeping, and many other publications. She has taught writing in the MFA program at Antioch University-Los Angeles, where she was a Core Faculty member, UCLA Extension, the University of California-Riverside Palm Desert Graduate Program, the Taos Writers’ Workshop, and the Gotham Writers’ Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is currently at work on a novel and a new memoir,Dear Dr. Frankenstein, which chronicles her life with her infant son, who is dying of Tay-Sachs disease. Excerpts from the book can be found at and you can visit her at