Three years ago today our beautiful, round faced,  brown eyed grandson, Ronan, passed away in the early hours of a chilly day in Santa Fe.  Taken from us by the nasty and ugly deteriorating affects of Tay Sachs disease.  He was just shy of his third birthday and had lived with the wretched and progressive symptoms of seizures, inability to swallow, blindness and no mobility since his diagnosis at 9 months of age.   So his death was not a shock, just a tragic reality of pain and extreme loss!

I have experienced my share of loss in my life:  my father when I was 10 months old, my mother died in my arms when I was 24, my beloved grandmother (whom we lived with) died when I was 6 years old.  All of these deaths seriously impacting my life.

I have attended more funerals,visitations and funeral lunches than I care to count as my husband of 49 years is a Lutheran pastor.

I know about the grief process.  I have “worked through” it many times and have come to a livable truth.  But Ronan’s death was different!  I could not get my head or heart around it!  I could not “get over it”!!  I read books, tried to meditate, exercised, talked to friends and acquaintances who had lost children, took sleeping pills, anti-anxiety medication, saw a therapist, ate chocolates, drank wine, made a memorial in our garden with a statue resembling Ronan with a bench to sit on and try to find peace, but nothing worked. Until this year, this time, this anniversary when I somehow decided to open a different box, look in a new direction with a more personal, reflective and open perspective.

Ronan’s death was different!! It was different than any of the losses I had experienced.  He was a helpless child, robbed of his childhood and his life.  I was one of his caregivers during his illness.  I was a nurse and I understood only too well from the very beginning how the impact of this disease was going to play out.  It was too devastating to share and I tried with all my being not to think about it.

I experienced a double grief, because as a mother I could not protect my daughter from the inevitable pain. Always feeling helpless knowing that nothing I said(even if I thought it was comforting) would really make it better.  No parent wants to be confronted with those kinds of realities.

But, I watched my daughter explode into this fierce, resilient, compassionate woman who was a mother to be reckoned with as she introduced her baby to the world.  Taking him to restaurants, coffee shops, tourist spots, conferences, readings, walks on the arroyo and more walks, in planes, buses, and cars.  All the time absorbing the stares and comments of strangers, proud  of her son and sometimes responding to a stare or comment with a zinger of a reply which hopefully made that person more sensitive or mindful.  Forever out there, forging ahead with grit and resolve through dark nights and lonely days.  My daughter was always a “strong willed” child as we termed it in my day, but now she had become a force to be dealt with and that made me very proud and gave me peace!!

And then one day, it got better!  She introduced us to the man she had been dating. Frankly, I was not interested in meeting  this man.  Life was complicated enough without someone else coming in and then out of it.

But there was something about this guy.  I liked him!!  He was intelligent, handsome, sophisticated, and funny.  He invited us to his home (a historic catholic church he had restored, filled with antiques and family heirlooms that he actually cared about and knew their history).  He made original cocktails and cooked us fantastic meals, told us funny stories and made our daughter laugh once again!! He provided us with a respite and made us feel cared for after a long day of giving care.  His very presence brought me peace.  And I liked who my daughter was around him.

He embraced Ronan and was not at all put off by his serious condition.  He helped take care of him and took him places with my daughter.  He was with us when Ronan passed and we always wondered what we would have done without him there. Now, he is our son-in-law and the father of our beautiful, fun loving granddaughter, and we are so thankful!

We are often hear criticism of the younger generation because they do not live their lives as we think they should or conform to our  code of standards and are too into themselves to get the real meaning of life. Our daughter has a large circle of friends and they all got it!! They came from all over the United States and abroad to visit Ronan after he was diagnosed and we knew that the time he had with us was limited  They interrupted their lives and work schedules, bought airline tickets that I am sure impacted some of their budgets, made arrangements for the care of their own children, used up their vacation time, BUT THEY STILL CAME!  They fed Ronan, held him, rocked him and were a part of his small world.  And toward the very end , they weren’t put off by his feeding tube or his frail emaciated body that had to be wrapped in a a puffy quilt so we could hold him with out hurting him.  They brought food and wine and sat with us and called to see if we were ok.

Our friends and family came long distances to meet and greet and hold Ronan and support us after Ronan was diagnosed and for his memorial service.  They called and kept in touch during his illness and after his death.

A wonderful couple, Nancy and Libby,  friends of our daughter, gave us their retirement home in Eldorado to stay in so we could have a place to go when we were “off duty”. It was place to have our own space and peace;  to regroup and process.  This was a gift so generous and unimaginable that I am still in awe of it to this day!

We live in a world filled with cynicism and fear and often overlook the goodness and charity of other human beings.

I am choosing to remember all of the acts of humanity I witnessed and was a recipient of during Ronan’s life and because of his life.  I am going to rejoice and be grateful for his short, but significant life.  I am always going to grieve on the anniversary of his death, but also celebrate the impact of his tiny being and NEVER GET OVER IT!!

This is my living memorial to him!!

Mary Rapp, Ronan’s grandmother

Ronan – posted by Weber

Ronan passed away peacefully on Thursday, Feb. 15th at about 3:30 am in Santa Fe.  He was surrounded by friends and family.

If you would like to make a donation in Ronan’s memory, please do so at the National Tay-Sachs and Allied Diseases Association, who have been a huge support to Emily and her family – http://www.ntsad.org/

Please feel free to express your sympathies on the Little Seal Facebook page – http://www.facebook.com/OurLittleSeal

A recent pic of Ronan – Image

What If This Thanksgiving Was Your Last?

This week’s essay on Role/Reboot.



Thank you, TIME magazine! Little Seal has made the annual list of the 25 Best Blogs of 2012. And thanks again to Jennifer Weber, who was the first person to suggest that I start this blog in the first place!



Letter from —

Autumn mourns the leaves shaking from green to yellow. They eat special cut lamb shanks and drink fizzy red martinis in the bathtub. The commentator’s mouth dips to the right no matter which political candidate she is discussing. We laugh because we want to cry. It is understood that love is fragile.

Just this summer I peered through cold glass at the Superdome and wondered. I drank an iced coffee in the street and my shirt was wet as a pickle. The women in Chico’s talked me out of buying Spanx and asked my age. New Orleans: city of survivors where the dead are buried with the living. They whisper and wail.

We make plans for winter but I no longer practice anticipation. I want to eat green chile stew and grits every day. We pass too much red wine back and forth and wake at four a.m. I can’t watch the final scene of the movie about the war where the little boy is hanged. The secret heart inside the heart you show is always changing.

October in England is sun and rain and hamsters running in cages all through the night like the song.Our table at the Indian restaurant was like a bunk bed, new faces appearing to hand hot dough over the ladder. I am lost on the bus, everywhere everywhere where here?

            I ask questions that have no answers but somehow alight – please alight! – in the right place.





Cheese and Cherries: O’Hare Revisited

The last time I came through Chicago’s O’Hare airport was in June 2011 while en route to Spain. At that time I was in a fugue of grief. Time was a trampoline; every step forward was followed by an awkward leap in an unexpected direction. I had been offered a residency at an old farmhouse in Mojacar, and I took it. Overcome with guilt, but also fueled by a desire to write about Ronan, or death, or the afterlife, or all things possibly connected to and by Ronan, I got on the plane, landed in Spain, took a taxi to the end of a dusty road and wrote like a madwoman. I wrote hundreds of pages in a matter of weeks. I had very little sleep, almost no rest, and the only social interaction I experienced was the awkward hour when the other artists and writers met in the dining room to eat the incredible dinner that had been prepared for us. In other words, a luxurious if slightly manic few weeks that felt like weight lifting for the inner life. I wrote through most nights, crying out the window at the dim lights blinking sporadically in the shimmering distance. I pulled at my hair. I did jumping jacks and yoga in my room to spend any remaining physical energy. I spent hours in a hard twin bed with my face pressed against the wall, weeping and sweating and cursing a God I don’t believe in. I spoke in full sentences to only one other person – an Israeli poet I bonded with one night after dinner when we had a discussion about King David. Amir was (and still is) writing an epic poem about the Biblical king’s life. As we talked we looked out over a hill where an artist had constructed a statue of a “facsimile Jesus” with a cartoonish smile painted on his carved wooden face. He’d been crucified on a skinny tree, his wooden arms spread wide to the sunset fizzing on the horizon. We both agreed that the sight was so silly and absurd and grotesque that it made us want to weep and laugh at once. A few nights before I was scheduled to leave Spain I called my friend Emily in London and begged her to come and spend time with me before I truly lost my grip. After she arrived she took one look at me and ordered me into her rental car. We drove along the coastline, stopping for meals and glasses of wine and cigarettes on the beach. We talked and talked and then for long stretches we were quiet, the kind of quiet you can have with a person who accepts you as you truly are, no matter where you are or what weird little ways you might be manifesting at that moment.

On this first day in October 2012, just a few months away from the end of another year, I’m in O’Hare again. The visible trees through the airport windows have already shifted to yellow and begun to fall. Airports are always teeming with children, and a year ago the sight of each one of them would have felt like a fierce elbow jab to the solar plexus. When I was on the way to Spain I had started an essay that I was working on in O’Hare, and like everything I wrote in 2011 I was compelled to finish it: brimming with ideas, words, a hypergraphic mess of a woman stumbling around and asking weary travelers if they’d seen an electrical outlet, holding up my computer as if running out of power would be a catastrophic event, which mentally, it might have been. I couldn’t stop writing. I haven’t stopped, but today I’m sitting on the ground in yet another O’Hare terminal, preparing to board a plane to Zurich. I am still a mess (who isn’t?), but I am no longer hysterical, and when I am hysterical, it doesn’t lasts for hours and hours. One hour once a month seems to be the new pattern, the new normal. I am an altered person, a new person, both better, I guess, and worse, I suppose, than I once was, than I used to be. My life is not exactly the way I’d like it to be (is anyone’s? And how do we know? How would we recognize our “right life” and how long would it last?), but I feel closer to the person I’m trying to be, which is a person who is not governed by fear, even if it’s impossible, even unreasonable, not to live alongside it. Living the biggest, fullest life possible is a responsibility I believe has been given to me because Ronan never had a chance to make any decisions about what kind of life he may have wanted to live. Not everybody believes this; some people think I’m full of shit, others believe I’m selfish or crazy or just plain bad. Some people wonder why I’m not still weeping in public. Some judge me, say it’s inappropriate or even “unfit” that I might experience moments of happiness, that I might laugh, that I might live, drink wine, see movies, go on dates. It is interesting to me that people expect grievers to lose themselves with the one who is dying or who has died, although this, too, would also be judged. Is the desire to say Oh, how tragic, and then pretend that the precariousness of life can be repudiated, as the thinker Judith Butler suggests that we all desperately desire because it feels like an easier mental route and one we mistakenly believe will distance us from the mortal danger we’re always in? Some people don’t want to see a grieving mother on a dance floor, or laughing with friends in a restaurant, or holding hands with someone in the street. Is someone who is beaten down somehow more relatable? More palatable because the reality seems more distant from the life they’re living? I wonder. Most of the time I try not to care; I’m too busy trying to live.

2011 was the year that everything changed, and in 2012 everything is still changing. The last time I flew overseas I was hunched in a corner, waiting until the last moment, until the final boarding call, wondering if I should turn back and just forget the whole thing. I swallowed my tears with the power of my mind, my mouth dry, my stomach empty but uncomplaining. Today I shared the single outlet with a friendly woman who was also on her way to Zurich. I offered her some of my cheese plate and slurped down a bottle of chocolate milk, my favorite traveling beverage. I bought expensive perfume and Chanel lip gloss with a ridiculous name – troublant – in the duty free store. I chatted with the Russian saleswoman and we talked about the new nail polish colors (black and plum and deep pink). She showed me some glamorous handbags. She talked up a new anti-aging cream. I sampled too many perfumes at once and left the shop smelling like a fancy toilet. I eyed the cigarettes on the way out, wondering if I should bring a pack to Emily in London but then thinking she might have quit or wants to quit. A newborn was screaming in the gate area and it didn’t make me wish I could push my head through the glass of the terminal and jump. I chatted up an Arabic-speaking toddler. All of this happy-spirited interaction seems proof that you can get used to anything. Any deep sadness, any great triumph, any shattering blow, any expansive happiness – all offer possibilities for growth and the necessities of adjustment. This is what human beings do if they want to survive. It turns out that the heart is rubber bandish, stretching and snapping back, and much stronger than it looks or seems. I wrote the book that began on this blog for Ronan. I want the whole world to read it; that’s why I’m going to Europe. That’s why I’d go anywhere. And to those who would prefer the tragedy, who would find it more appropriate to see the forever weeping; to you I say that whatever melodramatic display you may expect, whatever behavior you’d like to anticipate, regulate, judge, mitigate:  you cannot have it. If you have not lived it, you do not know it, and I hope you never do. I hope your crucible to a different life is a gentler one, a more survivable one. I hope you never know this loss. I hope you never have to learn these lessons in this way.

Back at O’Hare, I’m reminded that all passengers, everywhere, are boarding the same plane in the same direction. How we adjust to this reality is as unique as the swirls and dips of our individual fingerprints. How do we do it? We live, we dream, we continue to love even after the idea of love seems a distant dream. In other words, we kick on or we give in. It’s a simple set of choices for a complicated situation.

This newness, this new life, this mix of hysteria and calm, of gratitude and anger, of love and fear, comes to me most vividly in dreams, although it also happens, thankfully, in my lived life. Before I left for Zurich I had a dream that I had returned to Antigua, Guatemala, a place that was an image touchstone for me – and a comforting one — shortly after Ronan was diagnosed. The streets, the people, the sun, the language; it was like visiting the set of a place I hardly knew but yet understood on a much more intuitive level. In the dream I am sitting on the ledge of a ruin not far from the plaza. The sun is strong but pleasant. Clouds move quickly through the sky overhead. In an alcove above me I can see a worker sleeping. His boots are unlaced and his hands are folded across his stomach. An old bandana covers his eyes from the sun and he is snoring. Dust floats up from the ruins and mixes with the pale sunshine. I am wearing sandals, and someone I love is feeding me cherries, a fruit I don’t love, but in this moment they seem irresistible and necessary, the taste somehow completely new. I place one in my mouth. The flesh is firm but soft at the bite, terrible and sweet. The person who loves me keeps hands that are strong but not insistent on my shoulders; hands that ask for nothing but what is unfolding; hands that truly hold. I feel, as that moment opens, so truly alive that I am surprised that the world doesn’t burst open: a perfect mix of bottomless sadness and heart-swelling joy. I am filled with a complicated hope, which may be, I believe, the essence of love. 



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

The Still Point of the Turning World

Hey everyone,

Just wanted to let you know that my book about my experience with Ronan, The Still Point of the Turning World, is available for pre-order on Amazon. My friend Catherine Davis is responsible for the beautiful cover. And thanks especially to Andrea, my editor, who was the smartest and best editor a writer could ask for.

And thanks for reading!

Precarious Life, an essay by Sarah Sentilles

This beautiful essay by Sarah Sentilles arrived today in my inbox at just the right moment. I find myself at a loss for words, and want to let her voice – and her message – speak for itself. 

Precarious Life

Sarah Sentilles

August 23, 2012


There’s a temptation to turn Emily’s experience with Ronan—to turn Ronan’s experience with Emily—into something abstract. Mother and child. Pieta. Abstraction is more manageable somehow, packaged, known, removed.

I can’t imagine what you’re going through, people say to Emily.

Yes, you can, she says. You just don’t want to.

But Emily and Ronan’s daily life is anything but abstract. It’s concrete. Sleeping. Feeding. Choking. Shaking. Bathing. Clothing. Changing. Carrying. Breathing. Drooling. Soothing. Syringes lined up on the coffee table filled with liquid medicine flavored mint, flavored grape, its consistency too thin, so hard for him to swallow.

Ronan can’t see and he can’t move very much, but he responds to Emily’s voice, orients his body, his eyes, to the sound of it. Do you think he knows who I am? she asks.

Yes, I say.


We took Ronan with us in his stroller wherever we went, his head held up by stuffed animals—lion, monkey, bunny, elephant—his guardians, his guides, his spirit animals. 

People looked at him, stared at him, trying to figure out what was wrong, and then they looked away.

Lucky guy, a waiter said when he noticed Ronan was asleep, yet another reminder Emily’s life is not the way others assume it is.


I teach college students—many of them artists—and my favorite book to teach these days is Judith Butler’s Precarious Life: The Powers of Mourning and Violence. Butler takes two things that are usually understood as isolating—grief and the body—and develops an ethical system based on connection and responsibility. Our bodies have public dimensions, Butler argues. “The skin and the flesh expose us to the gaze of others, but also to touch, and to violence, and bodies put us at risk of becoming the agency and instrument of all these as well.” My body, she writes, both is and is not mine. Each of us is implicated in lives that are not our own.[1]

Nowhere is this clearer than in mourning. When someone you love dies, Butler writes, you will never be the same, and it is this experience—this recognition that when you are lost something of me is lost, too—that shows our essential connection to one another. Grieving reveals who we are, Butler argues, reveals what it means to be human; grieving exposes our fundamental need for and dependence on others. Our ties to others constitute what we are. Others compose us; there is no “I” apart from “you.” If I lose you, I not only mourn the loss of you, but I become inscrutable to myself. Butler asks, “Who am I without you?”[2]

“Let’s face it,” she writes, “We’re undone by each other. And if we’re not, we’re missing something.”[3]

Emily’s grief is public grief. When Ronan was diagnosed, Emily could have turned away from the world, closed her life down, stayed inside, but she has chosen to do the opposite. The door to her home is left open. If you were to walk into her house today, she would hand you her son.

This is Ronan. Hold him.

I spent most of my time in Emily’s house holding Ronan. His legs straddling my stomach, his chest on my chest, his face turned to one side, his head just under my chin, the weight of him, the weight of someone dying—which is all of our weight.

Love is all you need, Ronan’s t-shirt said.

His little perfect beautiful body is heavy, and being with him, holding him, felt nothing like what I’d imagined. When I thought about visiting Emily and Ronan, I imagined I’d cry the whole time. I imagined it would be dramatic. Frightening. Strange. But it was peaceful. Quiet. The sound of Ronan’s breathing filling up the room. The sound of bottles being washed, of prunes being mashed, of the dishwasher being emptied. The sound of Emily talking to her son.

Hello, my beautiful boy.

There is no question about what will come next, though how and when remains a mystery. It will come. And there is nothing anyone can do to stop it.

What kind of community will we be for Emily and Rick and Ronan? How will we hold them? How will we let ourselves be undone?

Emily has made her grief public, but I know she often feels alone. Her book about Ronan is called The Still Point of the Turning World, and “still point” is how Emily sometimes describes her life—as if she is one place, stopped, while most of us circle around her, going on with our lives, our ordinariness.

I talked to Ronan while I held him on Emily’s couch, my back supported by pillows, a mockup of the cover of her new book propped up next to me, Ronan’s weight rooting me to the earth. You’re okay, I said when his limbs tightened, when his arms shook, when he startled. I don’t know if Ronan could hear me, and if he could hear me, I don’t know if he could understand what I said, but I can see now I wasn’t only talking to him. I was talking to me. I was talking to Emily. Oh, sweet baby. I’m here. I’m here. I’m here.



[1] {Butler, 2004, #201@26-28}

[2] {Butler, 2004, #201@22}

[3] {Butler, 2004, #201@23}

National Day of Hope for National Tay-Sachs and Allied Diseases Alliance in Honor of Ronan Louis

Saturday, Sept. 22, 2012 at Backroad Pizza, 1807 2nd Street #1, Santa Fe, NM 87505, 2 pm – 5pm.

Art Auction and Live Music.  All proceeds go to help families with children living with Tay-Sachs and other similar life-limiting diseases.  Learn more at National Tay-Sachs and Allied Diseases Alliance.

RSVP on Facebook – https://www.facebook.com/events/130611087082935/