Category Archives: organ donor

FEBRUARY 8 — St. John Onward

I haven’t been blogging because I am focused on writing “the Caitlin book,” but we are on our family’s beloved island of St. John right now, and it seems a good time to say hello.

In 2014 (4 years ago, how can that be??), we had a big trip to St. John planned. I had rented our favorite villa. It sat on a hilltop looking down over the Caneel Bay resort peninsula.  These photos really do not do credit to the view.

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58262_10200224406441297_1427296344_n.jpgAndrew and Katie and Alvaro would be joining us. We had “boat day,” our favorite day of vacation, all booked with our captain, John Brandi.

On Christmas Day, as Katie and I talked in our hyped-up, excited way about the trip plans, I remember reading Caitlin’s face. She knew, as she would later tell me, that things had changed irrevocably for her, that there was no way she was going to be able to go. I remained in desperate denial for a couple of weeks but at one point, I said to Katie, “She’s either going to get better, like she always has, or we are entering a whole new place with this disease.”

A year and a half later, I wrote:

We are still waiting. There is that hope that a year from now everything will be normal again, or better than normal. St. John seems like the paradise it’s always been, even more so now that it is out of reach.

Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and when they moved down from Marblehead in 2005, they launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

Last winter, Nick and I could not yet bear the thought of visiting St. John, but this past summer, we decided we would go in January. In early September, I began looking for a small villa for the two of us. I planned that we would spend part of the vacation in a villa and part at Caneel Bay. I’d only begun my research when the hurricane warnings started. Then Irma hit. And a week later, Maria. Two Cat 5 hurricanes that tore through these islands, sucking away every bit of vegetation.

Screen Shot 2017-09-17 at 8.53.19 AM.png That house I loved? Roof ripped off, the insides destroyed:

Screen Shot 2017-09-17 at 8.51.15 AM.pngA couple of restaurants we’d been visiting since the 1990s? Flattened. Gone. Caneel Bay was closed, with no opening date in sight.

With such a huge recovery effort, there seemed no possibility of us going, so we didn’t plan to. But recently, friends who live here urged us to visit. “We are getting back on our feet. The beaches are still beautiful, restaurants are now open, there are places to stay! We need tourists/visitors/customers!”

So we are here. Our longtime island friends Delbert & Delrise are hosting us in their beautiful 8-unit vacation-rental condominium building on Turner Bay, Seashore Allure. I’m listening to the tranquilizing crash of the ocean as I write this.

Every single meal we’ve eaten has been extraordinarily good. Maybe because the chef/owners are actually cooking every night…. I don’t know. But La Tapa, Extra Virgin, The Longboard, The Terrace, Greengos, Cruz Bay Landing…all are consistently fantastic.

Our friends Ruth and Ron, who own the great little shop St. John Spice are back in business, resilient, like the rest of the locals who love this island. We had dinner with the lovely Karen, who gifted us with a beautiful piece of heart-shaped coral for the mausoleum. Her Treetops B&B sustained very little damage and is welcoming vacationers again.

Every morning, Nick and I have hiked the Lind Point trail into Honeymoon Beach and had it all to ourselves for at least an hour. It’s like being back in the 1990s, when we first started coming here, when Caitlin was little and we fell in love with this place.

Nick has been taking pictures of the beautiful island stonework as he prepares to build the mausoleum come spring. He returned from a walk near the island cemetery one morning, enthusiastic about a beautiful tomb he’d seen. The stone is the classic St. John stone and brick combination, and he pointed out the beautiful blue glass heart.

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Being here has been strange, sad, surreal, lovely.  It’s weird to see photos of us smiling, when two minutes earlier we were all choked up. But that’s how it goes. It’s also been really good. Just this morning, we talked about how last March, we were at a hotel in Vero Beach, Florida, and it seemed like we were surrounded by happy families with  kids and grand-kids, and it was all a reminder of what we no longer had.  Here, as in California last month, we are reminded that we are not the only ones who’ve borne hardships, and that honestly does make you feel better… sad to say.


Caitlin & Andrew, 2013


One of many boats days past.

We rather bravely decided to do our own quiet little “boat day,” with Cleve, the sweetest guy and a really good captain. Local Flavor is his boat. We got a water’s edge view of so much of the damage. Gorgeous Caneel Bay looks like a place abandoned after an apocalypse.

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Word is it will likely won’t reopen until 2021.

We headed over to Jost van Dyke, where the damage was extensive. Here is a picture from ten years ago, when we had lunch at Foxy’s Taboo with Kitten and Katie and Kate’s parents, two of our oldest and dearest friends.

Foxy's Taboo, 2008.png

Foxy’s Taboo, now:

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For those who know Jost: Sydney’s harbor is trashed. Disappeared houses in one spot, untouched houses right “next door.” People are living in tents.

On Great Harbor, the sandy Main Street looks so bright, so exposed. Very few trees left standing. The roof and windows of the pretty little church were blown out, but the congregation has erected a tent and set up chairs and a pulpit there.

DSC00343 (1).jpgVendors are open, selling water and rum punch and painkillers and chicken roti and Johnny Cakes. Original Foxy’s is in good shape. And this survived there:

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Foxy is some kind of Trump supporter (yikes/eek/#toomuchrum) and wearing a Trump hat and pin, but he’s still singing.

We ended boat day, as we always have, on White Bay. A photograph of the Soggy Dollar was one of the first photos I saw, post-Irma. STILL STANDING, they had posted.


We knew they were open but weren’t sure what to expect.

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It’s rebuilt and a bit roomier for the workers and visitors, and it looks great! They’re planting 100+ palm trees all the way down the beach and into the other harbor.

Jess’s sister Carly’s friend Annie is a manager at the Soggy Dollar. Her parents own the place. After Caitlin’s service, Annie arranged an “organ donor awareness” day there, on New Year’s, 2017. They used a photo of Caitlin and Andrew, taken there in 2013.

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While we were there, we suddenly remembered that Annie was probably on the property. Nick went to look for her.

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Annie is one lovely person. So warm and kind. We learned that her family lost her beloved brother CJ six years ago.

Her parents live on St. John and we hoped we would run into them, and St. John, being such a small island…well, of course we ran into her dad and other brother a day or so later.

As talk progressed, we realized that the beautiful tomb that Nick had admired and photographed was CJ’s, the blue glass heart one of the favors at his island wedding. Another coincidence, one of many.

RIP, CJ O’Connell and Caitlin O’Hara.




DECEMBER 18 — “God was in the room”


So it’s been a year since Caitlin’s transplant. A fact that’s as hard to believe as her absence.

This post from that day, if the lungs had come a month earlier, before the weeks on ECMO…. … too painful to think about, really.

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I’m going to let Caitlin’s words take over, with thanks to Kate S, an old friend of hers who has most recently, graciously, shared her correspondence. The “Caitlin book” that I’m writing has a lot to do with this search for faith.


Emails with Kate 

can i ask you something personal? If you don’t want to answer I understand. I have never been that religious but i have always had faith. i hope that makes sense to you. as i get older i struggle more and more with the reality side of my brain and the side that wants to hope and pray for the best, and have faith. i am always so interested in how people like you — really smart people that is — stay so solid in their beliefs and faith. i don’t know, i guess i am just curious about it. then sometimes things happen that make me feel like i am more connected, and that it is possible. i’ve been trying this thing where i “dialogue” with my illness. it was recommended by an astrologer who did my chart, and it is something i kind of do a lot anyway but in a different way. its like visualizing sessions of going through your body and imagining healing. but this takes it a step further with actual talking to your disease. anyway i was lying in bed this morning doing that for like half an hour. andrew was there, he was like half awake, we were just laying around. anyway i never said i was doing that. then when he got up and was walking into the living room he just said casually “i feel like god was in the room this morning.” It was so odd, that is not a normal thing for him to say (obviously). It was just kind of cool.



i am pretty open about everything, but religion is one thing where I am both curious and less knowledgeable.  There is so much craziness around religion, that I am always compelled by the smart and grounded ones who find their faith in it, like you.  And there have certainly been times when I have reached for it (and it is christianity, because that’s what I was raised with, however weakly).  When I was 11 I was very sick for a long time, and I had a hospital physical therapist who would come in and do chest pt (a treatment for CF).  She would talk about God and Jesus, almost in an awkwardly preachy way…she was southern. But I was so sick and so detached from anything normal that an 11 year old kid thinks about, that I just fell into it. And she encouraged me to pray and so I did, and I prayed a lot all through my teenage years. And I can still remember her talking to me as I stared out the window and I can’t believe that was an 11 year old kid. It was like I stopped being a kid that year.
When I got older I got interested in reincarnation.  Stories of children remembering details of lives that they couldn’t possibly have known, the idea that we are here to learn lessons in this life. Figure out what those lessons are, be good people, and evolve our souls.  The idea of souls.  It was fun to read about, yes, but mostly the ideas of reincarnation resonated with me.  I was interested in the fact that most of the religions embraced the idea very early on in their inception (or so I have read), and even though now it is considered maybe “new age-y” it was in fact very “old age-y.”  
When I was very sick that time, my mother had an experience of lying on the couch in our living room sobbing, just crying really hard.  Thinking, how will this ever be ok.  She said she heard a voice say clear as a bell “have faith.” She has told me this story lots of times since then. She says it was so clear she sat up immediately and stopped crying.  Yesterday she bought me a card. She picked it based on the quote on the cover by Frances Hodgson Burnett (author of the Secret Garden) “Hang in there. It is astonishing how short a time it can take for very wonderful things to happen.”  She came home and opened it to give it to me and inside it said “Have Faith.”  She didn’t even know that, …how odd?! And wonderful.
Anyway — things like this, and the moment with andrew, are just examples of many validating moments I have had during whatever my spiritual journey is.  They have made me believe that there is something there.  Sometimes I am more connected to it, and sometimes I am not.  Perhaps that is the drawback of not having a solid religion to keep you connected, to draw from when you feel like you are losing faith. I don’t know. This might all sound insane to you. I don’t want to think of myself as one of those people that everyone seems to be nowadays which is just “i’m spiritual but not religious,” because I think it is more than that. It is more than just liking the idea of something.  I think you have to believe in the GOOD of something, solidly, in order to stay the course.  

Email to Nick


A Ravenna church she longed to see

So what I always loved about Early Christian art was that it was so …early. Really the beginnings of Christianity , and thinking about what that meant is neat for me. This was years before even the crusades, the first really violent time in the name of “Christ” (well except for Christ himself obviously ). So there was violence of course … In Rome and in the Byzantine empire. But Christianity hadn’t even reached a point yet where people were “fighting in the name of the Catholic Church” etc and things were still more modest.

You can see the change in how Christ is portrayed in the art in these small churches. He’s still a shepherd but he’s wearing roman robes and looks more regal. So it’s the beginnings of it…. But it’s unlikely that these religious people then were implementing awful atrocities on people

I think the area seems beautiful and peaceful. But also something I can’t really place, and don’t necessarily need to figure out. I just would like to go.

There is always going to be bad in the world. I think that is what makes being good so important.




NOVEMBER 16–& the Anniversaries Begin

I know all the dates.

Yesterday a year ago was the last night Caitlin would ever sleep in her own bed. That night, she was so weak she did not have the strength to sit in the bathtub and let me wash her hair. I was so alarmed I emailed her doctor at 10pm.

On the 16th she was admitted to the hospital for the last time.

I wonder now, how many times in her life was she admitted to a hospital? I don’t know that I could even guess.

After I went home for the night, she texted me

Caitlin: Had to get an echo. Feel sick. And tired and can’t breathe. Love you. Hope you get rest.

Text message: 11/17/16 9:14am

Caitlin: My score is 70

Maryanne: Oh my God. Oh wow. What happened?

Caitlin: Dr hayanga came in. Because of my oxygen

Maryanne: What did hayanga say

Caitlin: He was optimistic. Very. He was Iike, we expect to get offers.

Caitlin: Andrew says we HAVE to be hopeful

Maryanne: We ARE hopeful. This is going to happen.

I drove to the hospital that morning with a light, happy heart. It was finally going to happen. The head surgeon came in and said he had been up all night fielding offers for her. None of them were a match, but with so many offers coming in, and with her score so high, a match seemed imminent.

She was on a lot of oxygen but she was stable, and felt much better than she had at home. Finally, finally, finally, after 2 1/2 years, it was going to happen.


Yesterday, another CF tragedy occurred. Mallory Smith of California, who, like Caitlin, could only be transplanted at UPMC and moved to Pittsburgh to wait, received her transplant in September. Her recovery was hard but she was recovering. She was on the other side. Just a few weeks ago, she celebrated her 25th birthday. Soon after, when the docs removed her last chest tubes, she said, “Today is the happiest day of my life.”

Then a pneumonia took hold in her chest. Without an immune system to help her body fight the infection, she became sicker and sicker. The cepacia bacteria that had damaged her native lungs began to destroy the new lungs as well.

We were all hoping for a miracle of science for Mallory, but she slipped these surly bonds yesterday afternoon, her most beloved people by her side.

She was brilliant and kind and everything wonderful. A few years ago she wrote an essay that contains these words:

My life is a miracle because I should be dead. Your life, even if you’re healthy, is a miracle, because your existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring you, a capable and conscious bag of stardust, to the here and now.

Acknowledge that miracle. Existing is a rare gift, a privilege. It isn’t a right. Think of all those atoms that never ended up inside a human body.

So pick something, do something, to respect that miracle. Step up to the challenge of making your own meaning out of mere matter. Let the whole, the human, be altruistic, be greater than the sum of the parts, the selfish genes of our genome.

Set an intention and get after it feverishly, frenetically. Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breathe and exhale a little bit of calming energy to your environment.

Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you? Do it to justify your life.

I hope Caitlin found you, Mallory.

Full text:

And we are big (spoken word unspoken), by Mallory Smith

View story at


SEPTEMBER 26 — The Caitlin Book

From a little notebook of Caitlin’s:

April 27th, 2012
I am grateful for —
My parents
My friends
My apartment & car
My dog
My ability to be able to go out and have fun even though I’m sick.

In July of 2014, 6 months into full time care-giving, I realized that I hadn’t worked on my new novel and that it would be easy to continue to ignore it, indefinitely. So I started carving out a daily chunk of time. I would set my timer to 30 minutes and write, with full focus, for at least that amount of time. At the end of each session, I circled the date in red.

It’s amazing what you can do with 30 focused minutes. I managed 254 pages–a decent draft of a new novel. In 2+ years, I did not miss a day until I finally gave up, in the ICU, on December 11.

Last week, on September 18, which was our 35th wedding anniversary and the 9-month anniversary of Caitlin’s transplant, Nick and I walked around Walden Pond.


Walden Pond, 2017

When we came home, I started setting the timer again — for 33 minutes, in honor of Caitlin.  But instead of working on the novel, for the moment I’m compiling parts of this blog and other words into something that I’m just calling “the Caitlin book” for now.

At this point, it is painful. I started at the beginning of the blog, but now I’m into the December posts, which I had not read since I wrote them. Reliving each shock after shock, the kernel of faith, the hope, the desperation, and then that final joy when she went into the OR on December 18 and received lungs.

It’s still impossible to believe things played out the way they did.

But a week does not pass that I don’t receive a blog comment, an email, or a hand-written note from someone, somewhere, who has been bettered by Caitlin’s story. Here is a recent one (accompanied by heart-shaped rocks for Caitlin’s memorial). It’s a reminder of why I want to create something more permanent than blog posts in the ether.

lucy letter

It will not be a story about anger and illness. It will be the story Caitlin wanted told: about light, love, and fierce positivity; about life and afterlife.

I am still figuring out the form it will take.

I told my wonderful friend Jane, in Pittsburgh, a beautiful writer, that I was doing this, and she responded:

Happiest thing in your letter: you’ll start the Caitlin book! This has to be done. This is going to be so wise, so beautiful, such an honoring of life, of soul, of friends, of motherhood, of grief, of CAITLIN. It is going to be a unique gift to the world. And to many many people who suffer terrible illness and loss, But really a gift for everyone. Mothers! Daughters! People who need Inspiration!

I have printed her words out and hung them over my desk, to keep me going.



SEPTEMBER 6–In the Meantime..

I’d like to recognize/document summer, and appreciate the continued kindness and interest in what is going on with us.


They started with Caitlin’s “main” ICU nurse, Erin, who visited us with her husband and three charming little daughters (3 under age 5!) in June.  They called me “Miss Maryanne,” and Nick, “Uncle Mike.”

In July, Dr. Penny, the CTICU director who did everything she could to save Caitlin, visited us, too.


Emotional times. But anyone who’s lived inside an ICU knows how intense it gets there. These people became part of our lives.

And next week, four wonderful friends/Pittsburgh neighbors are coming. I guess we will always be tied to Pittsburgh.



Turns out Nick took some photos I didn’t know about. I’m usually the one taking pictures, so I’m in some, for once.











Andrew at Larsen’s. Steamers.



People have been continuing to send us beautiful heart-shaped rocks. There was even an anonymous, perfect one in our mailbox. Thank you! There is no time limit. We haven’t even started building the memorial, and will always have room for more. Here are some more pictures.



The little kids in Ireland.





Spain hearts.







The Islands and Irma

We are worried about our beloved islands and everyone in Irma’s path. We haven’t made many firm plans yet, but going back to St. John is one of them. Like the Vineyard, Caitlin’s spirit is surely there.



I made a good friend in Pittsburgh, Barry Lavery. He was living with ALS and — talk about an inspiration. He had a wise, expansive spirit. I looked forward to our weekly visits/conversations, and after I left, we would text and I would send him videos of New England beauty and the wildlife. He was a lifelong photographer and photography teacher, a bird lover and hawk expert who volunteered at the wildlife center after he retired from teaching at the Art Institute. He was a lifelong student of philosophy, a Taoist. A man who never lost his sense of humor. I will write about Barry in whatever I end up writing about all this. He was certainly a part of the whole story. He left us during the August eclipse and promised he would seek out Caitlin. It’s a welcome thought.

This was his public Facebook profile pic, so I feel comfortable sharing it. It was obviously taken when he was still well, still volunteering at the wildlife center. The hawk connection is so interesting. I still haven’t written about the hawks, but I will.

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Barry and a hawk named Chuck.



This hasn’t happened much, but when it does it’s kind of awkward. We think of Caitlin all the time and talking about her is part of this new life.

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–Maryanne XO





SEPTEMBER 6 — What will happen?

I keep thinking we can turn back time. An illogical thought, of course, and one which only lasts for a second, but which comes to me every single day.

Inside my kitchen medicine cabinet, I have always tacked up recipes, poems, cholesterol counts, phone numbers of relatives in Ireland. I noticed this calendar last week. Early in 2014, at the beginning of the transplant nightmare, I had taped it up.

I remember looking at all the days still to come and wondering what they would bring. I wrote, What will happen??? Knowing there would be an answer, impatient for it.


Then, a day later, cleaning out a desk drawer, I came upon an email Caitlin had sent me, again in early 2014. I don’t generally print out emails, but had printed this one, and oddly enough, when I mentioned it to Katie, Caitlin’s closest-to-a-sister (is there an easier word for her??), she said that she, too, had just happened upon the same email, which I had forwarded to her, back then. Another funny coincidence.

Caitlin to me:

This is what has been bothering me most about our argument the other night. We need to make this time as ok and as enjoyable as possible. Who knows what’s going to happen once I get that call. I don’t want to live this time as if “this sucks” or “this time is really crappy and stressful.” I just can’t do it and I don’t think it’s true or smart or good for our hearts. I feel like this is your underlying sentiment despite that your brain tells you to “appreciate what we have.” The truth is is that this could be it. As hard as that is to say, once I get the call I’m going into a hugely risky surgery. There aren’t any guarantees. So this isn’t just a time to get through –it’s a time to try to be happy and make something worthwhile of it.

Everything from the bottom up here is unknown- someone has to die for me to get a transplant, so it doesn’t get any more unknown or unplanned than that. The only option is to go with the flow as best we can and that means basically, assessing everything as it comes, and dealing with things but letting them go just as quickly. That includes like stress and freakouts and fights. There’s no way to avoid them so just deal with them.

This isn’t a sad time we should be waiting for to be over. It will be over soon enough and you could be wishing we were back here. Or we could be glad we never have to go back here. The point is we don’t know, we can’t know, and I don’t want to live like I’m just trying to get through it, when this is still my life.

I love you

Sent from my iPhone

My response:

I love you.
It is interesting that while you were writing that, I was making coffee and thinking about how I needed to tell you that I feel shame when you have to talk to me like that.  You do a very good job of taking the high road, and restraining yourself from fighting and all that.


You are completely right about all of this.  Let’s make today a happy day !



We are into September already. September of this year 2017 that has not had Caitlin alive in it. I look at my calendar from a year ago. September 7, 2016: Kitten admitten.

It was the first of three separate hospital admissions she would have. One each: September, October, November.

During the final admission, with such a high score, we were actually happy, expecting that transplant would be imminent, but she was more scared/somber/nervous than I realized. Of course. I see now, reading through much of her stuff, how much she kept inside. One of the things she sent to me then, and which breaks my heart a little:

The Afterlife, by Billy Collins 

I haven’t been writing in the blog all that much. I plan to write this story in a more contained form. I’m still figuring out how.


–Maryanne XO