organ donation – Page 4

JANUARY 12–A Sampling of Messages

People are asking how Nick is. He’s not on social media, so it’s hard for people to tell. He’s up and down, as am I, but we are a pretty seasoned see-saw act, and we are doing okay.

screen-shot-2017-01-12-at-7-53-34-am — *Amazing, but we actually can look somewhat normal*

We do both want to say how very grateful we are for all of the wonderful messages we are receiving. They really help….like writing on this blog helps, like anything that keeps Caitlin close helps. We are going to share a couple of them here, with thanks to the people who’ve given us permission to do so.

from Meghan Greenberg Lockwood

About Meghan: We have such a strong memory of dropping Caitlin off to her first day of school at Fay, and of Meghan making a point of greeting Caitlin and offering to walk in with her. Meghan’s note was delightful to receive because it reminded us that 1) Even though 33 is young, Caitlin was around for a long time, and 2) She had mischievous memories we knew nothing about.

Dear Maryanne and Nick,

I wanted to let you know how much I have been thinking of you, and of Caitlin. So many memories have come back to me these past several weeks, memories that I didn’t know I had. The Caitlin I knew best was elementary and middle school Caitlin, and as you know, she was what my grandmother would have called a hot ticket. In the spirit of keeping her light alive, I thought I would share a few of these memories.

During art class, Caitlin would sing very dramatically, “I’m off to New York and I won’t come back till Saturday night, after the SHOW-OW-OW!”

Other times, she would burst into Unchained Melody. She’d be sitting quietly and get a little glint in her eyes and then belt, “OHHHH my LOVE my DARLING, etc.”

At sleepover parties, after pizza and cake, she liked to get under the table, crawl around, and then grab someone’s feet and tickle them. She called it “The Game of Not Knowing,” because you never knew when your feet were going to get grabbed!

I remember one time she was at my house for a playdate recounting to me and my mom an amazing meal she had had. She turned to my mom with wide eyes and said in a conspiratorial stage whisper, “I had to unbutton a button!”

Early on in our French career, Madame Naumes told us that the letter ‘h’ was not pronounced in France. Caitlin looked horrified and said, “But then…how am I supposed to say…I live in…BABY DONKEY LAND?!” (Get it? Ashland, but the h is silent…)

When we did the Explo day camp at St. Mark’s, our little crew performed Ace of Base’s The Sign as a dance number, and Caitlin made a sign to hold that said Slippery When Wet. Even in the awkward middle school days, she made everything she touched cool. I remember a cute boy from Texas named David who had the biggest crush on her!

On kitchen crew, one of her favorite things to do was to make mixed drinks from the soda machine, like different combinations of Sprite, orange soda, etc. I remember her telling me in the mornings about how she had a new recipe in mind for that day.

On a less silly note, even during those adolescent years when everyone was complaining about their parents, I don’t remember her ever joining in except for the mildest of jokes about her mom handing her a banana and saying, “Eat your potassium, Caitlin.” She had the coolest parents, and she knew it, and she loved you two so deeply her whole life.

With all my love and most heartfelt sympathy,
Meghan

P.S. Maryanne, my book club asked me to pass along their condolences. They loved reading Cascade and meeting you, and I know they’ll love reading whatever is next.

P. P. S. On the topic of the signs you’ve been experiencing, have you read this essay from 2015 by Lisa Chase? I thought it was amazing.
http://www.elle.com/life-love/news/a30986/losing-my-husband-and-finding-him-through-a-medium/ ****

*****More on this later

from Betsy Kemper French

About Betsy: Betsy is a wonderful writer and fellow Emerson MFA grad. We actually never had any classes together, but we’ve somehow kept in touch over the years. She is a beautiful writer and thinker, and this letter really affected both Nick and me. Plus: kittens.

Maryanne,

I have been thinking about what to write to you. It’s silly—there’s no obligation, and I’m on the periphery of your life. I never met Caitlin. I don’t know your friends and family. And yet, I feel a powerful connection to your story. It’s not just me. Friends of mine who don’t know you at all became readers of your blog, pulled into this miraculous, tragic, and painfully beautiful journey.

I’ve written before about connections—between people, animals, nature, events. It can’t be scientifically explained, but they are everywhere, and I feel the most peace when I wonder about them. Your writing through this blog has allowed me to feel so many connections with people I’ve never known. It’s like what a great novel does: we get to know and love the characters like they were in our own lives, like we have had experiences and memories with them. You’ve allowed that with Caitlin and all the other “characters” in your “story.” Yet, all of these people are real, and so our connection to them is real, strengthened by your honest writing, the pictures and videos, the text messages, the program from her service. So, is literature allowing us to mimic these connections that we should have in our real lives? So much about your writing has made me ask big questions.

Here’s one way my connection with Caitlin has affected my life. The other night, my youngest daughter, Charlotte (you may remember: “I AM THE BOSS OF ME”) was having trouble getting to sleep. She is so bright, creative and funny, but suffers from a lot of anxiety, even at the young age of nine. I sat on her bed taking some deep breaths with her. Her fear makes me anxious too, and I don’t want her to feel that. So, when I’m trying to stay calm, I often image an angel—yes, the stereotypical one with the wide white wings, surrounded by a golden glow—standing just behind me, putting her hand on the middle of my back. I imagine her light coming into me and calming me, and then that light traveling to Charlotte as I stroke her head. The other night I had that same image, but this time—I hope it’s okay to tell you this—Caitlin came to mind. It was her light and strength that made me feel good and steady. It was her light that traveled from me into Charlotte’s little body. I hope you don’t feel this is “using” her story or exploiting it in any way. But through your writing and hers, you created a stunning work of art that offered her to all of us. St. Caitlin. St. Kitten.

But it’s not just me. My friend Kate Kertscher follows your blog as well. Her oldest son has been asking for a kitten of his own for some time. Kate has three kids and a large dog and an old cat and a very busy life, and was hesitant about adding another creature to the chaotic mix. Yet, the other day when I spoke to her, she said they decided to go ahead with it. She said, “I just thought of Caitlin, and it made me realize how silly I was being! Of course we should get another cat!” **** Seems appropriate too, that it’s a kitten.

So, we are carrying her too, in little ways, but still. Thank you.

I wish I could give you something back, some advice, but I can’t. I haven’t been through anything close to your loss. I haven’t been a mom as long, or a mom who has had to deal with such tragedy. But I can still say what comes to mind, what I hope will help as you make your way through these raw, painful, early days of loss: Stay close to nature, Maryanne. The kind of nature where you can taste the dirt and feel the salt breeze on your skin. Smell the rain or lightning. Feel the snowflakes on your face. That is where I most strongly feel the people I’ve lost in my life—even if they weren’t nature lovers themselves. I know you will feel Caitlin in the silent majesty of those redwoods, where it seems time has stopped and their powerful size reminds us we are not the center of the world, but a small part of something unimaginably intricate and beautiful. The souls of those trees reach out to ours—all the same somehow. I bet you will feel her soar through you when looking at the gorgeous coastline, the sunrises and sunsets, whether in California or here at home.

And keep looking for all those signs of positivity and love. They will always be there.

My thoughts are with you and Nick and Caitlin, wherever she may be.

XO
Betsy

*****Update: the boy got TWO kittens

from Ellen Tarlin

About Ellen: Ellen and I met at Emerson when Caitlin was 8. Ellen watched Caitlin grow up. This is a snippet of a recent note.

I remembered that when I was raising funds for my friend who had brain cancer, Caitlin donated. And when I was spreading the word about fundraising for my friend who had lost her husband, Caitlin donated. She was the last person I would have asked for money but one of the first to give.

Love and peace,

–M and N

JANUARY 11–Zooming Out w/Caitlin, post-Obama

Here in California, I’ve been waking up way too early—4:30 or so, and now that Nick and I are finally together again, I try to be quiet for his sake. But the sun doesn’t rise till 7, and those dark hours can be terrible. This morning I tried signing onto Facebook, but all the bleak posts about last night’s farewell speech made the day (life) ahead feel particularly despairing.

I was thinking about the fact that Caitlin had had so much meaningful correspondence with others over the past two years. Recorded correspondence. I have little of that, obviously. Our conversations of the past three years–her most contemplative time–were all in real time.

In the dark it’s easy to panic, and that’s what I did. I was seized by this urgent need to scour through her Gmail and find all of her writings until I realized: I can’t just read through her private stuff.

Then, literally then, I got an email from Andrew, a forward of an email from Caitlin this past July where she had linked to an article she admired and talked about her own perspective. With his permission, here it is:

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: July 25, 2016 at 10:20:47 PM EDT
Subject: Zoomed out

This sums up everything I think about the state of the world and life and how I think – only this guy articulately wrote it and has all the facts at his fingertips to back it up. I am only an amateur historian. With all I know cobbled together from years of art history combined with an obsession with organizing time in my head – decades, centuries, eras. The entire thing has always been a visual structure in my head. Some day I will draw it for you. When I picture us now in 2016, I pull back. I always pull back and picture myself in time and in space geographically. It makes me removed enough (like this guy) to ultimately not feel that there is much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime (whether it’s my only lifetime or one of many, doesn’t matter) to survive this time?

I am fascinated by this kind of thing. By the ebbs and flows of history. By patterns and by people and all of the stuff he talks about. I guess it’s harder for many people to think in that zoomed out way. For me – it was a mechanism I cultivated as a way to deal with being sick … I’d zoom out, see my own smallness, realize it’s all been done before and will be done again, and I could relax, and enjoy my life now. Like why I like graveyards. And reading about the holocaust. I like reading and thinking about the ebbs and flows of human suffering, living, dying, living again…

History Tells Us What May Happen Next

I don’t think it matters if this guy is “right” about brexit or whatever the defining moment will prove to be…or even if this time really will end up being a catastrophic time (ahead of us). I kind of feel it might be. But I think his way of thinking is a good one that I relate to a lot. And wish more people did. But then, we wouldn’t have the same world ….

Love my Andy.

I’m going to renew my Irish passport. In case we have to skip out of here. ❤️✌🏼️

Sent from my iPhone

And here are some random things we sent to each other:

screen-shot-2017-01-11-at-3-17-44-pm — *Moral Bucket List*

screen-shot-2017-01-11-at-3-14-43-pm — *From Patry Francis’s Instagram xo*

JANUARY 4 –Bird and Bindi

I can’t even begin, right now, to sort out all of the almost supernatural occurrences of the past weeks, write them down, pass them on. I know I am meant to sort all of it out, in words that make sense, to ultimately help other people. And I will do that. But right now I’m super tired.

Still, to remind those who care: there is work to be done. As everyone has been informing me, France is now one more “opt-out” country—-meaning you’re an organ donor unless you opt out. We are going to work on fixing as much of the broken transplant system in our own country as we can. I’m grateful to everyone who has volunteered to be part of the army, and we will be in touch.

For now though, Nick and I are going to California. My wonderful brother will be warming the hearth fires here, minding our house, so we don’t have to worry about leaving it untended. Caitlin’s tree will be up through Twelfth Night and beyond.

California is a place Caitlin and I had planned to visit ‘after transplant.’ (How easily that phrase had become part of our everyday conversation; seems sad and naive now, but I’m grateful for our optimism. It kept us going.)

Oddly, neither she nor I have/had ever been to California, so we will take her with us in the only way we can: spiritually. We will drive up the Pacific Coast Highway, stay in Big Sur, and eventually visit Jess in San Francisco. We will see redwoods, and honor the one so foolishly cut down by the arrogant and sorry young souls who make up the current administration of Boston Children’s Hospital.

A few years back, in her beloved Paris, Caitlin bought herself a tiny, bird-shaped ring. It became one of her most treasured possessions. I just couldn’t bear to put it into the

<< coffin, horrid word>>

Instead, I’ve tied it to a necklace of mine. I added a red bindi from the little sticky-pack Jess brought back from India. I put the bindi in between the bird’s wings. I will wear it on our trip and Caitlin will be with us up at Big Sur and in San Francisco with Jess, and with us among the redwoods that stupid humans haven’t yet destroyed.

My niece Emily wrote this to my sister the other day:

Know what’s so strange? A few days after Caitlin passed I heard this poem called ‘the art of losing’ on an NPR podcast and it felt really significant to me so I looked it up and saved it and now I’m sitting here reading the writings in Caitlin’s pamphlet from her service and that poem is in there

Later, my sister wrote:

Today is my first day back at working out. I always put in a podcast to keep me on the treadmill and it turns out the first one in my queue was the one that ends in that poem. ❤

These are the coincidences that are not coincidences.

The only omission in the service program was the title and author of the quite-famous poem–which is actually a form of poem called a villanelle, a form that itself, is very hard to master….

ONE ART

by Elizabeth Bishop

The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

–Maryanne

JANUARY 2–Blue Moon

It is a quiet house here tonight. Jess is on her way back to California. Andrew has gone home to Maine. It was a difficult day. We were going to go into the Boston apartment but never did make it out of the house. All I could do was flop from one surface to the next and cry. I mainly lay on the couch in the family room near Caitlin’s tree, TV tuned to a favorite movie, long-ago DVR’d, which Caitlin and I watched half of this past summer when we were home. The Remains of the Day. One of our favorite movies, one of my favorite books.

I let it play on from where we had left it in August, midpoint: all the melancholy of Mr. Stevens’ trip to the west country to try and reclaim all he had lost. The meeting, after 20 years, between Miss Kenton and Mr. Stevens is all about regret and the inability to change the past– ‘Blue Moon’ playing in the 1950s background, all that poignant, post-war sadness.

It reminded me that before Andrew left today, as he packed up his truck, he found a note from Caitlin in his glove compartment, a reminder for all:

JANUARY 1–Everybody Sees the Wind Blow

I have been sending Caitlin text messages:

I love you.

Where are you?

I love you.

Before that, when she was mostly unconscious in the ICU, I would write, I miss you, bud. So many things I go to tell you, just dumb things, like Pup. Puppetypuppup. I’m sending these now for us to laugh at later.

Caitin’s name was always at the top of my iMessage window. It seems weird to have to scroll down, down, down to find her. When I look backward through our exchanges, I see that one of her last real ones to me was after she sent her last text for me to post, on December 3.

This person who thought it might be awful to beg for people to pray for her….How did she come to be such an angel?

When you have a sick child, as we did for 31 years, you know you may someday have to face the loss of that child. Your mind sometimes peers at ‘the worst,’ and although you quickly slam the door, painful stuff seeps in through the cracks.

I always knew I would likely outlive Caitlin. And always knew, on one level, that Queen’s “These are the days of our lives” would be a part of a film tribute that my brother Michael would eventually create in her honor. I could never really listen to that song, though I loved it. Still, for all the bracing I had done all her life, I always had faith we had more time. So it was numbing and heavy to plan a service and create a program for that service—something that had to be real and special and unique. To choose the music and photos for Michael’s film tribute.

As I said in an earlier post, Caitlin wanted a mausoleum. Who, these days, wants a mausoleum? And who knew that just three miles from our home was a gorgeous little garden cemetery, built in the 1800s and modeled after Mt. Auburn Cemetery, that offered a mausoleum and gorgeous chapel? We never knew it was there, but it was/is so perfect it could have been built to Caitlin’s specifications.

She liked cemeteries, found them peaceful. When she was at BC, she would often go to the beautiful Newton Cemetery to study and read. “I visited my friends today,” she would joke.

My brother Michael has long created what we all jokingly, in our family, call “tearjerkers,” films that capture family, friends, lost days. This was his hardest tearjerker yet, he said. He could hardly look at the photos while making it (and my goodness, he put it together in a flash). Uncle Mike and Caitlin shared a special bond, always, but especially in the past two years when he had helped out, so much, with her Prouty Garden fight.

The service on Friday was all Caitlin, exactly as she would have wished. Emotional, personal, beautiful. The chapel was stunning, with its soaring, painted ceiling and exquisite stained glass windows. Large portraits, printed by her special buddy Billy Duffey, graced the walls.

fullsizerender-jpg — *The early Christian art lover in Caitlin loved this service, I know. St. Kitten.*

The space looked like a sacred art gallery. We read poetry in unison. Gary Richardson played slow-tempo acoustical guitar pieces, including a version of Silent Night that he arranged just for her. Many of her close friends spoke, and as they spoke, they all stood so exceptionally strong and tall—-heartbroken even as they summoned the courage to be articulate and passionate. They inspired all of us, especially me, as they spoke to Caitlin’s depth of character. Such wonderful people. As Nick always said, “To meet a friend of Caitlin’s is to meet Caitlin.” Her cousin Jillian spoke for everyone when she said:

When I think of Caitlin’s incredible spirit, there is one particular story that is so deeply ingrained in my memory that it positively shoots to the forefront of my mind’s eye and takes the stage. During visits with my Oma, Brigitte Kelsey, throughout my life, she would always make a point to inquire about my cousin, Caitlin. How is your cousin Caitlin? She would ask. Admittedly, I disliked when most people would ask me this question. The air of pity bothered me, something about it sounded like they were making Caitlin out to be a victim; it felt dooming. I would generally answer in as positive a light as possible. “She’s doing really well”, or “she’s had a tough year but she’s getting much better”, or the fast and deflective “she’s doing well, how are you?” These were my go-to responses to most other people. But my Oma was different. She’d lived through the war, she’d had everything taken from her and she had lived on. Her voice didn’t carry the sound of pity, but of honor. She honored Caitlin. I always answered her honestly, and I always knew that following my answer would come the same tried and true story that would over the years, and dozens of re-tellings firmly assert a particular image of Caitlin in my mind. “I always remember”, she would say, “that day of your baptism. She was running through the church, screaming and laughing and causing a ruckus. She was a wild child. I always liked her.”

Something inside Caitlin just positively glowed. And it’s that glow that I want to talk about. I want to talk about that wild spirit, that bearer of light… that lion-hearted woman, the Leo that she was. It seems to me that Caitlin came into this world as a great bearer of light. And it also seems to me that her light grew as her health struggles grew. And it seems that her light is now stronger than ever, because it’s filling this room.To me, Caitlin more than any other person that I’ve known, inspires me to live life to the fullest. From the day she was born, supposedly, her breaths were numbered. Her diagnosis at two years old let her parents know that her breaths may be numbered. And it seems to me that she made sure that every breath she took was lived as fully as possible.

This is a woman who traveled extensively despite her illness, who brought into her life the kind of deep and loving friendships that have the mark of soul-relationships, who spent her last several years with this incredible man who loved her so deeply and fully, who supported her on her highest path, in her utmost truth. And so, I feel like the gift that Caitlin has brought to us all is the reminder, and even the urging, to live life fully, to not waste a single breath. And if we do waste breath, to not waste more in mourning it, but to forgive ourselves, to forgive others. Kindness and compassion, truth and love, these are what she brought to us as our friend, cousin, niece, daughter and partner.

33 years is just a wrinkle in time, and yet 33 years, if every moment is infinite, is different. When you really think about the depth and fullness of a moment shared in a kiss or a cuddle, in the taste of fresh fruit in the summertime, in the stillness and calm of a rainy day spent watching out the window, or the long hours sitting beside someone you love in a hospital bed… when you think about feeling compassion for another human… none of those moments are contained by time. They are fluid and vague and full and they are what life is all about. And so, Caitlin had 33 years in this life. Maybe some of us have 80, or 50 years, maybe some of us have less, or more than we think. But it doesn’t really matter when you are living life to its fullest. If every moment is infinite. And if you live the way you truly want to live: courageously, with an open heart, focused on compassion and love, generosity… when you invite only positive loving relationships into your life… when you invite in only the experiences that hold you in your essence… then maybe 33 years could be enough, if they have to be.

I trust that Caitlin is on her highest healing path and I trust that she is there watching all of us, saying “please laugh at least as much as you cry.” Life is too good to waste a single breath.

My understanding from conversations I’ve had with Caitlin and also with Maryanne, is that Caitlin was very spiritual, but did not ascribe to any religion. She was more pantheistic. Similarly to how she loved us, she saw and loved the best and what was good, in all religions. I understand that she had always felt an affinity for the Virgin Mary, and I have been asked to lead everyone in a recitation of the Hail Mary prayer in honor of her special connection with the great Mother. As we recite this prayer together now, I invite you to be present with the words as we would be in the reading of a poem, to reflect on the spirit of Mary.

You may click here for the PDF of the service program: Caitlin’s Service Program

And you may click here for Uncle Mike’s live-stream of the service, the recording of which is still available on Facebook:

At the end of the service, Uncle Mike’s film tribute plays for 9 minutes. You can also view it on YouTube: Film tribute

Back at our house, on Friday evening, we lit our traditional holiday barrel full of firewood out on the patio. We burned sparklers and raised them and looked up at the sky. There were a lot of shooting stars that night: quick flashes among the old familiars that calm humans with their always-presence: Castor and Pollux. Orion.

We have received so many messages from old friends, new friends, and perfect (wonderful) strangers. We are so grateful for every word. One particular message, from an old high school friend of Caitlin’s, particularly struck me. He articulated so well what so many people have said about our amazing Caitlin. I have his permission to quote his words here:

Maryanne, I hope you don’t find it forward of me to reach out during such a time of mourning. I read the Herald piece and could strongly relate to your sentiment, “Every friend of hers considered Caitlin his or her best friend.”

Caitlin was always there for me and will always occupy a special place in my heart. Because she was so kind, caring and strong and it made it all too difficult to overlook just how much she had to grapple with. It is humbling and awe-inspiring to read your accounts of how much she quietly struggled and persevered time and time again.

Caitlin touched my life as she did so many others. Her willingness to put others’ need above her own, her caring nature is something I had the benefit of experiencing. In very trying times, she was there for me in a way that no one else would or could be. It is hard to put into words just how much that means. It is clear from the accounts of many others that I was not unique in this regard. What a wonderful gift for all who knew her.

Thank you for raising such a wonderful person. I will carry Caitlin in my heart always. She was a true friend. As you wrote, “All loves are ill-starred, because all are made of time.”

Caitlin was a wise, old soul. Her decency showed a worldliness beyond her years. She had a taste for joy and understanding of suffering. There was an undeniable soulfulness to her, the kind of depth that almost serves as proof of higher beings and callings. Such qualities cannot be measured in time.

We may have met only once or twice while Caitlin and I were at Saint Mark’s, but you are in my thoughts and prayers. Another being touched by your daughter and mourning her deeply.

-Alex Fekula

Thank you, Alex. And everyone who has reached out.

We are now into a new year. 2017. Our first without Caitlin, in three decades. We are sick with grief and I can attest that true grief is a sickness unlike any other. Everybody sees you’re blown apart/Everybody sees the wind blow, sang Paul Simon. But—-but—-but—-the love and comfort of our family and friends has been a wonderful thing. You would think that the holidays would be the worse time to lose a person, but the timing all turned out to be a strange kind of blessing, because everyone was able to be around for so long. We are two weeks into this now, and we have never been alone, will never be alone. Thank you.

🙏

–Maryanne

PS:

Caitlin was shamelessly sentimental about animals and people in need. She couldn’t pass a homeless person without digging in her purse. She always contributed to good causes with no reservations. Here are two charities she fully supported which you may also consider supporting in her honor:

prisonbookprogram.org

gentlebarn.org

DECEMBER 30–Caitlin’s Service Program

For those who would like to take part from a distance, we will be holding Caitlin’s service at 2pm today. I’ve attached a PDF of the program that I put together. I’m so grateful to Caitlin’s dear friend Billy Duffey—who must not have slept a wink the past two nights—who formatted it with all of Caitlin’s favorite fonts and produced it so beautifully. He also printed large, gorgeous photos of Caitlin that are gracing the walls of the chapel. Today is Billy’s birthday, yet he gave us such an incredible gift. ❤

The chapel could not be more perfect: a tiny, non-sectarian jewel that looks like a spiritual art gallery. It is utterly, completely Caitlin.

Click here for the PDF: celebrating-caitlin-dec-30-2016-2

DECEMBER 27–Caitlin’s Services

On Friday afternoon, we will be hosting a private, quiet memorial service for Caitlin in an extremely tiny chapel at the cemetery we have chosen. This will necessarily be a small gathering for our American family and her close friends. At the same time, in Wexford, Ireland, her Irish family will be attending a mass that honors her life.

We will be hosting a much larger memorial service and celebration of Caitlin’s life in 2017, during finer weather, for everyone who loved her and was touched by her life. We would be so grateful if you all would join us then! In the coming months, we will decide on a date and I will be sure to post it here.

Here is another tribute to Caitlin, from the Metrowest Daily News, written by the very compassionate Bill Shaner: Ashland’s Caitlin O’Hara remembered as strong, warm after losing battle with CF

DECEMBER 26–Boston Globe Tribute to Caitlin

Deep thanks to Bryan Marquard and The Boston Globe for writing this beautiful tribute to Caitlin, and publishing it on the front page today: Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33

Caitlin’s death was ultimately caused by her too-long wait. The surgery itself was technically easier than the surgeons had anticipated. That part had gone very well. Her problems were all caused by having been on life support for too long. If she had received those perfect lungs earlier, there would only have been a happy story to tell.

One of the most important lessons that can come out of this tragedy is how vital is the need for organ donor awareness. In lieu of any flowers or gifts to us, please register today to be an organ, tissue, and cornea donor. (The DMV “organ donor” sticker is not enough.) And please help to dispel the wrongheaded myths about donation. Organ allocation is one of the most tightly-regulated and ethical institutions in the country. Register as an organ donor

DECEMBER 24–All is Bright

*“Like the Madonna,” her Irish great-gran would most definitely have said.*

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy. The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

“There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

—Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now. Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

We are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess. Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting. (Herald story)

Screen Shot 2016-12-23 at 6.19.21 PM.png — *This beautifully-lit face! Mother’s Day, 2016*

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come. (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream. We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

–Maryanne