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.

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Bird and bindi

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:

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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.

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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.

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The early Christian art lover in Caitlin loved this service, I know. St. Kitten.

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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.IMG_0748.JPG

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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

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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 29–Soggy Dollar Boat Days

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Update, 12/30. Kitty and Andrew at the Soggy Dollar.

Caitlin never complained. Her not-complaining actually became a problem—we who knew her best honestly could not tell how she was feeling, because she always put up a good, rather jolly front. Andrew would say, “Hey, Kitty, should we go to a movie today?” Or I would say, “Want to try and go out today?” And there would be a flicker across her face, usually of pain, and she would say, “Maybe,” or “Oh, no way.”

So we came up with a system. Around late morning, she would rate the day from 1-10 (1-10 being her version of a 1 or a 10, not a normal person’s). If the day was a 5 or 6, then yes, perhaps, we might be able to take the wheelchair out, later, and go to the museum for an hour, or go see a movie.

If the day was a 2 or 3, as it often was, just showering was going to be tough—-there was no chance of an outing.

(No day was ever an 8 or a 9 or a 10, fyi.)

At one point during the last couple of years, she told me how any time she looked at photos of the previous decade, she could remember exactly how she had had felt when any particular picture was taken. In all those photos she looked great, looked like she was having the time of her life, but she would point and say, “I remember that night. I was desperately hoping that everyone would want to take a taxi.”  Or, “I wanted to run down that cliff like everyone else and jump and dance around the sand and party on the beach but all I could think was, how will I climb back up?”

I was reminded of this, today, when I was looking for photos for a tribute that’s happening tomorrow.

St. John was/is our place. Our happiest holidays were spent there and the happiest of the happy days were “boat days.” We would board a charter boat, with a captain, at 8am, head over to Tortola to do customs paperwork, then make our way to Norman Island and Cooper Island and maybe Marina Cay, always a stop at Sandy Cay, and always, always, ultimately ending up on Jost van Dyke.

Boat days always ended on Jost, at the Soggy Dollar Bar.

In the early days, when Caitlin’s health was okay and she could keep up, these were her favorite days. Here we are, back in 2004, enjoying boat day. We always took a pal of hers on vacation with us, usually her almost-sister Katie, and also always filled our boat with island friends. Those days were the best. The best of the best. I hope that everyone who reads this post gets to enjoy days like those days were: life suspended, wrapped up in hours of unending moments of sunshine and turquoise and laughter and rum punch.

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But: back to the reason I was reminded of Caitlin’s 1-10 system today. I was looking for some boat day pictures. I was doing this because this world we live in is a ridiculously small world.  Jess’s sister Carly is friends with the people who own the Soggy Dollar Bar on tiny Jost. Tomorrow they are going to honor Caitlin with an organ donor awareness day. They asked for a photo to make a banner and so I was looking for a good picture.

We all have 10,000 pictures on our phones and another 10,000 lost in the ether of the last decade. I know that I took photos of Caitlin at the Soggy Dollar Bar, but could I find one? No. I did find this:

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Taken in 2008 on the eastern side of Jost. We were introducing Katie’s parents, our dear dear friends, to St. John. We were all excited to be there together and boat day was going to be the big event. But soon after our arrival, it was clear that Caitlin had caught a virus, despite her always-vigilant precautions.

The night before boat day, she took me aside and begged me to let her stay home in our rented villa. “I’m happy to just hang out here by myself. I’ll be fine. You guys go and have a good time.”

Caitlin was our life of the party. No one wanted to go on boat day without her. I’m ashamed to admit that I didn’t let her not come. I insisted she suck it up. “We’ll make it comfortable for you, I promise. You’ll be so glad you came. I know you don’t want to miss boat day.”

She gave in and we all got on that boat at 8am. And if you look at pictures from that day, you would think we were all having the time of our lives. The rest of us were. But she later told me that anytime she looked at the day’s pictures she could only remember how horrible she felt.

A week later, our trip had been cut short and she had been admitted to Boston Children’s for  what the CF community calls “cleanouts.” Cleanouts are a few weeks of IV antibiotics and chest PT. They stave off the inevitable, give people a boost, and they worked for Caitlin for much of her life. They worked that time in 2008. She “got better” and  we went back to St. John a few more times. Her last trip was with us, and Andrew, in 2013.

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This is the photo I sent for the Soggy Dollar Bar to use tomorrow. I’m glad I never knew, when I snapped it, that it would be the last one I ever took of her there. Because it was a good day that did not deserve one drop of sadness. A great day. We had snorkeled and lunched and snorkeled some more and swam (swum?) onto Sandy Cay and had just landed at Foxy’s for rum punch and Roti. We were about to get back on John Brandi‘s boat to end boat day, as always, at the Soggy Dollar.

So everyone who  will be at the Soggy Dollar tomorrow for New Year’s weekend: Thank you! Honor Caitlin and don’t be sad. Do remember organ donation and how important it is. Spread that awareness. But savor your delicious painkiller, the nutmeg, the coconut milk, the rum and the sunshine. Caitlin will be cheering you on, all the way.

 

 

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

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Bird, by Caitlin, 2014